Finally, all is better here . Man, the virus that hit us was brutal. The incubation period is the quickest I ever did seen. With in 24 hours in contact you are the" Porcelain queen/king" at both ends with intense cramping. Christen and Brandon both had it also. All is calm and disinfected. I am finally rested. I am a week behind EVERYTHING!!. I am always behind it seems chasing my tail..
Lizzy is almost back on regular feeding rate and her regular diet and doing well. The funny thing is she does not look like she has lost any weight. Besides the "Bipap Bite" on her nose she looks good. She was only getting 8 ounces breast milk, organic bananas, pedilite, water, tolerex and I added in her supplements on Thursday . Now the only thing she is not getting is green beans. She had NEVER had the stomach flu EVER. till now. I know exactly what to do now. I was very concerned when Lizzy had gotten ill . I did good. Lizzy is a "Champ" my "HERO" She tells her Dad the other night " Dad I will be okay... I have a g-tube I will just puke up it there and I will be okay" Where did that come from. Is she smart or one or what?. She pays attention well.
Breast milk Donor Moms- if you read this PLEASE if you have extra there is a baby in Florida totally out and NEEDS breast milk immediately she has a post on milk share and her name is Melissa. Email me and I will give you her info.
I guess Lizzy is set up for a sorta sleep study first week in June in Madison. DR.Schroth is not on call that week but will be around. I just want to do it here now. If its just observing her while on bipap what is the big deal? I am possibly going to see if can get one of the bigger hospital.in the area as much as we do not want to do that but.... this has to be done to get the Trilogy. Does not hurt to try.
I just heard something very alarming..... There is a newly diagnosed that is consulting with one of the SMA specialists (Not a Pulmo) and the parents were told "NOT to USE THE AA because the child is too WEAK" WHAT THE HECK? Okay, I am totally confused here.......how could a child be too weak to use a the AA diet. A diet that helps these kids get stronger, help their secretions and help their respiratory. Make no sense to me what so ever. I guess animal proteins are easier for them to digest....... NOT!! I MEAN THEIR LIVER/KIDNEYS CAN HANDLE dairy BETTER than AA????? NOT!! I have been in this world almost 7 years and NEVER heard such a thing. ( Shaking my head).
I would like to add some thoughts here. If you have a child with this disease (SMA Type1) you have to quit thinking they are going to die every day if you are doing everything you can to help them. For your own sanity and theirs. I mean were they born with an expiration date? NO THEY were not. The MDA recently a few years ago changed the life expectancy to 4 . So, that has changed. You need to realize what a precious gift you have and ENJOY them. They are such smart kids and they pick up on your fears of them dying.You need to give them the best possible care you can, Treat them like they are normal with extra care.Waiting for them to die is no way to live. For you or them. Who do you feel sorry for them or yourself? GET OVER IT and GO On PEOPLE!!! Lizzy will be 7 years old in a few months and we were told she would not live past a year old in the beginning. ( I JUST HAD TO SAY THAT...sorry if I offended any one.), These are my thoughts on the issue. We are all going to die someday.
Just enjoy your kids.
Okay, I had more to say on the subject but I will end for now!!
" We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth
2 comments:
Hi Nina, I'm glad you are all feeling better. I am also so glad that SMA families have each other. SMA is so devastating but the truth is many people are largely unaware and there are docs out there that are not up on what's best for SMA kids. They try to change and modify what's working and let's face it many docs do not listen to patients or parents and can do much more harm than good. Keep up the good work by keeping in touch and God bless your family and all families dealing with SMA
Laurie
Laurie that seems to be a big problem. That is why there is now a care protocol for SMA which two of Elizabeth's specialists are on the board for the committee among specialists world wide. DR. Ching Wang is the chair (Stanford) and DR.Mary Schroth( UW Madison.WI) that are the two doctors that are Elizabeth's doctors on committee. This has been in place for a few years now. All a doctor has to do is access it or call one of the specialists on the committee.
Then, you hear crazy things that a few of the doctors that know SMA say about the AA diet. There are AA diet formulas for infants like Neocate, Elecare that are not best in some cases but are made for infants that are better than a dairy based formula if the infant can not get breast milk.
Elizabeth is on the AA diet enhanced with donor breast milk.
The problem is that many of the doctors that have been around awhile across the US refuse to even look at the care protocol and give these babies a death sentence as soon as they are diagnosed. We have all been taught early in life to listen to our doctors they know best. Its hard going against what your doctor (that you trust) and research. I helped families all over the world with the experience I have learned in almost 7 years. Next month will 7 years ago Elizabeth was diagnosed. I will be sending the neurologist that diagnosed Elizabeth a update on her. He still tells parents the same thing he told us.
I can tell parents the documents I have and send them the info but...... They have to implement it.
Many people choose palliative route and that is their choice.What I get upset about is the ones that have all the resources say they are such advocates for these children then whine all the time about their child is going to die and whine about how much it takes to care for these kids. Its takes inner strength to do what we do and the rewards are so rewarding. Yes, our life is not easy but we do what we have to do. I will admit the older Elizabeth gets the easier it becomes.
Yes, she does talk but when she was diagnosed we were told the she was a typical Type 1 and probably would not make it past age 1 and the longest 2. She is stronger today because of the
interventions we have done. You do what you have to do for your own.
We did not choose this life we have. We were chosen.
You can contact: Hope and Light Foundation out of Georgia, Miracle for Madison out of Ohio, Sophia's Cure out of New York, Families of
SMA ( Colleen O'Toole),SMA Support out of Indiana, SMA Angels, Paytons Pals, SMA Space or other SMA organizations that will help you get the info you need. So, there are lots of resources available you just need to do the homework yourself.
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