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Archive for May, 2012

Ally update (one I sent to school)– Ally went to her orthopedic surgeon yesterday and she officially does have a fracture in her right hip (in September it was her left). This one is straight across and so they are just having her wear a LARGE splint across her behind and right leg for four more weeks and then more xrays. She started the splint last week when we saw another surgeon. She is dealing with quite a lot of pain with movement, so we are trying to do minimal. I’m VERY sad to say that I don’t know when she will be back in school. I’m hoping we will be able to attend a few days or 1/2 days before the end of the school year and 99% graduation, but she would remain in her stroller/wheelchair and diaper changes are super hard and painful. At this point we are alternating Motrin and Tylenol with codeine (not round the clock, but pretty often).

Nothing specific has caused her fractures, just regular movement can cause it since her bones are sooooooo tiny and brittle. We are actively exploring infusions to make her bones stronger since other sma kids are doing this around the country, but Childrens Memorial has not and hasn’t wanted to do them yet on Ally or sma children. We need to do something proactively, as its so unfair and heartbreaking to see Ally in pain (and also missing out on fun with her classmates and family).

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Happy Mothers’ Day to ALL Moms and Grandmas and those who help as mothers!!!

Shared this on facebook today, but also thought it might be good to blog my feelings on Ally’s site.  Part of the reason I have a blog is to share all the crazy, mixed, good and hard emotions of living a life with SMA.  I mostly try to focus on the positive and good things in our life, but also need to admit that not every day or week, or sometimes month is easy.  I AM blessed though and God will guide me.

Going through TOO many emotions lately… as Mothers’ Day is here (and I try to be the best mom possible for my THREE daughters, constantly advocating and fighting for Ally for medical and school things and helping her survive and live each day as happily and as healthy as possible (now 6 with Spinal Muscular Atrophy, but worried how many more Mothers’ Days I will have with her) and occasionally running out of fuel. Then I’m also trying to find a way to be the best mom possible with my little energy left for Melissa (8) and Kristyn (almost 16) and trying to give them enough attention and special love/time, but knowing its not enough at times. Lucky to have my mom and sisters to help some.  Also, VERY, VERY lucky to have Billy and also friends and family, but wish I could do more as mom of all 3 of them. Then, there’s soooooo many emotions as Ally has 1 month till she graduates from Kindergarten with a huge school celebration (and I’m still fighting so many battles there, but also having some amazing experiences and friendships for her). Will I get to see her at other graduations? I have high hopes for the future, but medical statistics and not knowing God’s plans scares me. ….. Just gotta focus on the positive and live each day to its fullest! Sorry to get so personal on facebook, but need to get out how I am feeling as too many tears (happy and scared) keep filling many of my days.

  I’m also praying hard and thinking of all of those Mommies whose children are in heaven, or those who’s mothers are in heaven. I don’t know what I would do without my AMAZING MOM, Carol Neumann Maruszczak or my girls. Cyber (((HUGS))) to all of you who have loved ones in heaven!

While I’m blogging, I should share some of our latest experiences/photo galleries….  Also need to remind family and friends about the IL Families of SMA Walk and Roll on June 10th.  We are looking for team members (so far its ONLY our immediate family registered and 4 donations in honor of Ally).   The “Walk and Roll” for Families of SMA is on June 10, 2012. We will be doing a 2.5 mile walk at Independence Grove in Libertyville, IL. The walk begins at 10:30 am (registration at 8:30 am) with events and fun before and after the walk. Please consider joining the Ally’s Angels Team as it is always nice to see friends and family come together for a special cause. You can even meet some of Ally’s other SMA friends. If you cannot join us, please consider making a donation in honor of Ally. We have a personal webpage

(http://www.fsma.org/LWC/Ally)

or you can give it to a family member. Checks are payable to FSMA. Remember, every $1 brings us one step closer to a CURE!

2012-05 Magnificent May
2012-04-24 Melissa 8th Bday
2012-04-24 Kdg Field Trip to the Shedd Aquarium
2012-04 AMAZING April and Easter

PS — Thanks for taking time to read my blog and maybe check out some pics.  We LOVE when you leave comments or say hello and even share about what you and your family have been up to.  Now that the weather is warmer, maybe we can see some of you soon!!!!    Tina and Family

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