Monday, December 5, 2011

Internet, wahoo!!

Today we finally got our internet hooked up. So happy, I can't believe how much I depend on the computer for even everyday things!
One thing we missed while not having the computer was the birthday of a certain warrior boy!

November 20th Jaxson turned 6 years old! No party, we were on the road coming back to California from Utah with all of our stuff. Next year we hope to have a big birthday bash. Lord knows he deserves to celebrate a life we never thought would last this long.

Some current stats on our warrior.

Weight is 25lb 4oz.
Height is 36 inches.
His pant size is a 2t, and 3t for shirts. His tiny footsies are only a size 3! The same as his two year old sister.
He is absolutely tiny! Even for a Down syndrome child. We think his pituitary gland is not working, and are trying to get into a new doc to recheck his growth hormone and other levels. Another med will probably have to be added for this new find.

Jax can roll over, although its still hard for him, and it takes a lot of his energy to do it. He is grabbing things, mostly his tubes, with both hands. He smiles, and has even laughed, although you can't hear it because of the dang trach.
Even though he is still considered cortically blind, his vision seems to be much better. He now will look at people, and track certain things with his eyes. He needs another hearing test, but his hearing also seems better. He startles super easy with loud noises.
We don't really know the status of his pulmonary hypertension and his heart, as we are still trying to get into our new cardiologist. His sats are much better here in Cali. Although doctors haven't ordered it, I've been able to turn his oxygen down from .50 to .25, and at night from 2 down to 1 liter. I can even take his oxygen off for short periods and he maintains good sats. He does sometimes seem to still breathe hard, and his heartrate goes up when off for too long. Hopefully his pressures are not going up.
His seizures don't seem any different after getting the VNS. I can't wait to get to our new neuro, as they are the top in the country. I'm wondering if we need to restart the keto diet. Not my favorite thing, but whatever helps!
He is still on continuous J feeds. We will not put anything into his tummy until we see GI and see about fixing his nissen.
A few more specialists are on the list of docs to see. We will be having a whirlwind of doctors appointments in the next couple months as we get new docs and get new problems taken care of. If we can keep him from getting sick, I think we'll have a pretty good winter!

16 comments:

Nikki said...

Happy birthday Jaxon!

Nikki
www.onetinystarfish.blogspot.com

Junior said...

Happy Belated Birthday Jax!!!
Congrats on rolling over that is a huge accomplishment. big hugs.

Amy said...

YEAHHH -missed my Jax fix.
Love how he is thriving on your LOVE and against all the odds!!!

I sooooooo want to snuggle up with him on that last picture!!!!!!

Alison said...

Happy birthday gorgeous boy!!!

Team Carter Jay said...

Welcome back! We need to chat soon about your blankies blog now that you are reconnected

Anonymous said...

Happy Happy birthday beautiful boy!!

Michelle said...

Happy Birthday!! Glad you are back!

The VW's said...

Gorgeous pics of Jax! Happy 6th Birthday Jax! Glad you are doing well! Big Hugs!

Rochelle said...

Happy birthday big stuff! Glad he is doing so well and you guys are back up and running.

Kristin said...

Happy little bit late birthday Jax!

suelmayer said...

Love all the pictures of a very handsome boy! Happy Birthday Jax!!!

Becca said...

Oh, happy belated birthday to your gorgeous little boy!! Wish I could be there to give him a big (but very gentle!) birthday squeeze!!

Good luck with all of the new doctors! I hope you get a fantastic team working with you!

Chromosomally Enhanced said...

Happy Birthday sweet Jax! but you are so right he deserves the biggest birthday bash and celebrate everything he doing! Jax is a true ROCKSTAR!! hope you are settling in! Happy Holidays! smiles

Shelly Turpin said...

Happy birthday my Jaxson!!

Melissa said...

Happy Birthday Jax!!

Mommy to those Special Ks said...

Happy Birthday, Jax!!! I know it was a great one!!