Monday, March 31, 2008

So many changes

We are still looking into all of our treatment options. We have added Hyperbaric Oxygen Treatments (HBOT) to the list -- just looking into it. I know there are lots of folks who have done it with their's still considered controversial as to it's effectiveness among the medical community, but I think if you speak to parents of children with Cerebral Palsy they will give you a give you a big thumbs up from their experiences. So, we spoke to our Neurologist about it and she gave me the name of a Pediatrician in Westchester who got into HBOT because her daughter had CP. I'll let you know how that call goes.

But biggest on our minds is the stem cell clinicals which should be getting done in our own country -- so that desperate, vulnerable parents don't have to schlep their beloved children to questionable places of the world to get a stem cell transfusion done. We are so bothered by this and have begun what we can only call a grass roots effort to try and get the proper information so we can begin the writing of letters and get this going before Amelia is Bat Mitzvah'd. We want the facts on donor cord blood transfusions, what are the ramifications, if any, etc...from there we want to contact our state officials and so on. We have the support of UCP, NYC as Nestor had a meeting with the Head of UCP, Ed Matthews while in LA. Hoorah!

*FYI: We have spoken to the folks at Duke and as of right now -- they will ONLY do donor stem cell transfusions on children with cancer, like Leukemia, because a round of chemotherapy has to be done after the transfusion. And obviously, they won't do chemotherapy on a healthy child. My question was...then why is it that donor stem cell transfusions are supposedly being done in Mexico and China without chemotherapy afterwards? I got a "no comment". I haven't gotten the answers I need to move forward. I asked our Neurologist who could only surmise that perhaps that's just what the FDA protocol is allowing at this point. Arghhh! So frustrating. It's like hitting your head against the wall -- many times! She offered to ask the docs who work in hemoglobin research for us. So now, here we are with our minds swimming and a big task ahead of us. We'll get it all together and I don't think it will be as vast as we are anticipating.

So what's new with our girl? Well, she is sitting like... a..., uh, professional sitter. It's true. She wobbles a little at times, but catches herself 97% of the time. Amelia will lean all the way forward or reach over yonder to get a toy, and then get herself back up. She will even vehemently shake her head NO and not topple over. It's so exciting!!!

Her big thing this moment is wanting to crawl. Amelia has pushed up into quadruped twice on her own without any prompting or help. And yesterday, she pushed back from her belly into sitting while playing with Nestor. She is getting so strong it's unbelievable! We've been putting her into the Creepster everyday for 30 minutes and she loves it -- when I take it out and show it to her she signs "give me". She's really moving nicely in it. Not your classic crawling, but getting herself from point A to point B like a champ.

And lastly, we've been thickening orange juice with "Thick It" (basically cornstarch) and Amelia loves it. We've been making it almost a custard consistency -- think the lemon in a meringue pie. She swallowed down a couple big (bigger than we're supposed to be giving her) spoonfuls today and yesterday. She had a look of shock on her face like she couldn't believe it. There wasn't any coughing or uncomfortable looking faces -- just surprise! It's really encouraging. Amelia's Speech Therapist and I were discussing that we would like to try thickening lots of other foods to that consistency because it seems to be what works for her.


Carrie said...

Wow! She is making such amazing strides. But what else should we expect from Amazing Amelia!!!

Vanessa and John said...

That is so amazing!! Do you realize her chances of walking are like 100%. Anyway, I also am getting beside myself trying to get donor stem cells for Giuli. I tihnk it's crap that you have to ahave cancer to get it. What if the CP is like a cancer? I would 100%like to help you in this endeaver! I think the way to get this going is find a doctor who's willing to do a study on donor stem cells for CP kids. If you get any leads, email me nad I will also help. Also, I can play my doctor works sometimes!! I totally serious!