Chicago appt & Update

Zackary woke up sick on Monday morning. He's got a really bad cough, runny nose & a low grade fever. Now if you have been keeping up with Zack's story, then you know he doesn't sweat so it makes it really hard for him to fight off any type of fever or hottness. So if he isn't any better by in the morning then it looks like we will be making a trip 35 minutes to the Dr. There is an ER here but they have no clue what is going on with his health, so I feel more comfy taking him to the Dr or the ER there then here.

Chicago update: Everyone gets genes from both their parents, Well one of the genes of Zacks is almost completely deleted and the other one is partially working. So they are testing them to see what is actually going on with them. I will know the results in 2 weeks. Plus she's (Neurologist) trying to schedule 3 or 4 different appts or test in one or two days so that we don't have to make 3 or 4 trips during the month because we don't have that kind of money.

I will keep everyone updated as I know what is going on.

Call from Children's Memorial

Over this last year and a half, I've had a lot of emotional breakdowns. Today is no better. We have been to 2 different children's hospital and now we are currently at our third one in hopes that we will finally get the answers that we have been looking for all this time. Our first visit with Children's Memorial in Chicago was almost 2 Fridays ago. I just got a call from them stating that they want us to come up there for an overnight visit in July to see an Autonomic Dysfunction specialist. now comes the fun part of finding a way there and money to get there bc we only have disability from my husband to live on. I can't find a job because no one will hire me because of all the time that I have to take off for all the out off town appointments.

Children's Memorial - Chicago

We had our first appointment at Children's Memorial in Chicago on June 3, 2011.

His weight (by their scale) was 23lbs.

I'm not too sure about his height or length.

The genetic counselor (Emily) came into just to get a history on what is going on with Zackary before the Dr (Angler) came in.

He said that he got everything that Riley's & STLCH had sent Dr. H.

He stated that there are a few things that were in the report that he wanted to look further into.

STLCH & Riley's both did several attempts at a CF test & because he is unable to sweat they couldn't do the sweat test. When the blood test was done for CF, it came back slightly abnormal so Dr. Angler redone the blood test for a more in depth look.

He done a bunch of other blood work but I'm not sure what all test he did

(8 tubes of blood was taken)

It will be another 3 to 5 weeks before we get all the test results back.

Emily said that she would call me as soon as they come in.

And also send a letter with everything that we discussed & recommendations.