Parker's First Clinic Day

Parker had his clinic today. I had mentioned in yesterday's article what I thought would occur and I was pretty much spot on. Parker gave quite a bit of blood so a CBC could be taken and a T and B marker cell test (using flow cytometry) could be done, he had his vitals taken, they gave him his ADAGEN shot, we got to speak with a doctor from immunology about Parker in general, and the occupational therapist came to track his development.

I guess I should mention his weight and length first as we were very impressed with both. I had been tracking his weight in Excel and his weight for today was spack on the linear regression I had done. Parker broke the seven kilogram barrier weight in at 7.030 kg, which translates to 15 lbs 7.5 ounces. His length also increased from 58.5 cm to 61.5 cm, translating to about 1.2 inches in growth. Parker will have an increased amount of ADAGEN next week as as result of his increased weight.

When the occupational therapist saw Parker she was very impressed. I showed her a few of the things we had been working on like the exercises to strengthen his abdominal muscles, and how his head control had increased even further. She was also pleased with how he makes sure to keep his feet flat on the ground when standing (supported), as well as how he now uses his hands to grab things. Of course, I had to ask if she thought he was advanced for his age. She felt he was advanced for an infant his age who had been in isolation but was exactly where he was supposed to be for an average infant his age. So, I guess Parker will have to work a little bit harder. Tough love never hurt anyone.

When we sat down with the immunologist the discussion of food and using bottled water came about. Currently, we are using bottled water for Parker's formula after boiling it for 10 mimutes. What we found out is that there is no fluoride in bottled water and as a result children who have used bottled water for their formula have problems with their teeth early on in life. This definately makes sense. So, today when I made Parker his formula for the next day and a half I used tap water and boiled it for 15 minutes to kill off anything that was in it.

Parker's CBC came back today, and we were slightly disappointed with the results. Although, his blood counts are in the normal range all of the different cells that make up the CBC were lower than his last CBC. I am definately not going to stress about it today. One test is definately not a trend. That said, if the numbers drop again next clinic I will be a little more curious as to why. Parker's neutrophils have also dropped but are also still in the normal range. I did request that they be retested on Tuesday when he goes back for his next ADAGEN shot. We were told that his neutrophils would be very closely monitored if we went back on Septra. For those of you who are new to this site, Septra is a medication Parker takes to protect him for PCP pneumonia (a very bad form of pneumonia). Parker became neutropenic when he was on Septra a couple of months ago. As a result, the changes his medication and recently hs neutrophil levels returned to normal. We agreed to retry Septra when we came home last week as long as his neutrophils were very closely monitored. Parker cannot take park in the gene therapy trial if he is neutropenic.

Not related to clinic, I would like to point out that I have added a section on the right for all of the press that Parker has gotten in the past two months. As well, I added a couple of links that you may be interested in. The first is a glossary of terms related to blood and the different cells involved with the immune system. Secondly, I added a handy nurses conversion web page. It pretty much has every conversion you could want to do if you are a parent. So take a look and enjoy.