Wednesday, May 14, 2008

IVIG Day

WBC - 12.3
Hemoglobin - 14.2
Platelets - 329
Blood Pressure - 122/77

He is getting IVIG today. No problems. His skin looks really good lately. I've been working very hard keeping him covered, using hats, sunscreen, and shade. The temp is supposed to be 100 degrees so it's not easy staying cool. I bought him a mister fan which he thinks is fun to play with and squirt his friends. We are not making any changes to his medications.

Growth - He is growing very slowly. Doctor Argawal said his body's energy is going into fighting the chronic GVHD not growing. She encouraged me to keep feeding him a lot of calories and cater to his requests within reason. August 1st will be his second BMT re-birthday. He will see an endocrinologist to test his growth hormone. Dr. Argawal is not concerned about his growth at this time. She says he has not been on steroids "for that long." I disagree since being on steroids for any period of time...is too long in my opinion. She said at around 8 yrs old, they will seriously consider giving growth hormones if he still has a problem.

Blood Pressure - His blood pressure was better today. It's still on the high end of normal. He has a red face most of the time, but Dr. Argawal said that is due to the blood pressure medication, not the blood pressure.

Socially - We receive so many comments from strangers that I am beginning to get irritated. His growth is slow and the red face makes him stand out wherever we go. He often looks tired. Strangers make innocent comments that make him uncomfortable. On the flip side, many people say he is so cute, which is nice to hear.

Other than that, we are doing fantastic. We had a wonderful Mother's Day camping in Mendocino and meeting Michael's parents for a vegetarian brunch. The girls showered me with many cards and hand-made gifts. I love all of my children so much! Happy Mother's Day to everyone in cyberspace who reads this.

3 comments:

Anonymous said...

Socially -- I can still remember all the stupid comments we would get regarding Jacob's bruises. I used to wonder if the people even realized that he had feelings. Thinking of you.

Amy

Anonymous said...

We get comments about Shimmy still not walking unaided and people want to know if the chemo did this to him... i have really learnt the hard way that we, as parents, have to realise that we have to go beyond other people's often senseless words..
David is a gift. He is alive and here, so just enjoy him..

Belinda

Joanne Klein said...

Hi,
Try not to take those thoughtless comments to heart. I think we all have those. I one time was told by someone to remove Baden's raincover from his stroller because we were in doors, and it was warm. I think the words that are etched on my mind were 'don't do that to him, haven't you heard of the bubble boy.' It upset me so much and it happened more than once. As you know, the cover was to protect him. I remember telling the man that he had no idea and I walked away crying. Anyway, what I have learned is that it is not worth worrying about. I do everything I can to make sure that Baden knows that he is a wonderful brave special human being, and that the world (and my life) is so much better because he is here. When Baden was sick I used to sing Elton John's Your Song to him and the words are true for Baden and all little boys with Wiskott 'How wonderful life is, cause you're in the world.'
Have a good one.
Joanne.