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Wednesday, October 14, 2009

Going.... HOME!

It's been a whole week since my last update. Out schedule is so packed! Starting at 7am, we are swamped with therapies and activities and things to keep us busy and unaware of the stuffy hospital setting. We get a short break everyday at 3p that consists of about an hour of convincing Gabriella she needs a nap, then an hour and a half of napping, then a half hour of convincing her she needs to get up. Then its dinner, family visiting time and bedtime!

First thing first, Gabriella's heart is stable! Praise God! They did an echo Monday per my request to make sure the trauma of the stroke and medications she was on did not negatively affect her heart. The scan showed she was back to her baseline pre-stroke and there were no immediate worries aside from the ones we faced before September 25. I am so severely grateful for this...

Over the past week, Gabriella has 'graduated' physical therapy. Not literally, but she technically doesn't need the class anymore! Her balance is back on track, her stamina is in full 4 year old force and she runs around with the therapists like crazy! occupational therapy is going to well. Gabriella is using her right arm consistently. We are working on gaining her fine motor skills (using her thumb and pointer finger for things), controlling the movement, and building wrist strength. She still has hardly any wrist movement or control, but we will keep working on it! Speech is going well. Though Gabriella still isn't talking, she is making so many more sounds and has strengthened her mouth and has gained the ability to control some tongue and jaw movements.

The level of her speech disability is extreme, so we are reaching out to multiple resources for therapies. Thought we were denied for ACCCHS before we even applied, it's ok. We start outpatient therapy Friday, we are working on setting up with the Chandler school district to form an IEP and get in-home tutoring, and have applied to DDD (not looking favorable because she doesn't quite qualify) and Arizona Long Term Care for supplemental therapy assistance. I found out today we have a $25 out of pocket for each therapy, so I had to voluntarily decline physical therapy due to the cost. So just doing OT and speech 3 times a week as recommended, it could cost us $150 a week for therapies if we do them 3 times a week. I am hoping we can get the school thing rolling within the next month or 2 and can bump the therapies to twice a week and use school as the additional. Though the $25 really stinks, we DO get an additional 60 days starting January 1! SO we can exhaust all 60 days before December 31, and get another 60 days starting January 1.... which gives us until well into the 2nd quarter of 2010 before we have to worry about insurance not covering therapy.

The title of this blog says we are going home! YAY! We are being discharged Thursday, which makes it a solid 3 weeks in here. I was telling my sister, it wouldn't be so hard to stay here still if it weren't for the fact that Gabriella is doing so well. She is running around, playing and being herself- which makes me want to get her home to badly. Had she been in bed a lot, on lots of medications or not doing as well, I wouldn't hesitate staying, but she is READY! Her brother is going to be her best DAY LONG therapist. We have tons of activities to do at home. And thanks to the approaching cootie season, we will be forced to mandatory play time! If you don't see us around a lot, or we don't show up to functions.... don't be sad. It's for the best of Gabriella. Once the neurologist clears her to safely be put on a bypass machine, she will be listed again on the transplant list, so I need to start NOW in keeping her as healthy as possible! We are not sure how long it will be before she is listed, but it could be as soon as mid-November or as long as late March. Hopefully, after meeting with our new neurologist next week, we will have a better idea.

I am getting bombarded with pamphlets, scripts and therapies so I should go for now. I am way too excited to drive my van, cook a meal, sleep in a bed, and squeeze both of my babies in my arms at ONE TIME! Thank you all so much for making it happen through prayer! They said rehab would be 2-3 weeks minimum.... and here we are- 2 weeks into rehab and she blew the socks off of everyone! Way to go, my little princess. You are my hero.
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