Count down to the big Birthday- Living with Spinal Muscular Atrophy Type 1

The sky has been gray last few days. Its been cooler at night. The leaves are turning to a brilliant gold color. Fall..... is upon us. It used to be my favorite time of year. Sweat shirt weather. Now,  sadly thinking to myself it means the Flu season is upon us.
Lizzy has been pretty well all summer. She had a sinus infection last week and last few days she has been really tired. I pray she is not getting sick.
Sept.26
Spoke too soon my sweet girl is not feeling well at all. She has been on bipap since Thursday night. Her teeth are so swollen where her permanent teeth are coming in.  No fever just pain. My poor sweet girl. It hurts me to see her like this. These are her permanent teeth. I have never remember this happening to my kids. I just feel like I could throw up I am so upset about her not feeling well. Its not her lungs but she thinks bipap makes her feel better.
Sept. 27
I have not had time to finish my updates. Lizzy is doing a lot better today! Thank the dear lord.
She will be eight years old on Thursday!! Eight years . Our princess will be eight years old.
Its been a learning experience,Lifes values have changed for me and I feel closer to divine interventions and at times feel I am being guided be divine intervention to make the right choices when it comes to Lizzy.
Its like all that important anymore is keeping Lizzy healthy, do everything I can to help their families, my family and those friends that I am close to. I used to be so more involved in other things in my life. I value things much more. I am a crazy recycler. I even recycle old buttons and make hair barrettes besides on my bows. Its like I want some of the past remembered in my future.

Thank you that all help us get where we are and helped us with get Lizzy to this huge milestone. The Big #8 birthday.
Keep Lizzy in your prayers!!

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

www.our-sma-angels.com/elizabeth

Where does time go and remembering - Living with Spinal Muscular Atrophy

9-12-2011

Good grief its almost the middle of September. Where has the time gone?

I think this summer was the hottest more stressful summer I ever been through... EVER!!  Now, its early fall and things have calmed down a bit but the summer has escaped from us very quickly. Lizzy was not out side a whole lot because it was so darn hot. My kitchen air conditioner died. Not, a good thing in this hot weather . I welcomed a few cool days but, unfortunately its back up to the high 80s here.When its hot I have a hard time too!!

My sister Rita  was home for the first time in 5 years. It was so very great to see her ! I got to share some of my stress with her.  She looks great. Me..... I have gained so much weight its pathetic. I have no time to exercise but  I have been thinking while Lizzy's teacher is here I might start a exercise routine  when she comes twice a week. I need  SELF DISCIPLINE!! Lizzy has a routine and  I do now NEED one too,  for me!! I have a bad habit of not sleeping and eating very late. Bad......... Wish things were better because I would join weight watchers in a heart beat if I could. I would feel so much better if I could  lose 20 pounds. I need to badly. Maybe soon I hope.
Lizzy has her first sinus infection of the season. She is doing very well today. I hate it when she is sick. Keep her in your prayers.

 Paul is healing well and in therapy. Mom is doing much better and her health is improving. They found a mass in her pancreas which we are waiting the results . I am hoping she is okay. She is FINALLY being medicated for her mental issues. Its going to be great to make she sure she is doing well. Maybe some peace now for all of us!! Love it when good things happening!!

My thoughts were pulled back to 9-11-01 yesterday and basically all week-end. I felt  the pain in my heart 10 years ago. I  felt at the time I  had  been personally violated and I know so many felt just like me even though I knew no one that had lost their lives that terrible day. How could one man of caused so much murder and suffering?The biggest mass murder in US history. I felt all those feelings all over but then I also felt some feeling of hope after seeing the memorial site of that tragic day . I felt a peace and a calming when seeing it on TV on Sunday.It felt like a healing to my heart.

Lizzy will be 8 years old on September 29th.. Can you believe it? My goodness. She is such a beautiful ,interesting, fun , intelligent,courageous, charismatic, sociable,talkative, sweet child. I love her so much and for being in my life. She has taught me many of life's lessons. She taught me to live each day . She has picked a tea party birthday theme. She had a tea party at the hospital a few times in Madison when she was there in April and is so much into that kind of thing.. She wants her friends to join her in her birthday tea party. We were suppose to go to Minnesota with our dear friends for Lizzy's birthday but because of health issues of my mother and my dear friend's mother it was a mutual decision to hold off until spring or next summer. It upset Lizzy not to go but she is old enough to understand. why this was not a good time. So, Christen has taken it upon herself to make up for not going to see our friends in Minnesota by having a huge party for her with all Lizzy's girl friends dressed up in their finest attire for her" tea party birthday."

So, much has been going on this summer. Never a dull moment. Last week we had a bad storm and lost internet access for 5 days and Elizabeth was so upset!! Thank goodness it was only the modem to our internet and easily replaced. too bad it was 5 days after I figured out was wrong for the phone company to come by double check what was wrong.
You know we have gotten through these bad times and we are stronger for it. Prayers and good friends have help us get through this. That is why we believe in miracles. Thank you again to my friends for helping us through this tough time in our lives!!
My quote for this past summer and all the out of the norm things that happened.
"All the waters in the ocean could never sink a ship unless its get inside, likewise all the pressure of life can never hurt you, unless you let it in."


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