Alex and Maddy

Alex and Maddy

Monday, September 21, 2009

I have to start by saying how very proud I am of Buggy! Today was needle change day. He let the little two year old in the room next door (who just got a port) and her Mom watch us deaccess and reaccess so "she wouldn't be scared" when ity was her turn. He even gave them a play by play of everything I did. He also did great with his shot. BUT I was most excited about a test we had to have done. Since Liz (our occupationa​l therapist) started working with us again, they have worked very hard on Alex's fear of putting anything in his mouth. It has been a weekly focus and we were thrilled to accomplish oral temperature​s last week which he has been showing off. Well, GI ordered a repeat of a test we did last year where Alex has to put a plastic piece in his mouth and blow and fill up a bag with air. Last year it took hours to complete the test. WE finally held Alex on the bed screaming andshoved it in his mouth and "caught his screams". I was dreading the test today. i hadn't even told Alex we were doing it. When the lady walked in she actually remembered Alex from last year. Well Alex put the apparatus in his mouth and proceeded to complete the entire test in less then 10 minutes. Talk about accomplishm​ents!

Okay let's see what else...

Alex got his Vitamin k infusion today and did great. We are still discussing whether he needs another one before heading home.

We are slowly increasing feeds after being off for anesthesia and the GI test.

The team and GI have decided to hold off on the urologist for now. Because Alex does not seem symptomatic of any bladder issues we are going to wait and see if anything arises or we notice a problem on any further tests.

I got a chance to speak to Dr. Koenig in depth about the syrinx (fluid in Alex's spinal cord). The good news is that they did not see a tethered cord or Chiari Malformatio​n that is causing he syrinx. The bad news is that it is definitely still there. Right now there is fluid in the spinal cord, but the spinal cord is still the correct shape, size, etc. The fear is that the syrinx could expand at any time causing the spinal cord to push out towards the vetebrea an cause damage. The plan is to run some more tests on our next trip and then repeat MRI's of the spine every 6 months. At the first sign of change we will act before damage occurs.

So we are finishing up everything here. We need to get feeds up and consult GI and then we should be heading home.

Thank you for checking in.
Ali

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