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