Sewing, Juicing and a few of MY tips- Living with Spinal Muscular Atrophy

I have been so busy. I got a new sewing machine from my Dad and Stepmother for Christmas and I have been making pillows like crazy. I have NOT sewed since I was a teenager. It all come back though. Lizzy lays right there on the dining room table with me as I sew. She talks to me the whole time.

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!

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

Living with Spinal Muscular Atrophy - Reminiscing on the Year and First Quick tip

It was December 23 I  just had gotten done with Lizzy's bath and I was holding her on the toilet and the phone ran. Twice, in a row. UGH.... so I see by the caller ID it was my mom.  Lizzy was not wanting to get off the pot. So, I missed the calls. I called back as soon as a could and no answer. There was no message  on the voice mail. Hmmm well they must of ventured off some where like Wal-mart. I continued to call several times and still  no answer. That was in the morning.  I figured they would call when they got back.Well, at around 3:00 pm I get a call  from St. Joes  ( hospital 30 miles away) and it was the social worker at the hospital telling me that my step father needed a ride home and my mom had had some heart problems and was admitted. I am like "Huh, excuse me.. what is going on?" I am home alone with Lizzy with no one here as most of the time. No car, no way to leave and a emergency.... No friends to call that live close, What to do? Oh my gosh waves of guilt hit me for not answering the phone and then complete worry fills my every emotion. I said . Okay, after a few seconds of pause...I was ready to think clearly. I said "My four daughters are all out in that area shopping today one of them will stop by and get him and see what is going on. My mother had suffered a heart attack . They transferred her  to a hospital 30 miles from her after the nurse that takes are of her wound on her leg called 911 because her heart rate was 154 and climbing. She had suffered a heart ache. My world has not been the same since Dec23rd.
The good news is that she is coming home tomorrow!! Thank you for all the prayers

2010 was a good year in all respects. A few enlightening experiences I encountered. A few things happened that were not things I would like to repeat. I learned also that Elizabeth is getting older in her thinking and has a opinion on almost everything.  Just love her so much. She is my heart as I have said many times.  All my grandkids I love so much but Lizzy lives with me and I care for her 24/7/ One of hardest things I guess was the that we heard the a little girl that lived not far away earned her wings. That one hurt bad and still does. I have kind of pulled away a bit from meeting new families online. I feel bad about that but I think it was a subconscious thing since that that little girl passed.  Also , my husband not finding work and his health getting worse has also not been good things.  He had a low sugar of 15 and we had to call  911 in the Spring. Then,  my mom having her heart attack that was also something that really hit me hard with no siblings close to help me with her. They live out of the country or out of the state. My sister Rita has been my sounding board these last few weeks over the phone.
We lived, loved and survived yet another year . We had some great trips with friends in 2010 and made some great bonds that will last forever.
We had a wonderful Christmas this year. Its was a good time even though I spent hours the 25th at the hospital with my mom with Dawn and Caitlyn.

My tip for parents:  I use Mary Kay lip mask on Lizzy's lips during her bath and use Mary Kay lip balm on Lizzy every day. Its gets the lip goobies off  from the bipap and the winter dryness from the cold. I do not sell Mary Kay it just works well.  I also put a few drops of baby oil gel in her bath water.

I will have many more to add . I will add a new tip on each post. I will add care info on the next post.


Have a Healthy Happy New Year!!

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