Tuesday, July 22, 2008

A little bit weak this week

We're back out on LI for a one week pop at Therapies 4 Kids and I must say that it's suprising how much endurance Amelia lost in her legs over the 3 weeks we went home. Her legs keep buckling after a few minutes when we stand her up in the Therasuit. We connect four bungees from the Spider Cage (it's a big 3 sided cage that you can connect pulleys and cords from) to her waist, which gives her suspended support (they are connected at waist level). Amy, our magnificent PT, has been having to use velcro braces around her legs to keep her knees from bending -- It's very frustrating. It's really her stamina more than anything, she just can't maintain standing for more than a few minutes in the bungees without fatiguing. But her overall strength has kept up well and her focus is still really good. I've been doing lots of walking with her at home (I hold her under the arms, but she initiates the stepping) and that's really good too. Although, Amy pushes her harder than I do in, in that, I give her a lot more support under the arms than she will, so Amelia fatigues faster with Amy than with me (I'm Mommy...I'm allowed to do that!)

One thing that Amelia did today that I was really impressed with -- Amy was trying to get her to use her arms more for moving (Amelia would always prefer to push off with her legs -- they're stronger), so Amy was holding Amelia's legs so she couldn't use them and our little girl starting walking her arms really nicely, one after the next, to get her toy. Amelia did really nicely and I was suprised that she did it. Amy used the velcro braces on her arms a couple times so she couldn't bend her elbows -- but when she took them off I figured Amelia would pull a "sack of potatoes" move on us -- but she didn't. She beared weight onto those little arms and walked them over to get her toy. Yay Amelia!

We're doing 5 HBOT dives while we're here for the week, because that's all they could fit us in for -- very busy over here! It certainly makes our day less hectic because we don't have to wake up a 5AM -- we now get up at a leisurely 7AM, so nice. We go to Therapies 4 Kids by 8:30AM and our HBOT dive is at 1PM.

We didn't bring the portable crib with us this time because Amelia is just too big for it. Instead, we bought a Kidco Princess Peapod Tent for her -- so adorable! She's camping out in the Ronald McDonald House and lovin it!!!! It's a great thing though and I encourage anyone who is sick to death of breaking their back on the pack and play to invest $84.99 in one. I spread a little playmat out in front of the tent opening, which I leave there and I can pull her out to change her clothes, diaper, deal with her g-tube stuff, whatever. There's an air mattress that you blow up and slide into a zippered pocket underneath the tent, so you don't have to worry about that, it comes with a sleeping bag -- and she seems to be sleeping nicely in it. But the biggest selling point for folds into a 19"x 6" round bag -- so much easier than a pack and play -- and certainly better than that portable crib! Anyway, sales pitch over.

We're still in limbo with lots of therapists leaving and some therapists located, but no one really in place solidly. And then most therapists take off the last couple weeks of August -- so it's a really weird time to be starting with new people on our case. Especially because I think we're coming back out here to LI for the month of September. So, we'll have new people for a couple weeks and then we won't see them again until October. Ummm, well, we'll see how that all works out.

Nestor's son, Spike will be home in a couple of weeks from Shanghai, where he's been for a couple of months with his girlfriend, Christine. They've been racking up some credits for school. Spike is now pre-med and actually sat in on a bunch of surgeries over there. He watched all kinds of things being removed (kidneys, rectums, etc.) and the weird thing is that over there, after the organ or tumor or whatever has been removed...they take it out of the operating room to the waiting room and show it to the family. That's right -- THEY SHOW IT TO THE FAMILY!!!! Talk about making sure you've gotten your monies worth! Spike and Christine were only supposed to be there for 6 weeks, but they both got tutoring jobs and stayed on for an additional few weeks. He'll be home mid-August for a couple of weeks and then take off for his junior year at Lehigh. Wow, time has flown! I cannot believe Spike is a junior already.

Hope everyone is getting through the heat wave without any serious problems or power outtages. OY! What a nightmare that would be.

Friday, July 11, 2008

6 months=6 months

We've been home for two weeks now and Amelia continues to process all she learned in her one month excursion to Therapies 4 Kids. It's incredible. We've been trying to stay on top it and have recreated some of the things she had out on LI. We bought ankle weights, so we can walk her (we hold her under the arms and she takes the steps -- and is doing really wonderfully with it) and she can have a sense of weight on her feet so she'll place them down after each step -- although she does really nicely with out the ankle weights too. We bought a big "under the bed box" and filled it with dried beans. We actually sit her into it as a sensory exercise and hide toys in the beans for her to scoop out. It's funny because when we take her out she has beans in all kinds of places...diaper, under her arms and in her toes -- cute. We also did lots of things using stairs, and even though we have a stairwell in our apt bldg, they're gross and very, very hard some-sort-stone steps. So get this, Nestor and I were at Bed, Bath and Beyond last week and we spotted doggie steps -- you know, for little dogs to get up on beds and furniture -- and we got them. They're actually not bad. We can put them up to our bed or sofa and practice walking up and down the 4 little steps -- ah, New Yorkers are certainly creative with their space! Amelia continues to be get stronger and very vocal. No official words (that we understand, yet) but she is fighting us and arguing with us like every other 2 1/2 year old.

Yesterday, Melissa, Amelia's Special Instructor who has been with us since Amelia was about 6 or 7 months old, told me that she is in the process of writing Amelia's 6 month evaluation (every 6 months Early Intervention has the therapists do progress reports) and she noticed that for the first time Amelia developed 6 months in 6 months. This does not mean she is all caught up, by any stretch of the imagination, but it does mean that she has that much less of a gap. Melissa mentioned that socially and cognitively she is doing many, many age appropriate things. Nestor and I were so happy to hear speaks volumes about what we and everyone else has been doing for our little girl.

Sadly, we will be losing Melissa in August as she will be moving to DC to be closer to her brother. But more importantly, she will be bringing her sweet charm and out-of-the-box approach to teaching to the special needs community in our nation's capitol. Also leaving us in August will be Amelia's Speech Therapist, Sophia. Sophia is so terrific, she's here so often that we've joked that she should just move in! And although we made a pact when she got married last summer "no pregnancy until Amelia ages out of EI" -- we didn't foresee her husband getting a job in Connecticut -- or I definitely would have added that. In any case, these two women have been so important in our lives over the past couple years and we will sorely miss them. Having said that, we are also excited for them and their new adventures. The kids in DC and CT are very lucky to have them!

As for us, we're heading back to Therapies 4 Kids on 7/21 for one week. We are so grateful for the opportunity to get her back in for a 1 week pop, we know how busy they are over there. We'll be doing the HBOT -- at this time they only have 1x daily available, but they may be able to squeeze us in 2x's depending on what happens over there with their schedules. And it looks like we'll be heading back out there again in September -- so exciting. We are truly so blessed to have met this incredible organization, who give us so much hope and inspiration to work harder and push harder, because we know that that's the only way to get results that will give Amelia the best chances in life.