Wednesday, January 6, 2010

A bit better

Jax did really well yesterday with only 3-4 episodes the entire day. Was it the chiropractor adjustment that he had Monday night? Who knows, but we'll take it. He's doing okay today, but his last episode included him throwing up blood. Not to alarm any of you, but he's done this before, and it's always been a result of blood in his tummy from his tubing rubbing around the stoma site. I'll be watching it and checking the diaper that his stomach vents into. So far it's nothing alarming. I'm going to take a picture of his stoma site and post it to reference back to. You would all know what I'm talking about then when I describe it.

Baby Grant in Texas is still in the hospital. He is having problems with low red and white blood cells among other issues. The only idea the doctors have is that a simple virus is crushing his system, so please keep him in your thoughts. Since being diagnosed with CIPO, this little boy has been on TPN and non-stop hospitalizations...he and his family deserve a break.

New things that the boys can do:
Brady - 
  • He  waves hello and good-bye consistently.
  • He likes to say "YEAH!"
  • He tries to wipe Jaxon's face with rags.
  • He tries to unzip Jaxon's backpack when the pump alarms. Such a helper.
  • He takes his paci out of his own mouth and throws it in the crib when waking up (he's only allowed to have it in his crib).

Jaxon - 
  • Pretends to "chew" when he sees us eat (he looks like a fishy breathing under water).
  • Calls me BABA.
  • LOVES to jump up-and-down in his crib.
  • Has an obsession with Daddy.
  • Loves to read his books upside down.

And they both hate it when I hold the other one. They fight over my lap at least 10 times a day. I'm sure those fights will just get more intense as they get bigger! And they both love to zoom cars or trucks on the floor around the house - too cute.

5 comments:

Heather said...

I hope this improvement continues for Jax. OMG.. how cute is Brady trying to help wipe his brother's face and help with the pump? God love him!

baileyhillmandy said...

Hi, I have been following your blog for some time now. Just wanted to let you know I think of you often and really pray that he grows out of this!! You are a very strong and excellent mother!!!!

I spoke to you briefly on the bump about my daughter who had TEF (trachea esophogeal fistual). I'm sure they have thoroughly checked over Jax's intestines with nemerous tests. BUT, I just wanted to let you know that they missed malrotation on my daughter atleast 6 times. She had that many upper GI's from constant vomitting!! She was throwing up bile and blood on occassion and when she started eating solids , a while later she was vomitting food that she had eaten 12 hours previously. I took her to the children's hospital bawling and in bad shape as I was up with her all night vomitting and I guess I was lucky enough to run into a radiologist that really took me seriously....anyways she noticed that the liquid was getting hung up in the small bowel, did and u/s and boom diagnosed with malrotation in 2 mins after 1 year of pure hell!!!! She had another adhesive bowel obstruction after that and required another surgery which they said they have NEVER seen before!!!! Sorry For the ramble!!!!!

Are they planning on running any more tests in the future? Everyone, including the GI specialist, ped and family doc were all SHOCKED that they missed this for so long!!! AGAIN, you are doing such a great job! My girls are twins as well and It has def been a struggle with one healthy and one special medical needs child!! I wish I did half a good a job as you do!!

Mandy :)

Scullyhoyy said...

Glad to hear things are going well for the boys:)

Laura said...

Such big boys!! My guys fight over my lap all the time. I get some really dirty looks when one comes up for a hug and the other gets there too late to cut his brother off. LOL! And yay for Baba! That is definitely a word, a proper name, and he's asking for YOU!

Jenn said...

It amazes me how you can stay so calm with issues like this and just "wait and see." What strength that must take! I imagine with all you must deal with these are no big deal to you...still I am very impressed....you are amazing.