RH
Monday, April 23, 2012
Sunday, April 1, 2012
Update: April 2012
A lot has happened since our last entry. As a family, we have been extremely busy with Bodie, Wade & the daily stuff that life throws at us.
We ARE making progress though.
In December, the jaw distractors came off, cleft repair was complete and there was marginal improvement to the jaw. One side effect was devastating though... Bodie would no longer put anything in his mouth. No more thumb sucking or his pacifier. This continues to present day.
After the jaw distractors came off we were ready to try & decanulate (remove the trach). We were at Ochsners and even Corinne made it for the big day...
It all started well & Bodie was breathing without the trach fine while he was upright. When he laid down his respiration & oxygen sats dropped too low to be acceptable & after a day trach free we had to make the heart wrenching decision to re-trach.
This is why I mostly stopped writing the blog for a few months.
The trach was downsized to a 2.5 and we came home.
The past three months his progress has slowed to a crawl.
An appointment with the geneticist, Dr Niazov showed his growth slowing & we have an appointment with an Endocrinologist to start hormone therapy this month...
Most recently, a visit with ENT Dr Rodriguez confirmed our fears that his breathing was getting worse & not better. Some scar tissue has formed a partial blockage in his airway & we are currently treating it with antibiotics and will have a follow up this week for an in-patient procedure if that doesn't work.
We also plan to upsize the trach back to a 3.0 for more positive air movement.
Otherwise Bodie has been improving & has begun to pull himself up on objects and can cruise with support. I really hope he will be walking this month.
Again, sorry for the long break in blog entries. I just felt overwhelmed for a bit.
Oh, and lastly- SSI/Disability and Medicaid have decided to boot Bodie off coverage as well. Unsure the reason(s) at this point but I am going to the Social Security office in the morning. Insanity, I know.
I love my son too much to let these bastards win & will fight for him until I draw my dying breath.
Ryker
We ARE making progress though.
In December, the jaw distractors came off, cleft repair was complete and there was marginal improvement to the jaw. One side effect was devastating though... Bodie would no longer put anything in his mouth. No more thumb sucking or his pacifier. This continues to present day.
After the jaw distractors came off we were ready to try & decanulate (remove the trach). We were at Ochsners and even Corinne made it for the big day...
It all started well & Bodie was breathing without the trach fine while he was upright. When he laid down his respiration & oxygen sats dropped too low to be acceptable & after a day trach free we had to make the heart wrenching decision to re-trach.
This is why I mostly stopped writing the blog for a few months.
The trach was downsized to a 2.5 and we came home.
The past three months his progress has slowed to a crawl.
An appointment with the geneticist, Dr Niazov showed his growth slowing & we have an appointment with an Endocrinologist to start hormone therapy this month...
Most recently, a visit with ENT Dr Rodriguez confirmed our fears that his breathing was getting worse & not better. Some scar tissue has formed a partial blockage in his airway & we are currently treating it with antibiotics and will have a follow up this week for an in-patient procedure if that doesn't work.
We also plan to upsize the trach back to a 3.0 for more positive air movement.
Otherwise Bodie has been improving & has begun to pull himself up on objects and can cruise with support. I really hope he will be walking this month.
Again, sorry for the long break in blog entries. I just felt overwhelmed for a bit.
Oh, and lastly- SSI/Disability and Medicaid have decided to boot Bodie off coverage as well. Unsure the reason(s) at this point but I am going to the Social Security office in the morning. Insanity, I know.
I love my son too much to let these bastards win & will fight for him until I draw my dying breath.
Ryker
Monday, December 19, 2011
Bodie meets Santa!
Everything has been going pretty smooth since the cleft repair & jaw distraction. We took Wade & Bodie to see Santa last week & they did very well!
Bodie was pulling at Santa's beard & Wade was well behaved as opposed to the screaming fit that he threw last year...
Bodie was pulling at Santa's beard & Wade was well behaved as opposed to the screaming fit that he threw last year...
We even got to take our first Outdoor Family Christmas Card pic!
Scheduled for Dec 28th is the removal of the distractor hardware & .........
Possible Trach removal!!!!!!
Thursday, November 24, 2011
Surgery update
Well the surgery went as planned. Bodie did well and we went to see him after the surgery in the PICU.
He was swollen and unhappy. It was a long 48 hours and then the Doctors noticed a problem. The right side was not adjusting correctly. They had to go back in under anethesia and fix the problem. His skin was stretched so tight that it was holding the adjusters from moving. So they cut the skin/flesh so it could move where they needed it.
After a looooooooong eight days we were able to come home. Wade stayed with Paula because he had picked up a cold, (more on that later).
And now the pics...
Before: (He was as happy as can be)
After:
Finally starting to feel a little better:
Corinne even stopped by for a visit to cheer him up:
He was swollen and unhappy. It was a long 48 hours and then the Doctors noticed a problem. The right side was not adjusting correctly. They had to go back in under anethesia and fix the problem. His skin was stretched so tight that it was holding the adjusters from moving. So they cut the skin/flesh so it could move where they needed it.
After a looooooooong eight days we were able to come home. Wade stayed with Paula because he had picked up a cold, (more on that later).
And now the pics...
Before: (He was as happy as can be)
After:
Finally starting to feel a little better:
Corinne even stopped by for a visit to cheer him up:
The jaw distractors will come of just before Christmas hopefully.
Wade came home sick from Paula's & despite our best efforts to keep him quarantined, Bodie got sick.
After a trip to the ER he's back home on antibiotics & improving slightly.
This has been a hard month on all of us so far.
RH
Tuesday, November 8, 2011
Big Surgery tomorrow
Tomorrow is the big day. Jaw distraction surgery (again) and closing the cleft palate.
I'm nervous mostly due to anestesia fears more than anything.
I hate that Bodie has to endue yet another surgery that will leave him immobile, sore, hurt, scarred and helpless but I know the results will be worth the suffering in the end.
Oh to be rid of that damn trach!
Praying everything goes smooth for the Surgical team & for my beautiful son.
RH
I'm nervous mostly due to anestesia fears more than anything.
I hate that Bodie has to endue yet another surgery that will leave him immobile, sore, hurt, scarred and helpless but I know the results will be worth the suffering in the end.
Oh to be rid of that damn trach!
Praying everything goes smooth for the Surgical team & for my beautiful son.
RH
Monday, October 31, 2011
Bodie Crawls!
Bodie Crawls! Hooray!
As of last night, he is now pulling himself UP on stationary objects too!
I am so happy that my little boy is making such great progress!
Thursday, September 29, 2011
Surgery update...
We went to see Dr St Hilaire in New Orleans today. He's the doctor that performed Bodie's jaw distraction. Well, he's going to do another one & close the cleft palate at the same time. Looking like this will all happen around the first week of November.
RH
RH
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