Its May and the signs are finally showing up for spring.
The carnival was here last week-end and Lizzy would not stop asking to go. So, Christen and Jessica took her to the Carnival that was a block a way from the house. Christen took GermX and wipes and was very care-ful with her. Lizzy was only there for 45 minutes but she had so much fun and was so excited.
We have been very busy all this week. We have been babysitting Lexy as usual and now Corbyn.
Lizzy has a zoo visit for MAW in Peoria coming up here soon. I hope we can go this year last year it was too hot for her to go.
I got a call from the trial coordinator at Stanford on Friday last week and she said she is leaving to go to medical school. We will miss her!! She told DR.Wang we plan on coming back out there soon. Yeah, soon as the figure what how bad this flu is. Not chancing taking Lizzy on a plane right now. The man needs to get published!! His data is so important and so is the HU study for the SMA research. So, many kids could do so well if he would get that published and let his heating procedure out there!! He was such a great guy to us when we thought there was no hope for Lizzy. He gave us hope. Lizzy was his "Star patient" for a few years. I can not wait for him to see her at the conference. She looks better than ever and is stronger than ever.
Well, my husband still has not found work yet. We have looked and put his resumes all over the country. Thank goodness we have not spent any extra money because the income tax return went to pay for annual insurances. Any one know of a any Maintance mechanis job email me!!!!!
We are getting along.... just barely. I am hoping to get my arm well and then I am going to get a job. I still do not know what is going on with it. We have no insurance now and it looks like Paul and I will not have any in the near future unless he gets a job. My arm has been hurting since around March 10th. I had gotten a steriod shot but... it did not help my arm. Its feels like a piece of ice in bad tooth then just throbs all the time. I have been tring to stretch it every day but I think its better then it gets bad again. UGH....
I just thought I would add this info just for FYI. There are many new Diagnosed babies out there and they are diagnosing very early now because of the Genetic testing available now.
Lizzy is a very strong Type 1 and I believe she does so well because of all the interventions we do to keep her as strong as she is.
Types of SMA
There are several types of SMA, which are distinguished by when symptoms begin to show. Typically, the earlier symptoms manifest, the more severe the disease, and ultimately the greater the mortality rate. Following is a brief overview of the various types or classifications of SMA:
Type I SMA: Also known as Werdnig-Hoffmann Disease or Infantile SMA, Type I SMA is the most severe. Children with Type I tend to be weak and lack motor development, rendering movement difficult. Children afflicted with Type I cannot sit unaided and have trouble breathing, sucking and swallowing. Usually, symptoms begin to show between birth and six months.
Type II SMA: Slightly less severe than Type I, Type II patients may be able to sit unaided or even stand with support, and usually do not suffer from feeding and swallowing difficulties. However, they are at increased risk for complications from respiratory infections. Symptoms tend to show between seven and 18 months old.
Type III SMA: Also known as Kugelberg-Welander Disease, this is the least deadly form of childhood-onset SMA. Although Type III patients are able to stand, weakness is prevalent and patients tend to require the use of a wheelchair. Usually, symptoms begin to show after the age of 18 months, and can even surface in adulthood.
Type IV SMA: Symptoms usually begin in the hands, feet and tongue, and spread to other areas of the body. This is the adult form of the disease. Symptoms tend to begin after age 35.
Adult Onset X-Linked SMA: Also known as Kennedy's Syndrome or Bulbo-Spinal Muscular Atrophy, this type occurs only in men. Facial and tongue muscles are noticeably affected. In addition, these men also often have breast enlargement known as gynecomastia. Like all forms of SMA, the course of the disease is variable, but in general tends to progress slowly.
Prayers for all the sick kids , Newly diagnosed families and all the people out of work.
we believe in miracles because we live with one. Her name is Elizabeth.
www.our-sma-angels.com/elizabeth
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