tag:blogger.com,1999:blog-56915766509449576252024-02-23T18:03:59.051-08:00Breathing for Baby Clay: Our CDH StoryEric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.comBlogger77125tag:blogger.com,1999:blog-5691576650944957625.post-69850550356690120192023-06-27T13:03:00.004-07:002023-06-27T13:16:54.104-07:00Slowww recovery days and a trip back to Florida..Hey y'all...just wanted to give an update on Clay, as we are a little over two weeks post-op now. We were discharged from the hospital exactly one week after surgery, on Friday, June 16th. So, we've been home for a week and a half now! We were discharged around noon, headed straight towards I-75 North out of Tampa and made the 13 hour drive home--arriving home around 2am. The kids were such troopers. I was worried about Clay's comfort on the way home, but he was able to stretch out and get a few good naps in along the way. <div><br /></div><div> Since we've been home, Clay has done okay with his recovery. Good, not great. I'd be lying if I said it's been smooth sailing and he's not been worrying me. His belly has been giving him a lot of pain ever since surgery. Even on the Thursday before we were discharged from the hospital, I asked them to do an abdominal x-ray, just to be sure everything looked okay with his intestines and there weren't any blockages or obstructions. Things looked okay then, thankfully, so I felt okay with bringing him on home. Once we got home, I knew he'd get better rest and have more comfort to heal up faster. </div><div><br /></div><div>Clay's belly has continued to cramp and ache and bloat and just been so uncomfortable since being home. He's not felt like doing anything except lay around, and his color in his face has been so pale. It's been pitiful and disheartening, but I've tried to keep telling him (and myself) that everything will line out in time. He had a lot of anesthesia during the 13 hour surgery, and they rearranged a lot of organs! Not to mention, his diaphragm is 4 inches lower than previous--which does allow more room for his lungs, but is also compressing his abdominal organs more than he's ever had in his life!</div><div><br /></div><div>But last Wednesday, Clay really gave me a good scare. We were getting ready to go to our local pediatrician clinic for a check-up, when he got white as a sheet, broke out into a cold and clammy sweat, he said his vision was blurry and he nearly passed out. I was about to call an ambulance! But I checked his oxygen levels and they were fine, and he started to come to a little more, so we just hopped in the car and headed to town. By the time we got to the clinic, he was looking a little better. So we went on with our appointment and I also called the CDH team at JHACH to get their advice on what to do. They recommended taking him into the ER for blood work and x-rays, so we headed to Marcum and Wallace. We spent all day there getting checked out, blood work, chest & abdominal x-rays, and also ended up getting a CT scan done to rule out infections or obstructions. Thank God, everything came back okay. The ER doctor consulted with Dr. Kays directly a few times, so that was relieving to us as well. They said there was some impaction in his bowels and recommended we give some mild laxatives to help. His white blood cell count was also elevated at 28,000, but they said it was likely elevated from post-op and the foreign object (gortex patch), and we weren't given any antibiotics or anything. </div><div><br /></div><div>We've really been trying to get him hydrated and get him good nutrition through his g-tube, even though his belly seems to ache more after a feeding. I've been giving him prune juice to help with constipation, and I've also cooked up some pork liver to add into his g-tube blends to give him extra dose of iron, in case he's slightly anemic and maybe that's contributing to his fatigue and paleness. We left JHACH with the plan for decreasing his g-tube feedings throughout the day and only giving them in the evening, as a way to encourage him to follow his hunger cues and internal desire to try to eat by mouth. Which sounds great in theory! But actually putting it into action is a different ballgame. I guess I'm too much of a softie or something, but I could tell the plan was stressing Clay OUT! For one, the sensations of chewing and swallowing are so foreign to him, and often makes him feel gaggy. Trying to do that after a major surgery, when he hasn't fully healed up and doesn't feel the best on top of everything just didn't feel like good timing. So, we've put that plan on the back-burner, and are currently just working towards getting his g-tube feedings back up to the volume they were prior to surgery. Which has proven to be quite difficult too. Prior to surgery, we were feeding him about 16oz of food at a time, 4 times a day. We've had to slow that wayyyy down over the past couple of weeks, but he's currently up to about 8oz at a time, and we're doing that about 6 times a day. </div><div><br /></div><div>The end of last week and over the weekend have continued to be about the same--at times Clay nearly doubles-over in pain from his belly. His color has continued to be pale, and he just feels all-around blahh. Yesterday, we had another follow-up with the NP at Children's Clinic, and another phone call with our surgeon, and we made the decision to take Clay back down to St. Pete. to have more bloodwork and x-rays done there - so Dr. Kays can see him in clinic, in person. It would sure ease our minds a lot! His appointment is this Thursday, June 29th and this time, just Eric and Clay will be flying down by themselves, and they'll FaceTime me during the appointment. I'm praying and believing every little thing is gonna be alright. I just want our boy to heal up and get better! I'm praying TIME is all we need. Please keep us in your thoughts and prayers - for safe travels for them, and for good results at the appointment. We appreciate y'all so much!
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXT1xEz22vkwAOTKNEtFde-vboeAUWbda1PCjG-bejqzhucjRjCyMPUk8dlC3DXaEcGh9Gizpw21rH1NGyms8oS49_HFU5E2Sp-_H5mHZmD2Dz9ftH-yn2WZCsIj-TTk76wkagURqEpCZvgh5UN7dcdja2Xyh6V2KbfATyYvtlfZssp8oDPBbNtKnf/s4032/IMG_3878.jpeg" style="display: block; margin-left: auto; margin-right: auto; padding: 1em 0px; text-align: center;"><img alt="" border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXT1xEz22vkwAOTKNEtFde-vboeAUWbda1PCjG-bejqzhucjRjCyMPUk8dlC3DXaEcGh9Gizpw21rH1NGyms8oS49_HFU5E2Sp-_H5mHZmD2Dz9ftH-yn2WZCsIj-TTk76wkagURqEpCZvgh5UN7dcdja2Xyh6V2KbfATyYvtlfZssp8oDPBbNtKnf/w240-h320/IMG_3878.jpeg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Clay at the ER on Wednesday, poor bud is tired of hospitals and needles!</td></tr></tbody></table></div>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com2tag:blogger.com,1999:blog-5691576650944957625.post-9003562753678651792023-06-12T18:02:00.004-07:002023-06-27T13:10:17.956-07:00Post-Surgery Update Here we are — day three post-op, and Clay is doing very well, all things considered. His recovery this time around seems to be going a little more smooth compared to past surgeries… or maybe we’re getting used to the process and know what to expect? An unfortunate likelihood, I suppose. But we are hoping, praying, knocking on wood, and crossing all of our fingers and toes that this is the LAST diaphragm repair surgery Clay ever has to have! Please Lord, Let it be! <div><br /></div><div>We are still shaking our heads and in disbelief that Clay spent 13 hours in the operating room on Friday. We had to be at the hospital for the pre-op process at 5:30am, then we didn't get back to see Clay post-operatively til 10pm! So it was an incredibly long day. Thankfully, we were updated via text almost every hour with the same kind of brief message - the procedure was still in progress and Clay was doing well. As the day wore on, I was wishing those texts were a little more descriptive though! The doc did consult with us face-to-face a couple of times throughout, so that was also a relief. </div><div><br /></div><div>Dr. Kays was really pleased with the end results, but I reckon it took a lot of pondering over his anatomy to even get to the point to place the patch. His exact words were - it’s a mess in there. 😅
He found more native diaphragm muscle that had not been used in other repairs, so he was glad for that, but that native muscle was about 4 inches lower than the patches that were placed before. CT scans and ultrasounds from when we were here in October had pin-pointed his left kidney as being sandwiched up next to his spleen, which was all positioned in the way of where he wanted to place the new patch... So we spent the majority of the day thinking he was going to have to relocate the kidney and risk the likelihood of injury and/or losing the kidney all together during the move. But after a lot of searching and pondering, they found his actual left kidney in his belly, surrounded by intestines, and it was so hidden that it hadn’t actually shown up on previous scans. What they thought was kidney was actually an extra lobe or “cleft” in his spleen, and so once he realized that, Dr. Kays was able to move all of the organs down without a problem. He did cut away all of the old patch and started totally from scratch. </div><div><br /></div><div>The gortex patch he put in place covers the entire left side, and is attached to the rim of his existing diaphragm muscle, and then he had to sew the patch to his ribs on the backside of his diaphragm because there was no muscle tissue there. The doctor thinks he got a great patch sewn in all the way around though, and with it being 4" lower than any previous repairs, it allows a lot more room for his left lung to expand too! Even though it's a patch and obviously not a working diaphragm, it's still a barrier and in the proper placement, and should do better than he's ever had before!</div><div><br /></div><div>After surgery, Clay was sent straight up to the CDH floor—-where everything runs like a well-oiled machine. It’s been so wild to be in such a specialized unit, and I've been so emotional about it. I feel like we definitely made the best choice to bring him down here and I’m so glad we did. I cannot express how grateful I am to the whole OR team for their diligence and dedication to seeing that Clay’s repair was a success. I can’t imagine what it’s like to do their job! But I am so so thankful, especially to Dr. Kays. He has repaired over 600 babies and kiddos with CDH and has amazing statistics for their success. That’s exactly why we brought Clay here - to a hospital that has so much experience witb CDH!
Overall, Clay has had a really great first few days of recovery. Hopefully it continues! He will have his chest tube pulled tomorrow, which has been draining fluid/blood from around his lung. Hopefully tomorrow we can start a little bit of food through his g-tube, and get him up and walking the halls a lot more too! He is so strong and brave, I am always amazed by him.
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As always, thank you all for your thoughts and prayers! I always read the comments on Facebook with Clay and I know it brightens his spirit so much to know how many cheerleaders he has. Peace and love to all our friends! We love you all!
</div>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com0tag:blogger.com,1999:blog-5691576650944957625.post-85418758767022864622023-06-08T03:25:00.003-07:002023-06-27T13:11:13.121-07:00CDH Reherniation Surgery #4Tomorrow is the big day - Clay will be going into surgery at 7am tomorrow, Friday, June 9th, with Dr. Kays at the Johns Hopkins All Children's Hospital in St. Pete, FL.
We have already made our way down to Florida and have been able to enjoy a few days of fun before the not-so-fun surgery and recovery time. <div><br /></div><div>Clay has been in good morale overall, just nervous to be under the care of a new doctor that he doesn't know as well. He really amazes me with how well he's handled this looming date of surgery. I know we'll all be a ball full of nerves today though, as we move into a room at the Ronald McDonald House - it's all feeling more real.
We are asking for all your good thoughts and prayers for Clay, his doctors and care team, and all of us family too, as we get him patched back up again. </div><div><br /></div><div>Pray that the doc is able to find the best tissue to adhere the gortex patch to, so that he will not have another reherniation! Pray that his organs and bowels that are being moved around are shifted safely and without obstruction or injury. Pray that Clay's recovery is quick and goes smoothly, and that his mind is at ease.
We were told to expect to stay here for at least 2 1/2 weeks for surgery and recovery. We are a family of home-bodies so we're all already homesick lol. I am proud of us though, for taking the plunge and making this trip happen, even when it's not easy to be away from comforts of home, or for Eric to be away from work for so long. I pray we've made the right decision and it will all be worth it for Clay to be seen by the CDH specialty team and that this is exactly what he needs to help him live his most fullest and healthiest life. </div><div><br /></div><div>Thank y'all, as always, for loving and praying and lifting up our family. We always appreciate you all! I'll update again after surgery. Peace and love, dear friends!
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</div>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com0tag:blogger.com,1999:blog-5691576650944957625.post-42161393128605177652022-12-02T09:32:00.000-08:002022-12-02T09:32:23.123-08:002022 Update <p>Here we are, over two years since the last update on Clay. No news is good news, right? He bounced back from that last surgery in 2020 like a champ, and aside from trying to dodge the crazy COVID bug for the past two years, our lives have been relatively quite and normal, thank God!</p><p>Oh yeah, except we did add another little bub to the family! Mr. Miles Robin was born last September 2021 and has just completed our family in a way I couldn't have ever imagined. There's 10 years between him and Clay, and 8 years between him and Oaklee - it's been the sweetest thing watching them all dote and love on him. Clay has been wayyyy more involved and loving to Miles than he ever was with little sis, haha. Him and Oak still fight like cats and dogs. </p><p>Clay did have a really nasty respiratory bug back at the end of May 2022, that put him in the hospital for a few days. He was diagnosed with bacterial pneumonia, and given antibiotics, extra oxygen and lots of nebulizers and inhalers to help him get over it. It hit him crazy fast and was very scary to see. The night we decided to take him into the ER, he was having coughing fits and oxygen levels were into the 70s. We'd never been in that situation and not had back-up oxygen to help, so it was super scary. He was scared, too. I'll never forget him saying to me the morning we took him to the ER - through tears, "mom, you know how some people only live to be a young age, that's what I'm afraid of." Y'all. It's heartbreaking that a child even has to think those kinds of thoughts when they're sick! He was retracting and working so hard to breathe, I was afraid he was going to have to be intubated because he was struggling so much. Looking at the x-rays, I also feared reherniation. His little left lung was so hazy & cloudy, and I'm pretty sure I could see bowel loops up high. But our surgeon tried to reassure us it was just his floppy diaphragm, which sits much higher on the left side. Still, the thoughts of reherniation had been in the back of my mind ever since.</p><p>It took a couple of weeks, but he bounced back from that illness pretty well. We went for a follow up with the surgery team at UK in August, and while his left lung had cleared up from the pneumonia, the x-rays were inconclusive as to whether or not his diaphragm is still intact. The radiologist was concerned that bowels were up, but the surgeon wasn't so sure based on past x-ray images. Because Clay has bounced back to "normal" after his illness, the surgeon recommended that there isn't much rush to do a CT scan or other tests and recommended to follow back up with them in 6 months. </p><p>After that appointment, and taking in all the "what-ifs" - again - Eric and I decided we wanted to reach out for a second opinion, especially while Clay was doing so well, and his case isn't emergent. So, I contacted the CDH specialty clinic at John Hopkins All Children's Hospital, in St. Petersburg, Florida. We wanted to meet with the highly-renowned Dr. Kays & his team, who are truly beacons of light within the CDH community. People travel to this facility from around the world because it has such a positive survival rate, and it's a center that ONLY treats patients with Congenital Diaphragmatic Hernias. That in itself is such a relief to me. CDH is such a complicated diagnosis, and it goes wayyyyy beyond birth. Making this appointment had been something I'd contemplated for years. </p><p>I guess I should also add in - our longtime trusted surgeon, Dr. Draus, recently left UK for a job in another state. We were all very sad at that news because he's literally been the one to do every surgery and procedure Clay's had done in all of his 10 years of life. Now that we're seeing a new surgeon at UK, it was just like - why are we sticking around here and not seeking out more specialized care for Clay? He surely deserves it. </p><p>We went down for Clay's appointment at John Hopkins All Children's hospital in October. We were able to find round-trip flights for our whole family plus my mom and dad, for less than $800 total! So we took the opportunity for the kids to experience their first flights. Our family was able to stay in the Ronald McDonald house right next to the hospital for the 3 nights, while my mom and dad got a small condo right on St. Pete Beach. It was so nice to have them tag along, because Eric and I were both able to go to Clay's appointments while the other two kids stayed with Nan & Pops. Plus, we were able to enjoy a few hours of beach time with them. </p><p>Clay had his CT scan done, and then we consulted with Dr. Kays and the CDH team afterwards. When I say I was relieved, I truly don't know how to describe the feeling of "seen-ness" I had during this visit for Clay. Dr. Kays looked at him not only from a surgeon standpoint, but also looked at his nutrition, his physical growth, cardiology reports, cognitive abilities, it was just very much the "whole picture". </p><p>Then he went through each layer of his CT scan with us, and was very plain to see lots of bowel and other organs up in the left side of his chest. We could see his left lung being smooshed against the front of his chest, with the organs coming up through the back. It was very interesting to see other anomalies in his anatomy, like the way his aorta wraps around the opposite side of his esophagus, and his heart position, and even how large his stomach appeared to be (he'd just been fed some of his g-tube blends, so I guess he was really full). Dr. Kays was very thorough in his checkup and even discovered another issue not even on our radar. </p><p>It was hard to not breakdown in the middle of the appointment, just full of regret that we'd not been there sooner. In all honesty, we'd considered being seen by this team while I was pregnant with Clay 11 years ago, but chose to stick close to home so Eric could still be close to work and to help financially. It's hard for me to not wonder how different his journey may have been if we would've. But, as we've said numerous times throughout the years - everything happens for a reason. And I feel confident we're in the right place now. </p><p>Surgery will be needed yet again, for the 4th time. Dr. Kays said it was not emergent, and the timing would ultimately be up to us. He was adamant that he would be starting from scratch with his diaphragm patch-work. No more plugging holes, and his experience of performing over 600 diaphragmatic hernia surgeries will hopefully be on our side as he tries to find the best tissue to adhere the Gortex patch to.</p><p>I was in contact with the team earlier this week and we're hoping to get the surgery scheduled during the beginning of June 2023. That way he can finish out his 5th grade year normally. Y'all say a prayer for no emergencies along the way, and that we can make it to the surgery date in good shape. It makes my stomach turn every time I think about him having to go through this YET AGAIN. And this time will be so many more levels of new-ness and anxieties as we will be relocating to Florida for at least a couple of weeks. Lots of details to work out still, but I'm hopeful we'll be able to stay in the Ronald McDonald house again. </p><p>I'm hoping to get Clay referred to the Make-A-Wish foundation so we can plan something wonderful for him to look forward to prior to his surgery. Clay deserves everything wonderful. He is truly a great kid, and makes such an impression on everyone he meets - whether they know his whole story or not. He's such a bright child, with an infectious smile and laugh, and a healthy dose of sarcasm and funny banter. I always feel so lucky to be his Momma. </p><p>Y'all keep us all in your prayers as we get the details worked out and move forward. And thank you for reading this big, long update! Peace & love & Merry Christmas, yall! </p><p><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfICGoCXPnuNodHYK75bKw-gFzhCusSIJhxB48ljA_PN418thuqwXf01s1By8ORGeBc3Mosrk-y8nmDkzBrlIha1VMuy9-PIkO39LHRTx0ShCnFtuFAQ3BSxlHxz7Gp_5jtpVTwbTOCPCmHqriUTa7SQBqSJqZ7_cYlnZRlcmVO0E80j6joUvaVw/s4032/IMG-9527.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfICGoCXPnuNodHYK75bKw-gFzhCusSIJhxB48ljA_PN418thuqwXf01s1By8ORGeBc3Mosrk-y8nmDkzBrlIha1VMuy9-PIkO39LHRTx0ShCnFtuFAQ3BSxlHxz7Gp_5jtpVTwbTOCPCmHqriUTa7SQBqSJqZ7_cYlnZRlcmVO0E80j6joUvaVw/s320/IMG-9527.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Oaklee, Miles and Clay on St. Pete Beach</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqFN1iMb0K7HQCZNfNrY509NGWP6eWVCfwHUWWkJm_mda42qA6L68SNHhOQrg5PD_WzyB7bLwO0a3eo1STfJ2lSGa2_-CC6ymZkdXiHT6tkbTwS94UmjyklYQbj37hO13vKDwCMSlAkXD5iBZ_T9SFqeSDzKbOogHO_IrzqsoaUc8oD8o8tKmrLw/s4032/IMG-9285.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqFN1iMb0K7HQCZNfNrY509NGWP6eWVCfwHUWWkJm_mda42qA6L68SNHhOQrg5PD_WzyB7bLwO0a3eo1STfJ2lSGa2_-CC6ymZkdXiHT6tkbTwS94UmjyklYQbj37hO13vKDwCMSlAkXD5iBZ_T9SFqeSDzKbOogHO_IrzqsoaUc8oD8o8tKmrLw/s320/IMG-9285.jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Clay's first flight! He loved it. </td></tr></tbody></table><br /></p>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com0tag:blogger.com,1999:blog-5691576650944957625.post-53629750912099338912020-10-01T14:12:00.006-07:002020-10-01T15:33:01.539-07:00 Home Sweet Home!<p>Hello from the hills! </p><p>We were discharged from the hospital on Tuesday the 29th - one full week from surgery day, and Clay is doing so great. </p><p>While we were in the hospital, we had our hopes up of being able to bust out of there on Monday - but we had a hold-up with getting our extra equipment ready to take home, so we had to wait til Tuesday. We came home with an oxygen concentrator, and a feeding pump to run his food through at a more continuous rate, until we can work back up to the bolus feeds he was getting prior to surgery. </p><p>Clay is still 100% g-tube fed, even before surgery - it's just something we've gotten used to doing after nearly 9 years, but we are still holding on to hope that one day he'll eat by mouth! He's came a loooong way, and we are currently doing feeding therapy every 2 weeks via Zoom, and his therapist is very encouraging that he's making progress and will get there eventually. His interest with eating by mouth is hit or miss, but he definitely has his preferences - roasted chicken and Fruit Loops were his favorites before surgery. Maybe he'll feel like trying some more food by mouth soon, and maybe it will feel easier to swallow now that things are where they're supposed to be!</p><p>As far as the extra oxygen goes, while we were in the hospital Clay was still battling the fluid retention, especially in the space around that little lung - so he ended up getting another dose of Lasix on Monday, and that helped tremendously. As he peed off all that extra fluid, his chest x-rays started looking much better and he started having more breath sounds on the left side when listening with the stethoscope - all good things! By the time we came home on Tuesday, he was holding his oxygen levels up just fine on room-air! It's still a peace of mind to have the equipment at home, just in case. We keep the pulse-ox on him at night to monitor his levels. </p><p>Clay's done wonderfully since we've been home. It was so good for him - for both his mobility and his spirits to be in his own space. In the hospital, he was really getting cranky about getting out of the bed and walking - I know he was bound to be in pain from the surgery, but also just the hassle of walking with the IV/feeding tubes was discouraging - and the lack of stimulating environment. Since we've been home, he's gotten around the house with not much problem! Sitting and lying in different positions have been easier as well. You can tell he's sore, but definitely on the mend. We have a follow-up appointment with Dr. Draus on October 12. </p><p>Coming home with all the boxes of medical supplies and the equipment was a major flashback from Clay's early days. When unloading and trying to make room for all the new goods, I came across boxes and totes full of things I'd almost forgotten about - trach cleaning supplies, Passy muir valves, his little ankle braces for physical therapy, an ambu bag, so many tubes and syringes...so much stuff that was such a part of our everyday life for so long. It just brought me to tears thinking about how far our boy has come. </p><p>He is one strong dude and continually leaves me amazed at what a person can endure. We're still wondering how long his guts were up in his chest, and I still have a hard time believing how this whole reherniation was caught in the first place - It feels like divine intervention. We're all so thankful at how smoothly this operation went and how well he's doing with recovery. This whole experience has led to a better understanding for him - it's kind of like he's able to claim ownership of his life story now. His story is one of struggle, but one of overwhelming triumph too. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB9tTXy-SkOAJjuOtsp8_RS-luyI4ajIMF5zoaGH78OowcIjbpgFIjGMqm0XoGlmJMpqjJc8W8hjZ-zLAlAaosPhKnv4Tsilzg8JEpYt42Ly309gn7fywW2VQvsjFVTJjfUfzekQAyOg/s2048/B4129E47-8181-4662-A50A-BA8160AC0BCD.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB9tTXy-SkOAJjuOtsp8_RS-luyI4ajIMF5zoaGH78OowcIjbpgFIjGMqm0XoGlmJMpqjJc8W8hjZ-zLAlAaosPhKnv4Tsilzg8JEpYt42Ly309gn7fywW2VQvsjFVTJjfUfzekQAyOg/s320/B4129E47-8181-4662-A50A-BA8160AC0BCD.jpeg" width="320" /></a></div><p>We are so, so grateful for all the thoughts and prayers and good vibes that have been poured over our family. The gift cards, food and well wishes have been amazing. In today's current climate, it's hard to scroll through social media and feel positive - but when using it to send these updates and read the comments with our boy, it's truly been a light for our family the past few weeks. We love you all and appreciate you so much. ❤️ Peace and love, dear friends. xoxoxo! </p>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com2tag:blogger.com,1999:blog-5691576650944957625.post-56285049171258320182020-09-26T08:37:00.000-07:002020-09-26T08:37:49.570-07:00Recovery Time<p></p>Here we are, day #4 post-op, and things are progressing slow and steady. Here's a little recap of how things have went: <p></p><p>We were able to bust out of the PICU Wednesday afternoon, and to a regular room on the floor. Things have been stable, and we were able to get better rest in our new room, thank goodness! Clay started spiking a fever on Thursday and had a pretty crummy day that day. He wasn't tolerating anything on his tummy at all (even stomach juices) so they set the g-tube to drain and that seemed to help alot. He also had more fluid around his lungs so they were closely monitoring that and trying to get his JP chest tube to drain adequately, and taking chest x-rays to make sure his lungs aren't getting too flooded. All these issues are to be expected after a major surgery.</p><p>Friday was a much better day - he rested very well overnight and woke up looking much more perky. He even got out of the bed and walked down the hall and did great! He sat up in a chair for a good part of the day, too. As bad as it hurts him to move around, we really need him moving so that he can move fluid out of his tissues, and also help wake up his guts. We were also able to start his g-tube feedings at 20ml/hour continuous feeds, and he's tolerated that okay so far! He's had a couple of pukes after trying to give Tylenol through his g-tube, (about 14ml all at once) so we've had to resort to getting Tylenol rectally. Just another reminder that we've got to go slow with his guts.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik-dv9-NvwH3QZr5ZpSpfkyNzoHyLkWR4VHwLxh1aBT1YjrAGZAh3c0bdFwOXYoFU5WWhSmVJH7UWEXOaSt6VQk8bboAojPGtc096N3MlHopzSMS24AHtRVdY2RJGclBHigjMrD0b9EA/s2048/0D03EC40-25CA-42B5-BD9C-6142A08CC876.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik-dv9-NvwH3QZr5ZpSpfkyNzoHyLkWR4VHwLxh1aBT1YjrAGZAh3c0bdFwOXYoFU5WWhSmVJH7UWEXOaSt6VQk8bboAojPGtc096N3MlHopzSMS24AHtRVdY2RJGclBHigjMrD0b9EA/w320-h240/0D03EC40-25CA-42B5-BD9C-6142A08CC876.jpeg" width="320" /></a></div><p>Friday evening, he felt like playing a little Fortnite so that was a big pick-me-up! He was able to talk to one of his buddies online, and his voice just sounded a lot stronger than we've heard since surgery, so that was sooooo good to hear. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKGVoQVk-tAW-nRkuwHHB4W8fawj-sBFFDvJM4DNNb-2Xcx1Dn2dcxYv4wycPgHbpEcCnsjozqng8hi3ybKjpUbsEyFon9M8At6b6otHzkhE0HVfjGxv198IFXDDWHj4koOvmYunsj_g/s640/CEEE1EFC-1039-43DF-AAF1-1A292AFF157B.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKGVoQVk-tAW-nRkuwHHB4W8fawj-sBFFDvJM4DNNb-2Xcx1Dn2dcxYv4wycPgHbpEcCnsjozqng8hi3ybKjpUbsEyFon9M8At6b6otHzkhE0HVfjGxv198IFXDDWHj4koOvmYunsj_g/s320/CEEE1EFC-1039-43DF-AAF1-1A292AFF157B.jpeg" width="320" /></a></div><p>Overnight, he seemed to have a hard time getting comfortable and wasn't able to rest too well, but in this morning's interactions with me and Daddy, his nurses and doctors - we can definitely tell he's getting some of his sass back :) little man is so funny. His urine output has also been low, despite all the IV fluids he's been getting. His body is obviously retaining most of the fluids because he's looking pretty puffy today. So during rounds today, it was decided to give some Lasix to help him move the fluid, and also some milk of magnesia to help him have a bowel movement. So we'll do that first and then if things go well, we may be able to up his feeds a little! Crossing our fingers and toes he tolerates everything today! </p><p>Clay's getting some good pain meds through a PCA pump, and also Toradol and Tylenol every 6 hours, so thankfully his pain is being managed okay. He sure is a trooper - and just the best little patient - not afraid to speak up for what he needs! The nurse and doctors all comment on how mature he is, and he has won over more hearts, per usual. </p><p>Even though we had some initial hopes of getting home this weekend, I'm gonna go ahead and say that's not gonna happen. We've still got a ways to go and a lot of meds and oxygen to wean off of. We're okay with hanging out, though. There's no rush and we want to make sure he's good and ready! Our surgeon is pleased with his progress and says Clay's still way ahead of where he thought he'd be at this point! </p><p>We are so grateful for everyone's prayers and love and good vibes sent our way. </p><p style="text-align: center;"><img border="0" data-original-height="480" data-original-width="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaapvr-2quPJAvBToOnQuhcepbg_P4VgK7ASjYYwIwEfVtxqvKm9pwShDAB-jMBAkDbSpfBxUMOlByoY1yna6Kk2Xnt_ztWKtPb6wD8AgefMezF0I2RsdORnK-mSJ0ATIcQh_gW-uGJA/s320/6FF5C100-C5C4-4E96-908F-665A501716D9.jpeg" width="320" /></p><p>Y'all have a good weekend, take some deep breaths, and hug your people tight. Peace and Love, dear friends!</p>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com0tag:blogger.com,1999:blog-5691576650944957625.post-10600590352030677842020-09-23T10:25:00.001-07:002020-09-23T10:25:10.995-07:00Successful Surgery Update<p>Yesterday was Clay's diaphragm hernia repair #3 surgery and what an unbelievably successful day it was! We are still in shock at how smoothly things went, and are so so thankful.</p><p></p><p>In pre-op, Clay got pretty emotional and had some big tears knowing surgery would be starting soon, but after the anesthesiologist explained all the steps for sedation and process for putting in the IVs and giving the medications, he felt better. Poor guy had been worried he'd wake up in the middle of surgery and be able to see and feel everything going on. He got wheeled off to the OR around 8am in good spirits, which definitely made it easier for me and Eric. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Z1F-pxawfAbaZ5UVMPwMZrOLiLmad7GhVdlwUWJyBppBrfh7xHzqvi_U9KjBVyORX8scpJquyVYs_zZGRHd7exHWV49oWR5Imwehg6rXww8VYYIB8HGZF6gPRXz6-dxND2i1f54rIQ/s2048/6F0A6FAD-EFF6-4FD6-8556-54F3B625D47A.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Z1F-pxawfAbaZ5UVMPwMZrOLiLmad7GhVdlwUWJyBppBrfh7xHzqvi_U9KjBVyORX8scpJquyVYs_zZGRHd7exHWV49oWR5Imwehg6rXww8VYYIB8HGZF6gPRXz6-dxND2i1f54rIQ/s320/6F0A6FAD-EFF6-4FD6-8556-54F3B625D47A.jpeg" width="320" /></a></div><br /><p>The waiting game is never easy, but the operating team was awesome about sending updates every hour, so that was a huge relief. We got the same message every update: they're still working, and Clay was doing fine. When it came around to the 1:30pm update, we got paged over the intercom to go to the consultation room. Blehh, those calls always make my heart drop - I never know what to expect! </p><p>We met Dr. Draus in the consultation room and he said things went wonderfully! There was a significant amount of bowel that was up in his chest, but it came down very easily - there wasn't much adhesion or scar tissue, which is what we were most afraid of running into - thank the Lord, that was an answered prayer! Once the bowel was down, he was able to move the spleen out of the way without damage and get a good look at the hole in his diaphragm muscle. It was a 5cm x 5cm hole that had a great rim of tissue around it, so that was wonderful news for his patch work. Draus said he could have pulled the existing tissue together to close the hole, but it would put a lot of tension on the tissue and he didn't feel comfortable with that, so after consulting with other surgeons they all agreed - the best route was to place the Gortex patch. He took pictures and showed us the hole before and after the patch and it was so crazy to see. The culprit of a lot of daggone trials and tribulations over the past 9 years. The patch looked great, and Dr. Draus said he was very, very happy with his work and he didn't think he could've done a better job - I could tell he was very relieved with the outcome. BLESS THAT MAN! </p><p>After Draus left the room, Eric and I just cried big ol tears of relief. Seriously. The amount of worry and dread I have felt over this surgery is hard to admit. Worst-case scenarios have been floating through my mind and kept me up at night ever since we learned about his recurrence. I'm still in disbelief at how smoothly things have went. And at how incredibly BRAVE and STRONG our Clay is. All I know is - the love and prayers surrounding us have truly carried us through, yet again. </p><p>Dr. Draus stopped in yesterday evening to show us some before/after comparisons of Clay's chest xrays - all I can say is WOW. I'm sure Clay feels like a whole new man. Dr. Draus was thrilled with how much that little left lung has opened up. Answered prayers, for sure. </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><img border="0" data-original-height="277" data-original-width="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2irXDA3CNZ_Y_GVnSLa_Tcx8eeHJbE7lEFPQvwSyc5HyS9sf0-AkfPDexzY8yFTbGCIqIJBdkah2qMYPQlRehKIxUZOnCX5DEBXiW9nTSotfv7VRsr85_1Ck88Y9Jg1J-TjSbNHP3lA/s320/BF5553DB-090B-4AA3-8119-BC7068EC26D1.jpeg" style="margin-left: auto; margin-right: auto; text-align: left;" width="320" /></td></tr><tr><td class="tr-caption" style="text-align: center;">After / Before</td></tr></tbody></table><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><p>We should be moving to a room on the floor (out of ICU) this afternoon! I hope he'll be able to get a little better rest up there - I've almost forgotten how impossible it is to sleep in the PICU. Eric and I got a sleep room last night, which was nice to have an actual bed to rest in - but I still woke up at 3:30am and could not get back to sleep for worrying that Clay was missing us. So I came back over and sat with him - but I don't think he missed us at all; the drugs are helping him not worry about much right now. (Maybe I could use some too, haha.) Clay has been resting well all day, so that's what we need - Keeping him as comfortable as possible. Once we're out into a regular room, we'll start with feedings and try to slowly wake up his guts. If things continue to go well, Dr. Draus said he's hopeful we'll be going home this weekend! </p><p>Our Clay Clay has yet again shown us how TOUGH he is! I can't thank you all enough for cheering him on. It's been so different this time around, to have a fully aware, wise little boy, with lots of questions and concerns - but it's been so nice to sit down with him and show him everyone's messages, kind words, and words of encouragement. They've meant the world to him! (And me and Eric!) </p><p>I'll try to keep y'all posted as we go through recovery. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5PKmWv0B6HAPqcqDboB0CE33qrQfXR9DFpAOBwSixUTCex982YOuMzne27vaPJ0R9k-U7ZpKhSxK52ICaMIxl4CPRmBy9M6GwkRJ0mcE5TElkU7LfUo0Z4omhzIFj-3VEnmjrJ3mUOQ/s640/6829D2E0-99C4-442A-8095-6F1EC2F0C4D4.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5PKmWv0B6HAPqcqDboB0CE33qrQfXR9DFpAOBwSixUTCex982YOuMzne27vaPJ0R9k-U7ZpKhSxK52ICaMIxl4CPRmBy9M6GwkRJ0mcE5TElkU7LfUo0Z4omhzIFj-3VEnmjrJ3mUOQ/w320-h240/6829D2E0-99C4-442A-8095-6F1EC2F0C4D4.jpeg" width="320" /></a></div><p>Peace and Love, dear friends! Spread it around! </p>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com1tag:blogger.com,1999:blog-5691576650944957625.post-57924026895062445332020-09-01T05:17:00.001-07:002020-09-01T05:17:56.265-07:00CT Scan Update - Surgery Scheduled<p>Hey y'all - just a quick update on Clay's CT scans yesterday.</p><p>The scans definitely show lots of bowel up in the left side of his chest - like high, high..pretty much all the way up to his collar bone. When Dr. Draus was flipping through the layers of the pictures, we could see Clay's left lung under the bowel. Good news is that his left lung has some good size to it! It's just going to be a booger to get everything out of there and back down where it belongs. We scheduled surgery for September 22nd. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ZwjTz3tyMUZ-RNnJZwHWM4Zkck5jYKhtK90mHklsMkntChDsY3VmCA5fHDN3om8hc4kbsL_916J9CkdLpGjiE_fEE7J_h9cpVS77392yXknhdGFZisa3KuC_gfGQ2vOopxeP4uF5Zg/s2048/F2A6FCFB-BA11-478B-A23E-332A77F1401A.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1677" data-original-width="2048" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_ZwjTz3tyMUZ-RNnJZwHWM4Zkck5jYKhtK90mHklsMkntChDsY3VmCA5fHDN3om8hc4kbsL_916J9CkdLpGjiE_fEE7J_h9cpVS77392yXknhdGFZisa3KuC_gfGQ2vOopxeP4uF5Zg/w328-h268/F2A6FCFB-BA11-478B-A23E-332A77F1401A.jpeg" width="328" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p>Doc will have to very delicately cut away the scar tissue to loosen everything up, and try to not puncture organs and bowel while doing so. Dr. Draus said his biggest concern was the risk of bleeding, as he's maneuvering everything around, especially around the big arteries in the chest. He'll use Clay's original surgery scar, below his ribs to open him back up. Thankfully, this time around, Doc will have a lot more room to work with as Clay is a 65 lb. boy compared to the 7 lb. baby he worked on when he was first born. If there's enough diaphragm tissue there to sew together, he'll do that - but he'll likely have to place another patch. Draus said he's blocking off his schedule for the whole day and reserving the operating room just for Clay that day. I can't even imagine having his job. Can't. Even. Imagine. 😭</p><p>Clay's handling it all like a champ. Of course, he's bummed he has to have surgery - we all are. But he is such an incredibly bright and brave boy. He's full of questions, and it's all leading to a better understanding of what he was born with. He's finding comfort in that he'll get to play video games in the hospital while he recovers. 😄 We're hoping to make a little video of him explaining what's going on, so he can share with his friends. We'll count it as a virtual-learning biology lesson, lol! </p><p>I was so nervous for the CT scan yesterday, knowing it was going to require both oral and IV contrast; I was dreading breaking the news to Clay that he'd have to have an IV. He FREAKS over needles. Since Eric had his foot surgery last Friday (he's recovering well so far, just really sore), I was dreading doing the appointment solo. So a few minutes before we left home for the appointment, Eric pulled up some videos to show Clay about the CT machine and the process for getting the contrast and we told him about the IV. Of course, Clay was super upset about it. But, I was able to talk with him the whole ride to the appointments; it helps him so much to have the knowledge of what's going on with every step. </p><p>Thank goodness, I'm pretty sure we got the best nurses in the unit to get him prepped for the scan. They were so good with him, answering alllll of his questions, and when he asked if there was any medicine they could give him so he wouldn't feel the needle, they pulled out a can of numbing spray. That made Clay feel so much better! When it came time for the poke, he winced and had a couple of tears, but he held still and let the nurse do her thing. I almost cried, I was so relieved. He was so brave with the scan. His sense of humor had the nurses rolling and doting over him, as always. If the appointment yesterday was any indicator of how he'll do with surgery, I'd say we're golden. Clayton Cash is a TROOPER and I could not be more proud of him and his amazing SPIRIT.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB1KjLhXmxqg_ZsYL8vsX4EI8xt4nxFkG_zVoLQH8ChMGDeR7klxeJAye38G7Cj4raHqrOlT7Duuq0QD975XyUmEdIN8sCIgUUAHcl7OHsujNKNEE06h4t18NF4EPdN4ABMzX6u7wgPg/s2048/5A982187-D745-4A53-B1FA-058587A26862.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="410" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB1KjLhXmxqg_ZsYL8vsX4EI8xt4nxFkG_zVoLQH8ChMGDeR7klxeJAye38G7Cj4raHqrOlT7Duuq0QD975XyUmEdIN8sCIgUUAHcl7OHsujNKNEE06h4t18NF4EPdN4ABMzX6u7wgPg/w308-h410/5A982187-D745-4A53-B1FA-058587A26862.jpeg" width="308" /></a></div><p>As always, I am completely overwhelmed and humbled by the outpouring of love and prayers and well-wishes for our family. We are so SO thankful to have such good people cheering our boy on! I'll keep y'all updated. xoxoxo! </p>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com2tag:blogger.com,1999:blog-5691576650944957625.post-67919164213295551722020-08-19T06:58:00.002-07:002020-09-24T06:24:49.106-07:002020 is weird.<p><span style="-webkit-text-size-adjust: auto; font-size: 17px;">Oh hey guys..It’s been a while since I’ve used this space for an update on Clay. Like almost 5 years? Crazy. </span></p><p><span style="-webkit-text-size-adjust: auto; font-size: 17px;">Things have been pretty uneventful, thankfully. Clay’s growing and getting smarter and stronger all the time. He’ll be turning NINE years old in two months! We’ve been pretty cautious with concerns about COVID-19, and I’d be lying if I said I haven’t worried about the “what-ifs” if Clay were to catch the virus. With talk of the use of ventilators and ECMO machines to help COVID patients breathe, it all sounds too familiar and we’d rather not repeat that. </span></p><p><span style="-webkit-text-size-adjust: auto; font-size: 17px;">Well, the news we’ve gotten over the past week has not helped my anxieties. </span><span style="-webkit-text-size-adjust: auto; font-size: 17px;">What an emotional rollercoaster it’s been..</span></p><p><span style="-webkit-text-size-adjust: auto; font-size: 17px;">We went for our 6 month check-up at Shriner’s last week, where we’ve been keeping an eye on Clay’s scoliosis. When the doc showed me the X-rays, I asked if I could take a picture because his anatomy just looks so unbelievably wild. Later that evening, I posted the pic of his X-ray on my Instagram stories, where one of Clay’s former surgeons seen it and sent me a message and said it looked to him like he’d “recurred”. Recurrence or reherniation means the hole in his diaphragm (that he had at birth) has opened up again and his intestines are back up in his chest. </span></p><p><span style="-webkit-text-size-adjust: auto; font-size: 17px;">Here’s the pic for reference: the top one is Clay’s and the bottom is one of a “normal” chest. Wild! </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi3zFcoQ5zCMiVjrCRqJS6NYoGPbpUdRHecdFq31Wgn-3a_9Sb48b9O6HuuTXYlYWO9K6QYE0hLr0qU69ALqNlcWVx7xNAK0GIBJUGRy0ahp5C-m8tEyfzoEqiRLZBq4wBBn-3cWVPeA/s1388/1AAD78BF-AE7D-4CD7-AEB7-96AF550D71B8.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1388" data-original-width="1053" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi3zFcoQ5zCMiVjrCRqJS6NYoGPbpUdRHecdFq31Wgn-3a_9Sb48b9O6HuuTXYlYWO9K6QYE0hLr0qU69ALqNlcWVx7xNAK0GIBJUGRy0ahp5C-m8tEyfzoEqiRLZBq4wBBn-3cWVPeA/s640/1AAD78BF-AE7D-4CD7-AEB7-96AF550D71B8.jpeg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPfN641Odcd7rJbh7NzEg6-lMTUPW828kTXef6U1z7xCIR9avAikzFIG8st9HFrDbmu9OELLUBvoyIYglsEYEPzhmNl-f5MPRoxW9VZK3LOb2ehk6nISA27EzwfO9iAMDNiTjaxmRvxg/s1530/80CB5686-2E72-4600-AE67-06A89E0FD536.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1530" data-original-width="1242" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPfN641Odcd7rJbh7NzEg6-lMTUPW828kTXef6U1z7xCIR9avAikzFIG8st9HFrDbmu9OELLUBvoyIYglsEYEPzhmNl-f5MPRoxW9VZK3LOb2ehk6nISA27EzwfO9iAMDNiTjaxmRvxg/s640/80CB5686-2E72-4600-AE67-06A89E0FD536.jpeg" /></a></div><span style="-webkit-text-size-adjust: auto; font-size: 17px;"><br /></span><p></p><p><span style="-webkit-text-size-adjust: auto; font-size: 17px;">So on Monday, we had another round of chest X-rays and met with our old friend, Dr. Draus. He said he could see a considerable amount of bowel in the chest, which he said was probably compressing his left lung entirely. They could hear bowel sounds in his chest with the stethoscope. Dang.</span></p><p><span style="-webkit-text-size-adjust: auto; font-size: 17px;">Even though he has been doing well and this is something that’s probably happened gradually over time, we discussed the reality that </span><span style="-webkit-text-size-adjust: auto; font-size: 17px;">another extensive repair surgery will be needed to put everything back in place. Dr. Draus said he’d have to block off an entire day to spend operating on Clay because, as always, who knows what they’ll find when they get in there. So we tentatively set a surgery date around the end of September.</span><span style="-webkit-text-size-adjust: auto; font-size: 17px;"> </span></p><p><span style="font-size: 17px;">We all went home and processed the news and cried, and processed and cried some more. We talked to Clay about everything and after the initial shock and anxieties about surgery, he seems to understand what’s going on and how it could potentially help him in the long run. I’m thankful Eric was able to go with us to that appointment because daddy always knows the best way to cheer him up...On the way home, he made a detour by Game Stop to let him pick out a new controller for his Nintendo and some V-bucks for Fortnite. </span><span style="font-size: 17px;">We told him he’d get all the Fortnite playing time he could want during his recovery and hospital stay so that made things better. </span><span style="font-size: 17px;">That little pick-me-up did the trick for Clay’s spirits 😊</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Well, then yesterday morning I get a call from Dr. Draus and he said he had been reviewing Clay’s X-ray again with a radiologist and they were questioning whether his diaphragm has actually recurred; It could be that his left lung is just so small it’s leaving a lot of extra room for things to shift upward and his diaphragm may still be intact, just really “floppy”. So, the latest recommendation is that he will have a CT scan done in the next couple of weeks and we will get better imaging to see what’s really going on in there. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Whew. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">The good news is that Clay is doing wonderfully and hasn’t shown symptoms of feeling unwell. His breathing is normal (for him), his digestion is regular, we’ve had a recent cardiology visit and his heart is working fine. So in either scenario his body is compensating well. If his bowel is up in his chest and we have to have surgery, we hope that will allow his left lung open up more and will help his breathing so that he won’t get so winded with physical activity. But we’re really hoping we can avoid surgery if possible. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">If his diaphragm is still intact and the bowels have shifted upward because of the extra space his little left lung leaves, that concerns me because of the reality that that *can’t* be fixed. It doesn’t leave much “reserve”, especially, if he were to catch the virus. It’s just truly amazing that he does so well with what he’s got going on on the inside. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s1"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;">On top of all this, Eric goes for a pretty intensive foot repair surgery next Friday, August 28th, so he will be down and out for the next few weeks with that. 2020 is just weird. </p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3_HY33MIIPYDxLMWOMh_SOfknCgg4GDJqKMeYkMmh3_K5Ixs5DIpzcHDnmcOYEUNNeyG4F720YHcUOvIgIkb4BtW_lZeYz3zKGCSgSvsmsE0lfoT1-0PMwVLl4MCf37R6X5m6VAIWEA/s2048/3EE622D0-D36B-4247-852B-8E19D09C5A39.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3_HY33MIIPYDxLMWOMh_SOfknCgg4GDJqKMeYkMmh3_K5Ixs5DIpzcHDnmcOYEUNNeyG4F720YHcUOvIgIkb4BtW_lZeYz3zKGCSgSvsmsE0lfoT1-0PMwVLl4MCf37R6X5m6VAIWEA/s640/3EE622D0-D36B-4247-852B-8E19D09C5A39.jpeg" /></a></div><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Y’all just say a prayer for our miracle man and that we get some definitive answers. Our CT scan is scheduled for Monday, August 31, then we will go from there. I’ll try to keep ya updated! </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1">Love y’all! </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><br /></span></p>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com10tag:blogger.com,1999:blog-5691576650944957625.post-89183593429031742392015-11-04T18:23:00.001-08:002015-11-04T19:59:30.935-08:00Clay goes to school!<p dir="ltr">It's been a year...yet again...since I've sat down to update this blog. We now have a little 4 year old man with NO trach, a head full of beautiful hair, and all kinds of spunk.</p>
<p dir="ltr">He has progressed so much since his trach decannulation in June. He talks and talks and talks all. the. time. Lol. He just seems to have so much more confidence...it's great. We decided to wait and see if his trach stoma would close up on its own after decannulation...it didnt.. So we had the revision done about a month ago and it's healed up so nicely!  Now we are officially DONE with the trach saga. It's crazy ain't it? How something can be such an integral part of every day life but after we got rid of the ol' thing we've hardly thought about trach changes, trach care or suction machines since. HALLELUJAH! </p>
<p dir="ltr">Now we're on to big boy things..like SCHOOL! Omg..I'm really having a hard time processing this. His first day is tomorrow! We're starting out slowly..2 hours, 2 times a week.. He's a bit anxious about it but we've really been talking it up and I know he will love it once he gives it a chance. I really feel like he needs the social interaction and the time away from me to help build up his confidence and independence even more. He will do great, I know. </p>
<p dir="ltr">One thing that does worry me is the germs and the crud-catching that comes along with school. A regular ol' cold for a regular kiddo can really take a toll on Claybug..we found that out at the beginning of the year when he caught RSV and we spent a couple of weeks in the hospital and back on the ventilator. I really, realllllly hope nothing hits him that hard this year..it's a different ballgame without the trach and the "easy" access for extra help. Fingers crossed we can sail through the season unscathed. </p>
<p dir="ltr">I feel like there's so much more to update on but that's all I'm getting to tonight. Gotta get ready for our big day tomorrow!!! </p>
<p dir="ltr">Peace and love, dear friends!</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPzWiCtB_k60xhe8WAJIeiCBzK0yYNjSJIbbQSOV28pp1enmRhcZGeODb7gOqx0jkZaVVnTcW2dN3dhL6FrfD57HL7qKqhMx-OfCheV6GCK3-fhLEteWnhyphenhyphenrt5dO2seEpEcztqa6s6uQ/s1600/20151024_145045.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPzWiCtB_k60xhe8WAJIeiCBzK0yYNjSJIbbQSOV28pp1enmRhcZGeODb7gOqx0jkZaVVnTcW2dN3dhL6FrfD57HL7qKqhMx-OfCheV6GCK3-fhLEteWnhyphenhyphenrt5dO2seEpEcztqa6s6uQ/s640/20151024_145045.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsZ8NDNxZwb2FkcQg0k8eQTAesELk491iplRDfEUO4uJskF41Oad4y2Ecy7tKo8ewMcjgjJy4wmwWuWhgeY4e4lT7Cxs1rzAavSkceS3CAtRb3kQjkBTul49KtJlyWcbFnFKwDw4TBBw/s1600/20151023_093452.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsZ8NDNxZwb2FkcQg0k8eQTAesELk491iplRDfEUO4uJskF41Oad4y2Ecy7tKo8ewMcjgjJy4wmwWuWhgeY4e4lT7Cxs1rzAavSkceS3CAtRb3kQjkBTul49KtJlyWcbFnFKwDw4TBBw/s640/20151023_093452.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyrxv6dFFIjBP9nzjJ5puKJiULPUxDGUm2sodKrYHF80DNeeuygNRGi84p6dWobzAQToXGzeiWIgqDbxbT7AFkHVSdHpdBOBfj0OeFIiwd0RbpdhFaAvrqxqR2KVY88T1MGV30-s57ug/s1600/20151024_153232.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyrxv6dFFIjBP9nzjJ5puKJiULPUxDGUm2sodKrYHF80DNeeuygNRGi84p6dWobzAQToXGzeiWIgqDbxbT7AFkHVSdHpdBOBfj0OeFIiwd0RbpdhFaAvrqxqR2KVY88T1MGV30-s57ug/s640/20151024_153232.jpg"> </a> </div>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com4tag:blogger.com,1999:blog-5691576650944957625.post-66008051181937128982014-10-24T05:25:00.003-07:002014-10-24T05:25:33.290-07:00Happy 3rd Birthday, Clay!Clay-bug is three years old! My goodness, where does time go?!<br />
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So much great progression in the past year. Clay did lots of catching up and growing and learning and exploring this year. <br />
-First of all...We had NO major illnesses or surgeries or hospital stays! NONE! Praise the Lord.<br />
-He's up to 32 lbs now, which is almost 10 lbs more than he weighed last year! He's 3 feet tall, too. He just looks so grown up these days.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXaNo5cWhREJbLU4g0CFBCkNAgPIA-usCgDbhJAYoIIgebcF4YgcCDQZkMeLvT-NtWiXDdM97CG-8DKX1azd_Lve1oUS-NlM8hw5VxH5MebtepshC2boy1wT1fPitVf8JSIkxM5NS2dA/s1600/046.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXaNo5cWhREJbLU4g0CFBCkNAgPIA-usCgDbhJAYoIIgebcF4YgcCDQZkMeLvT-NtWiXDdM97CG-8DKX1azd_Lve1oUS-NlM8hw5VxH5MebtepshC2boy1wT1fPitVf8JSIkxM5NS2dA/s1600/046.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Plugging his trach to say, "Cheeeese" :)</td></tr>
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-Clay started walking all on his own in March and continues to get so much stronger (and confident!). I'm just so proud of him.<br />
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-We took a family vacation in May to Tennessee, then a week later we left to visit family in Cape Cod, then we stopped by Nelsonville Music Festival on our way back home. It was such a great trip! Clay had a blast getting to see & do so many new things & we he got to meet new family... he still talks about riding the choo-choo at Dollywood...and he talks about Nanny, and the ocean and Sandy's big dog, and his cousin Le-bi (Levi), lol. We had a great time.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi20sXEYTeJdkgwVOjA6KfCvghkgnM0y_rmI86Kxh1cbAgp-YpN-DE1kHZ2_qs9NSFc6-rqpMBkG9eYIl29EvlsvCGLYZpuuiLl5WZeV_b1U_BzomT_o3x4EYHK9TZpYd3zfeWzEokK5A/s1600/Summer2014+160.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi20sXEYTeJdkgwVOjA6KfCvghkgnM0y_rmI86Kxh1cbAgp-YpN-DE1kHZ2_qs9NSFc6-rqpMBkG9eYIl29EvlsvCGLYZpuuiLl5WZeV_b1U_BzomT_o3x4EYHK9TZpYd3zfeWzEokK5A/s1600/Summer2014+160.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of Clay's favorite things: riding the Trolly in Tennesee with Nan & Papaw</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn8DPoXQnd_0aSHRiDiA9Q2AcgB72pv_y7C0nH-MNMySmExcG5DlM-V7JcS5nl4o27tYQcBNtvXsxQjhzTF7x2rGFIujzzF0LFa7qA82GT-QhvrQdPyV9O74nHevRla61S8XiB6hxjtg/s1600/Summer2014+206.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn8DPoXQnd_0aSHRiDiA9Q2AcgB72pv_y7C0nH-MNMySmExcG5DlM-V7JcS5nl4o27tYQcBNtvXsxQjhzTF7x2rGFIujzzF0LFa7qA82GT-QhvrQdPyV9O74nHevRla61S8XiB6hxjtg/s1600/Summer2014+206.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On the beach in Cape Cod (it was cold!)</td></tr>
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-We played lots and lots of volleyball this summer, and Clay loooooved that too. Our friends are great entertainment and Clay will keep them busy fetching balls as long as they are willing, lol! He'll wear ya out with his ball-playing endurance. He now knows how to bump, set, hit and serve a volleyball though. I'm telling ya'll...he's a natural.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwf6dgjbWMFN6n8j-gTf5qu0kfN7fcTzVMgw-_f7SJuEQRoKhgypOf6rAbXgwiTRHPBxYCjXhNhmCtTkrrlIqq2tnio3kwmiKEwSPjiCg732TBriSlTzvpjIiB4WJZoIW0opxzAPHmoA/s1600/Summer2014+378.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwf6dgjbWMFN6n8j-gTf5qu0kfN7fcTzVMgw-_f7SJuEQRoKhgypOf6rAbXgwiTRHPBxYCjXhNhmCtTkrrlIqq2tnio3kwmiKEwSPjiCg732TBriSlTzvpjIiB4WJZoIW0opxzAPHmoA/s1600/Summer2014+378.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Learning mad volleyball skillz from this crazy bunch!</td></tr>
</tbody></table>
-He loves going to Story Hour at the Library...I think he likes the tradition of going to play at the park afterwards even better :) He LOVES the swing!<br />
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<tr><td class="tr-caption" style="text-align: center;">Playing at the Library. Puzzles suited him just fine until he spotted the kid's computer! </td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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-He talks SOOOO well. His vocabulary is ever-expanding and he asks
questions alllllll the time. Mommy, why? Mommy, what you do-nin? Mommy,
where you go-nin? Mommy, mom, momma, mommy, mom! Hahaha. He just amazes
me with how much he understands and observes and REMEMBERS! Kid's got
the memory of an elephant (is that how that saying goes?)... Kinda
scary, really..lol! <br />
<br />
-Here's a big life changer: Clay is now a big brother!!! Miss Oaklee Mae was born on August 26th. She is perfect and he is quite proud :) He likes to show her off to everyone we meet...I think he likes that it takes some attention off of him, lol. He has done so well with the new addition to the family. I was afraid he'd be jealous and extra-clingy to me, but if anything it's made him more independent.<br />
He'll help me out by getting diapers and throwing them away in the trash can. He also makes sure her swing is always swinging and playing music while she's in there...He doesn't want to hold her or love on her but I do catch him rubbing on her head and checking her out a little more closely when he thinks I'm not looking. ;)<br />
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<br />
<br />
-Big boy is totally potty trained and has been for a while now. He's starting to want to pee standing up though, so it's getting a little messy but he does really well for the most part. He can now pull his own pants up and down so that's a big thing for him, too! <br />
-Clay looooooves to go to Nan & Papaw's house and is a-ok with me leaving him there to play while I go to the store or if me & Eric go on a date. He even stayed all night with them a few weekends ago and didn't shed one tear! It's no wonder though, they way they spoil that boy! He's ruint, I tell ya.<br />
-Most of his days spent around the house he's either watching Curious George, asking to watch George, or talking about the things that George does..lol! He is obsessed. The show is quite adorable though. I learn things from watching it, so I don't feel quite as guilty about letting it occupy him...okay, I do feel guilty...but it helps me out so much!<br />
<br />
It's just amazing how our little miracle man is developing. Someone ran into us out in town the other day and was amazed with how well he's doing...they said, "well, he's just growing right out of it ain't he?!"...I'd say he is, thank God!<br />
<br />
<br />
We have another sleep study scheduled for November 18th to see about trach decannulation. If things have improved since the last one that was done in February, the plan is to do a bronchoscope and check his airway then we will decannulate! I really feel like he doesn't need that ol' thing anymore. I think when it's gone, he'll thrive even more. Hopefully with the eating-by-mouth-situation, especially! He is getting more and more interested in food but still doesn't like textures. I can imagine trying to swallow chunks of food with a trach in would make a person gag and have an aversion, though. So my fingers and toes are crossed for trach decannulation in a couple months! Say a prayer for us, y'all.<br />
<br />
We're having Mr. Clayton Cash a birthday party at Nan & Papaw's house on Sunday around 3. We're doing a little costume party, so Clay will be dressing up as George...I put together a Man in the Yellow Hat costume for Eric too, lol! We'll have chili and hotdogs and birthday cake, and will be doing a hayride with Papaw's tractor...Clay is so excited about it! Come on out and join us!<br />
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<br />So, so thankful for another year with this precious boy. He is such a joy. <br />
Year #2 was a fantastic year... I think year #3 will be even better :)<br />
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Lots of love to you all, dear friends! XoXOXo <br />
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<br />Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com3tag:blogger.com,1999:blog-5691576650944957625.post-6751967625683247282014-03-13T22:21:00.001-07:002014-03-13T22:22:40.831-07:00A giant, rambling update about the past 4 months!I'm a little ashamed that it's been 4 months since I've updated Clay's blog. But, I did just realize there was an entry from December that I started writing that didn't get posted..(!) <br />
<br />
So, let's just pretend we're in December and this is what has been happening:<br />
------------------------- <br />
Clay's bronchoscope procedure he had last month
went well...airways were open & clear, still evidence of immaturity,
but nothing out of the 'normal' so we were free to go home a couple
hours later <br />
<br />
We had a follow-up appointment this
past week and were given the okay to down-size his trach (he's at a 4.5,
with plans to move to a 4.0 soon) and we were also told to start
plugging trials. A couple hours during his awake time, we plug his trach
so it's not being used at all. He has done very well with this!
Coughing is different for him and freaks him out a little, but I think
he'll get used to it. I also think it will be easier when the trach is
out of his airway all together. We're waiting to hear our appointment
date for a sleep study, which should be happening this month...but with
the holidays so close, it may be next year before that happens. Either
way's fine...They just want to observe Clay sleeping with his trach
plugged before decannulation. If the sleep study looks good, we will
have an overnight PICU stay so he can be observed without the trach at
all!!!! NO TRACH! Hallelujah! or "Alllelullla", as Clay says ;)<br />
<br />
Since
we've been plugging his trach, we get to hear his voice quite a lot.
All his grunts and squeals and funny words.. what Joyful, Joyful
noises they are!<br />
<br />
Still no real progress on the
eating-by-mouth-objective. It's just been hard for me to get on board
with the techniques we've been using, mainly the bribery. With our
weekly speech therapy sessions, we will sit at the table with paper
& markers (the boy loves to draw), and we tell him if he wants to
draw, he has to take a bite of the food (which is usually yogurt or
something with that thin consistency)...Clay will eventually take a bite
(and by bite I mean he will lick the back of the spoon, with mouth wide
open), then he'll make an awful face and then finally get to draw with
the marker he chose. We'll do this five or six times until he's had
enough. I just hate the fact that he's not enjoying it. I want it to be
something he enjoys, but I don't really have any alternative
suggestions. If any of my special-needs momma friends want to suggest
something that worked for them, please let me know! <br />
<br />
We
are making some progress with physical therapy...I can tell he's
getting stronger everyday. He actually stood up completely on his own a
couple of weeks ago...In the middle of his room, he just stood straight
up and then stood there unassisted for a good minute or so! It's not
happened since but my mom & dad were there to witness it, so I've
got proof. He's still got some hip-strengthening to do, but it won't be
long til he's walking. Another huge thing for him is that he's been
getting on his knees! He will get in crawling stance, but then will sit
back down and scoot on his bottom. Hey, we'll take what we can get :)<br />
-------------------------------<br />
End of December post<br />
-------------------------------<br />
<br />
Now, fast-forward to March 13, 2014 and here's what's been happening!:<br />
<br />
One of the things that I'm most happy about is the fact that Clay is gaining weight!! He's really filling out and I can just imagine every tissue in his body getting healthier and stronger. He's up to 29lbs now!! He was at 23.5lbs before his Nissen Fundoplication surgery back in October, so I'm sooooooo soooooo relieved to see those extra 5lbs on his bones. You can just tell he has much more strength all around, but especially in his legs. He's not walking independently just yet but it's not 'cause he can't, it's 'cause he won't. Lil turkey just needs more confidence and he'll be walking everywhere. We traded in our gait trainer for a walker in physical therapy, so he has a little walker he uses to get places. It's so stinkin cute.<br />
<br />
Another praise for my big boy: he's doing so well with the potty training! He is very enthusiastic to go pee pee in the potty..it seems half of my day is spent in the bathroom, lol. He does have occasional accidents when he has on his undies or pull-ups, but he does perfect when he's running around naked. He has used the big potty a couple times here at home, but doesn't want to use the big potty anywhere else just yet. Regardless, I'm so proud of him! Our diaper usage has dropped dramatically... just in time for another one!!<br />
<br />
Oh yeah, forgot to mention that news--Clay's gonna be a big brother!!!!!!! I'm about 16 weeks along right now, and we are very excited! We go in a couple weeks for an ultrasound to find out the sex and take a peek at how things are brewing. We found out about Clay's CDH at my 18 week ultrasound, so to say I'm a bit anxious is an understatement, but I've been trying my best not to stress about it. There's only a 2% chance of CDH reoccurring, so we've been saying lots of prayers for a perfectly healthy baby. I've just got a feeling it's a girl, so I'm excited to see if I'm right ;) <br />
<br />
Okay, now back to Clay-news...<br />
So, as far as the trach decannulation saga goes: after the bronchoscope and downsizing of the trach to a 4.0, we stayed overnight for a sleep study back in February (on Valentine's Day!). The purpose was to observe him overnight with his trach plugged, meaning it's completely closed off so he couldn't breathe in or out through his trach at all. This is not something we ever do while he's sleeping, so I was anxious to see how he'd tolerate it. Well, the sleep study went leaps & bounds better than I thought it would. They had the awfullest amount of electrodes hooked up to him and that sensor across his lip and those belts around his belly... I figured he'd be tearing them off and restless all night, but he fell asleep relatively quickly and slept okay throughout the night. He is such a well mannered and content little man, I don't know why I doubt him, lol!<br />
I hated not having any monitors in the room with us because I couldn't see how he was doing number-wise! But I asked the RT a couple times and he said his oxygen levels were in the low 90's the majority of the time, so that was good news. Our wake-up call came at 5:30am that next morning, so we were both kinda grumpy when that happened, but hopeful for good results.<br />
Buttttttt, it's not looking so promising as of now.<br />
We had a follow-up appointment with the pulmonologist at the sleep clinic today, which also happens to be the same doctor we've seen regularly in the pulmonary clinic for the past year. So when he asked me, "who do you normally see over in the clinic?", I wasn't too happy to reply, "umm, you do". Granted, we have seen a different doctor before, but he didn't remember THE Clayton Cash?!?! Ha! All jokes aside, I feel like we should have a closer relationship to Clay's pulmonologist than we do currently and I've felt this for a while, but this visit today confirmed as much. Maybe I'm just being bitter about the results he gave too, I don't know. I just have a lot of questions and I'm about to start rambling (even more), so bear with me...<br />
So, the results from the sleep study showed that Clay's oxygen saturation levels were average 93%, which is good. But he desatted a few times throughout the night, spending a total of 20 minutes below 90. Turns out, those desats came when Clay was in his REM stage of sleep. So, the doctor explained to me that those are apnea episodes, more specifically, most of them were hypopnea episodes. So in the hypopnea episodes Clay doesn't necessarily stop breathing all together, he just breathes more shallow & slowly which would cause his oxygen levels to drop. According to the charts he gave me, during Clay's total sleep time he had 4 episodes of obstructive sleep apnea and 34 episodes of hypopnea. Nearly 40 apnea episodes throughout the night, when I have never been concerned with Clay's sleeping patterns? It's just kinda crazy to me...<br />
After a good ol' Google search tonight, I read that hypopnea episodes could be caused by partial obstructions in the airway....welllll, wouldn't a plugged trach be considered a partial obstruction in the airway?! Makes sense to me. Not to mention, the RT on duty that night in the sleep study had a very hard time getting the electrodes to pick up on Clay's noggin. He even told me that they may not get accurate readings of his sleep stages because he was having such a time with them. Of course, I'm remembering all of this now, after I nodded my head in agreement with the doctor earlier and had no questions at the end of the appointment....<br />
I don't mean to discredit his concerns at all--Lord knows I don't want the trach to come out too soon and cause undo stress to Clay! What he explained to me makes perfect sense, but it's all a new concept and I need time to process, I guess... (This blog really helps with that, ha). There's just a lot of questions I have about all this business...so if anyone out there has any advice or insights for me, I welcome it with open arms! <br />
We also discussed possibly putting him back on supplemental oxygen at night. His sats are usually in the low 90's...Like right now, he's satting 91% while he sleeps. Those aren't bad numbers, but because of his history of pulmonary hypertension and everything else, I've often wondered if we shouldn't help him out a little. So, we're looking into getting the oxygen concentrator back and I'm totally advocating for that. (Our med supply company came and picked up the ventilators and the oxygen concentrator a couple of months ago...so maybe I jumped the gun on the Os!). <br />
<br />
There's lots more I probably should include in this update but it's 1am and I can hardly hold my eyes open, so I'm gonna call it quits. Maybe I can get around to a post with cute pics and more fun stuff next time...I'll TRY to not wait 4 months, ha!<br />
<br />
Peace & Love, dear friends! We love you all!<br />
<br />
<br />Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com5tag:blogger.com,1999:blog-5691576650944957625.post-56947819262066349402013-11-19T22:10:00.002-08:002013-11-19T22:38:31.613-08:00My two year-old Clay.I know it's been foreveerrrr since I last updated--I forget a lot of people only check my blog and not my Facebook posts--so I apologize (especially to you, CDH friend, Raelyn!)! But I can assure you things have been great with our big ol boy!<br />
<br />
My last post was about Clay's puny-self after the Nissen surgery last month, while we were still in the hospital. So to catch y'all up--he ended up with a respiratory infection that left him on antibiotics for over week--we were able to finish them up at home via broviak, he was on a little extra oxygen for a week or so after we got home, but things have been fine & dandy since then! <br />
<br />
Now that all the recovery is behind us, I am so happy that we had that Nissen wrap. Clay will still wretch occasionally but the Nissen prevents food from coming back up, so he's keeping down all his calories and is gaining weight!!! He's up to 25lbs, 8oz now...yayyy!!!! He also just acts like he feels so much better. Thinking back, I can tell now that he was probably in a lot of pain from all the reflux he was having. I was just blaming his extra-sensitive & clingy behavior to a normal toddler phase. It's just so hard to know sometimes! Thankfully, he is giving me a break from the worrying and I've just been able to watch him learn & grow.<br />
<br />
It's just so amazing to see the world through his eyes. He notices every little thing, every new sound or sight. He'll get all excited and make this face:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSMqgsRzk4Uprc5xoWW8gp0FyymHPqIQgv9juk0t4ZEA9cbwL91nGMdwKTARJVdT1Dc4I1aFbgMZVNhm3w4wFF10nsRRECpnxFzafYHy6JFiDFYjPO8huRblu6w8CO7nlYqpQhJ-w4CQ/s1600/fal13+069.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSMqgsRzk4Uprc5xoWW8gp0FyymHPqIQgv9juk0t4ZEA9cbwL91nGMdwKTARJVdT1Dc4I1aFbgMZVNhm3w4wFF10nsRRECpnxFzafYHy6JFiDFYjPO8huRblu6w8CO7nlYqpQhJ-w4CQ/s320/fal13+069.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">(This pic was pre-haircut. Aww, I miss those curls!)</td></tr>
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He'll click his little tongue too, to get our attention. He sure is an expressive booger.<br />
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<tr><td class="tr-caption" style="text-align: center;">And so thoughtful.</td></tr>
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<br />
We celebrated Clay's 2nd birthday with a party with lots of friends & family! It was a beautiful, wonderful day.<br />
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As you can see, Clay had a good time too :)<br />
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Clay's toddler days are keeping me busy! He still scoots everywhere he needs to go, on his bottom. He's doing better about spending some time on his knees but still doesn't crawl. He can pull himself up to stand & he'll cruise along side the couch or ottoman. Boy, is he getting active. Tonight, we wallered all over the bed, doing somersaults and practicing standing on our own (he's much braver on the bed). He's making a lot of progress and will be walking on his own soon at this rate!<br />
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While we were in the hospital Clay had a barium swallow study done to make sure that when he swallows, he doesn't aspirate food into his lungs. I wasn't concerned that he was, but it's a precautionary thing they like to do before we are cleared for formal feeding therapy. He passed the swallow study, so now comes the fun part..feeding therapy! Haha, it's not really fun--it's quite frustrating actually, but I am glad we are able to start working on it. It's gonna be a long, slow, process I'm afraid. He'll lick things & take small tastes but anything with much substance will make him gag. It's a tricky thing, though...Clay's never learned to eat by mouth & with all the negative things forced upon him in his short life, I'm sure it's scary for him. I don't want to push too hard, but we have to try. Say a lil prayer for us & this process...we're sure gonna need 'em.<br />
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Clay has also learned to vocalize by plugging his trach with his finger. He doesn't particularly like to wear his PMV, so I'm just glad he's able to talk to us somehow. He loves naming people's things better than anything. For instance, he'll see my shoes by the door and he'll point to them & say 'mamma'. Or he'll see daddy's jacket hanging up & he'll point to it and say 'daddy'. I'm really trying to get him to name the actual thing instead of whose thing it is! Lol. He's such an observant little guy. He knows every car in the family and loves to talk about them, lol. A frequent conversation of ours goes like this: Clay looks out the window & says "Papa"...I say, "Papa's at work"...Clay does his sign for 'car'...and I'll say, "yep, Papa drove his car to work". Interchange Papa with Nana or Heee (Aunt C) or Hay-dee (Aunt Kd) or Eli or any other family member & that's Clay's favorite thing to talk about ;)<br />
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Last week, we had an appointment with the NICU graduate program where they tested him on all the social, cognitive, motor development and he did so great. I was so proud of him, I swear I coulda busted. Especially with the cognitive testing...when they were testing to see how his comprehension was, he went above his age & maxed out at the 3 year old level. Yes, I'm bragging. So hard. To think of allllllllll the stufffffff he's been through & his mind is still sharp as a tack. Amazing! Of course, he was behind in the gross motor skills but his fine motor skills were on point. He will catch up on his own time, I ain't a bit worried. <br />
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<tr><td class="tr-caption" style="text-align: center;">He loves him some basketball...you can see the concentration in his tongue & check out that form ;)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Buckets!</td></tr>
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The next big thing coming up is a Bronchoscope this Thursday,
the 21st. It will be yet another sedation procedure, but we have to have
it done to continue on with getting the trach out. And boy, are we are
ready for that! Say a prayer for good results on Thursday, please!<br />
<br />
Speaking of getting the trach out, our CDH buddy Mason got his trach out on Halloween! He has been doing great. Thank God!<br />
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We
are so blessed. Really, truly blessed and I am so humbled &
thankful for where we are now. Thank you all for continuing to keep up
with our lil warrior's progress. Lots of love & peace to you all! Have a blessed Thanksgiving holiday!
Xoxoxo!Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com7tag:blogger.com,1999:blog-5691576650944957625.post-49796684717868020072013-10-10T08:42:00.002-07:002013-10-10T08:42:48.098-07:00At full feeds but feeling puny :(Well the good news is, we are up to full feeds of 56ml/hr and he's doing great with that so far! His g-tube is still racked, and will have to be for another week or so, then we can work on condensing feeds into boluses. <br />
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We were hoping to be home-free today, but Clay's coughing is worrying me. He coughs and hacks and coughs and hacks, turns blue and breaks out in a clammy-sweat...I suction and suction and give saline drops and do breathing treatments. Once he's over the coughing fit, he'll huff and puff and retract and just flat out looks like he's struggling. He's been on 26% oxygen since surgery--which hasn't been totally necessary until lately. We had to bump him up to 35% this morning and he's still hanging out in the low 90's. His heart rate has been elevated over the past couple of days, too. Something's just not right. But we had chest x-rays done yesterday and they looked fine. He hasn't had a fever, either. It's just so frustrating not knowing what is causing all this and so pitiful to see him so puny. If it is something viral, something that may be lingering from our rubber-ducky incident--the cough has been lingering since then, but it's obviously taking more of a toll on him now--if it is something like that, then I'm perfectly fine with taking him home and setting up our Clay-ICU again. I'd rather have him home, where he can rest and be more comfortable...I just don't want to take him home and have to come right back! So, we will be here for another day or two until we get something figured out.<br />
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Y'all say a prayer for my lil man. This never gets any easier :(<br />
<br />Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com3tag:blogger.com,1999:blog-5691576650944957625.post-58722797402862423932013-10-05T19:22:00.002-07:002013-10-05T19:22:23.717-07:00Wake up, Clay belly!Praying for poop...that's what we've been doing since surgery. He finally had a decent bowel movement tonight, nothing huge, but hey...it's a start! And it was without the help of a suppository so that's good he did it all on his own.<br />
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Poor little bug has been pretty uncomfortable, both with post-op pain and his bloated-ness. His belly has been distended and so tight, he looks like a lil pot belly piggy. A very cute pot belly piggy, of course ;)<br />
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Since his bowels haven't quite awoke from surgery, we haven't been able to start feedings :( He started getting some nutrients through is IV yesterday, but that's just not the same as tummy feeds... We've actually had to drain his g-tube constantly, so that all his gastric juices and air can escape, because otherwise he wretches and is extremely uncomfortable. We've tried to rack his g-tube a couple of times, which is when we attach a 60ml syringe (sans plunger) to his feeding tube extension and suspend it above him. With this, air can escape but gastric juices stay down. Both times we've tried this, he's not tolerated it so we put it back to drain. We don't want him wretching or gagging because we want his new Nissen wrap to stay intact. Surgery team isn't concerned with his sleepy belly right now...they say sometimes these things take a while. So, we wait.<br />
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He also had a touch of a fever tonight, 99.5..and he's sounding a bit wheezy in his lungs, and he's been retracting a bit when he breathes--which could be because of his overfilled belly. I'm really hoping things aren't settling down in his lungs; his cough has been a little weak because it really hurts him to cough. Poor fella, that's the last thing we need right now.<br />
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He has perked up a bit over the past couple of days... he's felt like sitting up in bed and is enjoying reading his books again..we took a lil wagon ride through the halls yesterday too. He's not back to his silly, smiley self yet, but we'll get there.<br />
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<tr><td class="tr-caption" style="text-align: center;">Handsome man.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUkyRxCM6q3sQ7x-QAXKaIkU_k_uIBqUj2vtrPajTWPGCPQQabKWW90jFfecv_DDSdZzruOVk9WocNP2CZhqdyW5XGLH5cvyU7eh0vl9Y0s5iXtIAJ8oKjUC0quESVvxfrrC9izYqUQ/s640/blogger-image--250224757.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnUkyRxCM6q3sQ7x-QAXKaIkU_k_uIBqUj2vtrPajTWPGCPQQabKWW90jFfecv_DDSdZzruOVk9WocNP2CZhqdyW5XGLH5cvyU7eh0vl9Y0s5iXtIAJ8oKjUC0quESVvxfrrC9izYqUQ/s640/blogger-image--250224757.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gettin lots of momma lovins...I think we're both tired of hospital living :/</td></tr>
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Thank you all--for the millionth time--for your prayers & love & concerns for our baby. Lots of love & blessings to you all! Xoxoxoxo!<br />
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Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com2tag:blogger.com,1999:blog-5691576650944957625.post-34925807314505372492013-10-02T21:34:00.002-07:002013-10-02T21:34:39.517-07:00Recovery days.<br />
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Things have actually worked out better than expected this time around...very unusual for us! ha!<br />
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We had surgery yesterday morning; they took Clay to the OR around 11am and he was out and in the PICU around 3pm. Dr. Draus had great news for us in consultation afterwards. It turns out, his diaphragm is still intact--no hernias anywhere! Thank goodness! The reason his x-rays look like his stomach was misplaced is because the diaphragm is a bit loose on the left side. Dr. Draus decided not to tack it down or tighten it or anything because Clay has been doing so well breathing as it is, so why mess with it, right?<br />
<br />Dr. Draus was able to get a really good look at his handy-work and was really pleased with how well tissue has formed around the previous patching jobs. He said that he could see liver & spleen acting as a barrier between bowel & diaphragm, so it looked like bowel would have a hard time slipping up through the diaphragm even if it wanted to. Good news!<br />
<br />
So, the diaphragm didn't need repairing after all...and we're hoping the loose-ness of it will allow for more room for Clay to grow & another repair won't be necessary for a long, long time!<br />
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The Nissen Fundoplication was done to prevent the frequent pukies that
Clay was having. The Nissen wrap is a crazy concept that I have a hard time
wrapping my head around, but a picture helps: <br />
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<a href="http://www.mayoclinic.com/images/image_popup/mcdc7_fundoplication.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Illustration showing Nissen fundoplication
" border="0" height="227" id="photo" src="http://www.mayoclinic.com/images/image_popup/mcdc7_fundoplication.jpg" width="400" /></a></div>
<div style="text-align: left;">
The stomach is wrapped around the esophagus and then sewn to itself to reinforce the esophageal sphincter, the muscle that keeps food & acids from backing back up into the esophagus. From what I understand, Clay will not be able to puke at all now...which I think is both a good and bad thing. Good, because maybe we can put some weight on his scrawny-tail...Bad, because even if he has a stomach bug, he won't be able to puke and sometimes puking just makes you feel better. But, puking numerous times a day everyday IS awful and since that's the situation we were in, I think the good overrides the bad. </div>
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Dr. Draus said he had to use a good portion of his stomach to wrap around the esophagus; so it will take a while for his stomach to be able to hold large amounts of food--he will have to be on a slow drip for a while. Hopefully we can start feeds in the morning. </div>
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Other than the Nissen, Clay also had a central line placed--a more permanent IV port for meds and fluids. Eric & I requested this so we could spare him from being poked so much. He is such a hard stick and poor guy had already been poked over 10 times during this little hospital stay...and it's fishing for veins almost everytime. That's just torture! We'll have that central line pulled before we leave for home, no big deal. </div>
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Clay also had his appendix removed while in surgery; Draus said it was there and in plain sight, so he just went ahead and took it out..lol. Now we won't have to worry about appendicitis, I guess!</div>
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Today has been a pretty rough day of recovery. Clay's been awfully sore, but is being such a trooper. He only fusses when he coughs. Poor guy, it's a bad time to have a cough. He has only smiled a few times today so that's a good indicator he's feeling rough. I can't imagine after being cut open and having your innards rearranged I'd feel like smiling either! Hoping tomorrow will be much better for him.</div>
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I cannot thank you all enough, for your well wishes and love and prayers. The power of prayer and positive thoughts is an amazing thing! We are so, SO blessed. Seriously, we have the best people in our lives. I cannot imagine going through this without all the love and support we've felt...from the visits, to the meals, from the calls & messages, to the likes and shares and comments on Facebook.. They all really do mean a lot to me. I hope I can pay it forward one day. You all are the best <3</div>
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Lots of love & peace to you all, dear friends... Xoxoxoxo!</div>
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Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com2tag:blogger.com,1999:blog-5691576650944957625.post-32310961253243499582013-09-27T12:34:00.001-07:002013-09-27T13:44:19.883-07:00Repair surgery hold-up...Of course, things never go as planned with Mr. Clayton Cash and this trip to the hospital has been no different. Lil turkey likes to keep us on our toes! <div><br></div><div>Repair surgery #3 was scheduled for Thursday morning, instead we found ourselves in the ER with a fever and a cough..</div><div><br></div><div>Let's rewind to Tuesday evening...Clay's in the bathtub, playing with his lil rubber ducky and he squeezes...squirtttttt, out comes the water and shoots directly into his trach...I swear, it could not happen again if we tried. He coughed and I suctioned, all was well and we went to bed. Through the night, he started coughing and continued more into Wednesday. His secretions were never thick or green or anything, so we weren't too concerned but still watching for more symptoms. Sure enough, through the night Wednesday he continued coughing and a fever spiked, respiratory rate and heart rate was high and his oxygen levels lingered in high 80s-low 90s. So we headed to the ER to see what was going on and surgery was postponed.</div><div><br></div><div>We're still not conclusive on the cause but I suspect that daggone ducky water irritated Clay's airway or something...Or maybe it's a regular old cold...We're waiting on blood cultures to be sure. Antibiotics were given too, just incase it is bacterial. </div><div><br></div><div>His cough is dry and sounds croup-y...one of those painful kinds that is pitiful. But he's been wearing a humidified trach collar and that seems to be loosening things up and his cough is much better today. His lungs sound good and clear and he seems to be feeling much better since his fever is gone, too.</div><div><br></div><div>We've moved from the PICU to a regular room today and have been told they want to keep us here until surgery day, which sounds like may happen next Tuesday or Thursday. </div><div><br></div><div>So, it's gonna be a long couple of weeks, but our spirits are high and we will just do what we gotta do! Everything happens for a reason, that's what I believe! </div><div><br></div><div>Oh, and look who got a big boy haircut:<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtHE8pB1cUXfWaKP9Uv0kiGUV94TFpmSWzDWLsIFDWKZACqDpiKcvaOcUQ8pmrZNmmrAdxhjo0p1ukJBkPv8zUQydunPlHF6tyCmGYnlK9_C5tviT47XuAh_AJ0f_YG4tS1o6DJeDR4w/s640/blogger-image-1007230610.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtHE8pB1cUXfWaKP9Uv0kiGUV94TFpmSWzDWLsIFDWKZACqDpiKcvaOcUQ8pmrZNmmrAdxhjo0p1ukJBkPv8zUQydunPlHF6tyCmGYnlK9_C5tviT47XuAh_AJ0f_YG4tS1o6DJeDR4w/s640/blogger-image-1007230610.jpg"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtHE8pB1cUXfWaKP9Uv0kiGUV94TFpmSWzDWLsIFDWKZACqDpiKcvaOcUQ8pmrZNmmrAdxhjo0p1ukJBkPv8zUQydunPlHF6tyCmGYnlK9_C5tviT47XuAh_AJ0f_YG4tS1o6DJeDR4w/s640/blogger-image-1007230610.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoiB1rGxWXPKQhmGSlspXUbQUrMBbXBniq_POOHIXZtaaWg8SGWZEGCIGil6jaX_4OiHJZXZO2nCsdHYUmSuauJgcGo2MKmfnZlwxTmibwmMXOLhU2aIpYpUDCesfVOkQfHEjrYaUUlg/s640/blogger-image-229952361.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoiB1rGxWXPKQhmGSlspXUbQUrMBbXBniq_POOHIXZtaaWg8SGWZEGCIGil6jaX_4OiHJZXZO2nCsdHYUmSuauJgcGo2MKmfnZlwxTmibwmMXOLhU2aIpYpUDCesfVOkQfHEjrYaUUlg/s640/blogger-image-229952361.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid1ULm3Xo9IppxJeEe4C6hgNTPs3nXh6VwFhGeVFfRhZsP7dkPCics6IQt0k9mI6MxUN6wO-5-yHxa50JY6Cg22OAFFrVWcSHmWe5zFT0X5VbEkShQAWqv218gLfVB3BgYCqdqB2o_gw/s640/blogger-image-523842722.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid1ULm3Xo9IppxJeEe4C6hgNTPs3nXh6VwFhGeVFfRhZsP7dkPCics6IQt0k9mI6MxUN6wO-5-yHxa50JY6Cg22OAFFrVWcSHmWe5zFT0X5VbEkShQAWqv218gLfVB3BgYCqdqB2o_gw/s640/blogger-image-523842722.jpg"></a></div><div class="separator" style="clear: both;">How handsome, right? :)</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I'll try to keep everyone posted on the latest. Lots of love and thankfulness to you all! Xoxoxo!</div><br></div></div></div>Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com1tag:blogger.com,1999:blog-5691576650944957625.post-78014872436567519882013-09-16T20:46:00.000-07:002013-09-16T20:48:50.753-07:00Reherniation, again...<div class="separator" style="clear: both; text-align: center;">
</div>
What a day.<br />
<br />
We had an appointment today with our surgeon, Dr. Draus, to discuss what could be causing Clay's ongoing puking issues. Chest x-rays were taken first thing and then we learned exactly the issue:<br />
<br />
Reherniation...again.<br />
<br />
The
patch that was constructed for his diaphragm in the previous two repair surgeries has given way right in the
middle of his diaphragm, right below his sternum. The
g-tube is serving as somewhat of an anchor for his stomach, so it's only partially
up in his chest cavity, but we could very visibly see stomach in his chest while looking at the x-rays. That definitely explains his volume intolerance and his frequent pukies, poor lil bug. We weren't expecting that one. <br />
On the way to Lexington, Eric & I mulled over different scenarios, pondering what triggers the pukes...could it be a food intolerance, could it be a motility issue, could it be that he needs a new reflux med...We discussed the possibilities of replacing the J-tube, going ahead with the Nissen surgery that we had previously cancelled, but we never even mentioned reherniation.<br />
<br />
Although that is something that's always in the back of my mind, I figured another reherniation would mean another sick baby. I figured another reherniation would mean his breathing would be compromised. Thank God, that has not the case this time around. We don't even know how long it's been since it happened; his last x-ray was in May. But I haven't noticed any change in his breathing and he's still rockin' it 24/7 with no ventilator or oxygen, satting in low-to-mid 90's. Absolutely amazing, I'd say, considering his stomach has just unwantedly took-up house in his chest....just busted through the diaphragm, snuggled right up next to his heart & lungs. Not cool, stomach, not cool... How about you stay put next time?<br />
<br />
We are in the books for repair surgery #3 for next Thursday, the 26th. Dr. Draus will be approaching this surgery through stomach and will use his original repair surgery site. He will have to pull the stomach back down where it's supposed to be and repatch the diaphragm. If it looks like the diaphragm tissue that is in place from the previous repair surgeries is strong enough to sew to, he will utilize that to place the new patch. But if the existing tissue is not sufficient, he will have to start from scratch. We are hoping for some good, strong tissue to sew to, that way another reherniation is less likely. Also, Dr. Draus will do the Nissen Fundoplication while he's in there. Might as well go ahead and knock it all out, I reckon.<br />
<br />
Our expected hospital stay is 1 week. Oh, I dread it. I dread the surgery, I dread the recovery, I dread all of it! I don't want to see Clay have to go through this again. It sucks so bad.<br />
<br />
<br />
Y'all keep us in your prayers. Clay will do wonderfully through this next hurdle, I have no doubt. He is my strong, strong, warrior and I am so proud of him.<br />
<br />
And here's a few pics of him enjoying life, even with misplaced organs::<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMx0yGwWx1TOdW9vNoIbiytWj-T1U09offaFWwaJWgM2JwRZtH4Ghq3irYgb3QAXi2Uqs-0MX_u3dK23vqPoDqbDBqe643lddFdCzXo6IU3jj3NvqIGReGRcUqWARBTPWdgjhHlEOLJw/s1600/fall+2013+008.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMx0yGwWx1TOdW9vNoIbiytWj-T1U09offaFWwaJWgM2JwRZtH4Ghq3irYgb3QAXi2Uqs-0MX_u3dK23vqPoDqbDBqe643lddFdCzXo6IU3jj3NvqIGReGRcUqWARBTPWdgjhHlEOLJw/s320/fall+2013+008.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Looking at the sky...he loves to watch birds & airplanes!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNXHZ_EvmDs3GzV63xQAMoBFap4zPRKSRbReLtiZyWa3j2umfQ_9Sq4K1crkyyqfMEeuPvgDkAMpJsQGDTnen0t_pJ-EcuN3FfUOC5kfc5RUGNVtOeae6gFs8cFAptKjTlX27pUSxMoA/s1600/fall+2013+024.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNXHZ_EvmDs3GzV63xQAMoBFap4zPRKSRbReLtiZyWa3j2umfQ_9Sq4K1crkyyqfMEeuPvgDkAMpJsQGDTnen0t_pJ-EcuN3FfUOC5kfc5RUGNVtOeae6gFs8cFAptKjTlX27pUSxMoA/s320/fall+2013+024.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taking Pappy on a tractor ride.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcycOt0JgvTZ3vJNU0NC7xw2l-SSBUua5biqVVMdiwG96PUJWmfBC7iGx9rQQLooU8MXT20bhJTVxVq6gEjtjztJEI4fz5dPonwtW6oLq3LYdXGdSaX5RI1Zao4WSnKHHjJSfFtepMw/s1600/fall+2013+046.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcycOt0JgvTZ3vJNU0NC7xw2l-SSBUua5biqVVMdiwG96PUJWmfBC7iGx9rQQLooU8MXT20bhJTVxVq6gEjtjztJEI4fz5dPonwtW6oLq3LYdXGdSaX5RI1Zao4WSnKHHjJSfFtepMw/s320/fall+2013+046.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These ankle braces are made for walking :)</td></tr>
</tbody></table>
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMCbPDOxrfGDhS9YYU0qxJWvDVRmepZmFXzgWA3DUkQWYt_KpTa-S9oyeDLh41scWch7vPkqSf6-gcj6N5tp9qND0MwFiF82YzaScsopomuXpve0a1UpAODy5TYs44Vxdjtp4g8jFNDA/s1600/fall+2013+062.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMCbPDOxrfGDhS9YYU0qxJWvDVRmepZmFXzgWA3DUkQWYt_KpTa-S9oyeDLh41scWch7vPkqSf6-gcj6N5tp9qND0MwFiF82YzaScsopomuXpve0a1UpAODy5TYs44Vxdjtp4g8jFNDA/s320/fall+2013+062.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">lol, outfit courtesy of cousin Al :) </td></tr>
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<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQXU8rBJ9Q9Urefbhvo-ygkkjoMoKzCwJHvTt8T3_-yWKk2xjOuYM1X9MfKTla3Wt6KcOLUF27DL66ygJgAnx4JFAI_bUUvoij-9AUxhuX78DELYr1ChUjdLlHdlRLXE4cUDiPQ2Af8Q/s1600/fall+2013+080.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQXU8rBJ9Q9Urefbhvo-ygkkjoMoKzCwJHvTt8T3_-yWKk2xjOuYM1X9MfKTla3Wt6KcOLUF27DL66ygJgAnx4JFAI_bUUvoij-9AUxhuX78DELYr1ChUjdLlHdlRLXE4cUDiPQ2Af8Q/s320/fall+2013+080.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holding hands with our friend Lyza..</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHwcUiHdhFHnzqhgI4nF5OVe8w_yjpryF9W4_nKFGcFR70t6vfQLWBrJCyejKV79GC02h7GCjUQC5eej544nFRRSXwdlq7Wsj3n3aTgg2njB8IrghwPg9jPPHT-_79oWlWOkuL8N5IKQ/s1600/fall+2013+072.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHwcUiHdhFHnzqhgI4nF5OVe8w_yjpryF9W4_nKFGcFR70t6vfQLWBrJCyejKV79GC02h7GCjUQC5eej544nFRRSXwdlq7Wsj3n3aTgg2njB8IrghwPg9jPPHT-_79oWlWOkuL8N5IKQ/s320/fall+2013+072.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lots of things to talk about!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR24lIIcMYEXQb6sgUszGz-RTL79_aGkc7Bg4TWqoSRb4Jr29ufn1Uul-P_e7xErx311LfROBqTceOdA5gyIKdKFr-QTnOij5IMLfK5EsAZBrARebA_eI40A1s69772gMat-q2YuJL_A/s1600/fall+2013+103.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR24lIIcMYEXQb6sgUszGz-RTL79_aGkc7Bg4TWqoSRb4Jr29ufn1Uul-P_e7xErx311LfROBqTceOdA5gyIKdKFr-QTnOij5IMLfK5EsAZBrARebA_eI40A1s69772gMat-q2YuJL_A/s320/fall+2013+103.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gait trainer & ankle braces--just doing some PT!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXYrYjgL5am8I-RAMfd24O9LmCzdYy4aoA4l_UmVyQ4ms-BwO-7otyXaAH2ImrwVYzGqYM_yO-CBvYY5pdJ17XU_wDu4iO9DnJMjECzO38EX3JpSjV_3D4UlCfPIaiEzZKMpykzd8vEw/s1600/fall+2013+170.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXYrYjgL5am8I-RAMfd24O9LmCzdYy4aoA4l_UmVyQ4ms-BwO-7otyXaAH2ImrwVYzGqYM_yO-CBvYY5pdJ17XU_wDu4iO9DnJMjECzO38EX3JpSjV_3D4UlCfPIaiEzZKMpykzd8vEw/s320/fall+2013+170.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What a big boy!</td></tr>
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Yep, he's a trooper.<br />
<br />
Thank you all, faithful followers of our journey. Your prayers and support lift us up when we need them the most. We love you so much! Xoxoxo!Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com4tag:blogger.com,1999:blog-5691576650944957625.post-80881773807012374022013-08-19T22:26:00.002-07:002013-08-19T22:26:26.797-07:00On to the next one..<br />
CLAY HAS BEEN TOTALLY OFF THE VENTILATOR FOR FIVE WHOLE DAYS & NIGHTS!!!!! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFP9tYqKlvUFvtEuw0x0Zn8SfsEtsw7vrC0CApUEh41zGEbsymFw_9QuvIDe-0BdoiISQFfryTjfGG1PFF-XfkuIqojlk9pusa0fP5fUDYJzNZmXcMIQluwS5fAjh02yZ1tXn2ueGzZA/s1600/IMG_6361.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFP9tYqKlvUFvtEuw0x0Zn8SfsEtsw7vrC0CApUEh41zGEbsymFw_9QuvIDe-0BdoiISQFfryTjfGG1PFF-XfkuIqojlk9pusa0fP5fUDYJzNZmXcMIQluwS5fAjh02yZ1tXn2ueGzZA/s320/IMG_6361.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wooohooo :)</td></tr>
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I cannot believe how quickly and how smoothly this whole kicking-the-vent process has went. Clay was just tired of the ol' thing, I reckon--him & me both! <br />
<br />
We have had appointments with Pulmonary, Nephrology, Cardiology, Speech & ENT over the past week & we've got good reports at them all.<br />
<br />
At the pulmonologist, we got the okay to discontinue the vent at night--his settings were so low and he's done so well without the vent at all other times, we felt comfortable making that call. I put the pulse oximeter on him at night to monitor his oxygen levels and he's never made it alarm (it would alarm if his sats dropped below 85). He usually runs 92-96...No vent, no extra oxygen at all...CRAZYYYY!<br />
<br />
We also started the conversation of the next step: TRACH DECANNULATION! Since he's off the vent now, there's no need for the trach, so let's get that thing outta there, right?! Doc referred us to the Ear, Nose & Throat clinic to begin the process.<br />
<br />
We had the appointment with ENT today and the first step in getting the trach out is to make sure his airway is clear. Sometimes granulation tissue can grow around the trach site and can block the airway, so we're scheduled for a laryngoscopy & bronchoscopy on September 18th. It will be a sedation procedure, but an outpatient one, unless something funky happens...but hopefully things look good in there! I believe the doc said if all is clear the next steps would be to downsize the trach, then do capping trials & then we'll do a sleep study before we get it out completely. If things go smoothly, we could have the trach out in 2 or 3 months. Eeeeeeeeek! Lots of good vibes & prayers, please!<br />
<br />At our cardiology appointment, they also want to follow up with another ECHO to make sure his cardio status post-ventilator hasn't changed. So we're piggy-backin' that procedure with the others on September 18th. He had an EKG done today & Doc said things looked good. He was very pleased with everything, which is always reassuring to hear.<br />
<br />
<br />
At the nephrology appointment, we discontinued a couple of his medications and we're supposed to have labwork drawn in a couple weeks to make sure it didn't rock the boat. I'm confident he'll be fine--I'm telling ya'll, he's making this easy on ol' Mom. All this no-ventilator, no-meds business..well, we have a couple meds, but still... It's awesome!<br />
<br />
At our speech evaluation, we got a new Passy-Muir valve, which helps him to vocalize. That's the ONLY thing I miss about the ventilator--Clay would use the ventilator pressure to move air around his trach & he'd be able to talk that way, but now he can't do that unless he has this valve. And the valve works great--when he'll let us put it on him, the little rascal! He will not leave that valve on for nothin! As soon as I put it on, he starts coughing. It's a fake cough at first, but because the valve blocks air from being exhaled out of the trach, it really does get him choked up, so he'll cough and gag and carry on until someone pulls the valve off (it's usually him), but I don't like to force it on him--a lot of times, he'll work himself up til he's puking and that's no fun for anybody. When he's good and distracted, he'll leave it on and jabber up a storm--but I haven't been able to sneak it by him in a couple of days. I swear, I don't know what I'm gonna do with him! He pulls off the little trach nose piece too and will launch it across the room. I fight with him all day to try to keep that trach covered. I'm just waiting for the day he tries to stick something in it. If any of my trach-mommy friends happen to be reading this and have any suggestions, please pass them along...this is driving me nuts, lol!<br />
<br />
Of course, Clay hammed it up during all these trips out & about...his new thing is to fist bump everyone he sees. It's the
cutest thing ever! He'll hold his little fist up in the air, just
waiting for a taker...once someone gives him a bump, he'll cheese so
big...it's a little ridiculous. He is just so infectious, I love to watch him make
people smile. He sure is a blessing.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgkMNVD8Aym3eC-kiihdoPtDGIYl04omWZtkHhCn90pYLdWgIQ46ilBjqiaVqw65qEFGOl53p0GxIUNKy3ZcbJrwoOCnIeZDBHCcAdA832XxdcxnewhqDr77PnSZalaxj5dXRcVJgiOA/s1600/IMG_6359.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgkMNVD8Aym3eC-kiihdoPtDGIYl04omWZtkHhCn90pYLdWgIQ46ilBjqiaVqw65qEFGOl53p0GxIUNKy3ZcbJrwoOCnIeZDBHCcAdA832XxdcxnewhqDr77PnSZalaxj5dXRcVJgiOA/s320/IMG_6359.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What a stinker!</td></tr>
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He is also doing better in physical therapy. We are now having to travel to the clinic a couple times a month for sessions, but I think he's a little more receptive to it in the new setting...a little. He's still pretty ornery. He doesn't like the fact that our PT makes him work, haha! Slowly but surely it's paying off--he is now pulling himself up to standing! He'll take a few steps from side to side while he's standing in front of something but he's awfully wobbley...his little hips are just so weak still. But he'll catch up in his own time...we are making progress! We also got a neat contraption last week called a Gait Trainer, it's a little walker essentially, but it's pretty cool! I think it's gonna be really beneficial for him. We're still waiting on the daggone ankle braces to come in...insurance must be holding up the process but <i>hopefully</i> they'll be in in a week or so.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpGypZneX9oVmR-sROH8qrSVgHdjgbn2pKxKlHPcNFnqqbZFeKUjixTccxY8Nqd-1e-HylSthUM_wZu6C_jBiQpFWHIObCpJCeyROWSm4VdgHmCdhE8tyn9RXVCpTiib2JRcCilUCQEw/s1600/IMG_6310.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpGypZneX9oVmR-sROH8qrSVgHdjgbn2pKxKlHPcNFnqqbZFeKUjixTccxY8Nqd-1e-HylSthUM_wZu6C_jBiQpFWHIObCpJCeyROWSm4VdgHmCdhE8tyn9RXVCpTiib2JRcCilUCQEw/s320/IMG_6310.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big boy, pulling himself up to standing all on his own! Look how proud he is :)</td></tr>
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We're still having issues gaining weight. He's not lost anymore, he's just hanging steady at about 23 1/2 lbs. He has grown a couple of inches longer though. We upped his total daily volume last week, so hopefully that will help. If I could just get him to keep all of his feeds down during the day, we'd be doing good...poor lil guy has a super sensitive gag reflex. He'll cough and then, blaahhh, there goes his whole feeding. It's very frustrating. I really think that once we lose the trach the issue will get better but in the meantime, I'm trying to space his feedings out more during the day and not give him so much volume at once. Y'all say a prayer we can find a happy spot. We need to get some meat on his bones! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEPxYhILqfAcdBHIXGzpfOz0VjV7SBrXQPz921E8qlfgqMQeIUXzSXBeBPcC_b0PfmbperqDZneAbxM_b1YL9dYVt9k-t-SgA8CZ7-CfnZdS1Sf5YUSQsd-KP1gA1APWsEuDPb7DzPQA/s1600/IMG_6465.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEPxYhILqfAcdBHIXGzpfOz0VjV7SBrXQPz921E8qlfgqMQeIUXzSXBeBPcC_b0PfmbperqDZneAbxM_b1YL9dYVt9k-t-SgA8CZ7-CfnZdS1Sf5YUSQsd-KP1gA1APWsEuDPb7DzPQA/s320/IMG_6465.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I don't think dog food is the answer there, buddy..</td></tr>
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Clay decides every once in a while that he likes to eat things by mouth, but it's hit or miss...stubborn thang! Once the trach comes out, we will be tackling the eating thing hardcore. One thing at a time, right?<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGrz2p27eym8Li1KbTXFbu15BH-PEHryRYzVMu4i_nHMRn5tLkjM24GZPBBw4psZXmRxomLXPXbVpUpsw4MxaupLXCqim_aGpwxrndG-jBUaktIXsWwkXFt845Gg6g6F8arHn-vYfnYg/s1600/IMG_6313.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGrz2p27eym8Li1KbTXFbu15BH-PEHryRYzVMu4i_nHMRn5tLkjM24GZPBBw4psZXmRxomLXPXbVpUpsw4MxaupLXCqim_aGpwxrndG-jBUaktIXsWwkXFt845Gg6g6F8arHn-vYfnYg/s320/IMG_6313.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cheers!</td></tr>
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Lots of love & peace to all of you! Thank God for wonderful blessings!<br />
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XOXOXOEric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com2tag:blogger.com,1999:blog-5691576650944957625.post-72515588895582906952013-06-26T12:23:00.003-07:002013-06-26T12:23:56.517-07:00Choosing faith instead of fear.<br />
Holy smokes, we made it a year...one year ago today, we were bringing Clay home to the hills for the very first time. <br />
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Can you say proud? 'Cause that's what I am. I have kept my baby <i>alive</i>, and I'd even venture to say <i>thriving</i>, at home, with a ventilator, oxygen and a feeding tube. Yes, yes, yessssssssssssss, I'm proud.<br />
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I guess it's normal coping behavior to 'put the blinders on', so to speak, when you're faced with adversity. At least that's what I do...and that's what I feel like I've been doing for the past 2 years. I've focused on the positives, looking ahead to the light at the end of the tunnel. Always grateful for another day, but praying for a better one to follow.<br />
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When I first learned I was pregnant with Clay, I decided to keep a journal and write letters to him. I was 7 weeks pregnant when I wrote the first letter, having no idea if he was a boy or a girl, and absolutely ZERO idea he would be born without a diaphragm. Heck, I had never even heard of CDH ever in my life... Until June 13, 2011. That's the day Clay was diagnosed with Congenital Diaphragmatic Hernia, and that's the day I put on those blinders. Looking back now, those following 20 weeks of pregnancy were some of the most fearful; the uncertainty that comes with the CDH diagnosis is the absolute worst. But with my blinders on, I would seek out the stories of the most mild cases of CDH & told myself that was how Clay's would be...we'd come home a couple of weeks after birth with a healthy baby. <br />
<br />But as you all know, that wasn't in the plan. <br />
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Clay was so sick when he was born. Thinking back to his first couple of weeks of life, I'd say some people thought I was delirious at times and not realizing the severity of the situation. But I did, I just had my blinders on...<i>I chose faith instead of fear.</i> He had to get better because the alternative was not an option. One day, I'd be bringing my baby home.<br />
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And 8 months later, we did. What a sweet, sweet day that was.<br />
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Still, bringing him home with a ventilator, oxygen and a feeding tube is not how I pictured our homecoming to be. With my blinders on, I've focused on the day Clay would no longer need mechanical assistance. One day, it will happen. All he needs is time and lots of love.<br />
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Good thing we've got lots of both up here in the hills.<br />
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As I sit here writing this, Clay is scooting around all over the house--no ventilator attached. You see, at our pulmonology appointment last week, we were given the OK to discontinue his oxygen during the day (which is completely awesome in itself--that's one less thing tying us down!). We were given instructions to wean his PEEP setting on his ventilator from 7 to 5, then if he tolerates, wean his Pressure Support setting from 12 to 10, then if he tolerates, start doing trials off the ventilator again. Thank the good Lord, he has tolerated all of those changes very well. We started doing trial-offs on Monday and he is doing great. Our 30 minute trial off turned into a 2 hour one, because he was not about to let us tether him to his vent again. I will hook him up to the pulse oximeter machine every little bit to check his oxygen saturation levels. And they're great. No oxygen, no ventilator, satting 94-97. Someone pinch me. <br />
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I'm starting to peek around those blinders and catch a glimpse of what our lives will be like sans ventilator. And it's a beautiful thing. <br />
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We still have a ways to go until Clay is completely tube free, but we are well on our way.<br />
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I want to share with y'all a little bit of the letter I wrote to Clay on the day we found out about his CDH diagnosis, over two years ago...<br />
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<i>It sounds like CDH is a really serious problem, but there is <u>no</u> doubt in my mind that you're a fighter. I've prayed from the beginning that you'll be a strong one--and I don't believe He's gonna let us down. You may get off to a rocky start, but I just know you'll make it through & have a great story to impress the ladies with one day ;) ...You have no idea how much I love you already. I'm scared to death, I'm not gonna lie...but I'm gonna have a positive attitude & pray so much. And so are <u>so</u> many others. We can do this little guy. Let's show 'em how strong we are & kick this CDH thing right in the ass!!!!!</i></div>
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And we are doing just that, my friends.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe-vr1VVRrkhHE_xQVzik5lSOwzyvf5yxCLFpQeeWSpm6X0XkWKZ2As-9U68lFbhlZ7u1uvHkDihfeJR2Qt12ahAp_4icpuUD48OgLS6JiDYYT1U5P8TjaQbLFJ9XzZfNs58bRWvxdOQ/s1600/IMG_6102.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe-vr1VVRrkhHE_xQVzik5lSOwzyvf5yxCLFpQeeWSpm6X0XkWKZ2As-9U68lFbhlZ7u1uvHkDihfeJR2Qt12ahAp_4icpuUD48OgLS6JiDYYT1U5P8TjaQbLFJ9XzZfNs58bRWvxdOQ/s400/IMG_6102.JPG" width="400" /></a></div>
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And just in case you want to reminisce with me on that beautiful day we brought Clayton Cash home, click on the links below to check out the three videos my wonderfully talented friend, Dustin Stevenson, at Dustin Stevenson Photography made for us.<br />
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<a href="http://vimeo.com/44784508" target="_blank">Part 1</a><br />
<a href="http://vimeo.com/44814331" target="_blank">Part 2</a><br />
<a href="http://vimeo.com/44843469" target="_blank">Part 3</a><br />
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Lots of love & blessings to you all, beautiful people <3<br />
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<br />Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com4tag:blogger.com,1999:blog-5691576650944957625.post-54524953008010422312013-06-08T05:36:00.002-07:002013-06-08T05:36:34.861-07:00Results are in..Well, both Clay and Mommy have had our fair share of laughing gas and sedation drugs the past couple weeks. Clay, with his sedation MRI, ECHO and chest X-rays last week, then I had my wisdom teeth pulled yesterday. (Blahhh!)<br />
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But since I've been a little laid-up, I figure nows a good time to finally update y'all on the results from Clay's procedures. Thankfully, all came back pretty good!<br />
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The chest X-rays showed that things are still where they're suppose to be, which I was relieved to hear because Clay hasn't been tolerating feeds as well lately...but I'll get to that issue in a bit.</div>
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Everyone always asks how his lungs look, if they've grown, etc. While the X-rays do show a picture of the lungs, it can't necessarily show how well they are actually functioning. I've come to understand that's why the doctors don't make a big deal about shooting X-rays every time we visit. Unless something is concerning to us, we leave it alone...In fact, this was our first X-ray in 6 months! He is breathing comfortably, even with some recent weans to his ventilator. So we're very happy with that!</div>
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The ECHO on his heart showed that things are functioning properly. While pulmonary hypertension can't specifically be measured in the ECHO, they can see how the heart is pumping and can look for indicators that pressures are high, such as having an enlarged right ventricle and having septum flattening. But thankfully, things looked good! This is especially great considering he's been without Sildenafil, which treats PH, for about 6 months now. Now, we can really get to work on weaning the ventilator and oxygen! We have an appointment with pulmonology in a couple weeks. Pray he will have great progress this summer! </div>
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And finally, the MRI showed that Clay does still have some fluid build-up around his brain. The doctor also said his brain is actually a little smaller than normal, but said that both of these things are common in children who have been as chronically ill as Clay. She said it was something they would continue to follow, but nothing they wanted to treat right now. As I've said before, I am not the least bit concerned with his noggin'. He is learning new things everyday and surprises me all the time with his progress! Big head, little brain, whatever, my boy's a very smart cookie and I'm not fretting that the results from the MRI weren't perfect. I'm just thankful it isn't causing us issues! </div>
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And speaking of learning new things, he has been doing so incredible picking up sign language. Omg, it is the cutest thing ever! Our speech therapist is very pleased with his progress too. She is very impressed with his word associations and also how well he does with sensory stimulation. We've been doing fun things like finger painting in pudding, playing in homemade play doh, and playing in rice...She says he is doing exceptional, especially considering how long he was in the hospital. I am so proud of him, I could bust! </div>
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Our physical therapy is still going very well also! He is doing really well standing and is learning to pull himself up, too..He is even taking steps with his little feet and its the sweetest thing ever! (Doing all these things with assistance, of course.)</div>
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We went last week to be fitted for ankle braces. PT recommended them because when he stands, he rolls his little ankles in and also hyperextends his knees, so the ankle braces will provide him with more stability and will help his muscles to strengthen in the correct positions. </div>
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The only thing that's been concerning lately is Clay's been having the pukies a lil more, and he's been losing some weight. He was at 22lbs at the last appointment we had with pulmonary, (he weighed 26lbs at his heaviest, back in November--which was almost considered obese for his age and was a lil concerning b/c carrying around that extra weight can affect his breathing capabilities--so we switched up his feeding regimen to slow him down.) So since the feeding changes back in November, he's slowly lost weight.. Some of which I contributed to him being so much more active nowadays. But the fact his weight was never leveling out and he continued to lose was starting to concern me and was also concerning to our pulmonologist, so we met with the dietician and she recommended taking his feeds to a higher calorie. The good news is that he's been gaining, and is now around 23 lbs. The bad news is that we've had to go back to nearly continuous feeds because if we try to increase the rate, he has major pukies. I'm wondering if it's him adjusting to the higher calorie food, or if it could possibly be related to his slight congestion lately. He's had a lil cough and I've had to suction a lot more lately...and when he pukes, his vomit looks mucous-y (sorry for the visual). Whatever's been going on has thankfully calmed down over the past couple of days, so maybe we're on the mend and can start to increase his rate again--this continuous feeding is for the birds. Y'all send some positive thoughts & prayers for that to be the case! </div>
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Here's a few pics of the latest:</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid6n54qDL-bPNBtDHbC2zzwuHHUOmBxkKjr0d3QfRn-R-i_zVmqDfXHoCv9Gl4ThGD_LfIdozel8PpXminCjcK7ibJEdvgxqY_X_SkgHW_rnwtTw9_ipKad-fos-bQuqfaraCo-d7znQ/s640/blogger-image-109748147.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid6n54qDL-bPNBtDHbC2zzwuHHUOmBxkKjr0d3QfRn-R-i_zVmqDfXHoCv9Gl4ThGD_LfIdozel8PpXminCjcK7ibJEdvgxqY_X_SkgHW_rnwtTw9_ipKad-fos-bQuqfaraCo-d7znQ/s320/blogger-image-109748147.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Clay's first swim! As you can tell, he loved it!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYT1HAkx7FkTvICQNfTBG86h-V-KFlcYA6ib3A9PUspFYM3j_hOvpXxZTAIJgUzlsQyDfKB92spNfK7dnmosjHGL4w8ACkj_XV0gt1AGxJEq-a6tZH1WIHXebnRrp0V3jMkkXW7ysr-w/s640/blogger-image--1617049049.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYT1HAkx7FkTvICQNfTBG86h-V-KFlcYA6ib3A9PUspFYM3j_hOvpXxZTAIJgUzlsQyDfKB92spNfK7dnmosjHGL4w8ACkj_XV0gt1AGxJEq-a6tZH1WIHXebnRrp0V3jMkkXW7ysr-w/s320/blogger-image--1617049049.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Watching the Legend's baseball game!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgqPhPTz-4x1P7Jg-3dAQfgBKS0IsXsGK47OOy-P9SpewhqTzg8bvKIwkl2pqyyeehwJR0hP2AsGzZpvBUOZZh4dYdIu_kLdM2eYHW6-5q9PK7T6V2B0QcfFubQZLWDssdRaIy-DfaVw/s640/blogger-image--1627250294.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgqPhPTz-4x1P7Jg-3dAQfgBKS0IsXsGK47OOy-P9SpewhqTzg8bvKIwkl2pqyyeehwJR0hP2AsGzZpvBUOZZh4dYdIu_kLdM2eYHW6-5q9PK7T6V2B0QcfFubQZLWDssdRaIy-DfaVw/s320/blogger-image--1627250294.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look out, Clay's at the wheel!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNwgJqrXgsmJuJfHSZo4TeuFtHhudd_B01qoDSJlo-mtpZTm5vqlPQ9HSpMMdzOpgPTVwvrklfGrKLg6W76Irx8ez52Ln974wTU1HdZYjz_AYR-s6z2ZLO7d2IHLOKyqi8s4TCv2y99A/s1600/May+2013+039.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNwgJqrXgsmJuJfHSZo4TeuFtHhudd_B01qoDSJlo-mtpZTm5vqlPQ9HSpMMdzOpgPTVwvrklfGrKLg6W76Irx8ez52Ln974wTU1HdZYjz_AYR-s6z2ZLO7d2IHLOKyqi8s4TCv2y99A/s320/May+2013+039.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He sits like this all the time...it's the cutest thing!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTZOKY4Q9UlIXcZQeq79qB9oe2-8HBKVN7velUPLpJ5FhLzE2INMJPNwU1ww0kEtxgORnVKX3zk6eD3lqiN-7pgl4DmAsmkLTZE2ZxGoLmP3d-g2a3gVWkXdgC-KzVPE26aUnW6ixRkA/s1600/may13+(38).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTZOKY4Q9UlIXcZQeq79qB9oe2-8HBKVN7velUPLpJ5FhLzE2INMJPNwU1ww0kEtxgORnVKX3zk6eD3lqiN-7pgl4DmAsmkLTZE2ZxGoLmP3d-g2a3gVWkXdgC-KzVPE26aUnW6ixRkA/s320/may13+(38).JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Celebrating Uncle Eli's graduation--Clay adores Uncle Eli & can say his name so well!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJKIXbXzrih83uXE9_D82TQqICvJQC44b3VJVSwHPhCjbqAxVqKot-3CIql27qxwv6Lz84tb8fefUjlhaLTlscTRT0jIrTqf-wWCK8vH3I98IcdvOITsJLkwsZKGNmxKXB0motmmxu6w/s1600/may13+(4).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJKIXbXzrih83uXE9_D82TQqICvJQC44b3VJVSwHPhCjbqAxVqKot-3CIql27qxwv6Lz84tb8fefUjlhaLTlscTRT0jIrTqf-wWCK8vH3I98IcdvOITsJLkwsZKGNmxKXB0motmmxu6w/s320/may13+(4).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doing what he does best--pulling out allllllll of his books :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZEfbfYfmhf7P8tTva4UWYmD4Ej9OCZhrW1mfYQnzeEvtrSdjPZ9ezAJaql2TWaXML_DgTa-lAX7Jv7RgQx86PRJ7w5Gw6vteDvHeURdrlvFULCKe7ZbxWUnPETektFWIqbGvNd_XnHg/s1600/may2013+053.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZEfbfYfmhf7P8tTva4UWYmD4Ej9OCZhrW1mfYQnzeEvtrSdjPZ9ezAJaql2TWaXML_DgTa-lAX7Jv7RgQx86PRJ7w5Gw6vteDvHeURdrlvFULCKe7ZbxWUnPETektFWIqbGvNd_XnHg/s320/may2013+053.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Three Miracle Men, reunited: Mason (also born with CDH), Clay, & Hunter (a 23 week preemie).</td><td class="tr-caption" style="text-align: center;"> Trach buds!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb3OTtlUTPBz1qbJNqLZ-W3qUzNj7U5XFDAWcXDuyll-Sk2HkAmV_MLBr46BwACSNNsM5saPYgbL9DWKhmq7x6XB1BcQ8ha4ut-m3t8sxtj8ZNivdfuUnoJZ7zeGJJiAEbAV1LXhgZWA/s1600/June+2013+007.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb3OTtlUTPBz1qbJNqLZ-W3qUzNj7U5XFDAWcXDuyll-Sk2HkAmV_MLBr46BwACSNNsM5saPYgbL9DWKhmq7x6XB1BcQ8ha4ut-m3t8sxtj8ZNivdfuUnoJZ7zeGJJiAEbAV1LXhgZWA/s320/June+2013+007.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gettin our feet wet at the creek!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiR-1QOLVsY-gcMqUc0bQMccqxCY1cNeGRa6MgPkY2qgnP_botGDAEJR5eEhPRNYuXfY1RBOxJu5TGMcj76CaiJ8Bkxe9Vf8IbZZ0AIBLoPTaEiN62RP2XkaeUBhFyqYYfk_M_HSOBqQ/s1600/June+2013+028.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiR-1QOLVsY-gcMqUc0bQMccqxCY1cNeGRa6MgPkY2qgnP_botGDAEJR5eEhPRNYuXfY1RBOxJu5TGMcj76CaiJ8Bkxe9Vf8IbZZ0AIBLoPTaEiN62RP2XkaeUBhFyqYYfk_M_HSOBqQ/s320/June+2013+028.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweetest thing. He LOVES throwing rocks in the water!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBOKPlA50QBShAzMClWscES3OkiQVZJEuoo26gpuVl9tGB1aQkjQMYeCUhU5H-wvY8PefLi4cGrHO7PEKGayPAsfu1Gz50CkeMOOifJ0OOZQtf8rQiOppLB7o65B_XTRflHcPT2UJBbA/s1600/June+2013+052.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBOKPlA50QBShAzMClWscES3OkiQVZJEuoo26gpuVl9tGB1aQkjQMYeCUhU5H-wvY8PefLi4cGrHO7PEKGayPAsfu1Gz50CkeMOOifJ0OOZQtf8rQiOppLB7o65B_XTRflHcPT2UJBbA/s320/June+2013+052.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing in pudding with our speech therapist!</td></tr>
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<br />
Thank you all, again, for your continued prayers and love and support. I don't know how else to say it...you all are the best!<br />
<br />
Here's to a happy, healthy summer for everyone! Enjoy!<br />
xoxoxo</div>
Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com1tag:blogger.com,1999:blog-5691576650944957625.post-43786282513671615592013-04-28T23:09:00.002-07:002013-04-28T23:09:28.902-07:00Happy Spring!Yet again, it's been a while since my last blog--my apologies, our dear faithful followers! <br />
<br />
Here's the haps:<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO8lJwp24KxFv83Sk2MrXRzvyaDRXg_VIpfRvH7GcAs8LEHbkidX05er13xmxJyi6_nTcLdGfPCmjPlvYXv0MTFpfU66Qg8PyCxJ1hQW_xwSLQL3bBYEvWyKVmZ_Gn195KcWot5oK3Tg/s1600/March13+007.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO8lJwp24KxFv83Sk2MrXRzvyaDRXg_VIpfRvH7GcAs8LEHbkidX05er13xmxJyi6_nTcLdGfPCmjPlvYXv0MTFpfU66Qg8PyCxJ1hQW_xwSLQL3bBYEvWyKVmZ_Gn195KcWot5oK3Tg/s320/March13+007.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We've found our inner artist..</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaWjtP8ZzT6dnhp0ol-MLD87HD8Bhq0mxTILrqOEQ201hqpOpk6hxy3H8_gMLEEEXxXKC1vJgdcpoQmzkMR-Yodq30ktrH-v7QIRr_ewdKXt9NEttOcQ4dlQT-a3k05mGrRb6tJIdfJQ/s1600/IMG_5327.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaWjtP8ZzT6dnhp0ol-MLD87HD8Bhq0mxTILrqOEQ201hqpOpk6hxy3H8_gMLEEEXxXKC1vJgdcpoQmzkMR-Yodq30ktrH-v7QIRr_ewdKXt9NEttOcQ4dlQT-a3k05mGrRb6tJIdfJQ/s320/IMG_5327.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We've trotted around on Trigger..</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi6ukGdr6rW3McDoI_sTdj1hOC1Q5AcXmAsEoSI4mwet3cnMQmCVnzY-Ou26wYk6myX_9hcCdX44xwKidSgz62dMxBOoQfDXdoU0M90l_XT7F97T3nTHg7B14uLPyWkYVl1z2ze-UZtw/s1600/IMG_5352.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi6ukGdr6rW3McDoI_sTdj1hOC1Q5AcXmAsEoSI4mwet3cnMQmCVnzY-Ou26wYk6myX_9hcCdX44xwKidSgz62dMxBOoQfDXdoU0M90l_XT7F97T3nTHg7B14uLPyWkYVl1z2ze-UZtw/s320/IMG_5352.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And explored in our playground fort..</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpY3OZygaBLikNipFg4okR0usii5WHiYiV8zH1cn7uCf-TXH_5vGoL7Maa1rttGxqdl9S07H-EdWjTHzJGH57FTjXiZiadV74BbIs0Zpuz06L5KqVwjZ0dk_kiOaGFeUpgEi9DfbjzsA/s1600/april13+062.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpY3OZygaBLikNipFg4okR0usii5WHiYiV8zH1cn7uCf-TXH_5vGoL7Maa1rttGxqdl9S07H-EdWjTHzJGH57FTjXiZiadV74BbIs0Zpuz06L5KqVwjZ0dk_kiOaGFeUpgEi9DfbjzsA/s320/april13+062.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We've taken Pappy on a dirtbike ride..</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNsKsiDP9TpOENR_HUkgbqILApB58ZyWmodqJHoJqYeWvT59CMGJLxZxRiGNGCYGrlKi5Vo4u_XHk_ag77Pqra59hEDh6lCCBNjETci5pjiRJdEDxrkV8716jaPhhbkQ5VTgYl7raG5w/s1600/april13+105.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNsKsiDP9TpOENR_HUkgbqILApB58ZyWmodqJHoJqYeWvT59CMGJLxZxRiGNGCYGrlKi5Vo4u_XHk_ag77Pqra59hEDh6lCCBNjETci5pjiRJdEDxrkV8716jaPhhbkQ5VTgYl7raG5w/s320/april13+105.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We've petted puppy dog noses..</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTAU-Tfg1_JXOgIO08bYawxOwJVfjPBKDVYCLUjojwsnS5o2CC-5NwLCiXOPfdwkCIYzvg-lEhtrNj88TzE0X6R7zPrkWlKwiKOcszhKNSLenv77vUmkFgig4yMZshHCNEtR3sZSOVQw/s1600/april13+114.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTAU-Tfg1_JXOgIO08bYawxOwJVfjPBKDVYCLUjojwsnS5o2CC-5NwLCiXOPfdwkCIYzvg-lEhtrNj88TzE0X6R7zPrkWlKwiKOcszhKNSLenv77vUmkFgig4yMZshHCNEtR3sZSOVQw/s320/april13+114.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And learned that legs are made for standing..(!!!!!!!!!!!!)</td><td class="tr-caption" style="text-align: center;"></td></tr>
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<tr><td style="text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjJqaxP7drsH71JWUCk7sPDTZOTiN2bLRTwF42QWif8nvtwxfts4ngiWtQJVxAma79mv3N9jexW4zR6kv6NcxjlZbozL6M4hskkNo92CnseSz3E4pP6SQdxijgp85NmU7Y-MFqMBYCDg/s320/DSC_0410.jpg" width="239" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We've watched soccer games (on a chilly day)...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSA3NUgS66Ao6b-konYzvbWCvNNs4Ko9foiW2XydC79XZq0yRzn1m-G28ha0G7_vQIl-rhOK-LjTSnT339QYbSNq7H3QOkUfX0GkUQtSjUNwPSC4WDgBjshndwz-qWbCkUWCEAOY2n2g/s1600/april13+124.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSA3NUgS66Ao6b-konYzvbWCvNNs4Ko9foiW2XydC79XZq0yRzn1m-G28ha0G7_vQIl-rhOK-LjTSnT339QYbSNq7H3QOkUfX0GkUQtSjUNwPSC4WDgBjshndwz-qWbCkUWCEAOY2n2g/s320/april13+124.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We've tried out the swings at Lake Reba..<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgogcy0mqoTEKgsPXsG-SGxqiL9DD7cloj9qF-WPsCERBNc9Mi_FmOgEgU9Q3CRZqzFNKS_tHsqJfYMQCLbEpDRhB1gxnJo_znntqmrvztxkz14r1mHovsVUwh_-oTx5UvsLr5VnJcLLQ/s1600/20130426_151516.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgogcy0mqoTEKgsPXsG-SGxqiL9DD7cloj9qF-WPsCERBNc9Mi_FmOgEgU9Q3CRZqzFNKS_tHsqJfYMQCLbEpDRhB1gxnJo_znntqmrvztxkz14r1mHovsVUwh_-oTx5UvsLr5VnJcLLQ/s320/20130426_151516.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And at the Choo-Choo Park.. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjJqaxP7drsH71JWUCk7sPDTZOTiN2bLRTwF42QWif8nvtwxfts4ngiWtQJVxAma79mv3N9jexW4zR6kv6NcxjlZbozL6M4hskkNo92CnseSz3E4pP6SQdxijgp85NmU7Y-MFqMBYCDg/s1600/DSC_0410.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9Q16eiQ1koX4WP0L_JflHOy9xDoTY9yNxGbq6mfImrHXMiuYZWUdghUiwkCLOW-wZQtzMnt68EoGP073M90P3n6CfLUoqL-pI0iuO1IhXZGCPkWgfNp6j2WoLfhAQFfMEJqzL6MwG0A/s1600/DSC_0524.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9Q16eiQ1koX4WP0L_JflHOy9xDoTY9yNxGbq6mfImrHXMiuYZWUdghUiwkCLOW-wZQtzMnt68EoGP073M90P3n6CfLUoqL-pI0iuO1IhXZGCPkWgfNp6j2WoLfhAQFfMEJqzL6MwG0A/s320/DSC_0524.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We've had our 18 month check-up...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdsScoBA4MrgOUw9aTwLG_6uaT2jz7B-BBJfIFuWKVrRY8OhrzqEgQB4N-NhyphenhyphenUHMZXNaS9K_jShBo5RWYAXvCP69dSdJjKHB7MsFbkuBJC202CiYeck2E_CG97HF_keLRVPXSxI8lG0A/s1600/DSC_0523.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdsScoBA4MrgOUw9aTwLG_6uaT2jz7B-BBJfIFuWKVrRY8OhrzqEgQB4N-NhyphenhyphenUHMZXNaS9K_jShBo5RWYAXvCP69dSdJjKHB7MsFbkuBJC202CiYeck2E_CG97HF_keLRVPXSxI8lG0A/s320/DSC_0523.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">(We love the thoughtful staff at the Children's Clinic!)</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjJqaxP7drsH71JWUCk7sPDTZOTiN2bLRTwF42QWif8nvtwxfts4ngiWtQJVxAma79mv3N9jexW4zR6kv6NcxjlZbozL6M4hskkNo92CnseSz3E4pP6SQdxijgp85NmU7Y-MFqMBYCDg/s1600/DSC_0410.jpg" style="margin-left: 1em; margin-right: 1em;"></a><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifLOXe0h6fRM9_GWuxIbEfyWm9J52n5S0ggBOsG_yZrtUdt2vwYc3QytGCa68Y1GCVxlzsTGAlnm086Dpu1X7_WEdZ5Y2AMTEpiHP81qXHgeFliqma-4nYuEYnYwIccmOaUwxYnnesew/s1600/20130424_103245.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifLOXe0h6fRM9_GWuxIbEfyWm9J52n5S0ggBOsG_yZrtUdt2vwYc3QytGCa68Y1GCVxlzsTGAlnm086Dpu1X7_WEdZ5Y2AMTEpiHP81qXHgeFliqma-4nYuEYnYwIccmOaUwxYnnesew/s320/20130424_103245.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We've done lots and lots of wagon-riding (and cute-face-making!)...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">We've watched the parade at the Mountain Mushroom Festival.. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">And loved it! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">We even made it to church for the very first time!</td></tr>
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<br />
As you can see, we've been busy! And we are thoroughly enjoying SPRING!<br />
<br />
Clay absolutely loves to go 'bye-bye' (his favorite word!), and I feel that we owe him a change of scenery when we have the opportunity. I believe we have all gotten a little stir-crazy in our 'corner' all winter (I am positive that I have!).<br />
<br />
As far as the details:<br />
<br />
-Clay is TOTALLY being fed into his stomach now, we even got his GJ-tube switched out for a regular G-tube. Which is awesome! (Especially because we've accidentally pulled his tube out a few times since the switch...thank goodness it's no big deal to pop a G-tube back in!) <br />
-We are currently doing 4 bolus feeds a day, so it's more like eating regular meals, rather than continuously being fed all day. We're working on a faster rate for him. He currently gets 300mls over 1-1/2 hours, but we're trying to work our way up to 30min. It's already proven he has some issues if we push him too much (lots of puke, projectile style..zero fun).<br />
-As far as eating by mouth...we've still got a long ways to go but he is showing encouraging progression! He seems to really like tasting things, so we've let him lick on a few
things.. apples, bananas, salt & vinegar chips and bacon, to name a
few (don't judge!), if the tongue-smacking is any indicator, he enjoys them. But he
usually ends up breaking a piece of the food off in his mouth, which results in
a gagging fit. It seems to me that he is scared and unsure of what to do once
the food is actually in his mouth, so he freaks out and gags--which is totally logical--he's never
had to eat by mouth! I'm sure it would be a scary new thing to learn. But we're working on it!<br />
He gets SO excited when I turn his feeding pump on for a meal. Before I hook up to his g-tube, he loves to put the end of the feeding tube into his mouth and wait for me to run a little bit of food through to him. He'll smack his tongue and squeal like a piggy! A lot of the time, he lets the milk run out of his mouth instead of swallowing it, but some of the time he swallows it. Like tonight for example...(I'm hesitant to tell this b/c I don't want to jinx anything!)...but he was especially enjoying the 'bites' he was getting through the tube, so I put about 10mls in a bottle to let him try. He took every bit of it! He chews on the nipple of the bottle rather than sucking, but he was still allowing the milk in his mouth and swallowing! Y'all say a prayer that he'll get the hang of the whole 'eating thing'. What a wonderful day that will be!<br />
-We have also been okay-ed to do some blended food through his tube! Yayaaaaa! I'm so
happy about this. So far, he's had banana, avocado, broccoli,
cauliflower, carrots, sweet potatoes, applesauce, spinach, eggs.. a
pretty good start! My goal is to transition to a total blended diet
eventually. The blended food does still go through his tube, so I've had
issues with getting the consistency just right. It's a learning process! I will admit
how much EASIER powdered formula is, though.. Like, SO much easier. But
not nearly as rewarding or nutritious...that's what I keep reminding myself! The blended diet will get much easier with time & practice, I'm sure.<br />
<br />
-We had our 6 month review with the First Steps program a few weeks ago...we looked
over the goals we had set for him initially and made new goals for the
next six months. It was amazing the progress he had made! We were actually discharged by the developmental instructor, because there ain't a
thing wrong with this boy's cognitive abilities. He's sharp as a tack! ;)<br />
-We were able to pick up speech therapy, I'm so thankful! She comes every week and
she is great. We are working on lots of communication skills. He does babble and talk quite a bit, but he mainly makes the 'B' sound...nearly everything he points at is a 'ball' or a 'buh' or 'bye-bye'. Here lately he's added in some 'M' sounds--I tell ya, a 'momma' sure is nice to hear coming from this boy's mouth! We're working on sign language too and he's doing great! We've been doing the signs for 'ball', 'more', and 'go'. If you know signs, you know all of those signs are somewhat similar...so he kind of ends up doing a mix of all three when you ask him to tell you one...but at least he is learning that signs have meaning and that it's a powerful way to communicate. <br />
-We are still getting physical therapy twice a month and he's making lots of progress! She did bring a stander to help him learn to bear weight on his legs:<br />
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Yeah, what a contraption, right? I feel a little cruel strapping him into that thing. But thankfully, I haven't had to use it in a few weeks--it must've done the trick, because he has realized legs are made for standing (see proof above!). He hasn't learn to pull up and stand on his own yet, but when we place him in front of something that he can hold on to, he will stand for a bit. I'm so proud! He has made such progress in the past few months, it's crazy! Can't wait to see what he learns next :)<br />
<br />
-As far as his breathing goes, we're still hanging out with the ventilator, on the same settings we were discharged from the hospital with 10 months ago. We have an appointment with his pulmonologist on May 7th, and I expect them to do some weaning or give us the go-ahead for some trach collar trials again. I am confident he would do well with some changes. Despite being on a ventilator 24/7, it's hard to think of him as 'ventilator dependent'. When his vent circuit disconnects (which it does regularly now that he's mobile), it just doesn't seem like a big deal. In fact, he will scoot over to the ventilator and push the flashing red 'silence' alarm button, that way we don't hear the beeping sound alarming us that his circuit is disconnected, haha! The little stinker even turned his ventilator completely off the other day, so maybe he's trying to tell us something!? Again, please say a prayer his little lungs can handle things on their own, without mechanical assistance...and that the transition off of the ventilator will be smooth and uneventful!<br />
<br />
-Clay is also scheduled to have a sedation MRI and ECHO done on May 29th. It is going to be an outpatient procedure (which I am thankful!). The MRI will be done on his head, as a follow-up to one he had in January 2012, while in the NICU. His head is larger than the average bug's, which is concerning to one of our doctors, so she's requesting it be followed...but his head has always been big, even in-utero, so I'm not concerned with it. I'm choosing to believe his big head is because of his big brain=the next Einstein! ;)<br />
The ECHO will be done to hopefully get a better picture of the pressures in his heart, to see if his pulmonary hypertension is still present. This issue could really use some big prayers. Pulmonary hypertension is the killer of CDH babies...and it's not just babies... I just read today that a 37 year old CDH survivor recently passing away due to complications with life-long pulmonary hypertension...all cause by the diaphragmatic defect that he was born with. Very, very heartbreaking news.<br />
Please pray that Clay's brain, heart and lungs are all functioning perfectly, just the way they should. I am hoping & praying for good things on May 29th. I will update when we learn the results!<br />
<br />
Well, I think I've covered everything newsworthy. I'm sure you can tell by the pictures how much of a joy Clayton Cash is to us...and yes, for those wondering, he really is always as happy as he looks in the pics! He has such an infectious, wonderful spirit.<br />
I'm so happy we've been able to get out and meet a few of our most faithful followers in person. I'm brought to tears nearly every time...you all have no idea how much the love & support you've shown our family throughout the past 18 months mean to us! We love you all!<br />
<br />
Now, get out and enjoy life, y'all. It's too beautiful not to!<br />
<br />
Love & peace from the Eaton's xoxoxo!<br />
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<br />Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com5tag:blogger.com,1999:blog-5691576650944957625.post-53271027914437986352013-02-19T10:00:00.002-08:002013-02-19T10:02:54.677-08:00Things always have a way of working themselves out...I hardly know where to begin, there's a lot of good stuff happening around here!<br />
<span id="goog_426186943"></span><span id="goog_426186944"></span><br />
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<tr><td class="tr-caption" style="text-align: center;">We got our curls cut off a couple weeks ago :(</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">But he's still just as handsome as ever ;)</td></tr>
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<span id="goog_426186943"></span><span id="goog_426186944"></span><br />
First of all, I am so so so glad we decided to postpone Clay's Nissen Fundoplication surgery. Because................he has been tolerating his G-port being clamped throughout the day and is even tolerating some G-tube feeds!!!!!!<br />
For those that need refreshing: back in May, when he had the G-tube placed, we learned that his stomach had an unnatural bend in it that caused the stomach contents to not empty into his intestines; Clay would puke if the littlest amount was in his stomach. Because of this, we had the GJ placed, so we could feed his jejunum, while we drained to the G-port to keep saliva/stomach juices/bile off his tummy so he wouldn't puke. So that's how we've been operating--20 hrs/day continuous feeds through his J-port and constantly draining his G-port.<br />
Just by accident (or divine intervention), I forgot to unclamp his G-port when changing out the drain bag attached one night--which means no stomach juices could escape his tummy. Eric noticed about 8 hours later, and he suggested we leave it clamped throughout the day. I was apprehensive, I'll admit...but we ended up leaving it clamped for about 26 hours straight and Clay didn't puke once!!<br />
So, I emailed our surgeon, to see if he would be okay with us trying to feed his G-tube. He agreed and recommended starting off with 4 hour trials...we've worked our way up to 7 hours today and I'm so happy/excited/relieved to say he's done excellent! No pukies at all!<br />
The goal will be to get him totally off the J-tube feeds and then we will try to work up to doing bolus feeds through his G-tube. If he tolerates bolus feeds, the Nissen surgery will not be necessary. That thought makes me so happy I could cry. Y'all please send Clay's tummy some prayers and good vibes...he can do this, I just know it! <br />
<br />
We also had appointments with Clay's pulmonologist, nephrologist and cardiologist last week. I'll just go into a big, long explanation of them all since I feel like I've left you all out of the loop the past few months..<br />
<br />
- Nephrology: We see the nephrologist because Clay has a history of high blood pressure. The cause doesn't seem to be related to one thing specifically; the doc says it's multifactoral and not necessarily an issue with his kidneys. But still, we are followed by them. Clay takes a dose of Enalapril once a day to help combat the high blood pressure. When we seen the nephrologist Wednesday, he thought Clay looked great and didn't think a urine sample or kidney ultrasound was necessary--which I was thankful--Clay was already riled up enough after the numerous attempts to get his blood pressure. Docs plan is to let Clay grow out of his medication, rather than 'rock the boat' and wean anything. Sounds good to us! We see them again in six months.<br />
<br />
- Pulmonary: We had a different pulmonologist this week at clinic, not our usual Dr. Anstead. But he was nice and also thought Clay looked great. He fooled with Clay's ventilator and turned the rate off for a few minutes to see how Clay tolerated it, and he didn't mind at all--which I knew he wouldn't. The ventilator rate (breaths per minute) is set at 6. Clay usually breaths 40-60 breaths per minute, so the ventilator isn't doing a thing in that regard. But the doc didn't want to make any changes right now--with our surgery still in the books for March, he wanted to get past that first and then we can start weaning some settings as long as Clay is up for it. He didn't find it necessary for any labs or x-rays, since he has been doing so well. Sounds good to us! We will see them again in a couple months.<br />
<br />
- Cardiology: We are followed by the cardiologist because of Clay's pulmonary hypertension and his (questionable) narrow aortic arch. Every time we see them, we have an ECHO to try to get a check on the pressures in his heart, but every time Clay is being ornery and won't let them get a good picture (can't say that I blame him). So this time, we opted out of torturing him with the ECHO and decided to schedule a sedation ECHO within the next couple of months. If we end up needing the Nissen surgery we will coordinate with that, if not, we will schedule it separately. We really need to get some good pictures to see if his pulmonary hypertension has resolved. Clay has been off of Sildenafil (aka, Viagra) since the beginning of December because our insurance decided they wouldn't pay for the $500/month medication. Well, we sure as heck couldn't pay for it either, so he has been going without it. I think it's pathetic that the insurance company made the decision instead of the doctors...but hey, there'd be no way in this world we could pay for our 2 million dollar baby (and counting) with out the insurance, so I don't guess I can complain too much. And thankfully, I have not noticed any changes in Clay since he has been off the medication. He's just as happy and playful as ever! We are leaving him on 2 liters of oxygen just in case he may have any unresolved pulmonary hypertension. Anywho...it's up in the air about when the sedation ECHO will be, but it'll be sometime in the next couple months.<br />
<br />
So, that's the 411 on his recent appointments...now to fill y'all in on this boy's developmental progress!<br />
<br />
We've been having in-home sessions with First Steps since October-ish. At first we couldn't get any OT, PT or Speech Therapy out here--our service area was limited because of the location. So we've been working with a Developmental Instructor. Her job is mainly focused on cognitive development...she's given me a few good tips and suggestions to try with him, but honestly, she doesn't do much more than I already do with him, so the therapy has kind of been boring. At our NICU Graduate Clinic appointment back in November, they referred us to Physical Therapy but we were going to have to take Clay to a clinic in Lexington a couple of times a month for those services. But.....we got a call a few weeks ago and said they found a PT provider willing to pick up our service area...so we now have a PT coming in-home twice a month! Yay!!!<br />
We had our first session on Monday. AND I LOVE HER! It literally brought me to tears after she left...she answered so many of my questions and gave me so many good things to work on with Clay. She was so nice and so knowledgeable and we just clicked...what a relief and such a blessing to have her help! I think Clay liked her too, but he got a little ornery with her because she was making him work, lol.<br />
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She was overall very pleased with how he looked. Of course, we just need to get him stronger. Just until the past couple of weeks, Clay has pretty much refused to bear weight on his legs...he'd just draw them up like a little froggy. But now he is willing to put some weight on his legs and will stand up good when he wants to (have I said he's ornery?). The PT (her name is Amber) said he has a lot of range of motion in his ankles, which she is afraid will make it hard for him to stand...so she thinks leg braces may be in our future. First she is going to try to get us a standing frame. I googled it and this is what I found:</div>
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<tr><td class="tr-caption" style="text-align: center;">I think it'll be really good for him!</td></tr>
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<br />
<br />
Like I said, just within the past few weeks Clay has really seemed to take off. He has sat himself up from lying position two different times now. He really reaches for things and scoots himself around spins in circles and gets his self all tangled up in his tubes and hoses, lol!<br />
He is such a little busy body with his toys. He loves to play and it's the cutest thing when he gets focused on a task. I just love to watch him learn.<br />
He still loves books...he 'bout wears me out wanting to read so many books, lol! But I love it...his favorites are The Little Blue Truck, I Love You Stinky Face, and any of the books that mommy makes animal noises while reading, ha! He really is the most content and happy baby. I am so so so blessed to be his mommy.<br />
As far as his oral aversion goes, I think he is slowly but surely overcoming! He always has something in his mouth, be it his fingers or toes, his toys or his tubes, lol! I have also been giving him pieces of my apple or banana while I'm eating, just so he can explore and get used to different textures. He usually does end up sticking it in his mouth and he doesn't seem to mind the taste! He gets a little freaked out if he bites off a piece; he usually gags if this happens and I quickly get it out of his mouth. I've given him little tastes of my homemade yogurt and he smacks his lips and acts like he likes it!<br />
I am so anxious to give him real food. Even if it is a blenderized diet through his G-tube. I know that real food will do him a world of good. It just makes sense to me that he would get stronger and his body would heal so much better if he were getting quality nutrition. The formula he's on is obviously doing a pretty good job, but I know real food will be so much better. Especially produce from our backyard (and Nana & Pappy's), eggs from Nana & Pappy's chickens (hopefully we'll be getting some chickens too soon!), butter & milk from Uncle's cow, REAL FOOD!<br />
We all need real food. I've been learning a lot about nutrition lately, thanks to a book called Nourishing Traditions and a membership to the Weston A. Price Foundation. If you have any desire to eat healthy and feed your family good quality food, I highly recommend that book and that foundation. It is truly life-changing. I am by no means following a true WAPF diet yet, but I have really been trying to cut out the processed junk, the sugar and the empty calories and I have lost about 10 pounds and feel SO much better. I have so much more energy and am just altogether happier. Once Clay is getting fed totally through his G-tube, you best believe I'll be giving him the same good stuff!<br />
<br />
So many good things happening around here, we are so blessed. Next week, it will be 8 months since we brought Clay home. His first 8 months in the NICU felt like a lifetime but the past 8 months at home have flew by! It is absolutely amazing the progress he has made. Thank you all for cheering us on every step of the way. We love you all and hope to update with lots of more good news soon!<br />
<br />
Xoxoxo!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcdUv3zQHrWAPOqIGyxXSf645pEq73bt0MKDWBw81HMS8ZSW23F-AlTuVtB5ojNK_PPOXsUmgbvTfCedGM13v7WQGblpdv8b-QrlBBU9d38GcNKEypMohrnU217lRCXyTbLnk7o3PKqQ/s1600/winter13+028.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcdUv3zQHrWAPOqIGyxXSf645pEq73bt0MKDWBw81HMS8ZSW23F-AlTuVtB5ojNK_PPOXsUmgbvTfCedGM13v7WQGblpdv8b-QrlBBU9d38GcNKEypMohrnU217lRCXyTbLnk7o3PKqQ/s320/winter13+028.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">:)</td></tr>
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<br />Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com2tag:blogger.com,1999:blog-5691576650944957625.post-7804101928647861112013-01-24T09:01:00.000-08:002013-01-24T09:01:55.210-08:00Nissen surgery postponed..Clay was scheduled to have the Nissen Fundoplication surgery this coming Tuesday, January 29th. I've been dreading it more and more everyday...both the actual procedure, but more so for the 7-10 day recovery in the PICU (or more, knowing how things usually go with Mr. Clay-bug). <br />
With the flu and RSV and all these nasty bugs going around, it's no place for a baby with lots of medical issues to be, unless absolutely necessary. So I ended up emailing our surgeon yesterday and told him of my concerns--he agreed, and we've rescheduled for March 12th. <br />
So, I'm relieved for the moment. But it's got me feelin' like a college student again...when the professor pushes back a deadline for a big report, then you dread it even more in the end. Regardless, I think it's a better choice for Clay. He's thriving at home, no issues with his GJ feedings (*knock on wood*)...it would probably be crazy to bring a child like Clay into the hospital for a non-emergent surgery at this time of the year. <br />
Y'all please say a prayer this works out for the best and that Clay will continue to thrive and stay healthy. He's still hammin' it up around here--we are so thankful for his sweet smiley face. <br />
Thank y'all for keeping up with us...we appreciate the support more than you'll ever know! <br />
Here's a few pictures of the silly boy:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCITz0PXGaePeD5BuRpS3GkuquXT2xlFwOscjtGNhazxKsjKeuqjgLKUwb8up_dYVw42brXuvhqdkqxm0JDtKycgeWDu5FpvaQ6zpi5aaJnFTpfJd_TFJfVaFFwhGYxIgeRSJT6dfWpA/s1600/Winter+2013+043.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCITz0PXGaePeD5BuRpS3GkuquXT2xlFwOscjtGNhazxKsjKeuqjgLKUwb8up_dYVw42brXuvhqdkqxm0JDtKycgeWDu5FpvaQ6zpi5aaJnFTpfJd_TFJfVaFFwhGYxIgeRSJT6dfWpA/s320/Winter+2013+043.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Him's bad to the bone..</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcHcXmMhOkCJbYUuQNLcU9Ll2fN-1EKyUDit5waLeDsRFN38IBvGkUgagW5ng2A52trj1_qC_pscA5JplbIwwY_L3gDqfnvwplQg_zIoDDdhjH1qwf_vzH_z7m4KzMAWtQidAlgwNVcg/s1600/Winter+2013+034.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcHcXmMhOkCJbYUuQNLcU9Ll2fN-1EKyUDit5waLeDsRFN38IBvGkUgagW5ng2A52trj1_qC_pscA5JplbIwwY_L3gDqfnvwplQg_zIoDDdhjH1qwf_vzH_z7m4KzMAWtQidAlgwNVcg/s320/Winter+2013+034.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big boy in the tub!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_NuAVQP9AQm17b4jGhSci05zF1_sCo90FjkfUftxDguyXPiXulKYWt1iWUwmNAU_-4QIkd6byudaAatK7hrZ4kv8yOOTk8kZphvh62G_1AFwDcgRmGNdIbxm8Lc0Sz9UgwSNWkyt5Gg/s1600/Winter+2013+040.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_NuAVQP9AQm17b4jGhSci05zF1_sCo90FjkfUftxDguyXPiXulKYWt1iWUwmNAU_-4QIkd6byudaAatK7hrZ4kv8yOOTk8kZphvh62G_1AFwDcgRmGNdIbxm8Lc0Sz9UgwSNWkyt5Gg/s320/Winter+2013+040.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Reckon it's time for a haircut?</td></tr>
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Lots of love & peace to you all!<br />
XOXOXOEric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com3tag:blogger.com,1999:blog-5691576650944957625.post-16167744690134621942012-12-29T20:38:00.001-08:002012-12-29T20:39:55.679-08:00Happy Holidays!<div style="text-align: left;">
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It was a very Merry Christmas here in the hills...so thankful that our sweet boy was home with us to celebrate this year.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzWJj198i_7bi-kA_pZvvpHa8tyMrUMJH0VXAma_frm-IniQQKQabTpVh7DpmYyM4fBzMVug8dgreJJRbHGWD9DW0AuVRcSylIKjNus4CQO8HK6k-WCExrZppzGLBaPikmv37gxg0USg/s1600/IMG_4987.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="237" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzWJj198i_7bi-kA_pZvvpHa8tyMrUMJH0VXAma_frm-IniQQKQabTpVh7DpmYyM4fBzMVug8dgreJJRbHGWD9DW0AuVRcSylIKjNus4CQO8HK6k-WCExrZppzGLBaPikmv37gxg0USg/s320/IMG_4987.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I've been such a good boy :)</td></tr>
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Clay didn't seem too interested in ripping the paper off the presents or even what was under the wrapping, but he sure was all eyes...just watching all the madness :)<br />
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He got to visit with lots of family & he entertained us all with his big cheesy grins. I cannot say it enough, this child is a HAM!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkTF_0U-UZimyqR4DbsF3XmZuLJ4NSA4eKkjY8zPGrGPiAdbCo2Escc1qSFioQ2hoUoseViCHllV3c-ZjgSKcaoBGkEqYIuiQnqPbpCn7qSr2JseSk8ntc_d5RN_X4mXkl3-pTfHRQgQ/s1600/Christmas+2012+002.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkTF_0U-UZimyqR4DbsF3XmZuLJ4NSA4eKkjY8zPGrGPiAdbCo2Escc1qSFioQ2hoUoseViCHllV3c-ZjgSKcaoBGkEqYIuiQnqPbpCn7qSr2JseSk8ntc_d5RN_X4mXkl3-pTfHRQgQ/s320/Christmas+2012+002.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yep, I'm a HAM! ;)</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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He doesn't meet a stranger and takes up with anybody. He is the friendliest baby...and the happiest. <br />
Even though we do have a lot of extra 'stuff' to deal with, he really does make it easy on us. We are SO SO blessed.<br />
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I'm also thankful we've managed to keep him healthy so far this cold/flu season.. *knock on wood* We've all had our flu vaccines and he's gotten two rounds of his RSV vaccinations, so hopefully we can keep it up!<br />
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There's not much new medical stuff to report, we didn't make any changes with his ventilator settings or anything at his last doc appointment. We have an appointment with Dr. Draus, our trusty ol surgeon, on Friday the 4th...we'll be setting a date for the Nissen then.. I dread it :/<br />
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We have been trying out the Passy-Muir valve... which is a valve that connects to the vent circuit & forces him to exhale air out of his mouth/nose instead of his trach. The PMV is also supposed to make it easier for him to talk. It is an adjustment for him, as you can imagine. But he does pretty good with it, although he talks a lot more WITHOUT the valve! He's learning to say 'ball' and 'bye-bye' and it's so stinkin' sweet!<br />
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He loves looking out our window at the neighbor's horses in the field. And he loves to see our dog too. We're planning to get a puppy in a couple of weeks and I can't wait to see how he reacts to it! <br />
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My little Clayton Cash is such a joy. He never cries, but here lately, when he's sleepy, he cries for his mommy. And I can't help but feel so happy. So many times I've wondered if he knows me as his mommy, but I think I can now rest easy :) I know I've got him rotten, but I can't help it!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhuatj1OmmJnJib37Am72YJ3f8IKzfakC6bcUnsEo3UHxaXOtBQkuzrDjZ94gK4H8R7nTCNLN2PwPDUIIZ5FU2KH0m5FbAr-uyd55ruXwJAqaL8lY5pN3brA4Yek1Egz4346cCy5xvjA/s1600/Christmas+2012+016.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhuatj1OmmJnJib37Am72YJ3f8IKzfakC6bcUnsEo3UHxaXOtBQkuzrDjZ94gK4H8R7nTCNLN2PwPDUIIZ5FU2KH0m5FbAr-uyd55ruXwJAqaL8lY5pN3brA4Yek1Egz4346cCy5xvjA/s320/Christmas+2012+016.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He is my world <3</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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The very best Christmas present! </div>
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I hope your holidays have been filled with happiness & love and I wish lots of blessings for the New Year.. Bring it on 2013! ;)</div>
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XOXOXO!</div>
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<br />Eric and Hannahhttp://www.blogger.com/profile/15059868118062131501noreply@blogger.com1