Another Lizzy update (Spinal Muscular Atrophy Type 1)

Elizabeth is doing so much better today and actually fighting wearing the bipap so that is an indicator to me she is on the upswing to getting better. Still junk coming out of her trunk but it is moving out. Her O2 level is great, Still a bit higher heart-rate than normal but she is recovering and doing well.

The feeling of being absolutely helpless in getting her well clouded my inner thoughts this past week as I watch her sleep in between treatments. It was hard for me to grasp the thought that she had junk in her chest and no matter what I did nothing seemed to work for days. I thank God she is strong because on bipap she would not drop lower than 94 o2 unless for a second she did but after I coughed her she would go back up and maintain 94 and above. Should she of went to Madison? No.. I think three years ago yes, but as I sit and think about her illnesses and how well I know her and how I can read her eyes I believe keeping her home and not exposing her to any thing else was the right choice.It was a long last few weeks. To know I can handle such a bad illness kind of gives me a feeling of relief. We did treatments every 2-3 hours for days sometimes the treatments would last for hours. The time didn't matter just getting her well was our total focus. We would be so exhausted but we would keep going. Her diet of donor breast milk, pedilite and tolerex I believe helped her get over this faster. I was so worried when she started her symptoms. The high fever scared me but the first few days I could do it alone then as the week went on she was so much sicker.
My illness wiped me out. I do not even know when I got well. Then, to go right in to Lizzy being sick when I had not recovered was something I do not want to do EVER again. With out two of us(Christen and me) doing treatments I could not of done it. There were times for hours Christen and I would cough her, chest pt etc and Lizzy kept saying "more cough more cough". Lizzy would cough so hard and so much like she was in control and watching her fight was what kept us going. She is an amazing child with such inner strength.
I did not know what day it was most days and I am shocked to realize that March is almost gone when I thought about it today looking at the calendar

I did get to hold my new grandson Corbyn today. I sat and held him and stared at him for hours today. I saw my husband, his Dad and Dawn in him. Funny to see so many people in one little miracle. His cry is so masculine. His head so perfect. He is so little, so precious and a miracle. I helped bring him in to this world and that alone is so close to my heart. I helped bring all six of my grandkids in this world.

I also had my great niece today. She looks like she has grown again. She actually had not forgotten me as I have not been able to watch her in two weeks. She was smiling ear to ear and cooing when she saw me today. That warmed my heart.

Paul still has not gotten any calls back on his job applications which is totally upsetting him. He applied at the plant with the new owners and he has not got called for a job. He is afraid he is too old. Several places we have sent his resume and with his experience there has been no one interested. That does not make sense why he would not get called for a job with his references and experience. We are worried about bills piling up. We have insurance until the 31st. I know something great will happen for us. I feel it.

Christen and I both were going to go job hunting ourselves but fate changed that one with my illness then Lizzy's.

Sophia Doebbert pulled through her surgery like champ. My friend and Andrea's good friend Donna(Mary Kate's MOM) called and updated me on Sophia. Andrea is just so exhausted.
Thank God Sophia seems to be doing very well.

Many prayers for Sophia, Kaitlyn and all the sick kids.

Keep us on your prayer list too.

We believe in miracles.
www.our-sma-angels.com/elizabeth