Where does time go? I can’t believe the end of May and the end of the school year is already here! With this (finally) wonderful spring weather we have been soooooooo busy getting Ally (and the girls) out of the house and having some fun too!
At the beginning of May – Kristyn performed in the play “Little Mermaid” at her school. We were very lucky to have front row seats saved for Ally and our family for the 2nd year in a row. Kristyn did a GREAT job as one of the mermaid sisters. Melissa and Ally really enjoyed the play and all the music.
The second week of May- Melissa, Ally, RN Kate and I went to see “Elmo Grows Up” Live at the Rosemont Theatre. After at first being very frustrated when trying to get handicap seats that Ally could also see if she was laying down, things REALLY worked out well. I called the theatre to find out what the best seats were that I could purchase that would allow Ally to see even if she was flat. They didn’t think there were ANY at all. I said that this was really unacceptable and I was willing to take a chance of her not seeing but wanted to make the best effort. The theatre ended up giving us 5 FREE seats in an amazing area pretty close to the stage, an aisle and tons of extra room for Ally. I wasn’t looking for free seats, but it made things a little easier for our family and I was glad the theatre realized they needed to be friendlier and more accomodating to handicap families. The show ended up being WONDERFUL. Ally actually sat up pretty well the entire show and really enjoyed it. Melissa was so happy to see so many characters running right by us in the aisle and kept saying she hoped they’d “come by Ally.” Several did make special efforts to stop by Ally before being swarmed by the other children. It was so kind to see Melissa looking out for Ally, but I also know she secretly wanted to have the characters come over to her too. At the beginning of the show, she said she was too old for Elmo (at 5 yrs old), but in the middle we had to buy her a $10 Elmo balloon that she played and played with until it popped. We were so excited to have great seats and will be purchasing many more in the same area for future shows. The Wiggles come in August!!!
Mothers Day was great! Melissa made me an angel coffee mug and several cards. Kristyn (and her friend’s mom) got me 3 roses on the way home from a sleepover and Billy did a ton. He brought home some chocolate, flowers, and even picked up a couple pairs of shorts for me. Then he grilled me a steak dinner and made a homemade salad. He also helped a ton with cleaning the house and laundry, which he often does on weekends. What a great man! I am so happy to be a mommy of my three girls and that God has chosen me to take care of Ally. It can get stressful at times, but the rewards are soooooooo amazing! Her eyes and small smile make everything right and better. Kristyn and Melissa are also huge blessings and growing up to be so caring and great kids. Kristyn is often a little mommy to Melissa, most of the time without even being asked. Hope everyone else had as great of a Mother’s Day as I did!
IL FSMA Walk - Ally's Angels
Last weekend, was the IL Families of SMA Walk n Roll. Our chapter is small and re-growing. I am the secretary, but I’m only able to do a tiny bit to help the president and our chapter. It’s just her and I, but we hope to recruit more officers and board members in the near future. I was able to get a few donations and the banners made by a friend (Thanks soooo much Signs by Tomorrow). Janet, the president, did almost all the work herself and it was a HUGE success! The day ended up being sunny, a little cold and windy, but it all turned out wonderful. There were three type 1 children from IL at the walk and several others with type 2. It was so amazing to interact and spend some time with Sophia (4 yrs old) and Nolan (6 yrs old). Amy Marquez who is about 36 and has SMA was also there. She used to live in IL, but moved to Florida. She has two children and is a huge inspiration to me. I just wish there was more time at the walk to spend with other families and our friends who joined us. Thanks so much Mama K, the Garrity’s and Taylor for coming out to support Ally. Also a very special thank you to those that donated $$$ to help find a cure for SMA. I’m sorry I haven’t been able to do personal thank yous yet. We pray for a cure or treatment in Ally’s lifetime. At the end of September, we will be doing a 2nd walk at Brookfield Zoo for the MDA (Muscular Dystrophy Association). We hope to have many friends and family join us again. All your support means the world to us — thanks ; )
IL FSMA Walk - Sophia & Ally
Ally's 1st LOVE - Nolan 6yrs old SMA 1
IL FSMA Walk Ally & Nolan
IL FSMA Walk - Nurse Maribel and Jose Luis
5-20-09 2nd Day at Stock School - Ms. Sandy
I have more exciting news, Ally went to pre-school for the 2nd time on Wednesday and 3rd time of Thursday!!! She is mostly learning and developing through a homebound teacher and therapists, but when the weather is nice, we hope to get her to school as often as possible. The staff at Stock School were sooooo welcoming and accommodating to Ally and our family! They are truly caring people who seem very interested in learning about Ally and helping her develop the best that they can. I was very impressed and we should hopefully be going 1-3 days a week till late July since Ally is part of the Extended School Year program. It’s just so tricky getting out of the house after breathing treatments, bath, gathering all her supplies, often having new nurses, and then there is the germ factor in the real world. All the effort is worth it to see Ally with other children and having fun with new teachers and therapists. I have a fourth IEP meeting for her on May 29th to discuss concerns I have with her current IEP goals and to try to increase minutes for speech, PT and OT in the home. We want to go to school as often as possible, but the reality is that most of Ally’s school needs to be done in the home for her to be safe. We will never go to school Nov-April during cold/flu season and need to be sure that things are set up better than they are now. We have a start though and I am happy for that. I will keep pushing/advocating for the best for Ally though.
The last day of school for Melissa is next Tuesday and Kristyn gets out around June 10th. Ally will have 6 weeks of summer school, probably a combination of home and school. Kristyn chose not to go to camp at the park this year, so hopefully she will not get too bored and drive me insane. Maybe she will babysit and make a little spending money. Both Melissa and Kristyn will maybe take some gymnastic and dance classes through the park district if there are any openings left. I’m behind on registering.
June 18-21st, we will be going to the Families of SMA Family Conference in Cinncinatti, Ohio. I am super excited to meet more families and attend some of the workshops and family events. It is a huge investment, but I know it is worth it. I can truly say that I have Ally here with me today because of all that I have learned from other families and Dr. Schroth (who will be there).
Our Deck Dream for Ally is starting to become a reality. Steve from Billy’s work drew up plans. Now, Airtite Company will have their committee look at them and decide exactly how they can help us with supplies and labor. If needed, Service Decorationg (Billy’s company) will also try to help out. After we get a permit, I am hoping it will be built in June and then Ally’s hot tub from Make a Wish will be installed. This is all soooooooooooo wonderful!!!! We can’t wait to have Ally enjoying the weather daily and spending some time with family and friends swimming. It will be another Dream Come True.
I think that’s about it for now….
Hope everyone has a GREAT Memorial Day Weekend! Thanks for checking in on my angel and please sign her guestbook and leave a message for her if you have a minute.
Love, Tina, Ally and Family
** Hope you enjoy the picture and there are additional pictures and I believe the small video clips uploaded in our May file on our picasa gallery page at
http://picasaweb.google.com/tina61775 (see our pics of Ally and family)
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Angel Ally Blog - SMA Type 1 