MDA appointment, faster Chair, zoo and Stalker Peacock ( Spinal Muscular Atrophy)

Oh, my goodness I actually have a few minutes to update.
It has been a busy last few weeks. We have also had Corbyn and Lexy here this week. I hope I dont forget anything!!

We went to a MDA " Meet and Greet" a week ago Thursday there we met some new people and saw Cindy a favorite lady of ours since we met her last year at the telethon. It was interesting. I talked to Cindy's husband about some power chair issues that have not been resolved in Lizzy chair in almost 3 years. He put some fire under my hiney to get something done with the speeds on Lizzy's power chair just from listening to him. I went home and emailed a few people from Permobil since our vendor here was not able to get the problem taken care of. It worked!! I got a few emails from the company the next day and one from Richard from Chicago. He was going to fix Lizzy's chair the very next day when he got back but we told him we could wait till Thursday. He was out of the country till last Sunday. He is a great guy!! I wish there were more "Richards" out there. He is so full of info and guidance. We need him here!!

We went to MDA appt this past Tuesday in Peoria. They were very excited Lizzy is doing great. Angie the nurse(Lizzy's favorite) said Lizzy was her birthday present. Dave the OT said Lizzy's left arm contracture is so much better. I picked Dave's and the MDA PTs brains on ideas on how to help Lizzy more at home. I do things that I know but I think with her age now I need to know more. They showed me. Dave is going to make a hand splint for Lizzy's hands to sleep in so she gets more range.
We have no Local OT and PT right now. We will be seeing a local PT here soon as she has an opening . We have to pay out of pocket for PT here that since she does not take Lizzy's insurance. As, you know our old PT stop seeing Lizzy before she quit and the director never replaced the OT that quit last summer. So, our hospital there had no Peds OT or PT. Still no gel pads in from National Seating for the arms of Lizzy's chair. We do not another appt for 9 months instead of 6.

Thursday, life as Lizzy knew just got better better. We met with Richard from Permobil at Lizzy's speech appt at the hospital. He took five minutes to fix an issue that has been going on over 2 1/2 years. He speeded up her power chair so, we can actually take walks and she can run and keep up with her friends. Only problem isshe is so fast now I can not even get a picture of her because every time I try she takes off on me!! We can turn it down but to see her with so much independance it hard to do that to her. He also got a hold of National Seating to order a switch for Lizzy's chair so she can turn it off , up , down , faster or slower herself. Cool.

Friday we went to a MAW get together at The Peoria Zoo. Lizzy and Caitlyn loved it.
We had a "Stalker Peacock" that was running wild at the zoo. Every where we went it was right there. Caitlyn got really scared and almost climbed up Christen to get away from it. It was harmless but it was weird that every where we went it as right there. Lizzy was so fast she would stop for a second and take off!! I got very few pictures of her! She was the only kid there with a power chair!! All the kids thought Lizzy was "too cool"! Some of the adults thought she was "too cool" also. It was too funny. Its like they never saw a child her age in a power chair that can work it so well. She was recognized by a few from her MDA telethon segments. Lizzy is recognized in Peoria( a large city) but not in her own home town. I find that odd.
The girls had a great time. Caitlyn spent the night. Christen took her home early the next morning.
Saturday, evening I get a call from Dawn and Caitlyn Grace was running 104 fever while they were at a wedding Jeff was in!! She asks me if Caitlyn had had any issues and I said no not at all. She had a great time ate well . She played and ran like normal. Well, Dawn was on her way to the ER because Caitlyn was shaking from her fever. After, Xrays come to find out she has pneumonia!!! They gave her a antibiotic shot, an oral antibiotic and sent her home after her fever went down some. My gosh my poor Caity. I am just stunned at her being sick.. She was fine.... My gosh. At the wedding she told her Mom she was sleepy , she could feel her lungs filling up with liquid and she could not breathe. A six year old..... Go figure... She is better today and fever an hour ago was 99.

Lizzy played outside today with Papa and her Dad for a bout an hour twice.. Blaze was amazed Lizzy could keep up with him in her chair. Lexy was here today and I played with her most of the day besides cared for Lizzy.

Well, the holiday weekend has one more day left.

Please remember tomorrow those who were dear to your heart that are only here in spirit and in your heart, The many men and women thought fought wars for your freedom and the babies and children that earned their wings at a young age.

Please say some prayers for Caitlyn, Drew and all the kids that are sick.

We believe in miracles because we live with one.

www.our-sma-angels.com/elizabeth

Rainy day, IEP and new friends (Spinal Muscular Atrophy)

It been raining all day and Lizzy is having a major hissy fit because she wanted to go out-side and play with her golf clubs. She has kept me very busy today. I have not been able to jump in the shower as of yet. She is right now driving in her chair back and forth yelling at the top of her lungs because its storming outside.

We went to Chicago on Saturday and Lizzy got to meet and play with a new friend named Isabella and her brother William. She had a great time and it was great to talk to Angela their Mom.

Paul has not found a job. I have sent resumes in all over the US. He is helping with Lizzy outside so I can at least get some time to get things done. It great to have some help with her this year. He can take her out-side or on a walk around the block and she tells him when she needs suction.

We have Lexy almost every day and Christen is watching Corbyn this week at Dawn's on Monday, Wed and Friday. Never a dull movement here. Actually, it seems there is no time for anything.
Christen had Elizabeth's IEP yesterday and they compromised since the state school board will not allow Elizabeth to have Video conferencing because she will not be main streamed until she is in the 1st grade. Since, all the kids in her class have IEPS they are not allowed to video the class even though its live feed and can not be recorded. So, they agreed Lizzy should be home schooled because of the fact parents send their children to school sick and Lizzy can not be exposed. She is healthy right now and has been pretty good except for that virus in March. So, her teacher is going to video tape herself a few times a month and Lizzy will watch her on her PC. Elizabeth would start Kindergarten in The fall since her birthday is late. So, Lizzy gets to stay home and be home schooled and they are helping us. We have taught her a lot this year. Her teacher will help us on things Elizabeth is having a hard time with by video taping herself. She also gave us some computer programs that Lizzy can do on her computer online to help her learn her letters by site. She knows her ABCs but is having some issues recognizing some of her letters. She has known her colors for a few years. She can count . She is very smart but we just need some help knowing how to teach her some things.
My hair has finally grown back after the bad haircut I had to endure last month. Never again will I let my daughter Dana touch my hair again. Besides my inner being taken over by menopause I am fine what ever that means.

Many prayers for Logan's family, Garrison( In the hospital), Tabitha(Being trached on Friday), Andrea D (she has been sick )and all the sick kids or the families that have lost a loved one.

I have a feeling Lizzy is going to keep me very busy all summer. Which is a good things.

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

Here is a video our friend MJ did and you will love it.

http://www.youtube.com/watch?v=R_RSyCejlBI

Five years ago today.... (Spinal Muscular Atrophy Type1)

On May 11, 2004 we learned the cause of Lizzy’s weakness and our lives changed forever.
Spinal Muscular Atrophy, SMA. Elizabeth was diagnosed as type 1, or Werdnig- Hoffman Disease. Children diagnosed as type 1 are not expected to survive past their second birthday without extensive respiratory support and despite aggressive care it doesn’t guarantee survival, nor does survival come without complications and heartache.
Christen was told to take her daughter home and love her; she would most likely die before she turned of age one, two if lucky.
I dropped to my knees screamed as if someone pierced my heart with a hot knife. How could this be? How could a child so beautiful and full of promise be handed down a death sentence? How could we even consider just letting Elizabeth die? How could we not try to prevent the inevitable?
I knew then that I could not take this news lying down. I HAD to do something, anything. I wasn’t willing to let her go and I was not going to sit back and wait for her to die. Were these doctors crazy??
While everyone else grieved I went online and searched the internet. I was on a mission and I knew that it was up to me to save our little girl.(Reprinted from Elizabeth's Story In Jennifer Trust magazine)

I found the Stanford trial that DR. Wang had started that Lizzy was accepted into. She was put on Hydroxeurea in the drug study. The drug helped stopped the progression of Lizzy disease. Dr. Wang was so great to us during the trial. He gave us Hope.
I found many families that aided in support and proved to me that these kids can live with the right care
I think the hardest part fo me to learn was to listen to parents/caregivers of these kids more than the doctors that were unfamiliar with SMA. You have been taught since a young age that your doctors know everything and you need to listen to what they say.
We had gotten machines for Elizabeth to help her stay well on borrow from Laura Stants (SMA Support) and FSMA until Elizabeth was able to get hers.
We went to Stanford and then a few weeks later after we got back we were on our way to see DR.Mary Schroth. The best Pediatric Pulmonologist (in my opinion) in the world for kids with SMA. She taught us how to use Elizabeth's borrowed machines. DR.Schroth and her staff at U.W in Madison, WI is the best ever for kids with Type 1SMA.
No respiratory therapist that worked for our DMEs here in this area in IL would take on Elizabeth case until she was 17 months old.
DR. Hough(Our family doctor) does everything he can do to get Lizzy what she needs to help her and believed in me after we started being so agressive with Elizabeth's care He actually tells me, If it was not for me Lizzy would not be here." He is very proud of her. He does everything he can do for her and fights her insurance for the things he thinks she needs. He fought long and hard for the RSV shot but the battle was not won this past winter. He was very upset about that.

Lizzy is going to be six in September and doing great.
Her Papa actually can take her out-side now in her power chair and give her suction if she needs it. She can tell you what she needs. She plays with other kids and will now venture off across a room to interact with other children and come back for suction.
We still do not let our guard down with her but she has gotten much stronger and can tell you what she needs and when she needs it.
Her Amino Acid diet that is enhanced with donor Breast milk, her meds which is Hydroxeurea and oral Albuterol. She is one a daily respitory regiment which includes nebulizer treatments,cough machine the use of a IPV machine 2 times a day and coughs and suction as needed . She sleeps at night on bipap and if she is very sick is also on bipap. I stretch her legs and arms daily. I use massage oil and rub her down while stretching her. I do mouth exercises and do what ever it takes to keep her strong.
We need to get her a pool some how because she needs swim therapy so badly and was doing great with it. Then her PT said she would no longer see her. She has no OT and PT anymore because their are not any in the area that are willing to take her on as a patient. Hopefully, we have one that we are working on getting we have to pay out of pocket to for.
She is my heart and my life. To see what struggles she has faced and done well makes me so proud of her. She is am amazing child.
Its been a journey that has taught us so much, met several wonderful people and us made my faith stronger. She has changed my life.
Nothing is impossible if you believe in miracles.

I ask you now for prayers for another family that their brave little guy earned his wings today. His name was Logan Harman. Fly high Little Guy, fly free of disease.
I hate SMA.
www.our-sma-angels.com/elizabeth

http://www.youtube.com/watch?v=2lP5bYdmuWE New Video of Lizzy

Finally Spring! (Spinal Muscular Atrophy)

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