Illness hits again , Last day of School and Our Next Chapter - Living with Spinal Muscular Atrophy

Lizzy has had a wonderful last few weeks then with out warning another illness struck her Friday night . She complained of a sore throat . But.... she said " It only hurts just a little." Ugh... Okay, I will give her some Motrin and lets see how she is over night since she told me this at around 10pm on Friday. I watched her most of Friday night emailed DR.Schroth . Then,  about 7am Saturday morning she wakes up with higher than normal heart rate from low grade temp and snotty nose.  Waves on anxiety over come me. I can  say in my mind I  was silently FREAKING OUT!! Okay, I need to remain calm for Lizzy's sake . Yeah, like that is going to happen. I had tears running down my face.  Oh My... Not again. This can not be happening.... Okay, Lets be calm here. Think positive Jeanna you will get through this like you have gotten through so  many illnesses with her. My thoughts were running wild thinking about not been able to take care of her like last time, Is this RSV again? I hear that you can get RSV back again quickly once you get it. My gosh all I could think about was she was getting sicker. She was running a low grade temp, complained of her throat feeling worse and snotty nose. Christen called up to Madison and DR. Greene called back and assured me Lizzy was in good  hands with me and he thought possibly it was like a illness he just had that last 4 days and ordered her an antibiotic. Okay, I feel a bit better but I upped her treatments and put her on bipap Saturday morning. She woke up Sunday saying "She did not need bipap anymore . She did not want on it after her morning treatment.  She was good all day except for that running nose. Then, around 6pm she was breaking out in that rash she gets when she gets flushed and needs bipap.  Her o2 level was dropping to 96-97 O2 . Not bad but... okay this is not bad she just needs a little bipap time I keep thinking to myself,  I asked her if she needed her bipap and she said "Yes" . Okay, overacting  I was thinking the worst. Oh no, she is getting worse. Put her on bipap . Still doing the extra treatments. Well , at around 5:30 am after I finally got to bed at 3am after doing all her treatments and getting things ready for today Lizzy wakes me up just a talking up at storm. " Nina you awake ? , umm I want to watch TV, ummm can you move my elbow, umm can you move my foot. Nina Nina Nina!!"  I reply, " yes Lizzy I am  awake now thank you"  with out further a do we were up for the day I guess.: She is so much better today thank goodness. The power of prayer again. You can not get better than divine intervention. " Sigh Of relief" the illness is about over,  I hope. Thank you for the prayers. Thank you God for taking care of our Lizzy . She was in her power chair today for a few hours and doing pretty well. Why did I freak out so bad. What made me second guess myself . Is this normal?  I have to pull it together if not for myself for Lizzy. Where is that self confidence?

Friday,  Lizzy was invited to school so she could meet and  see the kids and spend a little time at the school.  for the last day. The whole school sent her get well cards when she was sick in Madison. They wanted to meet her. She was so excited. Anticipation, consumed her all day Friday, ( Actually  since Thursday and she knew she was going) until finally drove her power chair in the classroom with pride.  She brought them all cookies. She visited a few other classes too that sent her Get Well cards.

She wants to go to school full-time but because the fact parents do not keep their children home when they are sick we can not take a chance. The illness she has now I am not sure where she got it but its was not from school because she got sick with it that evening.
Lizzy had a great teacher this year that came to the house named Becky. She is a very good tutor and Lizzy responded to her so well. We lost the battle for summer school but I think this fall Lizzy will do very well with Becky again. Lizzy's first grade teacher did very well with videos for Lizzy too. A few science projects. Her first grade case manager (teacher) asked if she could have Lizzy this next fall also for 2nd grade so that is so very exciting.

We stayed home all weekend but that is okay. 

Christen went and put flowers on my grandparents graves, a special friend of my sister's that passed away in a car accident that my sister was in also, a baby's grave name Levi( that died possibly of SMA we will never know that was Lizzy's dad's sister baby an infant and died in his sleep of natural causes), the family head stone and my great grandparents graves Saturday. My grandparents and great grandparents are where we come from so we pay them respect each Memorial Day. I used to plant flowers on all their graves but the cemetery started pulling them up after memorial day. Crazy that they did this because the plants were not in the way of their mowing. Christen and Jessica like putting flowers on the graves too.  I missed going this year. Lizzy was sick so Christen offered and I let her do it.  I always think about my time when my grandparents were around and the memories they created for  me. I feel  peace when I am there because these people help make me who I am today. I spent  a lot of time with my grandparents because my mom was ill a good part of my adolescence or Mom just could not handle me she says. I took trips with my Grandma Frieda and Grandpa Russell to Missouri for the Cross Country Trail Ride (Horses) and to other places in Missouri. I loved horses and tinkering around with mechanical things as a kid.  I loved the farm. My Dad lived right next door so I was on the farm quite a lot growing up more than my two younger siblings.  I  just  got a few goose bumps that ran up my arm !! Thinking to myself what a great life those people gave me when I was with them. I miss them so much !!. My kids and grandkids would of loved them. I know they are all watching over us now. Christen finds she needs to put the flowers on Levi's grave because no one else does. No on puts flowers on the graves we do. I have been doing this for many years. Enough, thinking about that. Grave yards do not scare me . 

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Every day Lizzy asks when are we going to go visit our friends that live far away. Well, we are not going anywhere until after the middle of July but local appts. No  FSMA conference for us this year we are not able to attend this year. That is Lizzy's time to shine. That is shame Lizzy is not able to go this year. Maybe next year. No Stanford trip at all this year since DR.Wang is on sabbatical . I think we will not be going back out there to see him because we recently got a letter from Stanford saying DR. Wang is no longer at Stanford. That  is kind of is a good thing because no long trip in a van but a bad thing we will not see the wonderful people like Molly and Andy anymore. They are so much like family to us. We will not see Hayden's family anymore Jennifer and Chris. They are like family too.  We will not be staying at the motel we always stayed and visit with the ladies that run it. We will not be at Lucile Packard anymore seeing DR, Wang or the pharmacists. It has been a  big part of our life since Lizzy was almost 8 months old.  Its hurts my heart but we all must move on with our own lives. These people are all close to us and we will see them no more unless we meet some place else. They are all like family to us. We are moving on to our next chapter in our lives I guess. " Sigh" Miss them all.  Lizzy will be getting the trial med in Madison starting in July. 
Lizzy is excited about seeing our good friends in Minnesota in July! We can not wait! 

Please keep Lizzy in your prayers and our dear friend Sophia Gaynor. Sophia is in the hospital and just recently had a tracheotomy. Here is her Daddy's Blog Post http://www.sophiascure.org/blog/daddy-im-ready

Beautiful loving family and we have known them since before Sophia was diagnosed. Wish they lived closer. 

Thank you those of you that are in our life. 

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

www.our-sma-angels.com/elizabeth 

We are home from CA / Spinal Muscular Atrophy

Our flight was very late last night. We didn't get home till around 12am and after Lizzy's nightly treatment routine it was 1:30am before I even got her to sleep. She still had 100ccs left in her bag when she woke up today so I let her sleep in till around 10am this morning.

The trip was the best ever as far as flight and arrangements on our stay. We went site seeing with Molly, Andy(Andrea Doebbert's aunt and uncle) , Jennifer , Jacob and Todd Goodson. We went to Pier 39 where the seal lions have made a home after the earth quake. Took pics of Alcatraz,(could see from the pier) The Blue Angels were practicing and we got to see them. (Lizzy hated the loud noise) I almost peed myself a few times watching them coming so close to hitting each other. Lizzy and I took off though when she said the noise was hurting her ears. We went to park that the Canadian geese that migrated their after the park was complete and have not returned home.
We saw San Francisco down town and their very cool houses , the Golden Gate bridge park and the Pacific ocean.
It was truly a great trip. Lizzy was something....... LOL . The night we got there it was late. I did her treatment as usual and she was doing so great. Well I got woke up from her alarming at 140 heart rate. So, I asked her" if she was sick"and she said "Lady.... I am NOT SICK!! I just want to know what is in the package up there " I said huh? and looked up where she was looking and Molly had a birthday present for her that she had not given her in a pretty package on top of a antique bureau . LOL. I laughed so hard. She finally told me she was pooping. That was the cause of her high heart rate was high.

The visit with DR. Wang went excellent and he is totally shocked as everyone how well Lizzy is doing. He said he leg movement thing she does is like something out of a ballet. Lizzy has gained more weight again and looks totally great. He spent most of his time with Lizzy and he didn't not talk much to us. He shook our hands and said she is doing just excellent and was so awed at Lizzy's movement, talking and just Lizzy in general.
I guess the media people tried to call us and told Virginia (coordinator for Wang) and told her Channel 11 news was supposed to be there. Because something had come up they canceled. We had no clue they were even thinking about doing that. Thank God we didn't have too!!! They can wait till I lose some more weight . ( I hate surprises like that) Robert Dicks the media person from Stanford came in and saw Lizzy and took pics of Lizzy and her favorite nurse for the year end report for Stanford. Robert told us Lizzy was just one the most beautiful children he had ever met. That made us feel good ans Lizzy looked at him and you could see the sparkle in his eyes. DR. Wang sent two residents in to LEARN about SMA so they got a quick detailed report from us on Type 1s and they need to understand SMA. NIV,AA diet (and breast milk) and how to help these kids stay strong by stretching etc. They loved Lizzy also.

The trip home was great except for the late flight last night

Molly and Andy made the trip so special. We stayed with them this time. Very Intelligent warm compassionate , heart warming people. They are like family to us. Their home is just beautiful.

We have to go back in March not sure when. That was something that we didn't not compromise on. No way we are flying during RSV season. We are always now taking the later cheaper flight and staying that extra day. Worked out great.
American Airlines were very accommodating on the the trip there and some of them were on the trip home. We do pretty well traveling with all 6 of Lizzy's machines.
Now just got to figure how we are going to get out there in March.