Wednesday, January 20, 2010

Happy Birthday Sunshine!

It's been such a busy couple weeks. Running from doctors appointments, to UCP for new AFO's (Ankle Foot Orthotics) & to look at new adaptive equipment which we are very excited about, to visiting Adaptive Designs (see link on side bar list), which is one of the most incredible places we've ever visited! Amelia got sick last week and is on 2 weeks of antibiotics, eye drops, ear drops -- along with all the usual meds and respiratory routines. Plus, she shared with Mommy, so I got pink eye too and some kind of sinus thing. We're much better now.

So, Adaptive Designs is a place in NYC that builds furniture out of heavy duty, dense, corrugated cardboard. They bind together layers of it so it feels as strong as wood -- it's incredible. And because it's cardboard they can build ANYTHING! If you can dream it, they can build it. We ordered a high sitting chair with a 10% decline insert that forces the person sitting in it to engage their core muscles -- I think I need one. Also, they're building her a table with an attachable board that can be positioned from flat to 90 degrees and is covered with velcro so we can attach toys to it. We're so excited! We were also able to borrow a scooter from them (if you go to the website, go to Hannah's story -- it's the big wheel scooter that she outgrew in the pics). And my favorite part about their furniture is that it is all painted up beautifully. So much of the equipment, that our children need, is institutional looking -- everything there is a work of art, all hand designed, built and painted. They also work on the "no child left behind" policy which means -- your child needs it -- we're gonna build it -- and we'll figure out how we're getting paid later. The people there are truly, all heart!

We saw Avatar a couple weeks ago (if you haven't seen it, you must -- in 3-D, we want to go back to see the 3-D IMAX version -- which was sold out). Nestor and I were struck by one of the lines, "I see you." I love this line. It's how I feel about Amelia. She can't speak, eat or walk -- but I see her. I see this little soul and I know this little person. She is goodness, innocence and love. But she is also opinionated, sassy and demanding. Amelia can't tell you exactly what she wants, but boy will she let you know -- her way! She has perfected her laughing, happy sounds, head shakes, signing "give me", wailing and a little crying (Amelia is quite the diva-drama queen). She makes her voice heard.

Amelia's birthday is on Sunday. I can't believe how much my life was changed *forever* four years ago. I cherish every moment with her.

Wednesday, January 6, 2010

Happy New Year!!!

Chelsea Market
Christmas 2009

OK, let's cut to the chase. Between Christmas and New Years, Amelia had her Nucleur Test. This is where they put radioactive dye thru her G-tube and do several studies to see how her system is digesting and if there is any reflux and/or aspiration happening. She was such a good girl! No one could believe how sweet and cooperative she was. Amelia is not at a point where you can tell her to sit still and she understands. She is 3 (almost 4!), with global developmental delays! But boy, o boy -- she was put on the gurney and fell asleep -- for all three studies! What an angel.

AND THE RESULTS OF THE STUDY ARE (drumroll please)...Amelia is NOT refluxing or aspirating. This is very good news and gives us a clear understanding as to what is going on.

This means that all of her recent pnuemonias are a result of her not handling her secretions well. They sit in her throat and chest and because of her hypotonia (low tone), they pool, grow bacteria (dark and moist conditions) and eventually make their way into her lungs where the infection blossoms and off we go to the emergency room in the middle of the night!

However, let it be said that since our last hospitalization in November, Amelia has not had a pnuemonia. She got a cold a couple weeks ago -- and that is ALL it was. A cold. This has never happened in this household. A runny nose has always led to a full blown respiratory fallout -- with major courses of antibiotics, steroids and a slew of breathing treatments.

I attribute all of this wellness to our new Pulmonologist, Dr. Marcus at Maimonides -- who we were led to thru our wonderful friends Carrie & Scott (shout out!!!). From our first visit he was so proactive in Amelia's respiratory treatment and this is exactly what she needed. We had a routine visit with him on Monday and I swear, it's like Amelia understands how much this man has helped her because everytime he walked in the exam room she smiled and laughed at him. That's not typical behavior with a semi-stranger for her. It's great! We are so lucky to have found him.
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Yesterday, Tuesday, we went up to UCP to have Amelia fitted for new braces (AFO's). She is growing like a weed! We're about to order our first adaptive stroller, the Special Tomato EIO Pushchair -- anyone out there have it? It's really nice and I think she'll be much more comfortable in it. The Physiatrist, Dr. E and PT, Michelle, can't believe how big she is. The group there has known Amelia since she was about 6 months old, so it's great to get their perspective and input as to how she is developing. Dr. E was saying "Boy, she's moving a lot. One day she's going to be running around and..." I just glow when I hear someone who has worked with so many kids like mine say that. Dr. E has seen a thousand Amelia's -- and I get giddy when I hear her talk about what she sees for Amelia's future. I see it too!

I try to do a lot of walking with Amelia. She's gotten so strong. I stand behind her, hold her hands and she'll take steps and walk. It's HUGE! I used to have to hold her by the hips or under the armpits, but now she'll walk just holding your hands. Of course each step is a struggle, but she is so determined and I am so excited each time I see her achieve a voyage from her crib to the living room or to her stroller. I still can't believe all she can do!!!!

Also, we've discovered that Amelia is huge grape fan. In the car ride down to Baltimore last week, Nestor and I were snacking on grapes and I felt bad -- because whenever I'm ever eating anything Amelia gives me the stare -- the one that says "Give that to me!" Well, I put one between her teeth and had her bite down on it, then rubbed it all over her tongue and gums -- she loved it. She kept reaching for more and more grapes and I would repeat this ritual each time. Her Speech Therapist came for a session for the first time since the break and I told her about Amelia's new love. She tried it with her and said that she got the best jaw movement she's ever gotten with the grapes! Now that's how you start the year off right!