Home Never Felt So Good- Living with Spinal Muscular Atrophy Type 1

Home...... " sigh" Thank goodness.The last  few weeks have been like we were in a different dimension or some one else's life. It was our reality but I do not ever want to go through it again. I spent a lot of time praying and crying. I aged so much these past few weeks. My girls all told me "Mom your hair...... its like it turned white,  color it!"  So, I did today and its purple. Actually, Christen did it for me. I used organic hair color. Yep, its reddish purple. Lizzy said " It looks like a strawberry Nina!" Any way, I might be calling my beautician to fix it! ! Life, is slowly getting back to normal purple hair and all. I have had company come see how Lizzy is doing since we have gotten back. Tomorrow, I will be able to get a bit more caught up around here.

Lizzy is still on bipap more than normal but that is okay. She has been going on  it about 4 to 5pm. So, she is off a lot. It just going to take time. She is moving good and is on her computer several hours a day. I notice some nose flaring around 4pm or so and tell her its okay if she needs some bipap time. She tries to push herself to stay off. She has been getting up around 8am and off bipap at that time so she has accomplished a lot in the little time we have been home.

We had some wonderful nurses at American Family Hospital In Madison. We started blubbering like babies when we left. Kim, Claude and Lynn were so good to Lizzy. The RTs were amazing. Working side by side with the RTS was a relief knowing they knew what they were doing. The nurses said" we were so easy because we did every thing ourselves as far as feeds and taking care of Lizzy." Lizzy got really close to Kim  one of our nurses. Kim sat with her at her bedside reading books, doing a spa day , the two tea parties and just treating Lizzy so special. Claude also another nurse treated Lizzy so special. We had Lynn at night and she also treated Lizzy so well.

DR.Schroth was like a saint the way she arranged for Lizzy's med flight and handled our ER staff here to have such a quick and easy transfer. DR. Schroth was on vacation and did all this for Lizzy. What a wonderful caring doctor she is. I have already known she is great but this was way" Above and beyond the call of duty" She even had me on the phone two days before Lizzy made a turn for the worse helping me make sure Lizzy was in the best possible hands at home.

 Katie Poole has a special place in my heart for meeting Lizzy right off the med flight in the wee hours of the morning. She let Lizzy call us from her phone after she landed while we were on the road. She said " Mommy I am here. Katie is with me and I am okay!" I lost it when Christen repeated what she said to her. Lizzy is loved for sure by many. Our friendship with so many in the SMA community is just breath taking. The cards rolled in, the balloons, gifts, phone calls, two times we had  friends bring us supper. We even had a few friends stop up to check on Lizzy. I felt the strength of prayers surrounding Lizzy and also giving me strength to help her get through this. I have been known to be a bit clairvoyant at times but to feel the strength of words the prayers and feeling so many praying for her was undoubtedly the miracle that helped her get her through this bad illness besides her determination to live. Its like I could feel the words of the prayers. I could just go on and on about what wonderful people we have in our life that  are in our extended family. Thank you all so much!!

Now, I need to talk to my mom who is a block away at a nursing home and make sure she is doing okay. Its been hard to help her when my focus has been Lizzy. I still kept up what was going on with her and the social workers called me and updated me and my sisters. I am the one that makes Mom's medical decisions now and it the scares the heck out of me I am responsible for Mom's well being too.

Paul is still not working yet but waiting for the call any day to start driving a semi . They are waiting for the contract to come back through and he is in. Its harder than heck getting through this past year but the last few months after his total cut off unemployment has been the worst. Then..... Lizzy's illness. I think I have grown some "nerves of steel" or" brass ball"s because we have gotten through this all and we are okay. Its not been easy with added EXTRA stress ( which I will not go into) besides everything else but I have to say" Yeeeeees we are OKAY!!"
Now my diet starts AGAIN for me. I ate so much while Lizzy was in Madison I was worried they were going to have to "Roll my chunk hiney" through the doors. OMG.... It was unbelievable how much a stress eater I am.
Lizzy amino acid profile came back and it was fantastic. She was a bit high in glutamine but that was it!! The residents had a few others circled on the report but..... they were looking at the wrong values.They were looking at baby less than a month old. Wrong column.  So, I must know what I am doing as far as Lizzy's diet. I looked it over a few times and took a deep breath in and was relieved even during a terrible illness she was good.

Thank you again for all the prayers and just everything. Love you all. Thank you for being in my life!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth