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Monday, October 5, 2009

A much delayed update: Day 11

Excuse this entry if it seems all over the place. I've been writing it, interrupted, for hours.

Today was day 11 in the hospital. It feels like both time has stood still to things in the real world and lasted forever inside these walls. It becomes harder everyday our family is broken apart, and even worse when my babies communicate through the glass window of the lobby.

Therapy is going amazing, mostly. We have a firm schedule set up for therapy, meals and naps. It limits our ability for visitors to 4p to 8p weekdays and anytime on weekends, but we are here to get better and get out so we will sacrifice free time for work. Daddy went back to work today so Gabriella and I are sticking to a firm routine to pass the days.

Gabriellas physical therapy is almost unnecessary, she is walking so well. They are working on her arm now to help with occupational therapy- which is also doing great! She has great range in her arm and her strength is increasing daily. We are working on elbow and wrist motion, and zoning in on controlled movements.

Speech is another issue. The combination of her apraxia and aphasia is so severe, the learning process is much slower. I can see how and starting to accept that regaining her vocalization will take a long time. It astonishes me really. How God gave me such a verbal, opinionated, sassy girl and now took her voice. He never let's me down- constantly giving me pieces to this big picture only he can see.

Some good speech things, on top of Gabriella saying the words 'more' and 'mom', is she is humming songs (we have been singing to her and she's catching on) and she unintentionally says some things like 'no', 'one' and 'watch'. Its subconscious because she can't do it again, but nonetheless happening. Its a sweet sound.

We found out today that our insurance only covers 60 days of outpatient therapy. And on that, we have to pay $25 for each session. Its going to take a lot longer than 60 days to get her talking again. So we are starting to pray God gives us means to get extended therapy.

We had movie night last Friday which was super fun. They turn the surgical waiting area to a mini theater and served popcorn and juice. We took dinner down there and watched the movie with some cousins and aunts. <3 and today we had a chance to meet Mike Leach with the AZ Cardinals, though Gabriella ignored him. We do lots of painting in the free times and walking the halls between classes. I get so stir crazy in our 10 by 6 foot half room so I keep her busy.

We have been so blessed by so many people through this. I can't even begin to pay back the blessings, but will try, and will pay it forward as well. Hopefully I can get online and post more with pictures tomorrow!

ETA: Pictures added Nov 2009



Corey~living and loving said...

Thank you for the update. I loved it. many prayers to find a way to cover more therapy.

The Simmons Family said...

Thanks for the update!!!

As far as the therapies go...
Ask to speak with a social worker in the hospital. Explain your situation and see if they have any resources to help with therapies. Owen gets early intervention through DDD because he is "at risk" for cognitive disabilities. With this he gets OT, PT, and Speech therapy at home everyweek. I don't know if Gabriella would qualify because she is older, but it's worth asking. It's also paid for through the state so it won't suck up all your outpaitient therapy visits.

ALSO... look into AZLTC for Gabriella. It's Arizona Long Term Care. Owen just qualified and we get secondary insurance for him -- a type of state insurance for acute care patients.

Again, she may not be a canidate for either, but ask the social worker at the hospital for more info!! :) Or you can check out Arizona DES.

Praying for ya'll all the time!!

The Simmons Family said...

One last thing...
check into SSI for children. We didn't qualify because Owen has too much $$ in his transplant donation account. BUT.. if he had qualified and he will when that's depeleted... he would qualify for medicaid. Again.. secondary insurance to help pay for the cost of all the post transplant meds and therapies.

Sorry.. just thought of that!

Juanita said...

Kristi, you are doing fantastic we don't expect any more from you. Way to go G sounds like she is really coming along. I will continue to pray for her progress and also the financials needed for your family. I will also pray for PJ to be with his big sis soon.

Anonymous said...

When my daughter needed speech therapy our insurance wouldn't cover it because it was a developmental delay. We were referred to our local university's Communication department. She received therapy from a student that was watched and supervised very closely by her professor. The student was working on her Masters degree. I think the therapy sessions were 1 hour and $11 each. We went twice a week but they set all of that up on an individual basis. We did this for 4 semesters and I was very impressed each time with the students and the whole program. This is just an idea. Best wishes to you and your beautiful daughter.

Tasha said...

Praise God for the improvements, and we will continue to pray for her speech and language to come along. Thanks for the update!

Megan@SortaCrunchy said...

Hearing G's voice on April's facebook video saying "more" and "mom" was absolutely the best sound I have heard in a long time. I am THRILLED by the progress! Thanks for the update, friend. My heart is ever with you.

Unknown said...

Kristi...I think you are such an amazing person and MOM!! You have had so many trials and yet you keep your head on straight and stay positive!! You are truly an amazing woman!!! I love you and hopefully we will be able to make it down again for a visit!! Kiss the princess for me!!

Anonymous said...

Your insurance is probably a calendar year plan, if so, then her 60 outpatient visits will renew 1/1/10 and she will get 60 more for 2010. I am so glad to read that Gabriella is doing so well. God Bless your entire family!

Andrea Gunnell said...

Hi, my name is Andrea. I found your blog through the Simmons family blog. I've read through a lot of your blog and have been deeply touched. My son Kyson, has Hypoplastic Left Heart Syndrome and has had two heart surgeries so far. It was also our pediatrician that first figured out something was wrong with his heart. As I've been reading your blog I've been wondering who your doctors are that seem so great. Kyson has been blessed with many great doctors. His cardiologist is Dr. Alhadheri and his pediatrician is Dr. Auxier. Dr. Lamers did his heart cath last year. Both of his surgeries were at Phoenix Children's by Dr. A. I'm just curious if you know any of these people. Anyway, I'm grateful I found your blog and will be thinking about you and your family and praying for you.

Emily said...

Still praying Kristi!!!!

Anonymous said...

Just a couple of other places you might check on more therapy. A lot of times a child is able to get therapy through the local school system from the age of three on up. You also might check into any state programs that provide therapies for children. Also, your speech therapist should be able to give you exercises you can do at home with Gabriella that will allow you to stretch out the visits. Hope this helps.

Heather Hilton said...

Praying with and for you and your family and caregivers. Still sending love and light. God is good, he is carrying you all through this time. Your strength, through Him, is amazing. Keep it up you strong mama!

Heather Hilton
Austin, TX

cici said...

Praying for your little sweetheart today. Hope all is improving by the minute and her spi" are rooting for her!