Summer 2014...

We've had an interesting Spring to say the least. In mid April Bodie got sick. It progressed over the weekend & on Monday we went to see Dr. Harper. We ended up in Ochsner's ER and Bodie was admitted. Turns out he had early pneumonia & we had caught it just in time. After an agonizing three weeks in the hospital, my precious baby boy got a clean bill of health to come home... . . .

December 2013.

Wow. I have been seriously slacking on my blogging duties. A whole YEAR has passed without a single entry. I am so sorry! A LOT has happened since December of last year. We had a good Spring & no major issues. Early in the summer of 2013 we moved. Thanks to D&P we moved into a new home in Biloxi. Thank You! The house is plenty big, with a garage on 2 acres in the country. I love that Bodie & Wade can play in the yard with minimal supervision as we have only five houses on our dead end street & practically zero traffic. So I've been busy moving, unpacking (still), fixing & planting. We even have a chicken coop with two chickens! The School District is very good & Bodie has been making good progress. Medically, He's 20lbs now and growing very, very slowly. He's vocalizing more though. I hope to attach a few of my youtube videos. The trach & feeding tube are still in (fingers crossed that THIS will be his year to finally be free!) He's really been able to play & get out more this year. Wade really enjoys having a play buddy, and is a good big brother to Bodie. Mom visited last Christmas & is scheduled to visit again this year with Tyler next week. Will try to update more & post more pics! RH .

. . . . . . 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!!!!!!