Sunday, December 23, 2012
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"!
Thursday, November 8, 2012
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.
Saturday, October 20, 2012
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,
Life is good!
Sunday, August 12, 2012
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.
Wednesday, August 8, 2012
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.
Sunday, June 17, 2012
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!