A Dream Coming True

The Dream Factory gave a pizza party for Mia.  She was told she would be going to Cinderella's Castle and on a plane!!!!

Thanks to my sister-in-law, Kelly, and The Dream Factory, Mia's "dream" is coming true in less than ten days! Kelly referred us to The Dream Factory (a national organization run by all volunteers, except for 4 paid employees at headquarters) who grants "dreams" for children who are chronic and/or critically ill. With Mia's ongoing medical needs,  she has been granted her dream to meet Cinderella and go to Cinderella's castle!

It is still hard to comprehend. She is being given a 7 day/6 night stay at Give Kids the World, another phenomenal organization we are learning about. They are sending all of us to Disney, Universal Studios and Sea World. Give Kids the World is a 70 acre resort specifically designed for children with medical needs and their families. It has horse back riding, minature golf, fishing, a life size Candy Land playground and so much more.

 Needless to say, Nicolas and Samantha are extremely excited and the best part is, everyone is in agreement that they cannot wait to see Mia's face. Looking at the pictures above, I don't think we will be disappointed!

Celebrating Life, Perseverance, Dedication and Love

Five years ago we celebrated the miraculous survival of little Miss Mia!

Everyday we have celebrated her perseverance as we continually watch her work so hard to achieve what comes so easily to most.

Learning to sit up and hold head up.

 Learning to stand and walk.

    

Learning the ups and downs of hospital stays and surgeries.

Learning how to have fun.

Learning how to ride a bike!

And learning that life is not always about choices but survival.

And five years later, once again, we are celebrating our family, friends, therapists, doctors, nurses, teachers, case coordinators, social workers and strangers for their dedication and love they give so freely! So many times I have been told, "I give you so much credit. I don't know how you and Dave do it." The fact is, we do what parents do....love our children. We are no different than any of you. When your child is faced with challenges, you move Heaven and Earth to help them through as best you can. The reason we can do this is because of the constant support we receive from all of you. All our family, friends, therapists, doctors, nurses, teachers, case coordinators, social workers and strangers that have cheered us on, cried with us, celebrated with us, struggled with us, made meals for us, prayed for us, learned with us, taught us, cared for us, cradled us and allowed us to do a better job than if we had to do it alone. The credit does not belong to us. It belongs to you, to Mia's brother and sisters and to Mia. That is who has done all the work!

So, this year as we celebrate "Mia's Marchers", we invite you to participate in our annual Stroll for Strong and hope you will join us at our house for a celebration of all that you do for us.

Follow this link to joing our team: http://www.helpmakemiracles.org/index.cfm?fuseaction=donordrive.team&teamID=17731   Look how our team has grown!!!

Fear of the Unknown

Kindergarten registration...complete! A night of bawling my eyes out...complete! Pit at the bottom of my stomach....continuous!

Are kids really apprehensive about entering kindergarten? Or is it parents projecting their own fears onto them? The girls are oblivious as to what kindergarten means. It's my mind that can't stop thinking about what lies ahead. The bus. The cafeteria. Core Curriculum expectations. Making new friends. In addition, this will be the first time our kids will go to a district school. The halls seem SO big. Of course, Mia is a peanut so she already looks swallowed up.

There are the "normal" fears of your child starting kindergarten and then the fears that come with sending your child with a disability to kindergarten. As I think of how far Mia has come, I also think of all the challenges that she will face in her new school year. She will need a five point harness for the bus, assistance with stairs, balance supervision especially when  there are a lot of students around her and when she is on the playground and in P.E. class. Mia still wears pull-ups and needs assistance in the bathroom. I can't even imagine what help she may need in a cafeteria! In the classroom, Mia needs a great amount of redirection to attend to tasks. She fatigues quickly and gives up easily when tasks become difficult. This is only the beginning of the list!

Can you feel my anxiety? This comes with all the unknowns! Given Mia's challenges, will the girls ride the same bus? Go to the same school? Will the district continue to approve a 1:1 aide for Mia?  How much related services will she receive? Will they recommend inclusion or self-contained?

Then, there is Gabriella. She is going to be devastated when she finds she is not going to be with Mia! When we registered she said, "Mom, we are going to be so scared when we go to kindergarten. I will sit next to Mia so she won't be afraid." I thought I was going to lose it right then!

Here is my head...??...**...??...**...??...**! Of course, that is what moms do best, worry. I will feel better when there is a plan in place. "Better" being the operative word! I cannot wait until our meeting is scheduled and complete. Until then, I will try to keep my mind from spinning out of control!

On a happier note, here are my big girls!!!!

"Bracing" Ourselves for Year Four

It is so hard to believe that the girls turned four!!! In fact, the  "4" candle you see on the cake was originally a "3"! Dave looked at me and asked, "How old are your girls turning?" Immediately I replied, "4," and looked at Dave who was making eyes at the cake. OH!!!! Oops!! When I grabbed the candle at the store, they were still 3 in my eyes!!!! They had their first "kid" party with three friends and their cousin. We decorated aprons and cupcakes and had a great time!

Less than two weeks after Mia turned four, she received her scoliosis brace.  A co-worker suggested we give the brace a name. We thought that was a great idea seeing it will be glued to Mia's body 23hr/day for the next 10-12 years. Here are some pictures of "Sparkle"!

 

As usual, Mia has dealt with her new obstacle with the ultimate grace! She was an angel during the initial 2 hour appointment! The first week, we were to gradually get her used to the brace, just a few hours at a time. She complained quite a bit so we were really concerned that this wouldn't be very successful. She kept telling us the brace was too tight (it is fitted to be very snug and push her spine into alignment) and that her back was all better so she didn't need it anymore. She was also very frustrated with her new inability to maneuver. She could no longer pick up toys she dropped, get up in her chair, sit on the floor without falling back, etc. This was also a huge frustration for us! All her gains in OT and PT were lost. Just when she started becoming independent in some skills, it was taken away from her. It was absolutely heartbreaking to watch!

Here we are, just two weeks later and Mia is doing amazing! Although her ability to perform everyday tasks continues to be a challenge, she is learning new ways and taking it all in stride. Last night was her first night she slept with Sparkle. Not one complaint!!!!!! I can't say enough how much of an inspiration she is to all of us. Her siblings are in awe of her and how she overcomes her constant challenges. And as usual, Dave and I are having a more difficult time adjusting than Mia is.

With that being said, there are many concerns we still have and will be meeting with her orthopaedic surgeon this week. Our main concern is atrophy. The school is going to increase her OT and PT so she will be receiving both at home as well as at school. We will also be looking into outside PT. With Mia's underdeveloped core and low muscle tone, we are concerned that the brace will only weaken the little bit she has. In addition, Mia is not able to bend at the waist and is going to have to relearn how to do everyday tasks. We need to make sure we are doing everything possible to help her.

This Holiday Season, as usual, we are counting our blessings. Each day is a new day and we will try to face them with the same grace Mia does.

Wishing all our friends and family love, joy, hope and wonderful memories. Merry Christmas and Happy New Year!

Blessings First!

Mia's journey always reminds us to count our blessings first. Our most recent blessing came a few weeks ago at her last endocrinologist appointment. We were so pleased to learn she gained a couple pounds and grew about 2 inches this year!!!!! Although she continues to fall way below the curve, she is making progress. Her Hershey and Nutella diet is working wonders! Wish my diets were as successful as hers. Oh, that's right, they are! My chocolate diet successfully packs on the pounds too. If only my scale could afford to go in the same direction as hers.

Our second blessing came a few days before Halloween. Mia rode a bike for the first time! Don't get me wrong, she has been on several bikes and has tried to ride each of them, "tried" being the key word. Her short stature made it impossible to reach most trike pedals and her low muscle tone limited her ability to pedal with enough strength to propel the bike forward. Consequently, most sessions ended in frustration rather quickly. With Mia's new adaptive bike (specifically geared toward kids with physical needs similar to Mia's), not only can she ride it, she loves to ride it!!!!

Those blessings counted!

Mia's next challenge is not being counted as a blessing yet, although, we are trying to look on the bright side. Yesterday Mia's x-rays  revealed no change in her scoliosis since August. That is the bright side. The not so bright side is that her curve is very significant and something seen in a 12 year old child, not a 3 year old (almost 4). Mia will eventually need surgery but her orthopaedic surgeon does not recommend surgery until after puberty due to the fact that spinal surgery limits growth. Mia does complain that her back hurts. The fact that she is complaining combined with the significance of her curve, he recommends she wear a scoliosis brace. This will hopefully help slow the progression of her curve so we can postpone surgery as long as possible. The brace is a full back brace that spans from her chest to the top of her thighs. It is to be worn 23 hours a day, everyday, until she is in her "double digits"! Yes, I said 23 hours a day and double digits. As her parents, it feel more like a sentence than a blessing. We know it is the right decision but it doesn't make it easier to accept.

Here is a picture of a brace like what she will wear. She, of course, had the opportunity to choose her own design! It will arrive Dec. 7th and I will post pictures shortly after, I'm sure!

Dave and I always say Mia is such a trooper. She takes every obstacle in stride and deals better than we do. The truth is, we know Mia will have to fight for everything she has and does in life. She has already exceeded her potential and accomplished more than most her age and even older. We often think that it doesn't seem fair. However, we also know that things could be so much worse. After all, it's just a brace. It's not invasive. It's pretty stylish. And there are children struggling everyday with graver illnesses.

So, we will continue to count our blessings first!!!!! Then complain just a little!

Life is Good!

Yes, I am still here. Trying to find the time to write, without nodding off as I'm typing, has become difficult these days. Summer was busy all the way up until the end and school sure hasn't let us down either!

So, let's back up to summer. What a difference a year makes. This summer, day trips and family adventures became a little easier. We were able to do more and really enjoyed our days. As you already know, our summer kicked off with our annual Stroll for Strong Kids. 

And Daystar's groundbreaking!

We enjoyed many visits to the canal!

Went to the zoo with our  great friends.

Did a lot of swimming at home and at Aunt Leigh and Uncle Jim's.

Rode to Hidden Valley Animal Adventure in a big van Grammy rented so we could all ride together; 7 cousins, Grammy and all the parents. Fed animals from a tractor pull ride, picnicked and enjoyed a petting zoo.

Mia bravely took dance for the first time with her sister and cousin!

And ended the summer with a camp overnight (a first for Mia and Gabriella), where everyone had a chance to ride the ATV,  

cool off in a kiddie pool,

fish

and enjoy time by the campfire singing songs and making s'mores.

Our last trip was to the Buffalo zoo on Labor Day! Samantha was able to see her favorite animal, the giraffe, and everyone enjoyed being together for one last hurrah before school.

Those are just some of the many highlights of our summer. No big traveling  just enjoying the little things. It truly was a summer of family firsts, smiles, friends and family.

Then it was time......school! I was not optimistic that Mia would be receptive of school. Last September was a difficult transition and now we were coming off a fabulous summer. Well, we were so pleasantly surprised! Mia seems to REALLY like school this year. She comes home and tries to relay what she has done. Sometimes it is correct and sometimes not. Either way, she is excited to share!!! She already knows some kids in her class which she could barely do at the end of last year (and this is a new class). I sat in on her therapies and she is nothing short of amazing!

Life is good!