Wednesday, April 6, 2011

Lizzy update 4/6/2011 - Living with Spinal Muscular Atrophy

Lizzy still can not be lower than 25%. O2 Struggles when she is off O2. DR.Schroth said a few hours ago she is not ready. She also said" we will not be out of here for at least another week". Lizzy has to be off Bipap for 4 hours to go home and well. Which "Sigh" is upsetting but I am not taking her home until she is well. So she is right. I just want to go home you know?  This strain of RSV is brutal. I slept for 5 hours off and on and I feel that was a mistake because I feel so tired today. I do better on a few hours sleep. Lizzy will NOT let me leave the room.Which is ok. She needs me right now. She is such a little fighter!! 
Lizzy had an okay night.Lower stats and higher heart rate than the yesterday afternoon but she is moving junk out of her trunk. X ray was better I guess yesterday. Her culture only had RSV which is Great no secondary infections.

She has her favorite nurse and RT. LOL Seven years old and requests people by name. Yesterday she said " Hey..... Just where is my doctor? " DR.Schroth was very busy yesterday and did not get a chance to see her. Lizzy barters with the RTS on treatments. " Just one more cough Please then my bipap!" No more suction!! I want IPV NOW!!" She makes everyone laugh and steals their hearts here.

Keep our girl still in your prayers. She is making progress but still pretty sick.

Thank you all for prayers, balloons, gifts , making us food,and just being there for us.
"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

Tuesday, April 5, 2011

Lizzy update -living with Spinal Muscular Atrophy

The power of prayer and miracles are amazing. Whoa..... unbelievable!!
Thank you all so much. 
Lizzy had a good afternoon. She is down right now to 25% o2. I do not want to toot my horn too quick but it seems maybe she is getting better!!
My mom is in Evenglow ( Nursing home a 1/2 block from my house) and is comfortable. 
My husband may have found a job! !
KEEP THOSE POSITIVE THOUGHTS AND prayers coming this way!!
"We believe in miracles because we live with one!!"




www.our-sma-angels.com/elizabeth

Two steps forward one step back- Living with Spinal Muscular Atrophy

Its been like riding on emotional roller coaster this past week.
Lizzy takes two steps forward and 1 step back. Breaks my heart to see what this little girl has gone through but on the other hand makes me beam with pride how she has gotten through it.

Yesterday, everything was going great and I expected this is the road to recovery . Then, she slid back again and bradyed again.
Last night, she was better but getting this junk out is unreal. O2 is still at 30%.

My mother is not well either. They are thinking its bone cancer. She is also in the hospital in our home town,

Its hard not to lose faith through times like this when there is so much going on but faith and believing in miracles is all I have.
Thank you my friends for being there for us.
Keep those prayers coming!!

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

Sunday, April 3, 2011

Healing- Living with Spinal Muscular Atrophy Type1

Update- Sunday Evening
Lizzy is doing better again tonight. Had a few tough times this morning. Not going to go into details because I will get upset again but the main thing is that she is doing better now and No o2 drops this evening.Our family was here today and it was quite emotional day but rewarding. I could feel the love we all share for a beautiful miracle child that has changed all our lives with her sweet presence , spunky attitude, her determination to survive all the obstacles she has faced starting with her diagnosis and how she just loves us so dearly. How one child can change so many lives  is amazing!
Thank you for the healing prayers, phone calls, balloons, cards, gifts and just caring for our girl and us!!
Thank you my dear friends for being the best friends a person can have in good times and bad.
Draz Family-   you made Lizzy wiggle her hands,smile , and pivot her shoulders when she has not hardly moved in a week yesterday afternoon!!. Thank you more than words can express!!(( Hugs))
Keep the healing prayers coming!!
"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

Saturday, April 2, 2011

The Power of Prayer!!- Living with Spinal Muscular Atrophy

You all are such special people and so glad to have you in our lives. The prayers worked and divine intervention filled our inner beings and the room.
A few hours ago Bill the RT, Christen and I tagged teamed Lizzy. She said she could not breathe even being on 85% O2. She said her throat was full of junk and so was her nose. her left top lobes were full. Her neck was hurting. I rubbed her neck and then we decided it was time to get her better.
So, we three used IPV, coughs, Bipap mask with O2 flowing and suction. Lizzy barely can talk and directed us what to do. We got so much nasty thick stuff out and a plug in her nose. We worked on her for way over an hour.
She at this moment is satting 99, heart rate is now 112 and she is sleeping. Busted all the junk out we could get!!
She was so relieved. I am so very thankful for all of you and your prayers!!!!!
Thank you all so much!! I hope this is the turning point!! She has been sleeping for an hour!!
Keep those prayers coming because they are working!!

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

please pray for Lizzy - Living with Spinal Muscular Atrophy


bad morning . Please pray, light candles and have positive thoughts to help our Lizzy. NEED HEAVY DUTY OLD FASHIONED direct prayers to the divine source that answers them. Lizzy has to get through this.
PLEASE Help her!!

Friday, March 4, 2011

Living with Spinal Muscular Atrophy Type 1 - Magic DVDs and Having Hope


Its been raining here today. Its funny how when the sun shines you feel full of energy (even when its super cold out). Today, rain  dark and it was in the 50s and a Blah dark wet day.

Elizabeth and I watched the DVD version of BBCS Life narrated by Oprah Winfrey. Bought the series( used but in great condition). Lizzy loves watching them. Great learning experiences. Lizzy says "These DVDS are magic" Today was a good day to watch them again. Watching Lizzy's face was amazing while she was so captivated by this unique series about species that live in our earth. I just love her so very much!!

Paul has had no call backs on the job interviews. He has called and went back for his own follow ups and NOTHING. This is getting scary. To be cut off unemployment and STILL every week applying for job with no success. The news says  "Its getting better in the job market!" He still has not been able get hired . He was talking to one of his people he went to school with and they said" The way the tech school does it is that they only have to get 80% hired jobs with  grants " They hope people drop out  after mid term because they still get paid. . Paul was on the list NOT to find a job for( From the tech school he attended I guess)  from the beginning because of his age!" Is that a bunch of BS or what?  They were hoping he would not of had a 4.0 average and drop out. Well, he didnt drop out and had a 4.0 and NEVER missed a day of class. So, what a scam but..... he did learn things he didn't know and needed that schooling to secure himself a job when things open up. There is no PROOF of this to our knowledge but....can you believe he was told that? He showed them huh?

Its been so peaceful here last few weeks with just the four of us. No drama.... just peace. More positive.
Paul is pretty positive he will find work soon. I am just so worried about losing the house but trying to keep positive. The monthly bills are draining our money. I can not wait for spring and of a gas bill and electric bill. If If we could afford it we would go with solar energy. It would cost us a fortune but it would save is so much .
Just paid off all the utilities and house payment. Huge expense. Over 600 for a monthly gas bill? What is up with that? and over 300.00 for electric?? Why are these bills so high? I have Just Energy and locked in my gas bill a few years back. Was it that much colder this last billing cycle than ever before?
I can almost cry sending those checks out but they are paid for another month. "Sigh of relief" Then, soon it will be yearly insurance premiums for car and the van. ugh... It will all work out some way some how. I believe that God watches over us and he will make sure somehow we will survive. We have HOPE and just look what we have accomplished with HOPE.

Its Christen's 28th birthday tomorrow. It did not think any of my kids would be living with us still when they are 28 but you know I guess this is way its suppose to be.

My tip for this  post is to use Clorox wipes or Cavi wipes to keep door handles, phones, counter tops, faucets, arms of chairs , tables, toilet seats,etc every day to keep germs away . Not just during flu season but every day. Make sure you wash your hands after you get the mail. If you use suction caths try to get sleeved ones. Cuts down on illnesses . Make sure you wash all equipment including masks after every use. Just some things I do to keep our home safe for Lizzy!

Many prayers for MJ who is in the hospital having a procedure done, for Leah Miller to make a
quick recovery, for our friend Sheila and her family , for us to stay positive and say extra prayers Paul gets a job soon.

Magic is believing in yourself, if you can do that, you can make anything happen." 
-Johann Wolfgang von Goethe

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