. . . . . . Bodie has graciously been chosen as the benefeciary of an annual charity event hosted by Dragon's Den Tattoo in Ocean Springs & Big Hoss BBQ to be held Saturday, December 22nd at 11:00AM at the tatto shop. Address is 1408 Bienville Blvd, Ocean Springs, MS (228) 818-2755 . . . . .. . A Paypal Account has been set up to accept donations, just click the donate button below & follow the instructions.

We are very thankful that Bodie has been chosen & we are very grateful for all the help he is receiving. -Ryker

Bodie turns two & more great news!

It's been a long, hot sick summer.

Bodie & Wade both got sick this summer & the colds held on & made life miserable at times. In between colds, Bodie has been doing better. His walking has improved greatly and he now runs up & down the hall and around the house! Just today he climbed on a box of supplies that was almost a foot tall all by himself. He even figured out how to get back down without falling.

 

 

 

 

 

Mom (Mimi) came to visit in August for Bodie's second birthday & had a really great but short visit.

Debra, (Gaga) and Paul came too & he got lots of presents. We had a Luau at Debra & Pauls house and I cooked a whole pig for the occasion. The weather didn't cooperate but we made the best of it.

Bodie is progressing well & we get to go out more that before & he really enjoys getting out of the house.

 

We are hopeful that he is growing & will be able to get rid of the trach this fall. A HUGE step in the right direction is he has begun to taste foods! He actually swallows small amounts toothpaste, ice cream, baby food & is all over us when we try to eat.

 

Bodie takes his first steps unassisted! That's me taking the video & screaming like a girl... LOL

RH

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

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...

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!!!!!!

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:

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

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