Wanted to do a quick update to let everyone know that Ally is doing wonderful and we have had a lot of fun and excitement going on the last two weeks or so. I have tons of pics to share and within the albums are some short videos too. I’ll also be writing more details soon, but figured I’d start with some pics.
We’ve also dealt with a little craziness here and there, but isn’t that normal when you have a family and child with SMA? Ally’s school, Stock, is currently scheduled to close in June. I just visited this week to prepare for her to attend in April and now it might be closing. She would be assigned somewhere else, but Stock is probably the best Early Childhood School is Chicago. They are also working hard to meet her needs using a combo of homebound and attending school. We are also exploring spending some time in the blended classroom (special ed kids and regular) and some time in self-contained. The parents and school are going to do everything we can to keep it open, but this is due to state funding cuts. I believe 150 Preschool for All Programs are scheduled to close and Stock is #1 on the list since its population is not below poverty and some other factors. I’m praying hard that a solution is found and I will do my best to help keep it open.
Also got a horrible shock when my income tax check was not deposited on Friday as I expected. Since I never got around to filling out a new deferment on my student loans they took over $5000 to put toward my balance. Creating a payment plan was on my ‘to do list’ but it is done now. Really stinks since we were really counting on this refund for house things, bills, and some fun, but life goes on and we will manage. Gotta focus on the positive!
Here’s some positives….
1) We went to an amazing play at Pheasant Run last weekend. It was Beauty and the Beast put on by Noble Productions. The actors ranged in age from 8-19 years old. The director and entire staff and actors were EXTRAORDINARY! Ally and our family were given the Royal Treatment. We hope to attend again this weekend with Ally’s SMA boyfriend, Nolan and his family. I must say, I think this might be the BEST play I have ever attended and it is put on by children. Belle is about 14 years old and sounds like the Disney character. Check out our album below.
2) We went to a GREAT MDA event Monday night. It was a casino night for IL Fire Fighters to kick off their Boot Camp training. They learned tips on how to have a successful Boot Drive (when they go out on corners with boots to collect $$ for the MDA and all the children/adults affected). We met some nice fire fighters, saw some of our MDA friends and other families and enjoyed gambling with pretend $$$. I love Black Jack and won lots of chips and then raffle tickets. The raffle tickets won a prize package for Maribel. A HUGE thank you to our friend and nurse Maribel who came with us to the MDA event and play. This was done as a friend since she already worked 6 hours with Ally for the play and is limited in the # of hours she can be paid to work with Ally since she is now a supervisor. Maribel is truly an angel.
3) We are planning to go to an SMA Family Weekend in Lexington, Kentucky April 16-18th. This is at Camp for Courageous Kids and is FREE except for driving and traveling expenses. There will be swimming, bowling, crafts, fishing, horseback riding… and so much more. The best is the interaction with other SMA families. Both Maribel and our new nurse Megan hope to attend with us. I think the entire family and our nurses will have a unforgetable, superb weekend. This is our first vacation EVER with Ally, other than going to Cincinnati for an SMA conference last year.
4) Spring Break begins this weekend for the girls. Melissa and my mom are going with my sister Sandi’s family to the Dells for a few days. We will go to the play with Nolan and have the Shofners over on Saturday. Might see if any other SMA families in the area want to join us. Maybe it will be warm enough to get Ally to try out her hot tub this week. Hope to get the yard and deck straightened out. Overall, we will just begin to enjoy SPRING. Hope you and your family can do the same!
Be sure to click on the album covers and it will take you to all the pics!!!!
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| 2010-03-22 MDA Boot Camp Firefighter Night |
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| 2010-03-22 Bathtime |
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| 2010-03-21 Aunt Sharlene and Ally |
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| 2010-03-20 Beauty and the Beast |
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| 2010-03-19 Easter Bunny |
Angel Ally Blog - SMA Type 1 
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