Let the testing begin

I am still waiting on the CT scan results from the neurosurgeon's office. It's been a week and I think I can call them next week to see if they heard anything. I know no news is good news but I hate the waiting. Mind you, this test is not related to NS, as far as I know. It is simply for his soft spot still being open.

We go on Tuesday (1/20) for his gene test. I could list what gene is being tests but um why add any more confusion to this situation. I think that this gene is also related to JMML and that is why the 2 in some cases, are linked. This test is sent off to Baylor and will take 4 weeks to get the results. Apparently only 50% of people with NS have this gene or gene mutation. Sorry but I read so much information that I can't recall what end is up anymore.

Still waiting for Early Intervention to call, the Audiology department to call and then the nurse to call with the dates of the echo, ekg and abdominal/kidney ultrasounds. We did get an eye appointment scheduled for March.

I found a blog about a little girl with NS and just read her Mom's post about her eye appointment and I could relate on SO many levels. You wait 2 hours and are even asked to arrive 10-15 min early so you can register, yet the doc sees you for all of 10 seconds! And that costs you how much? Don't get me started on that!

I have found on several reliable sites that when an infant is facing a diagnosis of JMML they should rule out NS because in that first year, NS can cause JMML-like symptoms and as I said before, it doesn't require aggressive treatment and tends to go away by one year of age. I suppose that the chemo Z got was just enough treatment to help put his little body back on track. I am so thankful his doctors went that route and were not over eager to do a BMT. This information helps me to relax about my fears of JMML "returning".

Jonathan and I watched Z pull up on lots of toys and kneel for a while at some of his toys. He also said "nana" and pointed at the bananas. He is a pointer so I now try to make him say the name of what he wants. He will tell me no if I'm wrong so I need to teach him his words so he can use them.