Where do I even begin with the updates. Well lets see. Just a few days after I posted in April, we took Emma to the ER. We kind of suspected a shunt malfunction. She was fussy and pukey and just not her typical Emma self. It was a LOOOOOOOOOOOOOOOOOOOOOOOOOOONG day. They were busy, their computers were broken and we all know what happens when we lose technology. They were pretty confident with the symptoms we were describing that it had nothing to do with her shunt. THANK GOD! So then we had them collect a urine sample. I was going to take one down to them that morning anyways because I also thought she may have a UTI. Well it turns out that the culprit was a UTI. It was a pretty bad one again. We went home with an RX of Bactrim for 10 days.
We've also had some therapy visits. They are still going well. Emma loves PT on the days when Ms. Nancy lets her do her stander for the whole visit. Well the visit on the 21st, Emma actually had to do more then just her stander. She got to swing and we tried a skateboard looking thing with Emma on her belly. I think she would have really enjoyed it but she was already so ticked off that she wouldn't calm down to see what was going on.
We've also had a few more visits at the Pearlman Center. What an awesome place that is. They are the place that is letting us borrow the stander long term since our insurance is DUMB... more on that in a minute. We went there on the 22nd and Emma got to try a power chair and she also got to ride in a regular wheel chair. Emma is amazing. She was starting to get the hang of the power chair by the time she got fed up with it. But we put her in the manual chair and she was OFF!!!! Connie at the Pearlman Center had mentioned that she isn't so sure that Emma needs a full power chair. Emma has the ability physically and cognitively to manipulate a manual chair and we'd all hate to see her lose that ability. So Connie recommended power assist wheels. They have a little motor in them and they meet Emma's effort and help her wheel. One of Nancy's biggest concerns with Emma using manual all the time is the wear and tear on her shoulders and also the exhaustion physically and mentally that research has shown comes with full manual chairs. I think the power assist wheels would be perfect. Now for insurance to cover those. HAHAHAHAHA... praying that they will cover them with out a fight.
So onto my plight with our insurance. Nancy wrote a pre-determination for the stander which was denied stating that children without independent mobility do not benefit from a stander. Which is BS. There are some physical benefits, i.e. constipation, but also social and cognitive benefits as well. So she wrote an appeal and that also got denied, basically for the same reasons. So we asked Dr. McMahon to do a peer to peer review which is where she would call and talk to a physician from the insurance company and help them see the light. Well we were at Children's on Sunday (dropping off a urine sample because Emma has another UTI), but we ran into Dr. McMahon and she was filling us in on the peer to peer and said that they didn't want to cover it but the physician called her back and said it could be covered but it would count as her wheeled mobility. Well that wont work because she is going to NEED a wheelchair before 5 years and insurance MUST cover that. So all this to say, that we are going to be writing letters to EVERYONE that will read them about how insurance should cover standers and all the benefits that apparently they don't know about. If you want to join our mission please let me know. Probably what I will do is type up a "form" letter and I can email it to you and you can sign and fill in the blanks and then send it to your governors, senators anyone who could make a change.
In the past few weeks part of the reason for the lack of my posting is because we were getting our house market ready. We listed our house 2 weeks ago today and we got an offer on it 1 day after listing, which is AMAZING. We are so blessed that God has provided a buyer for our home. But now our search begins. We don't really have many viable options that are for sale in Anderson Twp, right now. We continuously pray and ask you to pray with us that God leads us to the perfect home for Emma and for our family. Also please continue to pray for Emma's health and well being. She has a sedated MRI on June 16th to check for her syrinx. To make sure that it has stayed smaller. Please pray that it hasn't grown and if anything that it has just gone away. We know that God is the ultimate healer and physician. So we go before him asking for his care over Emma.
You all are amazing and I think you for your continued prayers and good thoughts for our Ems and family! You are wonderful supporters! Thank you thank you thank you! Now onto the pictures of sweet Emy!!!!!
Emma likes taking selfies!
We went to a car show benefiting SBAK and Henry!
She LOVES swinging!
See another selfie!
Modeling some of her swimwear for FL!
At a memorial day BBQ!
Just being her gorgeous self!
We took her to Target and let her do her stander around the WHOLE store. And in typical Emma fashion she did AMAZING!
Trying out a manual chair!
Wheeling it herself!
Trying the power chair!
We did a walk for Uncs to benefit Crohn's and Colitis
One of our 8 million (or so it seems) trips to Home Depot!
Cheese!
This is what happens when you need to get laundry done and have a 1 year old. Put her in a basket and let her play with a roll of toilet paper. LOL! Gotta do what you gotta do!
Just lounging in her porch chair!
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