After a wonderful week last week of great weather its raining now and cold. Brrrrr So, much for thinking Spring was here. Any way ,we had a busy week this week. Lizzy got her TLSO fitted CORRECTLY ( I hope) on Tuesday in Peoria . Come back home and then Lizzy had MF Release. We got home late but it was a great day. Linda noticed how much more Lizzy is doing also. Its exciting Lizzy is able to do more!! Makes my heart "Sing!!"
Got the approval from medicaid for the Trilogy( bipap/vent) this week but we have to stay in the hospital as I said before. The approval had to be for a vent not a bipap. Medicaid has been really good to Lizzy the past few years. Some cuts like the tubing but as far as machines or bracing they have been great. So, Lizzy will have to spend 24-48 hours in Madison, WI here soon. I am not happy about this but what are you to do? You got to do what you have to do.
I was also on the phone with our IL state Senators office asst . She was NOT very helpful as she has been in the past with Elizabeth's needs. She said to save money we need to get rid of the internet . That is my only connection I have with the outside world sometimes and my brother pays for it. I pay the taxes for it on my phone bill. She said we ought to go to the library for access to the Internet. Is she nuts. Like, I am going to take Lizzy to a GERMY library every day!!!! Lizzy is on the internet EVERY day doing school work or on her sites she goes too. So.......that suggestion can "blow". The state has NOTHING in regards to help with affordable medical or the unemployment situation. I had emailed her when we found our Paul was cut off unemployment. She just now got back to me. My husband has applied for OVER 200 jobs since last March. He is in school full time. He is hoping to get some jobs mowing or odd jobs but he has only 5 weeks left unemployment as of now I guess. He will not be out of school until October. I am hoping something pops up soon. Christen has applied for jobs but because of Elizabeth's appts she can not get hired any where. Lizzy has two days a week every week she has appts and every other week three appts. a week .Elizabeth NEEDS these appts and it is not a good idea to travel with her ALONE.
The hospital here did call today ( out of the blue) and told us the sisters can help us with medical if we are eligible. Is that good news or what? . That is a relief. Just need last years income tax return to see if we qualify. No problem. I did not even inquire about it. I guess the doctors office requested help with Paul's insulin a year a ago. The lady on the phone said she just found the paper work on it and apologized. So, hopefully him and I both can get medical help at a lower rate. Yoo hoo. Things seem to be looking up for Paul and I just maybe. I told you it would all work out some how some way. I have Faith and Hope . Those two things get me through and Lizzy of coarse.
Lizzy had Easter Seals appt today . She had swim therapy!! ( The crowd roars) FINALLY!!! Its been over a year. It went really well. She also got these really cool pink and purple hand splints that were ordered when she got the eval done. We are pleased. Elizabeth actually wore them 3 hours with out any complaints!!
We are planning to go to Center for Courageous Kids here next week on Friday. We did not think we could afford it but we are packing a lunch on the way there and Christen was able to get the money to go. Lizzy needs to go . She has not been out much and been stuck in for months so we are going. Looking forward to going and seeing many of our friends!!
It was good to get out this week a bit and get some things taken care of Lizzy needs. If you do not have a proper fitting TLSO then getting in the power chair is very hard for Elizabeth.
Our Prayer list seems to keep growing. Hannah is home but we are keeping her in our prayers. We heard that Stella and Karah are in the hospital. We have not heard from Drew's grandma to see how he is doing. He has been in our prayers also.
Hope you have a great week.
"We believe in miracles because we live with one."
www.our-sma-angels.com/elizabeth
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