Thursday, December 27, 2007

Day Hospital, Zenopax, IVIG and Age of Discovery

WBC 13.4 - normal
Hemoglobin 12.4 - normal
Platelets 407 - high! Those with WAS will understand the exclamation mark!
Lymphocytes, Absolute - 3.23 - this is the first time it's been normal!

We were at the Day Hospital today. The IVIG (Gamanex) went much better. No reactions. His skin looks better but still has residual pink splotches to remind us he is not free of skin GVHD. His scalp still gets really dry but the topical steroid is helping his hair grow back. I keep it very short so the creme will go on better. I think the treatments are helping but we really need him off of the steroids. He is feeling great. No more cough.

He is beginning to read. He can read EXIT and is very excited about that. He is learning his letters and Michael taught him how to write an "A" and "D" in one night. The next day he woke up and started writing. Yesterday he was narcissistic about writing a list. He would not let go of his paper list and pen. He even takes it to bed. Today he is peeling all the paper off his crayons and making a humongous mess on the floor. His sister, Ariella, is teaching him how to use tape to connect objects, so we have objects stuck to tape hanging all over the place. She also taught him how to tie things together, so there are a maze of fabric webs all over the house. It's a great age of discovery!

6 comments:

Teresa said...

I have been reading your blog and I just want to say thank you. My son Aaron David Yniguez was just diagnosed with WAS last Wed. He is 5 1/2 months old and has been displaying all the signs of WAS since birth, including bloody stools, eczema, low immunity, petachie, and low platelets. Aaron has been receiving IVIG treatments to keep his platelets from dropping further; and we just received an approval for HLA testing to get the ball rolling for a BMT. My husband and I are overwhelmed right now; this is our first child - we don't know where to begin as far as treatment, and are clueless as to what questions we should be asking. Could you give us some advice? Thank you again; you're love for your son is amazing.

Aimee said...

Hi, Teresa, I'm sorry to hear about Aaron's diagnosis. I wanted to name my son Aaron ;-) I would be happy to chat with you by email or the phone. Can you email me direct: aimeemcnally@gmail.com. I did not see your email address in the posting. Thank you. Aimee

Anonymous said...

Hi Aimee,
We are encouraged to hear that David is slowly beginning to enjoy life again, and he is developing quite well. He certainly has a loving support group and God's help.

Our prayers that this coming year, you will see remarkable improvements, and an end to the medications that have caused you difficulty.

What a blessing to be able to read your blog, and a treasured keepsake for David and your family.

Love, Ellie

Joanne K said...

Hi Aimee,
Amazing platelets! Just wanted to say happy new year and that I hope this will be a great year for David. It is great that he is starting to read and do all those normal things that little boys do. Baden is learning how to write, and I keep finding pieces of paper with 'B' on everywhere. It is so precious. I am such a lucky mama. Baden is down to the hospital 4 times a year and it is great when it slows down a bit. We are off to Sick Kids on Wednesday so hopefully things will be good.
Anyway, best wishes.
Joanne K.
www.caringbridge.org/ca/baden

Ivonne said...

Aimee:
I am peruvian and unfortunately my son was diagnosed with WAS two weeks ago. Sebastian is 5 months old and all signs of this illness since birth. I had two brothers who passed away before the first birthday from the same disease 40 years ago. I am living temporarily in Miami at my sister's home but I am trying to get help of some foundations or media TV to pay the BMT. The prices are very very expensive. For the Shands Hospital in Gainesville we need $200,000 as a deposit and the difference $400,000 can be paid in 20 or 30 years. We do not have international insurance and due to the fact he is not resident or US citizen, we can not receive help from the institutions in USA.
We are on the search for the perfect match (his only sister was tested and she is not) to give Sebastian an opportunity to survive.
I would appreciate if you give us some advice in how to take the decision where to do the transplant and refer names of foundations that I can get in touch with my problem.

I was very surprised reading stories of babies like your son that is still fighting to be healthy.

Thank you for sharing with all the families that are in the same sad story your progress with your beautiful son.

Ivonne

Aimee said...

Dear Ivonne, Thank you for contacting me. Would you please contact me by email: aimeemcnally@gmail.com so I can respond to you personally instead of through the blog comments. I look forward to hearing from you.