Friday, December 30, 2011

The End of a Very Eventful Year- Living with Spinal Muscular Atrophy

Sitting here thinking about this past year I sigh and think "We got through so many situations this past year and we are still  here!" RSV, illnesses, Unemployment,  not knowing how we would get through the month, Paul's accident, living situations changed, putting my mother in the nursing home, loss of so many close friends and the list goes on and on. Taking a deep breath I think "With out our close  friends and family we would of not of gotten here". The power of prayer is a magnificent thing. You can feel all around you that people are praying for you . I would close my eyes at times thinking "How are we going to get through this? " and then, I could feel the prayers surrounding me and it was like we were led through a storm to a safe place. Thank you all that prayed for us and those that helped us out. I am forever in debt to your kindness.

My Mom is very good these days. First time since I can remember Mom's Christmas cards that did not have so much mumbo jumbo written on it that did not make sense. She is getting the mental and Physical help she needs and that itself was my best gift this year.









Paul the wonderful guy he is took my healthy grand kids out to see my mom for her Christmas party. The kids had a blast and mom was so tickled to surrounded her great grand kids. Lizzy was home sick with Christen and I both.  The very next morning I hear groans and some scary sounds coming from the upstairs bathroom. Paul was vomiting and had severe diarrhea. Being an insulin dependent diabetic he had me worried. Granted I had no sleep the night before because of doing treatments on Lizzy around the clock. Christen help me tag team Lizzy and slept on my floor in my room to help with Lizzy. Lizzy was on supplemental O2 for two days. She ran high fevers and then it settled in her chest. So, here I am taking care of Paul too. Disinfecting every time we went in the bathroom besides every inch of the house!! I would hear him down stairs and I would run down stairs and clean that bathroom too!!! I was a "Freak!! OH my goodness!!
Lizzy and I have not left the house in two weeks. No family gatherings for Christmas Eve and Christmas day. We were home and safe. Lizzy had a great Christmas even though she was sick.
Lizzy was still having problems yesterday.She had thick mucus in her I could not get out. I tried to figure out what was going on and her sinus passage was blocked. So, today I used MFR therapy on her some neb meds her and got the blockage out. She has been so much better today.
Below are pics of her at the Rotary Club's Christmas party a few weeks ago. I will have more pics of her later.


My brother in law was in a coma for two days and the doctors said "They did not think he would survive." Well,  I am here to tell you that after we requested prayers from family and friends and he came out of the coma today spitting and sputtering!! Divine intervention!! The power of prayer and positive words. Believe in miracles because they work!! Thank goodness my brother Rory and his family are there with Rita .
Sending healing prayers to MJ also. She has been sick for a long time. MJ get better!!  Sending healing prayers to Sophia Gaynor too!!

Thank you all that are in our lives and Thank you for your continued prayers!!

2012 will be a great year. I feel it!!

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

Wednesday, December 21, 2011

Just a quick update- Living with SMA

Wrote this a week ago and I guess I did not finish!! I will update again soon!! Its been a better week!

As,  Christmas approachesI have been going through some thing  lately that seem to be making a huge impact on my emotions. A death of a son of a couple that were our very best friends over 25 years ago three weeks ago. Then, his father....... our old friend died a week ago tomorrow last week. Did the son tap his Dad on the shoulder and tell him it was time to go? Imagine what that family has been going through the past few weeks. Losing a sibling and a son then, to lose their father and X husband. I could not imagine. Lizzy and I have said prayers for them. It hurts me to know they are all going through such a difficult time
 It was like we had gone back to a different time seeing many old friends and acquaintances . We are all old!! Where has these friendships gone ? How was it back over 25 years ago we could not seem to live with out each other and then we do not even know each other now? I still have many feelings embedded in my heart for some of these people but how can we lose touch like we have? I did not even know I missed my old friends until I saw them again. My life took huge changes again when Lizzy was diagnosed. My old friends  have no clue as what my life is these days. They have no idea what it is to fight so hard to save a grandchild that your care for that was diagnosed with SMA. They have no idea how I try to help as many families as I can with what I have learned from caring for Elizabeth.  This past week wore heavy on my emotions besides my heart.
Lizzy had the Rotary club Christmas Party on Tuesday. She loved it. Its a great thing they do for special needs kids.
Lizzy had swim therapy today and worked so hard today. I was so proud of her.  She said ,when we got there  that "She could not wait to get in that pool!" I knew she like swimming but now I know she loves it.
Lizzy is our miracle. She is so special and is so happy all the time. I am content with that.

Special prayers to our sick friends!! Asking a few for me too. My headaches continue. I have had them since the car accident. I need to get to a chiropractor but when? I have no time to do anything for myself lately.

 Have a fantastic holiday season!!
"We believe in miracles because we live with one!!"

Sunday, December 4, 2011

Christmas is sneaking up on us - Living with Spinal Muscular Atrophy

Its been an interesting December so far.
Lizzy had a bad ear infection and then , she started having some plugs. Got her on an antibiotic and she seems much better. Her fever caused her heart rate to jump to 173!!! She is still on extra treatments and experiencing some plugging. UGH..... I love the season just not the illnesses that accompany it. Then, we get out our Christmas tree that has 700 pre-lit lights on it and half the lights are not working.  I know we have had this tree for 6 years but... geessh come on now!! So, since funds are tight Christen and I had to take ALL the lights off the tree.  That was a very tedious job!! A pain in the hiney!! We had wanted to get some lights at Wal-Mart or K-mart. All the white lights were gone!! First week in December and all the Christmas lights were sold out!!  Really? Can you believe it?  Sold out!! So ,after all the work taking those lights off it sits in the corner "Light-less" until we are able to get some light. Christen was going to go get some at another store but..... the van is broke down again!! Paul had changed the roaters and brakes yesterday . Then, Christen was taking Rachael and Robby home and they smelled something burning. Smoke came rolling out from where the tire is.  She walked in the house screaming "That her van was on fire!!" Paul went running out there.  He said " Not sure what is going on but he thinks her brake stuck on." So, they are out there together bleeding the brakes as I write this. " Please pray it works.

Tomorrow, will be our 37th wedding anniversary. I can not believe how fast life goes by . Seems like yesterday, I was sixteen getting butterflies the night before our wedding. Every-one said it would not last. I figure lasting this long in a  marriage we can accomplish almost anything!! Its has not always been easy. Last three years have been  very challenging.

Lizzy is getting better .  My mom is doing better than she has in years!! Christen's neck and jaws are improving. Mine too just not as fast as hers. I am losing weight SLOWLY but losing!

Keep, Hannah Price in your prayers! MJ too!! I have  NOT been updated on Stella , Kennedy or Nick so they are still on our healing prayer list!!

Thank you to all my friends for being there for us!!

"We believe in miracles because we live with one!"
Happy Healthy Holiday Season!!

www.our-sma-angels.com/elizabeth

Dawn just sent home some lights. The tree is now decorated!!