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
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