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1/25/2010 Monday

Hey everyone! It’s been a while since I have updated. In a way no news is good news. We have been mainly going about our daily lives, and heading to finer sticks 3X a week. I just spent some time charting the info I receive from his test results. It is my job to keep track of it all as a back up in case the faxes don’t go through from clinic to clinic. As of today William has gone through AT LEAST 26 finger sticks to track his blood counts! Wow does that hit home. He is a pretty amazing kid. We had a new lab tech today who asked me how he would handle the poke… before I could answer, another tech came in and said “Oh that sweet little boy handles everything very well!” Last Friday the tech said, “Oh I finally get the famous little guy who everyone talks about.” Is it good to be famous for being such a sweetie, even though you’re famous because you are a medical lab frequent flyer?

After stopping the GCSF drug on the 11th of January William’s ANC has dropped pretty significantly. With someone who has neutropenia like he does this is not a surprising result. His average ANC (Absolute Neutrophil Count) for the past week or so has been around 400. (1500 is the bottom of the normal range).

Will has been seemingly healthy and happy as always. He is STILL not crawling, but has learned to move a little by kicking his feet on the floor as he sits up. He spins in all directions this way and for the most part seems happy with his new “mobility.” He is starting to pull up on everything and I think that in his mind he can just lurch forward and magically get anywhere he wants. We have to watch as he pulls up so he won’t smack his head on things, or get stuck in his new favorite cart that my parents got him!
Last night and today he felt a little bit warm which send off all alarms in my head. My paranoia sets in at any trace of a fever. (Remember any fever of 101 degrees, we have to take him to the Hematology/Oncology clinic or the ER if the clinic is closed). They want us to be extremely vigilant about signs of infection. We’re hoping he’s teething but you never can tell. So far he has only made it to 99.7, which is good, but I’m keeping a close eye on him.

Today there was no school in my district so William and I had a play date with some teacher friends and their sweet baby boys! We got together every other week this past summer and we had a great time today as well. One of the boys was born the day after Will and the other is about 4 months older. I think they will continue to be good friends.

I called to check in with the Hematology clinic on Friday and talked with our Hematologist. She is hoping that the results of our genetic testing will be in sometime the first week of February. We are going to make an appointment to go in and have William checked and to talk about anything they have found out. She said that it will be great to have those results, but our biggest hope is that the tests don’t find anything. (That would mean that he would not have a genetic disorder that is causing the Neutropenia, or low neutrophils). That COULD mean that his condition is not permanent, but we won’t think about all that till it comes. Whatever we find out, we will decide our course of action from there.

The bummer thing is that I asked how many more weeks we need to take him to get his finger poked. Dr. Schultz was sad to say that we really need to see William’s norms without any GCSF in the mix. That could mean that we may have to continue pokes 3X a week until the end of February. She said that if the genetic testing shows something though, we could/would stop the pokes then. So it’s a one or the other sort of situation: 1. If he has a genetic disorder, we’ll stop poking (BOO genetic disorder, YAY no more finger sticks) 2. If there is no found genetic disorder we’ll have to continue pokes to watch for any cycling with his levels (YAY no genetic disorder, BOO more poking!)

In the mean time we are preparing ourselves for reality…our baby will be turning 1 on the 13th! Ahhhhhhhhhhhhh!

Hope you had a good start to your week.

Love,
The Moeller’s