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Friday, August 7, 2009

End of week 1 is done!

Christian and his tummy time.
"I want my fist!"

Finally, the end of our first week and my favorite PT came today!!! Yipee! She has so much experience and knowledge about little babies with disabilities or injuries. She used to have her own practice with her husband but sold it in order to have a less hectic work schedule after she had her babies. In her practice, they used to do hyperbarics and she's the one that studied under Newbauer who was some kind of pioneer for HBOT. So, yes, tons of experience. But she only comes on Fridays so I look forward to Fridays. She worked with Christian today and she hadn't seen him since last Friday. She said he did so well!!! They got his knees completely folded up against his chest. She was so proud of him and said he looks so much better since last Friday. It was so nice to here! And then at the end of her session she said, "Christian...all you have to do is ask Jesus to make you better!." And she told me she believes that when children ask God always delivers. It was so comforting to here a medical professional refer to faith and God. She is so my favorite.

We finished out our week of HBOT and we finally got the hang of the new schedule. We'll be going Monday-Thursday and all of Christian's chamber mates love him already. It's a multi chamber so 6-8 people are doing a session with him. There is a man who had a stroke and his wife, a boy with cerebral palsy, everyone has a different reason.

We are willing to do whatever it takes to help Christian's recovery. That's why we aren't letting expense stand in the way of our mission - get Christian well! But you really don't realize how expensive treatments are until you actually start spending the money. But luckily, we were able to take care of his HBOT sessions in Phoenix until right around when we leave. SO THANK YOU TO THOSE WHO HAVE DONATED. This is why we were able to do this so soon after his accident and I'm forever grateful to you. As for his HBOT treatments in Tucson...we'll cross that bridge when we get there but I don't care what we have to do, we're doing it.

It's a funny thing about Christian. His cough is becoming stronger and more frequent. It just makes me think about all those doctors saying he may never get a cough and that's why he needed the trach. I heard about a cap you can put on the trach which allows less air past the trach so that more is forced through the nose and mouth. It also will help him vocalize if he chooses. And then if he does well on that, we can cap the trach. I want to start as soon as possible so he doesn't get used to breathing with the trach but I have to wait until we get to Tucson because I'm not intending to commit to any doctors here unless I fall in love with them.

It also looks like we are getting qualified for therapy home visits, but I told the early intervention program representative that I didn't care if I had to drive him somewhere, as long as he gets what he needs. But the fact that they're coming to our house is so much more convenient.

Daddy's coming tonight!!!! I can't wait. He's bringing lots of toys and goodies on his sleigh! I don't know why that song popped in my head. But apparently Christian has received quite a few packages that wonderful people have sent to him. And, I think Daddy might also have some Mexican candy for me. Yay! It's an Arizona thing.

And to all those individuals who have made it possible for us to do HBOT, continue HBOT, pay for additional medical expenses, and additional medical treatments, there are just no words to describe how I feel about you guys. God has brought you into our lives and we hope we are able to pass on the grace and generosity you have given to us.


colekd said...

That picture is so cute!!! Your PT IS an awesome woman! Love hearing the great Christian updates!

Karen (from cs board)

Shirley said...

Wow, I am so glad that Christian is responding so well to his HBOT and PT! And HOORAY for his strong coughs! It seems as though Christian is trying to hint to his doctors that he will be trach-less soon. He is soooo adorable!

Oh, and YAY for Mexican candy! It's one of the things I really, really miss from Cali. I always request it from my family, too. Hope you get your fill!!! XOXOXO

Jendioguardi said...

What a sweet boy! He's doing so well!! Yay for a positive and faithful medical professional! I'm sure that made you feel so good. We're continuing to pray everyday. Hang in there mama! You're doing fantastic!!

Eliisa said...

Yay for continued improvement! Definitely talk to the SLP about a Passy-Muir Speaking Valve (rhymes with Gassy-Fear) whenever she thinks he might be ready for it! Passy-Muir isn't the only kind out there but it's a popular might get some brownie points and/or street cred if you mention it by name! ;)

Tracy said...

That is wonderful news!! So happy to hear that the couph is getting stronger. Hugs, mama.

maz said...

Yea for the great therapist. And soooo happy to hear Christian's cough is getting stronger...just such a little star! I love how contrary he is about Dr's diagnosis....its like he hears it and raises one little baby eyebrow and says to himself 'uh huh?! just you watch me!'.

Love to you both....

gavman306 said...


BunBun said...

I'm SO happy to hear the good news. GO CHRISTIAN GO!!! Lots of hugs!

Colton's Journey said...

Have you tried a passy-meiur valve(PMV) is a speaking value but also helps them control saliva, encourages coughing... my little trach man tolerated it until they put the longer trach in.

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