Friday, October 15, 2010

Sigh of disbelief and Believing in Miracles - Living with Spinal Muscular Atrophy type 1



Don't you love Lizzy's new kimono? Her Aunt Rita and Uncle Jim send her one every year for her birthday!! Hard to believe Elizabeth is seven years old!! She  did not want her picture taken so I had a hard time getting her picture above.



Its been a while since I have updated. Lizzy has been great for months. She is very much quite aware of EVERY-THING that goes on around her. She is very opinionated about EVERY thing also. If you need to know anything just ask her. I love her so very much. She is just a great kid.
 Lizzy is  now showing the first signs of a sinus infection so I have upped treatments today. Keep her in your prayers. She is okay right now but secretions galore and stuffy nose. No swim therapy today :(  first time in a long time. We just could not chance taking her out with the symptoms she is having. She was mad about missing swimming as she loves it!!
These days I have been so busy . My husband's lap top was broken (from unknown means) I do not have time to pop on the home pc to update. I can not get too far from Lizzy because she needs suctioning, moved around, help with home work or just wants me close. Which is all the time. I am not complaining its just the way things are around here. Its my life.


Reed Michael graduated today from the guard but.... with all that pride we felt was quickly replaced with  worry and concern due an accident or something that recently happened to Reed . Just look at his leg below.after the cake I bought for him that will be taken to him on Sunday. This all happened right after graduation.









 You are beaming ear to ear with pride , then a sigh of disbelief and the reality of  Reed Michael having surgery today because of an injury or  a spider bite. His leg swelled double in size and having to be drained. Have you ever just been so upset that your knees go weak and your heart just aches and you are afraid to breath? OH  MY gosh....... then you think OMG.... this is NOT A DREAM this is Reality!! This just sucks!! Poor Reed!!

The school here is not getting Lizzy a tutor. Its now almost NOVEMBER. She is learning on the computer yes. but she needs a teacher. She just  does not cooperate for me or focus on the one to one with her and I.  The Video conferencing is out according to the school. Come on people. Elizabeth is 7 years old. I have been trying to do this alone but as GREAT as I am I am not educated to be a teacher. I am educated in Sociology. Political Science and Criminal Justice. I am a great nurse to Lizzy but that is an inherited and in my genes. My great grandmother was a midwife in Canada. Teaching qualities have never been my expertise.
We have been doing ABC eggs and she is doing well but she needs more.

On a good note. I had two great things happen to me this week. My blog is on the top 30 on the SMA web-sites for 2010. That was quite an honor.People actually read my blog!! Thank you.
I also got a letter from another parent praising me for just being me. That was really nice and quite unexpected.
Lizzy's fundraiser is next week-end. Lots going on!!

I have been making hair bows and will be selling them at the fundraiser and making some for another organization.  I am also making gifts baskets of many different items to do a white elephant sale also. I have not had much time all summer to work on making bows but now in the evenings I am making some. I need to power sew to make a lot!! If I was not so darn picky I could mass produce!!

Paul has not gotten a job since he has finished school. He has applied for jobs  but NOTHING as of yet! I know patience.... He  was not born with patience!!  He is afraid its his age. The man is 56 years old.

Robby was here for his birthday Oct.3. He went golfing with Paul.  I made him a home made cake. His school colors. Hard to believe he is 13!! Oh my where has the time gone. I remember his first Harley Coat we bought him. It was size 2. Brings tears to my eyes. Life seems to fly right on by.






A baby earned his wings a few weeks ago that was diagnosed with SMA after he was hospitalized  at age 9 months in an area hospital. We live so close but feel as if we were so far away because no one called or did we know about this little one. This  hurt  us so bad that the hospital is still not doing the protocol for SMA. Send prayers to this family. I have talked to the patient care director and got no where but did sent her the respiratory protocol from DR.Schroth. What can I do to get these people to listen to me? Who can I talk to to help me with this?
An article about Elizabeth is being done soon by a local paper because of her benefit. I will again express the importance on the area doctors at least looking at the protocol. It could save a baby's life. These kids are miracles and their lives so precious.

Please add Reed Michael, Elizabeth and all the families that need prayers to your list.

"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth
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