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Tuesday, October 28, 2008

Heads Up

Seriously, she's keeping her head up when she belly crawls. It's quite remarkable for us. We're on our last week here at Therapies 4 Kids. It's been quite a experience and we are filled with excitement to get back into our "normal" lives, back to all Amelia's wonderful therapists who have all been so accomodating and patient with us as we took off for two months to do this with her. I am also filled with the fear of Amelia losing some of the extraordinary gains she's made. I feel a renewed energy to stay on top of all we've learned out here and really keep applying them to our everyday life. Wish me luck...I've been saying the same thing about a diet for myself and surprise, surprise...hasn't happened (okay, I know it's not the same thing -- but everyone's made resolutions).

Amy, PT at T4K's, is a so strong, smart, dedicated, compassionate and intuitive with our kids. She is truly a kid whisperer. We will miss her terribly. Hopefully I'll make her proud when we see her again and Amelia will still be doing all she's doing here. And what a huge amount of progress we've made.

It's been slow, but in the past several days, Nestor and I have noticed lots of new things happening. Amelia's fine motor skills have improved. Lots more reaching out for everything (including faces and hands) and exploring her toys with two hands and really looking at what she's in to. Weight bearing on the hands is what improves fine motor skills and Amy's been crawling --- sometimes wheelbarreling her down long hallways everyday for about an hour or so. It's a huge amount of work in which she used to scream her head off. These days, Amy sings her little songs and Amelia laughs a lot more than cries --which is awesome. Don't get me wrong, it's by no means easy, Amelia still complains, but no where near what she used to.

Amelia's gross motor skills have also remarkably improved. She is crawling so much better than before, as I mentioned earlier. Her head is up and her hands are really digging in to pull herself forward. She's just so strong. When you sit Amelia down, she's solid. Very little trying to balance her perfectly so she doesn't topple over, she just sits, or pivots, or grabs her toys, or anything else in her line of vision that she wants. She's into everything and I love it! Amelia's walking is getting sturdier, but it's her standing that is really impressive. She can stand at a table (with AFO's on) and play with a toy, by herself for 1-2 minutes without any support from us. Truly incredible! We brought over a Little Tikes shopping cart and we've been walking and standing her with it. It's the perfect height for her and we put a couple sand bags in it to weight it down so it won't tip over (most push toys are too flimsy and are made for a 1 year old, so they're too short). Amelia can stand holding the cart for minutes and is getting the idea of pushing something while walking, although it's still very hard. The other truly mentionable thing is that when we put Amelia in the therasuit and put her in the bungees, she is using the least support she can have in the bungees. Also, when we started standing her in the bungees without her AFO's, to get her feet used to the feeling and challenge of no support, her feet and legs would turn red and purple. She would howl and scream at us. I was always incredibly upset by this but Amy would tell me that it's because she's not used to really weight bearing into her feet -- yes, we have the stander at home, but she is sooooo supported that there isn't a whole lot of pressure on her feet. Well, I am happy to report that that is no longer happening to Amelia. Her feet are rosy and pink at all times now. She can stand for 45 minutes and she is strong enough to do it and most importantly -- comfortable. The walking has remained stable and constant. We can now walk Amelia supporting her under her elbows or just by the hands, which is so much less support than we used to give her.

As for therapeutic tastings, Lia, Amelia's wonderful nurse, showed me how she's been feeding her. One day, by accident --while trying to place the food to the back of Amelia's mouth as we've always been told to do, she missed and it landed on the front center of Amelia's tongue. She watched as Amelia started moving her tongue around like crazy and pushed the food to the back of her mouth and swallowed it. Now mind you, Amelia has incredible coordination problems, that being at the top of the list. She's not getting the food back perfectly everytime, and she fatigues easily but at least she's making the connection that that's what she's supposed to do. It's a huge thing that she's figured out. It's a very exciting step!!!!! Also exciting is that we found a speech therapist last week, finally, so we'll have a professional joining us again -- which is a huge relief! Also, it seems that Amelia's open mouth posture is lessening. She is actually pulling in her bottom lip and sucking on it. I can actually hear her sucking on her bottom lip! AMELIA WAS BORN WITHOUT A SUCK REFLEX. That's how huge that is.

The other thing we've been doing with Amelia for the past couple of weeks is pediatric accupuncture/accupressure. The facility we go to for Therapies 4 Kids and HBOT has just brought in a Pediatric Accupuncturist, Massage Therapist and Child Psychologist (obviously for the older kids). It's become a one-stop shop for kids with special needs. But seriously, it's really a terrific idea. For example, we got to the facility at 7AM, did our 1st HBOT dive, went to T4K's for our 4 hours of PT, then to Dawn(Accupuncturist) and Raquel(Massage Therapist) for 30 minutes of accupuncture/accupressure with some facial massage added for good measure and lastly, back for our 2nd HBOT dive of the day. We got back to the Ronald McDonald House around 3PM. Quite the full day and all under one roof! Pretty cool stuff. So the jury is still out on the accupuncture/accupressure. I can tell you that this is the 3rd week and with Amelia's incredible gains, it's impossible to tell what's doing what. It's an anchient medicine though, so I feel like it's gotta do something, right?

Overall, it's hard to crystallize everything because I see so many changes. She's just a different kid who is aware, communicative (thru her laughing or complaining) and strong. I can't say that word enough, strong...I just see and feel it.

Tuesday, October 21, 2008

Anda Le (Ride 'Em)

video

Wednesday, October 15, 2008

Another day, another cold


Blurry yes, but cute!
Just wanted to show you Harley, a Golden-doodle, who is one of the therapy dogs that visits on Sunday evenings at the Ronald McDonald House.

Amelia got sick again this weekend. It started Friday night. I was up with her every 20 minutes when she would either cough or sneeze. She was a faucet on Saturday and needed so much care I couldn't even go to the bathroom without pulling her in there with me (lovely, right?)...by the late afternoon her temp was up and I was up with her all night Sat. night. We took her to the Ped. on Sunday afternoon. Needless to say, we took Monday off from Therapies 4 Kids and went back to LI Monday afternoon and started back on Tuesday morning.

I bumped into the other Amelia's mom, Dora, from the playground (see several posts earlier), who is pregnant again --YAY! Who put it best by saying that everytime Amelia gets sick, she just gets a "touch" of it. I agree. I'm sick this time too, but not nearly as full blown as my girl. Just "a touch". You know what I mean?

Anyway, so here we are, Wednesday. Amelia still has strong leftovers (and I was so hoarse yesterday I sounded like some sexy porn star) from being sick, so we've decided not to start the HBOT this week. They don't want anyone going into the chamber who isn't at their baseline and it's obvious that neither one of us is. So we'll start next week -- fresh.

As for getting back into therapy this week, she's been doing well -- for a sickie! Amelia is definitely not where she normally is, but Amy is being very easy-going about it. She's pushing her, but not too much for her physical issues this week while she gets her strength back.

My folks are in Germany and Poland doing the inevidable tour -- the one that all older jewish folks do, before they're too old to do it -- visiting concentration camps. OY! What a fun and romantic trip to take for your 50th Wedding Anniversary!

Tuesday, October 7, 2008

The Holidays and Beyond

When last we heard about our heroine, she was entrenched in intensive suit and HBOT therapy. We ended the month of September with a bang and headed back to the Big Apple for a few days of respite.

During which, friends from LA, Sal and Mateo Lopez, visited us in their hunt for the perfect college for Mateo next year. Neither of them had seen Amelia since she was 3 months old when we shlepped her to their beautiful home for brunch -- in which Mateo and his brother, Diego were the most polite teens I've ever seen. As I suctioned Amelia and hooked up her g-tube feeding, they never gawked or asked one uncomfortable question. The two boys were gracious and treated Amelia like any other 3 month old -- signs of true gentleman. So, during this visit they got to see the new and improved Amelia. No suctioning and a tower of strength compared to the last visit! I think they were pretty blown away. It's always so cool to see someone's response to Amelia having not seen her in 2 1/2 years.

The next day we packed up our stuff again and headed down to Baltimore for Rosh Hashanah. I hadn't been down there since Passover in May, so it was really nice to get back there to see everyone. I always get a kick out of seeing Amelia around all her little cousins -- and we have plenty of them now!!! She sees what it's like to not be an only child, with toys being stolen left and right...she was a little more perturbed by these goings on this time around, which I found to be a wonderful thing to see.

On the downside, our girl got sick in MD and had to go on antibiotics. I was up with her for 4 nights in a row. Also, not to be called selfish, Amelia shared her germs with Daddy and Bubbie. The good news is, we never whipped out the suctioning unit. We had to stay very on top of her with the bulb syringe, breathing treatments, tylenol & motrin and switch out the wipey (receiving blanket) we use to dry her nose, mouth and face -- but she managed it. She never became critical where we felt unsafe. It was really incredible to get through that without the intense fear we always feel when we hear her start to pant with a high fever that we end up in the ER that night. YAY Amelia!

When we got back to NYC, we threw Amelia into her homebased therapies. It was so wonderful to see all the incredible therapists who have been so accomodating and flexible with their schedules to stay on board while we take Amelia away for a month at a time.

We also took morning to visit Roosevelt Preschool, dragging Amelia along for the ride. LOVED IT!!!!

The first preschool we visited (several months ago) was Central Park West, which we loved because it has a big energy, with fun hallways and classrooms, ten steps from Central Park (which they take the out to often), with a rooftop playground, cool sensory gym and lots of adaptive equipment (including an adaptive bicycle)...in Nestor's and my discussion of it we had to admit that it's more suitable for higher functioning kids than Amelia. There was only one class of medically fragile kids.

Then we visited Rusk Preschool (a couple months ago) which is part of Rusk Rehab at NYU (a world renowned rehab clinic)...and I hated it. It's located adjacent to the NYU hospital on 34th Street and the school looks like a hospital. There is no big energy, it's a 6 hour a day program (and that doesn't include the busing time) the hallways are depressing, sterile and closed in feeling. But the therapists there are supposed to be top notch, with a feeding program that each child is in. For Amelia that is so important because, let's just say it, she's turning 3 in two months and she's not even close to eating. At Rusk, they do feeding twice a day. After not much debate, Nestor and I concluded that although we love CPW, Rusk seems to be more appropriate for Amelia's current needs.

And now on to Roosevelt! It's a new facility located on 34th & 10th. It's BIG energy, with wide hallways, tons of adaptive equipment, huge gym and soon to be sensory gym, wonderful staff (the woman I met at the school fair for Roosevelt happened to see us in the hallway and ran over all excited to meet Amelia), they also do two feedings a day (lunch and snack) and it's only a 5 hour program (not including busing time). The other thing which I absolutely love is that they are equipping every room in the school with adaptive communication devices. There are buttons, strings with beads on them and voice activated devices on the entryways of each doorway so that children can open and close doors for themselves and so on. It's so cool and I've never seen anything like it. Also, they are a curriculum based school but make a strong point of carrying over the PT and OT during class time. There were kids in standers and positioning chairs during class. Their wonderful principal, Karen Tumulty took us on an extensive tour of the new facility and explained that they do one book for about 12 weeks. They have pictures, words, interactive computer programs, etc. on the book they're doing so the kids get very entrenched in it. It all just sounded so exciting. The other thing we loved is that they have a sister school, literally across the hallway, called Gramercy Preschool. Gramercy is for higher functioning kids who are ambulatory. The nice thing is, if Amelia's needs were to progress beyond Roosevelt during her time at Roosevelt, she could seamlessly move into Gramercy across the hall. Sweet!

This past week we also had my cousin, David in from LA with his new, lovely squeeze, Barbara. David is another one who hadn't seen Amelia since she was 3 months old (once again, blown away!). Nestor and I had a really terrific evening with them which we ended by coming back to our place and watching the VP debate.

The weekend came on fast and on Sunday we packed up, yet again, and headed back out to Long Island to spend the month of October at Therapies 4 Kids. That's right folks...we're back! Amelia is really handling it like a trooper and doing wonderfully as usual. Her walking and crawling is stronger and stronger. I've been trying to really stay on top of it at home and carry over as much as possible. The thing that sort of blew us away yesterday was her standing. Amy (PT) stood her up at a table with a toy on it and eventually let go and OMG! There was Amelia....barely leaning on the toy (she was driving the steering wheel) standing by herself. She did this several times, for I'd say 10-30 seconds each) until she just got too tired to do anymore (she had already walked the length of a football field-- okay maybe not that far...but she works hard, darn it!) What a rockstar!!!!!

So that's our latest and greatest. Nestor left this AM for South Carolina for a few days to shoot an episode of "Army Wives" -- he'll be back Thursday. Until then, just me and my gal, oh..and our nurses...and all the families at the Ronald McDonald House...and Amy(PT) and Edna (OT)...other than that, it's just the two of us! It really does take a village.