Living with Spinal Muscular Atrophy - Finding ways to help your child

I decided  that in 2011 I am going to focus on helping families find ways to care for their SMA type 1s babies and children. Besides taking (as usual) the best possible care of Elizabeth.  I want to add to my blog about the care that it takes to keep a child with SMA type 1 healthy.  These are my opinions only .

Finding a "Cure" would be a dream come true but in reality many babies and children are dying because families are unaware of ways to help their baby that were just diagnosed. That is what many organizations are doing funding,  research for a cure. We all want a cure but how about these kids that can not even get a bipap or parents are not told there are noninvasive ways to save your child, The letters I receive from parents, aunts and uncles hurt my heart knowing how these parents struggle to get what they need to help these babies/children survive. .We need to take care of the kids that are here and are living NOW!!. Many doctors nation wide do not think parents have what it takes to do the care that is needed on a daily basis. In fact, many parents and caregivers do have the" inner strength" that it takes to take care of these beautiful children. The doctors give up on many of these kids right after diagnosis. They do not research and do not know there are doctors out there like DR.Mary Schroth in Madison,WI at American Family Children's hospital. Many parents believe in their doctors and their opinions and do not research SMA. We are taught at a very early age to trust our doctors and not question them . These kids can live with proper respiratory care . That is the main thing right have diagnosis. A bipap, humidifier and pulse ox can help them get stronger.  Then,  to be proactive in their care. Not to give in and take the bipap off because the baby is crying. You have to remember you are saving their lives. Parents have to face also their child will need a g-tube very soon after diagnosis . A  type 1 starts losing their swallow very early. Many of us also incorporate many other therapies and a special diet in the daily routine. If you want to fight to save your child's life there are ways to do so.

So, word of warning here " I am out to help save as many babies and children as I can by giving the most vital info to help these kids stay healthy ". Stay tune in 2011.

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Living with Spinal Muscular Atrophy - Loving the Season

Anticipation for the upcoming first school event Christmas party consumed Lizzy's ever thought the last few days.
Today, she went to the  Rotary Club's Christmas party at the Elks. The kids started coming in the room and Lizzy's eyes where huge as she could not believe she was actually taking part in this grand event where there was so many other kids. It was a party for "Special Kids" and they all were treated very special. The teachers all knew we "freak" around other kids and worry about her coming down with an illness. So, they did their part in keeping the other kids from hovering over her." Sigh of relief",  for Christen , Lizzy and I.
We sang some Christmas songs, ate Lizzy's "favorite lunch" Chicken tenders and french fries. Then, something quite magical happened there was a man in a red suit and his wife that made a "Grand" entrance and seated themselves down. The crowd all was so excited. The looks on the kid's faces were totally priceless. Each child's name was called and Santa gave them a gift on his lap. Lizzy included. Each child got a present they really wanted. I have to hand it to the Rotary Club they did a great job on the gifts. Not a sad look on a child's face and there was quite few kids there .Lizzy broke out in her "Red Blotches" because she was so excited.

This time if year is totally magical and full of a spiritual awareness and the season of love. Family and friends are so special that gives you a sense of inner peace. The newest snow left a sparkling blanket of seasonal magic to the whole neighborhood.
I have been baking up a storm . With the last winter blast we had this old drafty house flatten a batched of yeast dough  when I was making my coffee cakes. It was upsetting but that is typical for baking in the winter. I have a lot of baking to do as presents. With Paul's unemployment being cut off we need to save as much as we can this year. Not knowing how we are going to survive these upcoming months has consumed my waking thoughts these last few days. We just found out on WED that his unemployment extensions have run out. In the job world they call for phone interviews but that is as far as it goes. His diabetes has gotten worse also. He has very low sugar spells and we do not know what is going on. So,  he is disoriented and he turns gray. I pray we figure this out. He has a doctors appt with Lisa this next week the nurse practioner.   Please keep him in your prayers. Enough said about that. Its a time of the years we should be happy and not worry. I know easier said but I believe God will look out for us.
Prayers for Charlie. Charlie is sick!! Please add him to your prayer list!! He has never been sick like this at home before.
Many prayers for our friend Madison. Lizzy loves Madison and she has not been feeling well for a few months now. We love you Madison and have you in our prayers EVERY night. Our friend Kaitlyn in Canada has not been feeling well either for awhile so add her prayers also she has been in ours every night also.

Some of our good friends have made sure we will have a good Christmas this year and to have something like that to look forward makes you as" giddy" as a child. We have family too and that makes Christmas even more special. Lizzy is our Miracle and makes the season even more better, Corbyn makes it fun also. I am thankful for all my kids, grandkids , my siblings , parents , Mother inlaw and just everyone that in my life. I will miss my brother Rory this year as he will be in Kuwait this year and not in the states.

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

Snow Snow Snow!! Living with Spinal Muscular Atrophy

Lizzy is loving this snow!! She had a blast outside on Saturday. Until she went out in it she was asking all day to go out. She was concerned she did not match!! LOL Our Fashion conscious 7 year old.
She was yelling at her Mom saying" Faster Faster!". She was so excited. Then, when she came in she had been so excited and with the cold she was having some trouble talking. Extra coughs and she was perfectly fine.
She is so excited this year about Christmas she started singing Christmas carols shortly after Thanksgiving.

Lizzy has a teacher coming to the house twice a week now and is loving it. The school provided her with the clicker 5 program also today. She is so excited to have a teacher! All day before her teacher comes Lizzy is so hyper!!We really likes her teacher Becky. I actually have a baby monitor set up and I am in the next room. Shocked that I leave her side? I am. I did not think I could do that but I have. It was my decision .  So, far Lizzy lets me know if she has "bubbles". I never thought that day would come but it has.

Paul and my anniversary was yesterday. Thirty six years married to the same man. What is really sad is that he was gone all day helping Brandon do some things. I guess the older you get in the male mind sometimes its no big deal. I dropped a few tears here and there all day yesterday.  I was glad I didn't have to watch football but why was he not spending the day with me?  Too me it means a "Big deal". I have been through a lot with this man and I think celebrating is something we should of done. We used to take off and go shopping for 3 days and stay at a motel. I understand we do not have the money for that these days but to go some where would of been great. Its over with done. Time to go on to the new day. Thinking positive is something I try real hard at. Some days its harder than others. Is this instance in my life an "Eye Opener"? or is it just life as you grow old together? Hmmmm... That one will take some time to figure out. Yeah I know, "STAY POSITIVE" okay I will try

Its is bitter cold here right now!! Last year it was a cold here all winter. At least Lizzy got to go out at least once this year. I miss CA this time of year.

Elizabeth is doing quite well the older she gets. Her strength is quite remarkable.  I am so thankful she is doing so well. Patience is one thing she has none of though. Everything has to be right this second!! .

I love Christmas and that warm fuzzy feeling you get this time of year. You really are thankful for the friends and family you have.
Many Hugs and Happy Holidays!!

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