Been a Great Start to Summer!

Doesn't Lizzy look awesome? She has grown and filled out so good these last few months!! Thank you to all the breast milk donors!! You have given Lizzy your most wonderful gift!!
She is doing the best ever!!

Lizzy, Christen and I have been out walking almost every night. Thank goodness Lizzy stays up late. We go after dark because of the heat.
Hanging out here has been fun. Every night it seems we have an adventure on our walks. I love the exercise and Lizzy loves running around town. Her favorite place is driving fast down the law and justice center handicapped ramp here. The mosquitoes are terrible. Lizzy had some bites one night with  just OFF on so we started using lemongrass soap  in her bath also and she has not got bitten since.

Its been such a different life with Lizzy being able to stay in her power chair most of the time. Its been great for all of us!!
 Its already past the middle of June. Wow... How fast time flies!!

Last night we went to Monsters University Movie down town. We went with family and had a great time. Caitlyn , Lizzy and I walked home. We have to walk every night you know!

We went to Dawn and Jeff's on Fathers's day. The girls and I took the kids fishing . Lizzy had a blast. She had never been fishing before.

We still have the online fundraiser for Lizzy for a handicapped van. We have got a few hundred over 1000.00 raised. That is so great!!  Thank you all that have contributed. Christen is looking into more funding resources through a van company that sells accessible vans.  So, keep Lizzy in your prayers!! Walking with her is great but it will be hard getting her out with out a handicapped van. Laying on the back seat she plugs when in the van to long. She can elevate herself and maneuver her chair if she feels choky or her uncomfortable. She can not do that laying in the back seat.


We are missing all of our friends this year from the FSMA Conference. There was no possible way for us to attend this year or go any where for that fact! Lizzy so wants to go!! Hopefully, we can go to the FSMA  conference in DC one next year. Things should be looking up by then. Paul has his SSI  Disability hearing in Sept thank you to our US Congressman Adam Kinzinger's staff expediting his hearing! Whoo hoo Finally!! what a weight lifted of my heart!!

We have done pretty well for as hard as we have had it for the last almost 4 years. The last two years have been the worst since Paul's accident and his diabetes issues. It seems keeping positive,prayers and the love of friends have kept us going. There is a little girl that lives here that keeps me inspired also!!

Special prayers for our friends Charlie and Jake  !! They both have surgery for lengthening growth rods on Monday!!

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

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/