Wednesday, May 13, 2009

Up to a lot!

Ok so I haven't posted in a while, we have been pretty busy. I will start with Mothers day. Mark got me a very lovely present and I was kinda shocked! Mark and I don't really do holidays, so it really, really surprised me.

I got a 4.0 in my math class thank goodness and I'm super glad its over.

We went up to Park City for the SMA meet and greet on Saturday. We got to meet some other SMA families and it was great. Its nice to meet people who are in the same situation that we can totally relate to. Brynlee got to meet Riley, and she was giggling and talking to him. It was so cute! I forgot to take my camera because we were on the fence about going and decided to go at the last minute. We are going to be doing a Walk And Roll in the summer, so I hope all ya-all who live here will be able to make it. Brynlee will hopefully have her wheels then. I am so excited Utah can finally help contribute to SMA research.

Ok so yesterday we had Brynlee's clinic appointment to find out how she is doing. We had Physical Therapy first and it was great. They do this thing where they put their legs in the air and drop them to see if they catch them. Brynlee's have always fallen to the frog position immediately. For the first time her feet hit the ground and she kept them there!!!! It was awesome and I wanted to start crying. She is still learning to do new things and a year ago I never would have thought this was possible, She knocks the breath right out of me sometimes. So when we were done with PT we had her MUNE test. They put these little electrode things on her hands and then shock her to see whats going on. Brynlee is around the same as the first time we went in right after she was diagnosed, this is fabulous because she was still kinda stronger when we went in the first time. In the middle of the year she got a little weaker and now she is back to what she was. Another reason this is so great is that usually after an intubation they can lose a lot of ground. We then did her blood draw and sent them to the lab.
We got to skip the dexa scan this time thankfully because it is clear on the other hospital. Soooo we went and got x-rays of her scoliosis and her arm because they were thinking it was broken or fractured. She has been guarding her right arm for a very long time now. We are going to start her on liquid albuterol and see if that helps boost up her strength anymore.
Brynlee's lungs have lost about an inch and a half which means that we now have to get another sleep study done, so we can calibrate her Bi-pap. YUCK, we don't like sleep studies!

Today- No broken bones or fractures, YAY! So we are going to get more aggressive with Therapy and work the kinks out and see if we can get it moving more. Abby(Dr. Swoboda's wonderful nurse) called and said that she has Osteopinia(the beginning of Osteoporosis), we have got to start giving her a calcium supplement. She also said that her hemocrat and hemoglobin was low and has been for a very long time. They suspect that she has Anemia of chronic disease. We had to go back and get blood drawn again today so they can make sure that's what is going on. This was hard for me to hear because now we are probably going to have to have a nurse come out once a week and give her a shot and take blood. I wish so so so so badly that I could take it for her. I hate her having to get shots or blood drawn. We will see what happens with the labs(fingers crossed).

I got a call from our home health today saying that our DME was maxed out. We don't have a max DME, I told him. He said yes you do it went into effect the beginning of this year. I freaked out and called our insurance, I was so pissed off and thinking there is no way we can pay 30k for a wheelchair, what the hell are we going to do?!!! I talked to our Case Manager and she said that they changed the policy on everybody. She said that our Wheelchair didn't count as DME and we would still get it. That our oxygen supplies are all covered and most of the other stuff we have is covered. She doesn't know about the cough assist yet but she is going to find out and let me know. We finally own most of our equipment now so I'm hoping we don't need to much more this year. Anyways its just been an emotional couple of days and I am happy for them to be over.


Eric and Ashley Wheeler Family said...

It is good to hear she is doing so well! And that you got spoiled on Mother's Day. You deserve it! I can relate with wanting to take shots for your is awful! Good luck with the insurance details...yuck!!!

The Gustafson Family said...

I am happy to hear that Brynlee is doing well and that she will get the equiptment she needs. We decided not to enroll Nicholas in the University's study right now, but have an appt with his neurologist here in Portland on Monday. I have heard great things about him and have a long list of questions for him. Maybe we will make a trip out there sometime in the future to see Dr. Swaboda and we can meet each other. Take care!