A Moment On Her Own

Today I stood Amelia on the floor next to her crib. Her hands grasped the crib rail and carefully, ever so carefully and with caution, I let go of her. Amelia stood for several moments without anyone holding her up. She held herself up.

From Horizontal to Vertical

Amelia and big brother, Spike 5/08

Yes, we are still doing lots of commando and Creepster crawling...but Amelia's new passion is standing. When we're at the park, sitting on my lap, in a restaurant, etc. she wants to be standing. I place her on the floor between my knees and secure her hips with my knees and she stands! Pretty nice and steady. She'll also turn, so her belly is on my leg and stand that way too. It's very cool. Each milestone feels like it's been forever coming...and now they seem to be happening every other day. So this is what it feels like when your child is making developmental and physical strides forward.

So, on that topic. Nestor, Amelia and I have made new friends. We recently got involved with a not-for-profit organization called Bright Steps Forward (www.brightstepsforward.org) where they have intensive therapy programs for children, mostly kids with neurological challenges. A friend of Nestor's, Joe Gannascoli ("Sopranos") has been working with them for a year or so doing fundraising at celebrity events for them. Joe thought they would be a good resource for us and Nestor is happy to jump on board and help in any way he can in their celebrity events. We spoke with the owner, Eileen, who basically broke it down for us. Eileen is based in Florida, but there is a facility in Long Island which is about 1 hour from NYC. Families are welcome to stay at the Ronald McDonald House while they're in treatment. It's a 3-4 week intensive program where the child receives 4 hours of intensive therapy, 5 days a week. Hyperbaric Oxygen Therapy (HBOT) is also available during the 3-4 weeks you're there. So we're going on Thurs. to have Amelia evaluated by the Dr. at the HBOT facility and then by the PT for therapy at the center. All we need to do is get our pediatrician's clearance for her and x-rays of her hips and chest -- and we're good to go! I think we'll be doing it in June, sometime after Memorial Day (Mom & Dad's 50th Wedding Anniversary Party!). And there is already an event on June 16th that we're trying to pull in some fun things for them to raffle off (signed playbills and scripts from friends mostly).

And lastly, Spike (Nestor's 19 yr. old) is done with his sophomore year at Lehigh and he and his girlfriend, Christine are leaving on Sunday to spend 6 weeks in Shanghai, thru school. He came over and spent a couple of hours with Nestor and I today and we went to John's for pizza -- so yummy! I didn't think we'd be able to polish off 2 large pizzas between the 3 of us. What can I say? The slices are really thin!!!!

And then there was Adam

I just had to drop this quickie in. The other day I took Amelia out for a stroll around the neighborhood and bumped into our friend, Francis and her little one, Adam (I think he's around 17 months old?). Amelia and Adam see each other occasionally at the park. He's smiled at her and played with the toys on her stroller, etc.

Anyway, Francis and I were talking, stroller to stroller and Amelia reached out. I thought she was going for the arm of the stroller...but she wasn't. She took Adam's hand. It was so sweetly spontaneous. She held his hand for a few moments, smiled and laughed...and Adam smiled sheepishly in his stroller. Francis thought it was adorable -- but she had no idea how incredibly beautiful it was for me to see Amelia reaching out to her friend.

It's happening!!!!!!!!!

I have such exciting news to report -- Amelia is commando crawling! She's been heading in the direction, between the creepster action she's been getting and the unbelievable motivation she has to fly, fly ,fly...she is finally pulling herself around the room on her belly. You can see how much work it is for her and we're still using the creepster a lot so she can feel the sense of accomplishment in zipping around, but she is finally, finally using her arms and getting herself around on her belly. It started yesterday, but didn't seem to sink in for us until today when Lia, her nurse and her OT and Speech therapist were here and each exclaimed "Oh My God! She's crawling!", then Nestor and I were like, yeah...she is isn't she. I know it seems sort of air headed of us...but it's just been soooo close for sooo long -- but without results -- and now, all of a sudden -- there it is. We are so proud of her.

And if that isn't enough, another huge milestone was reached yesterday. Banging, hitting, shaking, clapping are all things Amelia does not do on her own. She has this huge drum/container that has all kinds of musical instruments in it. Well, yesterday Nestor was on the floor playing with Amelia. They were playing with the maracas and she started mimicking what Nestor was doing with the maraca by shaking (slowly rotating the wrist high up in the air) her maraca with his. The other day she held onto one of the drum sticks and was making a real effort to hit the drum top -- which was so cool. She's really starting to respond to modeling (when they watch you doing and try to do for themselves). Such an amazing girl.

She's still doing great with the feeding. Amelia had about 8 bites of strawberry-banana puree today (thickened) and got it all down before fatiguing. We're stopping the feeding before she fatigues so she ends on a high note and food remains a tasty, fun experience. She is definitely enjoying herself.

This weekend we met up with our friends Donna, Shawn and Darmia. Darmia is 3 and Amelia was just loving her. We went to the park before getting brunch and on the way from the park to the restaurant Amelia was getting quite kvetchy. Darmia would walk up beside her stroller and Amelia would let out the biggest smile and laugh when she saw her. It was so precious. Amelia was so responsive to Darmia...much more than I've seen her before. At one point, Darmia was standing in front of Amelia, when Amelia decided to reach out her little saliva-full hand and touch Darmi's face. It happened so quickly and I wasn't expecting it. Darmia scrunched her nose and kind of laughed. I said "Ooops! Amelia loves you a lot!" and tried to laugh it off.

To sum it all up, when Amelia's OT, Amy arrived today and started working with her. Amy looked up at me with this big smile on her face and said "I feel like she's this whole different person." I couldn't agree more.

Girls day out!

I have to put in a quickie note that I am having a pretty great week as far as getting in "girltime."

Tuesday I met up with a good friend of a good friend and had a fantastic day of lunch, shopping and shmying around. It was really nice and I'm excited to add another gal to my roster of pals.

Today was another girlie day -- just Amelia and Mommy! We went out for a couple walks, did our creepster time and had some quality snuggling and hugs.

Tomorrow, I'm quite excited to be wisked away by my friend, Carrie, for pedicures, a massage and some chill time at her Dad's pad, on the upper east side, for a few hours -- just to get away (her Dad's in FL).

I've been missing my gal time -- when it rains it pours! (April showers and all...:)

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 kids...it'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.

What to do?

So, by now I'm sure that everyone has heard or watched the story that was on the Today show with the little boy, who has CP and had a transfusion of his own cord blood stem cells. Within 5 days he was walking and talking, of which he had not done previously. Nestor spoke to the woman down there who is doing the transfusions at Duke University. She said they will ONLY use the person's own cord blood -- absolutely no donor cord blood, from a sibling, relative, friend, etc. Big fat NO!

So Nestor and I are now in an obsessive frenzy to get Amelia on the stem cell train. Of course, we didn't bank Amelia's cord blood. Who knew? I have my cousins Jenn and Barbara and great friend, Veronica who are all about to give birth. Can I show up at their respective delivery rooms with a ziploc baggie and cooler of dry ice?

Last week I got on the horn to our Neurologist, Dr. LaJoie out of NYU who informed me that she had a family out of Long Island who had taken their daughter to Mexico and had had the transfusion done there with donor cord blood stem cells. The clinic is outside of San Diego, but because the transfusion isn't FDA approved, you are taken just over the border to a hospital in Tijuana for the actual transfusion. Nestor and I had a conference all with the Mom of the girl. She told us that her daughter has CP, was very visually impaired and had been having very serious seizures, to the point that she thought they were going to lose her several times. They had to do something, so she researched the clinic, the drs. involved and felt comfortable enough to take her daughter there. Since the transfusion, her daughter hasn't seized (a couple small ones when she's gotten very sick), is off her meds, can now take steps in her walker and is now visually tracking. She attributes all of this to the stem cell transfusion.

The problem is...there's lots of really bad press swirling around this little operation out of southern CA. If you google the drs. there, David Steenblock and Fernando Ramirez Del Rio, you'll pull up there sites and then all the bad press surrounding them. But the biggest red flag came up when I spoke with a contact at the Cord Blood Registry (who was given to me thru the wonderful OB/GYN who delivered Amelia in LA, Dr. Peter Weiss), Dr. David Harris, who has been working with the docs at Duke. He gave me a list of questions for the clinic as follows:

1) Where is the donor cord blood coming from? Get the name and accreditation number of the bank. (The clinic in CA told me they could not divulge that information but she could assure me that it was from a University in the US and met the AABB certification standards, having been tested for pathology, bacteria and virus's -- uh, not sure I'm comfortable with that!)
2) Where did they come up with the amount of stem cells they will tranfuse at one time? (the clinic in CA told me the max they would do for a 2 year old is 6 million stem cells, Dr. Harris told me that the 2 year old at Duke received 100 million of his own stem cells at once)
3) If this process is being done under the proper protocol, in other words, using before and after assessments and quantitating your findings, it shouldn't be too hard to get FDA approval. Why aren't they trying to get their FDA approval, at least on a case to case basis?
4) The clinic in CA told me that they have a 75-80% success rate with Cerebral Palsy patients. Dr. Harris questions why they have NEVER published their findings with success like that? He has never seen anything written by them -- and he assured me that he never misses an article. (The clinic in CA emailed me an article written by their Dr. Payne which was a hypothetical...A HYPOTHETICAL? Isn't that what we used to write for our science projects in 7th grade??!!??, that's ALL they've published on their findings?)

Then, to deepen our skepticism, my sister's friend knows the Dr. at Johns Hopkins who started stem cell therapy research 20 years ago, Dr. Civin. We emailed all the links that had been sent to me thru the clinic in CA and he responded by saying that the docs in CA sound like quacks. Case closed.

However, there is a clinic in Costa Rica www.cellmedicine.com who extracts the stem cells from the patient and reinjects them. It doesn't say whether or not they've been working with children, so that will be more research. There are also places in Switzerland and China. Our big hope is to try and find someone here, in the states, who wants to start a study here and needs a precious little girl with big brown eyes and brown curly hair!

The good news is -- there is so much hope now in an arena that is just getting started. Hopefully we'll be able to find help sooner rather than later. Amelia deserves the best chance we can give her...as does every person who can be helped by these elusive little stem cells.