Friday, August 29, 2014

Raising Funds for Therapy and Surgery

Some therapy items from E.I.

I can't believe 3 years ago I was in the hospital on bed rest wondering if I would make it to 24 weeks...if Josiah would live...if I would be okay. God was/is merciful and our miracle baby is going to be 3 in a few short weeks!!

With turning 3 though means aging our of Early Intervention. As in THE DAY he turns 3, no more therapists coming to the house, no more speech therapy group, no more free "rented" resources from them. Early Intervention has been there since the beginning. From occupational therapy (strengthening particularly his core/ upper body), to nutritionists, weight check ins, feeding & swallowing test, feeding therapy, to eventually teaching him to crawl/walk before moving from NH. Though he's still not talking, I have to remind myself he's come ALONG way since birth!

Savannah's therapist does certain message exercises to struggle her muscles orally to help her feed better, which will in turn help her when it comes to talking (babies with Trisomy 21 struggle with that). I am VERY frustrated that no ever mentioned, did or taught me to do that with Josiah. He didn't orally eat so they knew his muscles needed to be strengthened eventually so he could eat. We have learned that's one reason for the delay in speech...his muscles are too weak. So WHY didn't anyone work with him or teach me to, from the beginning??!? I had no clue back them.

Here's is a video of me sort of doing one of the messages. I'm not doing it properly because I was trying to get her to laugh for the camera. :)

video


So where does that leave us? We are waiting on his evaluation with the public school. We have an apt at the end of October to hear what they have to say. I am also calling private therapy locations that the E.I. therapist recommend to book evaluations. He has a clinic on the 5th with the surgeons and will need a letter form them for the insurance and then we have to pursue trying to cover his therapy.

So in the mean time, God has shown His mercy again, Josiah's E.I. therapy group is able/willing to keep him on through the fall session as a community kid!! The downfall is we have to pay for them completely out of pocket and he will go from 3 days of therapy a week to 1. BUT there won't (shouldn't be at least) be a gap in his speech therapy while we work on finding him some where else to go. :)

Then as you know the plan is for Savannah to have open heart surgery. Right now we are looking at the second week of October but we shall see. I am working on finding out what the insurance covers, making sure she is covered for it, and if they/I need anything.

That being said I am looking to help my husband out with raising funds to pay for Josiah's speech therapy and any "tools" we will now need to buy, plus help cover any medical bills from Savannah. I am doing that by selling Lilla Rose and Jamberry Nails.



You can "like" my lilla Rose Facebook page to keep up to date with new styles and sales, here: https://www.facebook.com/LillaRoseChristen

My website is: http://www.lillarose.biz/christen 



You can also "like" my Jamberry Nails Facebook page to keep up to date, here: https://www.facebook.com/ChristenJamberrynails

My website is: http://christenkieffner.jamberrynails.net

I have an open party going on until 8/31 if you would like to place and order. :)

Thank you for reading all my ramblings and explanations. If you have any questions feel free to ask! :)

For His Glory,




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