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,




Thursday, August 21, 2014

Lilla Rose Sale and GIVEAWAY



Lilla Rose is having an awesome sale going on.

1. There are several NEW designs and they are 10% off!!!

2. Soon to be retiring designs are 20% off!! Grab them while you can.

3. Every purchase you make you will be entered into a drawing for a design of your choice.







Any profits I make on sales will be used to provide Josiah with speech therapy, since he will no longer qualify for E.I. come next month. Thank you for helping us with this expense, we so appreciate it! :)


For His Glory,







Heart Surgery(?) and Sickness

Hello World!


I can't believe it's been about 1 1/2 months since Savannah had her originally tube placed! I've had several people ask me for updates...it's hard when things can change several times a week.



blurry picture of the feeding machine from Naomi :)


Getting a tummy full.


 


     So far Savannah has been good about not pulling her tube out. She's only pulled it out 3 times. The first and last were about 3 weeks in and (she accidentally pulls it out by sucking on her fingers then her finger gets caught on the tube) she pulled it out a few days before we where going to change it anyway. The 2nd time though, she only had it in for about two days, due to the arm bands being WAY to big and causing them to fall off. Besides she hates the arms bands, since she can't sooth herself. A friend who is a genius by the way, *wink* suggested newborn baby mitts. Genius I tell you, genius!!! She can still sooth herself by sucking on the mitts, but her fingers don't get caught.


Loving my mitts. ;)


     Last Monday the 11th we went into Boston to see the cardiologist, to find out if the surgeon wanted to schedule surgery or not. Much to my mixed feelings, we found out that they DO indeed want to schedule open heart surgery. :( She said they would be calling me to schedule the surgery, that the surgeon wanted to schedule it on 2-4 weeks!! I was not expecting them to do it SO soon! She suggested that I push for 4 weeks to give Savannah more time to grow before surgery.

Hey mom, here's my foot!


It's been a crazy two weeks...Josiah and Naomi got sick from being at the doctors (they both put a toy in their mouths.) They then passed the germs on to Savannah! I also realized that 4 weeks would be the second week of September, which is when I scheduled us to start school. Eek! So I have also been in "full steam ahead mode." We started school the next day, but I am still prepping, organizing and scheduling, since I wasn't finished with that yet.

Sick, breathing hard, just want Mama!


     By the end of the week I still hadn't heard from anyone about scheduling her surgery and was getting frustrated! If they were scheduling surgery in two weeks that would be here before you know it and I have three others kids to make arrangements for, plus I would like to know what to expect regarding surgery and recovery. So I called the cardiologist (since I had no idea who the surgeon is and how to even reach him) and found out that the board of surgeons hadn't even met yet, so they hadn't discussed her case! What!!? That's not what I was lead to believe!!

Sick, sleeping on Mommy.


     They called me back Friday after talking with the surgeon and cardiologist. I found out Dr. Warren is her surgeon, he wasn't able to meet with the board of surgeons, but that they are meeting THIS week and will call me NEXT week with an exact date for surgery. To help me out and give Savannah more time they agreed to shoot for the second week of October, unless she takes a turn for the worse. So we have crossed out the 2nd week and were told to tell family and friends...Lord willing we will have an exact date next week.

Crazy early morning shot, by Naomi. :)


     No, I still don't have any details on the surgery it's self, expected time in the hospital, and recovery time.We did see the cardiologist again yesterday and were told to keep an eye on her breathing do to the combination of being sick and her heart. Lord willing we are seeing her again on Sept. 2nd.




For HIS Glory,





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