I really don’t know what to talk about tonight. I can talk about how much we learned during her PT evaluation this morning or how much we enjoyed our developmental therapy or the informative conversation I had with Dr. Greg Grabowski this afternoon or Abigail getting into a fight at school or Scrubs ending its series after 8 years (one of my favorite shows) or still reeling from the disappointment with the failure of a Hannah Mouse or getting some very upsetting news about a partnership that was “in the works.”
I don’t know, just not feeling like elaborating tonight.
The only thing I still have in my mind is Dr. Grabowski’s comments that based on Hannah’s symptoms and presentation, he felt that she was most likely a “type 2” baby, but that I shouldn’t consider it as a “type” but more of Hannah having a “Hannah’s Gaucher’s Disease” and it is what it is.
Yet, all I keep in my mind are his words “type 2.” Life expectancy no more than 2 years… It isn’t anything different than Dr. Schiffmann told us of a “slow type 2 or a severe type 3” but for some reason, I had put that out of my mind. I keep thinking she is doing so well. I still feel she is doing so well.
Reality check, I guess. If there is no treatment found, she will be taken away from us at any time. At any time, she could start the “snowball effect” of symptoms.
Why can’t I find something to help her?!
I don’t know. I wish I did. I wish I could make this easier. I wish I could make this not knowing, this constant worry and fear easier to bear. Today she is with you, today her platelets are up, today is today.
All I’m left with is this:
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has trouble enough of its own. (Matt 6:34)
Sending hugs and prayers and abiding.
Mrs.spit’s last blog post..Renewal
You’re entitled to curl up for a few minutes. I’ve taken more than my fair share recently. It’s in those moments of introspection that you can come of with great avenues to pursue and the strength to keep fighting. We’re not giving up. We’re planning a better attack. 😉
Cristina’s last blog post..Speech Therapy: Session 5/6/09
Sending lots of hugs here too.
That’s a lot of information and things running through your head just give yourself time to process. I know you have a renewed energy. Try to stay focused on the positive and what’s happening in the moment. Don’t try to think too much ahead. I still think she’s a strong baby and with so many unknowns it is possible that some things will not be so cut and dry as they say. Continue to fight. You know if there is anything (and I mean anything!) that you think I can do then please send me an email or call me. My number is at the bottom of the emails.
I am bad at initiating, but I am good at doing what’s needed. I can edit or write letters, mail out something… Um, I don’t know what I can do from here, but just let me know, okay? I’ll post whatever you want me to post and write about. I just want you to know that you have me out here in the wings… wishing you guys well, thinking of Hannah and praying for the best.
Take care, hon… one day at a time.
Petula’s last blog post..Redecorating with rustic
I cannot understand the helplessness you must be feeling, but you should take pride in all that you are doing for Hannah and for the other kids with Gaucher’s who will follow her.
Rae Ann’s last blog post..Why I Need Therapy
My heart goes out to you Carrie. I know exactly how you feel. It’s so easy to get caught up in the everyday things, cleaning house, making meals, taking care of kids, that you almost forget there’s anything wrong with your baby.
But sometimes it just sneaks up on you, and your heart breaks in two because you know that unless a treatment or cure is found you’re going to lose your child.
It’s those days you find yourself holding your baby extra close and inhaling their sweet baby scent like you’ll never smell it again, saying “I love you” a million times, and daring them not to leave you too soon.
You tell yourself that you have to be strong, that you can’t give up, that you have to keep fighting and praying – but sometimes the pain is almost too much to bear. So whenever you’re feeling low, think of me and know that I’m feeling it too…we’re in this together…
Melissa Ingold’s last blog post..Children Fighting For Their Lives & Those We’ve Lost
I know it’s hard but don’t think about what the “text books” say about life expectancy Carrie. Each child is very different in how they will present. When our local neuro broke the news, he flat out told us, “sorry, she will die before her 2nd birthday so go make memories. There’s nothing you can do, you can call me an idiot or yell or cry but there is no treatment and there is no cure”. Are you kidding me? Talk about breaking the most devestating news with THE WORST bedside mannors ever!!!! He literally gave us NO hope whatsoever. What he did give me was determination that I may not have had as much of had he not been so matter of fact. I was determined, like you, to prove to the world Aaliyah was different. She was! In soooo many ways, she continued to wow doctors everywhere including Dr. Grabowski and his group. I remember the April before she passed, she was not on her vent and Laurie and Dr. Grabowski stated they haven’t seen a GDII child that old be off the vent and having such beautiful numbers!! they were floored!! So were we… Hannah and each child is different, don’t look at this as a death sentence but rather a huge mission I guess. Your doing great Carrie, this is a horrible disease…I know. Don’t ever give up……
Liz