Saturday, December 29, 2012

Happy Holidays!

It was a very Merry Christmas here in the thankful that our sweet boy was home with us to celebrate this year.
I've been such a good boy :)

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 :)

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!

Yep, I'm a HAM! ;)

He doesn't meet a stranger and takes up with anybody. He is the friendliest baby...and the happiest.
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.

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!

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 :/

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!

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!

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!

He is my world <3

The very best Christmas present!

I hope your holidays have been filled with happiness & love and I wish lots of blessings for the New Year.. Bring it on 2013! ;)


Saturday, December 8, 2012

Just a lil update...

Figure it's about time for an update, since it's been over a month!

I swear, this child of mine is a CLOWN! He keeps us laughing with his silly faces and little games. He loves to make people laugh. I love it! One of his favorite things to do now is cross his eyes at me. Such a goober!

He's been getting into everything lately. Even though he's not mobile, I still have to keep a very close eye on him! He's discovered the whole 'cause & effect' thing. He'll yank on his feeding tube & watch it shake the med pole. He's yanked on his ventilator circuit too hard & pulled the humidifier chamber off the shelf, which spills water into his circuit, which about drowns him--no good! So we had to bungee cord the humidifier to the shelf so he won't pull it off...the little rascal!

He's made big strides developmentally in the past few months, with no formal therapies, but we had an appointment with the NICU Grad Clinic last week, and they referred us to Physical Therapy & Speech Therapy. We can't get them in-home (one disadvantage of living in the boonies), so we have to travel to an office, but I know it'll be worth it. Even if we just visit them once a month, they can give me things to work with him on at home.

We go see Speech Therapy on Wednesday, the 13th, and I'm really excited--we get to try out a Passy-Muir valve. I'm not totally sure how it works, but it's a valve that will allow Clay to 'talk' with his trach. He already does a good job of making noise around his trach anyways, so I'm sure he'll do great with the new valve. I'm excited at the thought of getting to hear him laugh. I bet we won't be able to get him to hush! ;)

We also see Clay's pulmonologist on Wednesday. Even though it's been 3 months since he caught that nasty pneumonia, we're still feeling the effects of it. He still requiring about 2 liters of oxygen, compared to the 1/2 liter he was on before...and he still works harder if the vent becomes disconnected. So I doubt any changes will be made at his appointment. Which I am okay with, I just want to make it through cold & flu season with no more illnesses. Please say a prayer we can do it! Then maybe this Spring we can start doing trach-collar trials again...

Another thing on our radar: surgery #9 (or is it 10?).. We met with Dr. Draus, our surgeon, a few weeks ago and we talked about going ahead with the surgery to fix his stomach issues. Dr. Draus also recommended going ahead with a Nissen fundoplication, which will help with reflux and keep him from aspirating. Click Here for more info on what a Nissen is, if you're interested.

We're scheduled to meet with Draus again at the beginning of January, and we'll set a date for the surgery at that meeting. It'll probably be another very invasive surgery and another week-or-two-long PICU stay...I'm dreading it, to say the least. But it will be nice to get rid of the J tube & start feeding his stomach. Then we can start working on oral feeds--which I know will be a battle all it's own--but we'll get there eventually!

Y'all say a prayer for my Clay-bug. He's been doing really well and acting like he feels so good. Pray we can keep him like this! We would love to have Christmas with our baby at home this year :)

Lots of love & peace to you all! XOXO!