Sunday, December 23, 2012

"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!


Thursday, November 8, 2012

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!

Saturday, October 20, 2012

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!

Sunday, August 12, 2012

Medical Updates


 I have been waiting to post until we were through most of Mia's medical appointments. This week wrapped up the last two we were waiting for. Let me start by saying Mia was a star patient for all of her doctors and earned every sticker they gave her (her brother and sisters too). Most of her appointments were two hours long and included numerous tests.

June 18th, we met with Mia's cardiologist. After an ECG and ECHO they found no tricuspid regurgitation or pulmonary hypertension which were present in the past. Nicolas and Samantha were huge helpers during the ECG and ECHO. The ECHO alone lasted over 30 minutes.  I was more than pleased and couldn't wait to call Dave to share the good news!

Two days later, Mia was seen by her endocrinologist. You may recall that, since last November,  we have been closely monitoring her height.  At that time, a lack of growth and blood tests showed a growth hormone deficiency that led us to a discussion around whether or not she should start growth hormone therapy. When seen again in February, Mia did have some growth but not enough to end our discussion. Because Mia is growing the decision to begin growth hormones is not so black and white. The endocrinologist said to wait and monitor some more. That brings us to the June appointment. Again Mia  had some height growth, below average, for sure, but at least it was progress. Just when things were looking better in one area, we were faced with another issue. In 11 months Mia gained 1 pound. At 24 pounds, Mia needs to increase her caloric intake. Mia is a fussy eater and has us jumping through hoops most meals. She will eat some meat if she can dip it in ketchup. Of course that usually turns into just lapping up the ketchup after taking 3 bites of meat. The one thing she LOVES is Hershey chocolate bars (yes, she is my girl!). Now we could feed her chocolate all day but what kind of responsible parents would we be? Well, the doctor said she can eat chocolate all day if that is what she will eat. Basically, Mia has permission to eat whatever, whenever! This is so crazy but is apparently what needs to be done. Because Mia is not taking in enough calories, there is no reason to be concerned about where the calories are coming from. She just needs calories any way she can get them. Our next appointment is in October and we will see how successful her new "diet" has been.

To end that week, we traveled to Syracuse to see the neurosurgeon. Over the last couple months I have noticed a slight increase in Mia's head circumference and some eye issues which can often be related to increased pressure. The doctor decided to adjust the shunt pressure to see if that would improve both issues.

That brings us to this week's appointments!

Monday we went back to Syracuse for our follow up. Mia's neurosurgeon had asked to meet Mia's twin and other siblings so off  I went with the four kids!!! Thankfully, a friend's daughter came with me and was a HUGE help! That appointment ended up being two hours with a trip over to the hospital for x-rays (nothing bad, just making sure the shunt was at proper setting). Anyway, the doctor saw an improvement with Mia's eyes, as had we, however, her head circumference remains slightly increased. She adjusted the shunt again and we will have a follow up in November.

Our last appointment on Tuesday was with the orthopaedic surgeon, also a very long appointment with multiple x-rays. Mia was extremely cooperative and good! Gabriella was very good too. The first x-ray showed a very alarming change in Mia's scoliosis but, after a second set of x-rays, the change was confirmed as being less drastic. Basically, we cannot determine anything until we see her next set of x-rays three months from now. If her scoliosis continues to increase rapidly we will need to figure out why. It is either a shunt/hydrocephalus issue or a spinal cord issue. If her scoliosis remains stable then we just continue to monitor her. There is a possibility she will have to wear a brace in order to keep the curve under control until she is old enough for surgery. We also discussed her growth issues at this appointment. The orthopaedic surgeon said he ABSOLUTELY would NOT recommend growth hormones. Her scoliosis will change so rapidly that they will not be able to treat it properly. So, that helps us make one decision easily. No growth hormones for Mia.

If you are still reading this, you are a Mia fan for sure! I know it is a lot at once but so much of Mia's medical concerns  are  "wait and see" . We usually have to wait an appointment or two before anything can be determined. As long as nothing comes in between, my next medical update will be in the Fall when she has had her follow up from endocrinology, orthopedic and neurosurgery.

Next post will definitely be more fun!!!!!

Wednesday, August 8, 2012

Better Late than Never

Time has gotten away from me and I realized I never posted the results of Mia's Marchers. As you can tell by Mia's smile, it was a great day!
Our team remains big, dedicated and generous! This year we set our goal at $7,000 and raised just over $8,000! A huge thank you to all who made this possible. It goes without saying that we could never do this without the enormous support of friends and family.


Making the day even more memorable is our team of Mia's Marcher's kids. They ran around, laughed and brought such joy to the day.

The boys enjoyed the bounce activities.

Cousins and friends made it an awesome day.

Nick and I ran our first 5K together. Awesome job Nicolas!!!! So very proud of him and so proud to be running for such a special cause and beautiful daughter. Kudos to friends and cousins who also ran with us.

Next year marks our 5th anniversary of Mia's Marchers! We hope to make it our biggest year yet and celebrate in a big way. We welcome anyone who would like to join us. Next year's Stroll will be held June 1st!





Sunday, June 17, 2012

Trying on Shoes


For many years I wrote IEPs and presented to CSEs for my students. Being only on the educator's side, I tried to put myself in the parents' shoes. Choosing my words carefully, I could only imagine how difficult it must be to listen to people talk about your child and where his/her weaknesses lie. I realize, now more than ever, that this was an impossible task. Although you can never walk in someone's exact shoes, walking in a similar pair allows perspective and understanding that can only be achieved through experience. I apologize now for ever thinking I could understand.

I consider myself a knowledgeable and very objective person. Mia has overcome mountains already and continues to climb higher than ever imaginable. I couldn't be more proud of her every achievement that she has had to fight for. At the same time, I am very aware of her social, physical and academic struggles. Too many times, I put my "teacher" hat on and write Mia's IEP in my head. So, how is it that I had such a difficult time reading in black and white what I had already written in my head?

Statements from Mia's Annual Review:
"Mia has been seated in the same spot at the same table for many months for snack time, yet still does not know where she sits. She also needs reminders to put her plate, cup and napkin in the garbage, another routine that has been in place since September.She requires prompting to complete familiar tabletop activities and continues to struggle with familiar classroom routines and the names of her classmates." "Mia presents with a severe delay in her adaptive/self help skills." "Mia is more likely to initiate social interactions with adults than peers...she generally plays "at the edge" of peers...mostly plays parallel." "At times Mia demonstrates difficulty remaining on topic for more than one to two exchanges and it is difficult to follow her train of thought." "Mia demonstrates a severe delay in gross motor skills. Mia continues to have difficulty with skills typically mastered at a younger age." "Mia presents with severe sensory processing delays. These sensory processing issues impact her ability to sit in circle, attend to directions in small and large groups, tolerance for different positions, a variety of noise, increased visual stimuli and acceptance of different touch experiences."

These are just some of the reviews that cut out a piece of my heart as I read them. Now, let me remind you, I was very aware of these delays/issues already. They were not surprises and I agree whole heartily with the review. The more accurate the report, the more likely Mia will receive the assistance she needs. I feel her teachers/therapist did an outstanding job writing this report and they did balance it with a tremendous amount of positives. I just cannot wrap my brain around why it is so much more difficult to read Mia's weaknesses than it is to think them. Is it because someone else sees it and that hurts? Is it because deep down I really don't want my thoughts to be right? Is it because I know what these statements look like in a classroom and how she is struggling? Or is it because black and white just hurts and there is no real explanation? Whatever the reason, it has given me a new perspective that can only come from experience.....from a new pair of shoes!

Saturday, April 28, 2012

A Picture Speaks a Thousand Words

By far, this year's visit to my Uncle's house in Florida was the best. Watching Mia walk on the beach, wade in the pool, fish and play alongside her brother and sisters was beyond words! Better yet, is the pure joy on her face .