I have to admit that times can get pretty tough when dealing with SMA. I can get sooooooooooo busy dealing with school things, medical supplies, doctor appointments, phone calls to make sure people are doing their job for Ally…… doing the best I can for the girls. Sometimes the stress catches up with me and I shut down for a short time, but then I remember that I HAVE to keep going for Ally and her sisters to have the best life possible. I also keep in mind that I have family and friends who care and are there for us – THANK YOU!!!!
Small updates —
* Ally finishes up preschool at Stock this week and will be attending Extended School Year until July 21st and then Kindergarten at Hanson Park School. Stock is probably one of the most AMAZING preschools in the state or country with a caring community, experienced teachers and therapists, and I’m so lucky Ally started off her education here. I have to admit that I am very, very nervous about Hanson Park School since it is in a tougher, low income neighborhood without many involved parents, but I am going to focus on the positives of strong therapists that are used to working with medically complex children, super amazing speech pathologist and OT that have worked with Ally at home, a big nurse room with experienced nurses to assist our home nurses if needed, a dedicated case manager, and welcoming attitude towards Ally. I am also welcome to attend with Ally and her home nurse at the beginning of the year for the transition.
*Ally has been dealing with several smaller medical issues. We have begun testing for bone density, and more, so we can stay pro-active with Ally’s care. She is considered osteoponia (borderline osteoporosis) with her weak bones and we are trying to explore pamidronate infusions that many SMA children get across the country to prevent fractures and pain. One lead doc at our hospital does not believe in them, but we have others looking into it along with some research of my own. We learned Ally had an iron level of 5 instead of 20 and did 2 IV infusions of venofer (she went up to 9) and we are now using ferrous sulfate mixed with Ally’s daily food (although it may be bothering her tummy some). They noticed two very small stones on Ally’s kidney xray, so we are double and triple checking urine for calcium levels to see if we need a medication. Ally also has early signs of puberty so we did some bloodwork for that, but overall we are learning this is pretty common with SMA children and many other medically complex children. This sounds like a lot, but really Ally is doing very WELL. Her trach has helped to keep her sooooooo healthy this past year. She is so much more stable, can handle small illnesses at home, is able to tolerate doing so much more, is enjoying life and having sooooo many special experiences. July will be ONE WHOLE YEAR out of the hospital!!!! (knock on wood).
*Melissa and Kristyn are doing well and both finish school this Friday. Kristyn made the Lane Tech Varsity Cheerleading squad once again and a large number of her team members volunteered at the IL Families of SMA Walk N Roll yesterday. She continues to do very well in her honor classes and has become pretty independent, even going downtown Chicago on public transportation with her friends. Melissa is becoming a great reader and continues to have lots of energy and spunk. I unfortunately missed the deadline of signing her up for summer camp, so we will be looking for some fun things to keep her busy this summer. At the end of the summer, she will join cheerleading for the first time.
* Billy continues to work hard at work and home. He still works for Service Decorating about 50 hours a week and comes home and helps a ton. I don’t know how he keeps up with his energy, but I’m happy to have such a supportive hubby. We get to go out on a occassional date (since we have night nursing about 1x a week) and joke around daily tickling each other to make Ally laugh. She has a heart warming, soft giggle and her eyes light up when we chase each other around the house.
* I’ve restarted my Pampered Chef business and LOVE it! In my first 60 days, I’ve had about $3000 in sales from only 4 shows and 1 tiny catalog show. I’ve earned lots of FREE, new products for myself and earned a little $$$ to put towards the bills. It’s also nice to get out a little to do shows with fun people. Please, please, please consider hosting a real cooking show, catalog show, or online show…. you’ll earn some GREAT, FREE items for yourself while having fun with friends. If you can’t host now, you might enjoy some of our new products. You can order direct from my website at www.pamperedchef.biz/tina61775. Call me first as there might be unlisted specials or I might be able to offer a discount when combining it with one of my current shows. JUNE is an important month for me in my sales goals and with a $60 purchase, you get a free savory sauce valued at $10-$12. Sorry for the advertisement, but my best customers are family and friends!
And now the BEST part – PICTURES and VIDEOS!!!!!
Click on each album cover to see all the pictures. As you click through the pics, you’ll notice several small videos of all of our fun!!!!
Okay, that’s probably more than enough albums…. but in case you want more, they are ALL at https://picasaweb.google.com/tina61775
PLEASE let us know you had some time to read this update and check out some pics. We LOVE to hear from family and friends!!!!
Like this:
Like Loading...
Related
I have to admit that times can get pretty tough when dealing with SMA. I can get sooooooooooo busy dealing with school things, medical supplies, doctor appointments, phone calls to make sure people are doing their job for Ally…… doing the best I can for the girls. Sometimes the stress catches up with me and I shut down for a short time, but then I remember that I HAVE to keep going for Ally and her sisters to have the best life possible. I also keep in mind that I have family and friends who care and are there for us – THANK YOU!!!!
Angel Ally Blog - SMA Type 1 
Leave a Reply