Rain Rain Go Away!! Lizzy wants to go Outside and play!! - Living with Spinal Muscular Atrophy Type 1

Wow, summer kinda came quick this year.  What happened to spring? We have had some 90 degree days already and then rain for a week now. Lizzy wants to go outside!! Enough rain already!! Bad flooding around here too.

The picture above is Lizzy at Heritage Days in our home town last week . Then, her with her cousin Caitlyn and neighbor Blaze. Lizzy is" Miss Popularity" this year here with the kids all wanting to play with her!!
Things have simmered down a bit here if that is believable !! So, much less drama since February .
Lizzy's anxiety issues have gone away!! She is a bit sassy at times but she is not worrying like she used to and whining anymore. YES!! Life is good and peaceful!!! Thank you God!! Christen has her days but over all her heart  is healing and she is accepting things now. Funny how you take one negative person out of your life and positive things start happening. YEEEEEEEEES!!
Christen has lost a ton of weight and I have lost some but working hard at losing more. I have to be healthy I take care of Paul and Lizzy!!

I had a great Mother's Day. I went to church( don't faint). I just have not went in a long while because of the life changes the past decade. So, okay I went. Doesn't make me a bad person for not going regularly. I believe you do not have to go to church to have God in your heart. I pray regularly and thank God for what I have , pray for family and friends.

We took a trip up north  last Sunday and met the Pitzens to give Miss Avery, Lizzy's old power chair. It was great seeing them. We have not seen many families since conference last year. We miss all of our friends!! Getting back in touch with them also is hard sometimes.
The Pitzens are an awesome family. Good friends. Lizzy just loves Avery. Lizzy had to show Avery how to use the power chair. Lizzy did it but... did not like it!! She got all stiff and snotty with us for putting her back

in her old chair.  Notice the look on Lizzy's face!! ( chuckle) Lizzy said "She was glad to give it to Avery so Avery can run all over like her" Lizzy was unable to take her own power chair because of no room. (We are in so much need of a handicapped van!!)  Katy had to do some adjustments when they got the power chair home it home but I hear Avery is driving the "Princess Purple Power Chair" !! Gives me goose bumps to know another child will love this chair as Lizzy used to. Paying it forward is what its all about. The Pitzens treated us to a nice dinner and great time. The last time all of us ate out together ( Paul, Lizzy and I ) was when we were in Madison about two years back. I have a budget I have to stick to. I have to buy Paul's test strips, Lizzy's supplements, groceries and try to all the bills and its not easy.... but, I do it and do not think about what we are missing out on. I think about how well Lizzy is and how Paul's diabetic issues are slightly improving over what they have been in years. Got the keep the positive and let go the negative. God will find ways to get us through. I pray Paul's disability will get approved at his court hearing ( WHEN EVER THAT IS). We have been getting through but... just barely. It seems when we are really struggling and feel like we are not going to make it God helps us and works through others to help us some how.
Found this quote recently and yeah I, feel this way- May God give you:"For every storm, a rainbow, For every tear, a smile, For every care, a promise, And a blessing in each trial. For every problem life sends, A faithful friend to share, For every sigh, a sweet song, And an answer for each prayer."

We are walking at night when its not raining or nasty weather. We are up to 18 blocks!! All of our lives have changed so much this year. Lizzy is up in her power chair 8-10 hours a day most days and wanting to be outside. She is doing so well its amazing. Who knew how will her quality of life would improve so much?  Her spinal fusion has changed her life and her new power chair. I pray to God she stays this well. 

Lizzy has summer school starting next week. 
She also is back in swim therapy and speech. They are all shocked at how great she looks and how she is sitting up so well!! The therapists have not seen her since before the spinal fusion. The look on their faces when they saw Lizzy last week told it all!! Unless you see her its hard to visualize how much better Lizzy is.

We got a new portable Cough asst yesterday!! Then, shortly after we got that we found out that Lizzy was granted a Ipad 2 from GSF for Project Mariposa!! Christen applied for one and GOT ONE!!! My gosh! 
https://thegsf.org/campaigns/detail/projectmariposa/ This is only for children with Spinal Muscular Atrophy.

Lizzy has an Ipad that she had gotten a few years back from one of my best friends for Christmas. It was/ a wonderful gift. A dream come true!!   It s one of the first IPADs  and now because of technology and upgrades her Ipad is not able to do what she needs it do. She has not been able to down load many of the new apps or use it much for school any more. She loves to Skype but she does not  have a camera on her Ipad either. So, It was so great to hear Lizzy was granted one. Thank you GSF!! Wow, I never expected such a great day as yesterday!! Amazing!!whoo hoo

I just want to add something here. For those of you that do not take your kids out of the house. When, Lizzy was four she did not know what a mail box was, a post office, a movie theater and a few other things. We found this out when she was in speech from her answering questions. So, just a bit of my input but..please, take your kids out in the summer to experience things. Even if its on bipap take them out!! We at that time realized we were NOT living we were hiding in our bubble because we were so afraid to take Lizzy  almost any where. Take walks, go museums, go to an art gallery BUT get your kids out of the house so they can experience life. That is why we try to do things with Lizzy every day if we can. Experience life and all it has to offer. You do not have to go far a way just walk around your own town. People also get to know you when you are out and around.  Okay, done with my preaching just something I wanted to share.

Hope you all have a fantastic summer!! We will just be hanging around here at our home town!!

"We believe in miracles because we live with one!!!"
Lots of SMA info at

www.our-sma-angels.com/elizabeth
http://www.sophiascure.org/
http://www.smaspace.com/
http://www.fsma.org/
http://www.aadietinfo.com/
http://www.smasupport.com/

Bouncing back - Living with Spinal Muscular Atrophy Type 1

After,  I was a total " freak"  about Lizzy's Spinal fusion its taking some time but, she is almost back to herself. I had to realize it was 12 hour surgery , she has Type 1 SMA and sometimes it takes time to regain things back. Watching her in pain and not able to get comfortable hurt my heart. Her voice is in full pitch now. No more quiet days. She was not letting us move her legs on purpose. I thought the surgery has caused her not moving her legs. When, I caught her moving her legs and they were not tight and I thought they were she "laughed" and said "I did not want to move them because I thought it would hurt my back, but it doesn't." She still has some discomfort but over all doing FABULOUS!!   She no longer has a hunched back on one side. Amazing, to say the least. I am awed at the difference in her . She can sit up for 5 hours in her power chair on days she wants to. She has not totally gotten the whole concept "she can be" in her power chair every day. She went from maybe lasting 20 minutes in her chair some times to actually eating via- g-tube and sitting up for hours at a time. She is getting "braver" each day. I love it. She runs from room to room in her chair seeing what everyone is doing. I love it!!  She is still bathing in her bath chair because the bandage has not come off yet. Its okay "She is getting pretty clean!" she says. her hair is so long!! She made the statement that she feels "Older" since her surgery. LOL She looks  so much older. She is simply gorgeous!! She is my "Hero"!!

Lizzy is looking forward to the "chubby red faced"  man wearing a  red suit making finding his way here for Christmas. Hope she is not too upset she is not getting everything she wanted but..... she has an expensive list this year!! I dread the day she finds out that that "chubby faced" little man is just a "magical innocent myth of a child's belief" . I am afraid to take the magic out of her life. She is a miracle and to take that belief from her to me would be criminal in my mind. Silly, you might think but Lizzy has jumped so many hurdles in her nine years of existence I would hope that we can preserve this myth for at least a few more years. She is so "mature" for her age in many ways but I would like to keep this myth for as long as I can.

I just wish I could help her heart get over some of her disappointments she has experienced.  Lizzy,being a child of a single mother its been kind of hard to understand some of circumstances that have occurred. Constant promises that have been promised by a certain people that drop in and out of her life that are broken, just cause me so much anger. We get her through the disappointments with all the love we give her by our family. She seems to understand things we do not understand ourselves. She is such a great kid. Love her with all my heart. I tell her every night " I love her to the moon and back!" I love her more than that.

Here is some more of our heroes in the video below. Grab a box of Kleenex  Its finally here!!A way to cure babies through Gene therapy. Hoping to help the quality of life in some of the older kids. Thank you to all the Moms and Dads that went to the FDA to get the trial approved. This is history in the making . I cried like a  baby when I heard this was approved for trials to begin.
https://www.youtube.com/watch?feature=player_embedded&v=z1GKTwR2STg
Lets us not forget the older kids that inspired this trial.The babies/young children that passed from this terrible disease.  Let us not forget those of us that have fought to save these kids no matter what the medical community told us. The doctors that fought for these kids like DR.Bach, DR.Schroth, our DR. Hough and DR Wang even when they were facing a medical community that was bias and totally not willing to learn. The organizations and families that raised the money for all the research and to help us care for these kids is unbelievable. We all had a voice in these trials even if we did not go to FDA and tell our stories. Our stories are out there and have been told many times. Thank you Vinny and Catherine for your passion to pursue your belief in the gene therapy to face the FDA head on!!  I had no idea this was going on at this time but when I heard about it I was so excited.
I pray Lizzy and the older kids will be able to be a part of phase two in the trial for the gene therapy.They have inspired many with their courage, strengths,our trials and errors. Lizzy and many older kids helped so many parents have HOPE. So, much has happened since Lizzy was diagnosed. Its truly miraculous.

Prayers please for all our sick friends and those that have had surgeries! 

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

www.our-sma-angels.com/elizabeth

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 (like during Lizzy's surgery)and I can actually feel people holding hands and feel the prayers surrounding her. It is like we were led through a storm to a safe place . Thank you all that prayed for us and helped us out during these hard times. The past few years have not been easy but we have gotten through .

Spinal Fusion and Family - Living with Spinal Muscular Atrophy

This has been the most emotional last few weeks of my life besides the day Lizzy was diagnosed.

Christen, Lizzy and I came to Madison  Saturday Nov.10 evening for Lizzy to be admitted Sunday at noon for her Spinal Fusion at 7:30 am on Monday Nov.12. We spent the night before at the Ronald McDonald House.
 Home now and looking back I wonder how I got through this past week. Well, I guess I know...lots of prayers from friends, family and many myself. Believing in miracles is what its all about. Divine Intervention.

Lizzy went from a 93 degree curve to a 47 degree. Her last few growing spurts since August were a surprise to all of us. Her Curve had gotten so bad and she just started to complain about it.  The best Ortho surgeon  for SMA kids in the world is DR. Matthew Halanski ( American Family Children's Hospital in Madison,WI ), He is "Superman". What he did for Lizzy is like a miracle. She had the worse curve than any other SMA child he has ever done.
Lizzy has exceeded the all doctors' expectations. She went through a long twelve hour surgery.It was supposed to be eight hours. There was some unexpected delays in the surgery. During the surgery all of a sudden I had this weird feeling something was wrong. I blame it on intuition . Christen went back and asked the nurses and they said Lizzy was fine... still I felt something was wrong .  I asked for prayers for her from all of our friends. I was right on with feelings I was having that something was not right. Well , what we found out after that there was a problem with one of the pins on one-side of her rods. It broke. So, they had to customize her rod on one side. Her blood pressure had dropped a few times and after she was in her room recovering it was from one of anesthesia meds that was causing it to drop. I was so upset and kept on them about her very low blood pressure and after the IV with the med was stopped her blood pressure went back to normal with in seconds. She had to have 2 pints of blood also. I knew that was not right with her blood pressure dropping like it was. Then,seeing her little swollen body hurt my heart. But she quickly improved!
 The nurses and all the doctors were so good to us. Lizzy was a hit with her nurses and docs with her sassy self and her determination to get better. Love that kid!!
DR.Schroth told Lizzy she has done "Fantastic" and only explanation for her doing so well was that she was "Just Lizzy".  LOL
The top picture is the day she was extubated. Pretty amazing to say the least!!
Here she is in her power chair the day after she was extubated and the next day.

She has done so well. I do not think I could bounce back that quick. DR. H was able to get her to 47 degrees from 93 degrees because her bones were so much more better than they expected. She has been on Vit K2  extra cal citrate  and D3 for a very long time besides the donor breast milk she has been on since she was 2. It has all worked. Plus, she is alkaline in her diet also which helps keeping her bones strong. She did leave the hospital slightly anemic but DR,Schroth said I would fix that with her diet like I always do to help that better than any med could do. That was a HUGE pat on the back. Guess, I know my stuff, Huh? I guess DR.Schroth knows that too. (Chuckle to myself)
Lizzy is healing and having some discomfort but, doing well. Sitting up so well she looks like she grew 5 or more inches.
Thank you for all the balloons and ecards. She loved them!! I think she got close to 50 ecards

We went right from Madison to Dawn's house in Lexington for the night. My girls volunteered me to cook the next day.( Oh yay)  I sat on the edge of the back seat since there was no where for me to sit for 4 hours.Stopped once for pee break. At least we made it back with out any issues. Lizzy is so long she takes up the whole back seat now! We had a full van of Lizzy's stuff.
So, Thanksgiving day I started at 7:15am cooking with a huge breakfast of biscuits sausage gravy, fried potatoes and German pancakes. Then, I cooked all day for Thanksgiving dinner. I was beat by the time everyone arrived. Up all week around the clock turning Lizzy all night then coming back to cook for 34 people was not something I had planned. It was great day though besides the fact I made my first ever lumpy gravy and a tip from a friend to use a hand mixer on my lumpy gravy and it worked!!   All and all it turned out a very good day. My brother Rory and his wife Carlene had come home from Kuwait for Thanksgiving. It was friends and family. Love that we can all get together. Dawn's house is huge so we all fit!!

Lizzy below the day she left the hospital.

Great Great Grandma Janet and Rylee

The holiday season has begun.  UGH.... I love the season just do not like the fact I can not buy for the grand kids at all this year.I am baking coffee cakes for my kids and their families for the holidays. Times for us are than worst ever.  We will get through if its what is supposed to be. God has gotten us through this long. I just wish Paul's health would improve.

Keep Lizzy in your prayers to keep recovering well.
Happy Holidays!! We have so much to be Thankful for!!

Please say prayers for two SMA children who will be having surgery in the morning. Prayers for Dani and Sohum
Thank you!!


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