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!
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.
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:
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| (This pic was pre-haircut. Aww, I miss those curls!) |
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| And so thoughtful. |
We celebrated Clay's 2nd birthday with a party with lots of friends & family! It was a beautiful, wonderful day.
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As you can see, Clay had a good time too :)
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!
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.
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 ;)
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.
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| He loves him some basketball...you can see the concentration in his tongue & check out that form ;) |
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| Buckets! |
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!
Speaking of getting the trach out, our CDH buddy Mason got his trach out on Halloween! He has been doing great. Thank God!
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!
