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Heads Up

Posted Jan 27 2009 8:14pm
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.
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