Tuesday, June 13, 2006

CBC Done and Numbers Are Up

Parker had his regular visit to the Hospital For Sick Children today. He received his PEG-ADA injection (210U) and then had a Complete Blood Count (CBC) done to check if his numbers were higher than last week. The result, they were. We have been tracking several of the numbers that we feel are quite important, like his total white blood count (WBC), lymphocytes, neutrophils (polys), platelets, as well as his hemoglobin (Hb). All of these numbers were up from the previous week. The one we were the most worried about was his neutrophils because the Septra had caused them to decrease dramatically. Parker came off of Septra while we waited for them to come back up. Now that he is receiving enzyme replacement therapy (PEG-ADA), he restarted the Septra. His neutrophils are monitored quite closely to make sure Parker does not become neutropenic.

Parker took his PEG-ADA injection very well. His mommy held him while they gave him the 210U injection of the PEG-ADA. The little monkey did not cry at all when they inserted the needle into his right thigh. That was definately not the case when the actual PEG-ADA went into his leg. But once he got a few snuggles, he was smiling again.

We are trying to get Parker to bed a little earlier tonight. If we can have him asleep by 7:30 pm I think we would be very happy. He better get some rest now, because this weekend I am going to make him work pretty hard on his exercises.

People ask me alot about Parker's exercises. How often does he do them? Does he like tummy time, does he cry when he is doing it? See, when we went into isolation we heard two different stories. One was that he would likely be delayed developmentally because he was a SCID and confined to a room. And the other was that he should be fine because he will get so much attention in his room. Lastly, we were told that many children display some neurological problems when they have an adenosine deaminase deficiency. We were determined that Parker would be a normal baby when he got out of isolation so we did everything we could to ensure that. We took all precautions to keep him healthy, and we worked with him each day to make sure his muscles were developing. The occupational therapist taught us exercises that were relevent to the things a baby needs to do and by doing that, he picked up on how to do them. When we finally did take him home, he was exactly where he was supposed to be for an infant his age. We continue working with him to ensure that he is always at least at the level he should be.

Lastly, we think we can see a couple teeth about to come in on the top of his mouth. I don't think it will be long before the break through. I also think it will be less than a week before we start him on some solid food. Mmmmm.... Rice Cereal.

3 comments:

Stacy and Brad said...

Hiya Parker!!!
Again - what a little champ you are!! I'm glad things are going well and you are staying 'healthy'... You and mommy and daddy must be so thrilled that you don't have to be at the hospital ALL the time while you await your adventure to Italy!!! KEEP UP THE GOOD WORK. We will continue to check in daily, OK

GREAT BIG HUGS,
Stacy $ Brad

Elizabeth said...

Hey darling Parker!

I haven't been able to visit your site in a while - but boy am I glad I was able to today and see that you are still a true fighter and am so happy to hear you took your PEG-ADA like the strong boy that you are. Can't wait to see you again and keep the pictures coming! :)

Love,
Elizabeth

Unkie Michael said...

Good work wee man! You're looking great! I understand your work out regime with Dad is a bit intense, you know, high reps, low weight, going to "failure" on the last set of repetitions. You just gotta push it! I'd start with a high energy pabulum shake in the morning, a light leg wiggle in the "spacerciser" and then move on to working separate muscle groups. I'd break them down as follows: Back/Biceps-10 reps of the rattle followed by throwing your Monkey friend on the floor. Shoulders/Triceps-10 reps of grabbing for the funny shapes in your "Gymboree" then tugging at your
own shirt while smiling.
And lastly, Chest(Tummy)-10 rollovers from tummy to back followed by another high energy pabulum drink.
Follow this routine and it won't be long before you are bench pressing the occupational therapist herself!
Lots of love
Uncle Michael