Lizzy is doing great. I have been juicing her organic spinach and Granny Smith apples and she actually is stronger than she has been in awhile. Still using donor breast milk besides herTolerex cocktail. I make her diet as alkaline as I can.
We ventured out yesterday to Easter Seals and Hobby Lobby. I got some 90% off Christmas ornaments and some material that was on sale. I got to get busy making my bows and making pillows to raise money for our October 2011 visit to Stanford.
I want to talk about helping get out mucus plugs. Lizzy has been a plugger since she was an infant. I have learned so much from her. She used to get them stuck in the top lobe of her lung. Getting an IPV machine helps keeps the plugs from being so frequent but I have learned to turn her upside down and cough her or at an angle, to use a saline neb treatment to loosen it up , suction the nose out and cough and cough and cough until you get it. She tells me what she needs. So, coming from a child that suffers with SMA that must be what works for her. These plugs can be very scaring sometimes and life threatening is some cases.
I also want to talk about how you should always be stretching fingers, legs and doing mouth exercises to keep what muscles they do have working well. I still sit and hold Lizzy and stretch her fingers,legs and mouth while watching tv. Teeth Brushing is a MUST. I had a parent once tell me that they did not brush her son's teeth because he did not eat by mouth. They still need their mouths brushed 3 times a day and use toothettes in between.
Oh and I hope you are all using D3 helps so much in the winter to keep you healthy!
Oh and I hope you are all using D3 helps so much in the winter to keep you healthy!
Okay these are my tips for today!! Just things I do to help Lizzy I wanted to share.
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
4 comments:
Thanks for the reminders! I do remember the leg stretches, but needed to be reminded about the fingers. Also, we've only been brushing a couple times a day. I'll make a resolution to do better!
Amanda had her first oral therapy today! a specialist came to show us how to do it and will keep comming until we are ready to do it ourselves...
Hugs to Lizzy!!
hello my name is megan i am 23 years old i just celebrated my birthday and the new year finding out that my 3 month old daughter savannah has sma type 1 and has had this since birth but was ignored by doctors until it was almost too late. i have been feeling hopeless in researching and viewing more information on this until i came across yours and lizzys page! i was just curious if there were any way you could give me a clue as to what we are in for, as to me being so very uneducated on this. i feel so desperate at this point to do anything and try to get as much information to help save my daughters life as i can that i am leaving my phone number...573~561~6392 I am currently in ofallon illinois and traveling everyday to st louis childrens hospital. from spending many nights there and listening to the doctors tell me there is no hope....then i found this page and saw lizzy....if you can not call i completely understand....but you and lizzy have already helped more than you will ever know....
Megan_ I just read this I will call you tomorrow. My Mom has been in the hospital and Lizzy has not been feeling well this week end.
Good job Barb!! Miss you guys!! hope Drew is doing well
Marcela- Good for you and hugs to you all!!
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