Friday, December 12, 2008

Good and Bad News

IgA 12
IgG 319 (Normal 345-1213)
IgM 56

Dani's number were not the best. She will get a transfusion on Thursday. We went into her IEP meeting today. She is going to get 4 days (3 hours each day) of developmental help. I am sooo excited about it. They also will provide transportation from daycare to the school. Betsy (her main teacher) seems really nice and good with kids. The whole staff (Linda, Nancy, Joanne, and Roxanne) was wonderful and seems really interested in keeping Missy Miss up to par. I am VERY excited to get everything started although I will really miss Stacy, Kathy, and Stephanie at First Steps. I fully expect us to keep in touch.

Just to note for those Mom's that are reading this with MPS kids or for future references. If you saw Dani you would not know she has anything at all wrong with her. She definitely has some issues but for a person to look at her you would not know it. We want to stay on top of everything to make sure she is the best she can be. Our goal is to make her life as normal as possible (as is many parents goal) and we will stop at nothing to get there.

For those non MPS families her diagnosis says she will slow down in all regards after the age of three. We are going to fight this as much as we can and hope that she is the best person she can be. And hope that the medical advances that have occurred the last ten to twenty years will help with that.

I just want to say to Erica who is a WONDERFUL role model and an adult Hurler's friend that does so much for everyone and such an inspiration. You ARE wonderful and I can not thank you enough for your support and help with research, support, and leadership.

I broke down briefly (no need for a tissue :) ) today talking about the future and where/what we are aiming for. Jason and I don't know and don't talk about it, although ironically today he mentioned something about that very subject in a conversation (first time ever). It is just always there in the back of your mind. We are very positive with her and generally it is one day at a time but there are certain instances that you have to think about the future and this was one of them.

Tuesday, December 09, 2008

Happy 3rd Birthday Missy Miss!!!

9.9 WBC
13.8 HG
240 Platelets
4158 ANC

I thought for old times sake I would put her counts up. We are still waiting to here back on her IGG results so we still do not know if she will need another IVIG infusion or not.

We all survived Chuck E Cheese on Sunday. Dani was not sure whether she liked Chuck E or not. She gave him a high five and followed him during the Birthday parade but that was about it. Otherwise she had a blast as did everyone I believe. She loves the slide they have there and of course the rides. She received quite a few Barbies and princesses.
We did do Dani's assessment through the school district for services and she qualified. She is going to be receiving Speech, Physical, and Developmental Therapy. We are going to set up her IEP on Friday.
We hope you all have a very wonderful holiday season!!!