12-11-10

Look at me, I'm so cute when I sleep

I like to sleep like this in my swing

Yesterday Shawn, Oliver and I went down to Iowa City to see the hematologist. Dr. El-Sheikh came up with the funding to send not only Oliver's blood but also Shawn and mine for genetic testing in Israel. They are sending it there because they are the only people testing for the CDAN1 gene that is found in all CDA type 1 cases. We should get the results of that in 3-4 weeks. Shawn and I also had blood drawn for another research study going on at the U of I to study diseases of the premature infant to see if there is a genetic link. This study though is not for the CDA but for the PPHN - persistant pulmonary hypertension of the newborn. Oliver had given enough blood for the day though so they just did a cheek swab for DNA for him. Oliver's 1st sample of blood clotted so they had to stick him again this time the only place they found a vein was in his head and they they didn't get enough blood that way either so they had to do a heel stick after that for his normal CBC tests. By the time they did the heel stick he was down about 18ml of blood so his hemaglobin was only 7.3. Last time it was checked it was 8.3. Dr. El-Sheikh thinks that Oliver's hemaglobin is going up because of spontaneous generation. He explained that this is what they were hoping for. See there are 3 ways to treat the CDA - with interferon (the medication), a bone marrow transplant, or spontaneous generation (his bone marrow kicks in and produces enough to sustain the body.) So, we're hoping that he won't need too many blood transfusions anymore. We will still have to deal with the iron overloading but we'll cross that bridge when we get there. His ferritin (iron level) also decreased from the last time and it is less than 1000 now! Probably due again to the amount of blood that was taken out of him but none-the-less as long as he can produce his own RBC that is a way they could get the iron out of him. There is also the chelation therapy (a medication he would get to rid him of some of the iron.)

We also met with a developmental nurse practitioner who follows-up with babies after being in the NICU. She says that at his adjusted age of 2.5 months (they go by when my due date was not when he was born) he is doing well. She did give us some things to work on. We've been noticing lately that he always looks either mid line or to the right and rarely to the left. She said that they see this in a lot of the kids in the NICU because most nurses are right handed and do everything with the babies from the right side and his crib in bay 4 when he was most alert was facing the doorway to the right. So, we now have to hold his head to the left to stretch out the muscles. We also have to do more tummy time because he will hold his head up but not for long periods of time as she would like while on his tummy. She said to try and work on these 2 things and when we see his pediatrician in a little over a week and he can determine if Oliver will need physical therapy.

I'm working on my tummy time. See mom, I can hold my head up

I can also hold my own bottle (well for a short time)

I don't like to suck my thumb or fingers but I like to lick everything including my hands.