Wednesday, July 25, 2007

+346

WBC 9.1
Platelets 352k
Hemoglobin 11.4 - is up on its own but I think it's due to steroids...read more...
Weight 12.9 kilo

His steroids were increased to 1.5ml/once/day. The all-over body rash has almost disappeared. There are lingering patches on his legs. The Emu Oil has helped with the dry skin. It's a wonderful oil that soaks in and leaves the skin smooth.

With steroids comes roid rage (Thanks, Amy for that term! I love it! The term, that is, not the rage!). He is bouncing off the walls, throwing things, spitting, screaming, and his tantrums are more intense. Roid rage is one of the most difficult things to deal with. It's hard to find patience and grace. Disciplining him with a pleasant attitude is the most difficult mental and emotional task I have ever had to muster. Many times I just walk away from him because of frustration. His ears and heart are closed off to my instruction. I tell the girls to just stay away from him. That lasts for 30 seconds then they are back playing again. I guess they like torture. Just kidding. Looking at the bright side, we are blessed he is walking, talking, running, and enjoying life.

There is no telling when the steroids will be reduced. I think we agreed that the other immunosuppressants need to be reduced first before steroids.

Life is stressful right now. Our nanny moved on (end of her contract) to better things. The girls are going to miss her A LOT! I'll miss her too, but she doesn't believe me. Ha! She was such a blessing to our family for the past year. David will get his room back and we will have to adjust to "life how it was" before the transplant. I am busy planning our homeschool goals for Fall. Michael and I are working hard to accomplish some personal and family goals before the winter. There is a lot of transition going on which makes life stressful at times.

Would you do something for me today? Today, would you please enjoy your children and tell them how special they are to you. Would you please point out their good character traits and tell them how happy you are with their progress. Praise them! Praise them! Then, would you teach them how to thank God, for it is He who has blessed them with those special abilities and character traits.

4 comments:

Anonymous said...

Aimee,

I do not envy you right now. High steroids are really hard. Just think of him as a little bit crazy right now and know that it is temporary. You are in my thoughts.

Amy

Anonymous said...

Thinking of you, we go in this week for testing - meanwhile we are so busy with therapists...
he still has his cough which is annoying and we are hoping his rash is just a regular toddler one - is there ever 'regular' with bmt kids.. anyways thinking of you...
Belinda

Anonymous said...

Aimee,

God will see you through this very stressful time. He has opened your eyes to see the good in your precious son. At least you know he has no control over his behavior, caused by the medication. Good advice to praise our children/grandchildren.

Ellie

Anonymous said...

It is August 1st down here so I guess I can be the first to wish you Happy Birthday to David's marrow....
May the coming year be one where can sit back and just enjoy our boys be regular boys....
Thinking of you,
Belinda