Rainy 4th (spinal muscular atrophy type 1)

Happy 4th of July. Its a rainy wet day out there today so our planned activities for the week-end have changed dramatically.

Elizabeth has decided in the mornings this past week she does NOT need to get out of bed according to the schedule I have taken 3 years to get "perfected" according to her needs. She is a "little rebel" this week. She has me take the bipap off soon as she wakes up then... she lays in bed watching TV, doing activities on her PC or using her nintendo ds. I have added more food and kept her running until she decides she is "Ready to get up" so, we didn't mess that up. Well, as of this morning I realized how this messes up my daily activities and I told her as of today we are going back to "Nina's schedule". She made some comments under on her breath " You are so mean and my Mommy will let me stay in bed " any way I found out life works better for us to be on schedule. Once in while a lazy day but.... we aren't making a habit of it. God love her for her spunk.

My thoughts:

I know I have repeated myself several times about a Type 1s care. Please if you are newly diagnosed with any type of SMA find other parents of older kids that their kids are doing well to help you. You need to find a good NIV doctor ASAP. SMAspace( just put it in search) is a good place to start, The SMA support guest book and FSMA web-site. There are many places on the web that you can find lots of info about NIV-SMA Type 1 Protocol. My preference is DR.Schroth in my opinion. She is the best SMA Pulmo Doc in the world. If you want to save your child then you need to think about g-tube/nissen surgery while they are still strong. Info on this is on Elizabeth web-site: http://www.our-sma-angels.com/elizabeth/gtube_nissen_opinions.htm Many parents opinions and a few docs. Your child can loose their swallow very easily and quickly.
If your doctor gives you "no hope "and does not want to help you with your child's care and you want to save your child you need to find another doctor right away. I totally understand that we have been programmed at a very young age that "OUR doctors know best". Well, with SMA this is not always the case. If you want to save your child you really need to find a doctor that supports the NIV protocol and the proper care of a baby with Spinal Muscular Atrophy( I hear good things about DR.Brenda Wong in Ohio ). It is not an easy job but these kids are just so special they need you to fight for them to get what they need. They are very smart kids. Elizabeth is such a neat kid and knows just everything. She pays attention well. The first couple of years is the hardest but it get easier as you and your child get things figured out. If they are very sick or during G-tube surgery they can be intubated and be put right on bipap after they are extubated. They should never go just on room air with out a bipap after extubation. In a few cases of kids I know after they have been on NIV protocol they become bipap dependant after a serious illness and have to be trached. That is not all cases that is a few of the kids we know. But....please try the NIV protocol first. Its your choice though.

If you are breast feeding you can also use breast milk in the g-tube. Keep Pumping as long as you can. There are a few infant amino acid formula if you are unable to breast feed. Tolerex and Vivonex are the best for kids over a year in my opinion and you can still add breast milk in the mixture but please get with an older family to learn to mix the formula as with SMA kids its needs to be double diluted. Okay, I do not have a PHD behind my name but I have been in touch with 100s of families world wide and have have helped many. The difference in these kids is unbelievable after they start the AA diet.
Please! Please! if you decide to do these things do it every day and pay attention to your kids. I believe that a baby with SMA Type 1 needs a pulse ox on 24/7 and bipap at night, a cough asst, suction machine and please treatments at least twice a day. Its being proactive that keeps these kids strong. You never know if they will have a problem. Then, after you get the equipment USE it dont leave it in the closest or you could lose your baby.

Keep their facial muscles stimulated also besides learn to do stretches for a PT and OT.

Okay, I am done ranting. I just had to say these things today. Its been bothering me for a few weeks now.

Happy 4th of July !!!!
Many prayers for Jerika who just had spinal surgery at UW.
Many prayers for Lauren's uncle, kids in the hospital , sick kids , My good friend Mary and her family and us to get to Stanford on our "Road Trip" safely.

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

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

Lizzy in the news

Elizabeth is beating the odds
By Peg Reynolds, Staff ReporterPublished: Friday, August 15, 2008 1:28 PM CDT
Pontiac Fire Department will “Fill the Boot” again this weekend to help Jerry’s Kids who are afflicted with muscular dystrophy. The firemen will be accepting donations between 10 a.m. and 1 p.m. Saturday at Pontiac Wal-Mart and Sunday at Big R. With the firemen is Elizabeth Hallam, of Pontiac, the Goodwill Ambassador for the MDA for Central Illinois. She suffers from spinal muscular atrophy type 1. Firemen from left are Scott Runyon, Todd Gould, Andy Vitzthum and Jace Weaver. (Photo provided)
There is a 4 1/2-year-old Pontiac girl who is surpassing a doctor’s prognosis of not celebrating her second birthday.Elizabeth Lee Hallam, born Sept. 29, 2003, was diagnosed with SMA (spinal muscular atrophy) type 1 on May 11, 2004. Her parents, Christen Huette and Brandon Hallam, learned that this was the number one genetic killer of children under the age of two.SMA is a group of inherited and sometimes fatal diseases that destroys the nerves controlling voluntary movement. This affects crawling, walking, head and neck control and even swallowing.

Two months after Elizabeth was diagnosed, she was placed in a clinical study at Stanford, Calif. The study is funded by MDA, but the cost of the trip, their lodging and Elizabeth’s medication, which costs between $200 and $300 a month, are not. The mother and daughter must travel to the California hospital every four months for follow-ups.“It’s hard to get the money, but we do it for Lizzy,” Huette said.They discovered early in the study that Elizabeth was not on a placebo, but was taking the medication hydrozyurea, which was developed by Dr. Ching Wang.
“Her movement increased after taking the medication for two weeks,” said her mother. “When she was first diagnosed, she didn’t move the bottom part of her body at all. She was moving her legs, starting to bend her legs while laying flat on the floor, and she looked like she had more energy.”Elizabeth started to lose her ability to swallow after a case of strep throat soon after their first trip to Stanford.“She got really ill and would gag when eating or refused to eat at all. Our doctor's nurse told me, ‘There is nothing more doctor can do for Elizabeth.’ Their opinions have since changed because of how well Elizabeth has been doing for the past three years.”
A nissen/g-tube saved Elizabeth's life, her mother said. A swallow study had showed Elizabeth was silently aspirating on liquids.Elizabeth requires around-the-clock care, which is shared between family members. She has physical therapy once a weekHuette said she owns a van, but it does not have a wheelchair lift. A ramp was built at their Pontiac home by RAMP. She is inquiring into a home school video conferencing live feed, which is funded by a foundation. Her daughter can not mix daily with other school-age children, as a simple illness would land Elizabeth in the hospital for two weeks, or worse.


Huette said her parents, Herb and Jeanne Huette, have helped her and Elizabeth through their trials, as have the other members of the family.Huette also praises the efforts of Senator Barack Obama and State Sen. Dan Rutherford, R-Chenoa, who have both come to her rescue when she battles “red tape.” “I have them both on speed-dial,” she said.The Pontiac Fire Department is another group that is helping Elizabeth fight her battle. They will conduct their second and third “Fill the Boot Drive” this weekend. On Saturday they will be at Wal-Mart from 10 a.m. to 1 p.m. Sunday’s collections will be at Big R from 10 a.m. to 1 p.m. Monetary donations collected for the MDA drive will stay in this area, a press release said.