I went to gymnastics this morning with my youngest daughter Khloe and enjoy being able to do things with her one on one! Normally we have the gym to ourselves but since school is out for the summer the gym is full with gymnastic camps! It is fun to see all the little future gymnast perform, in fact it's funny to watch Khloe mimic some of the big kids! It also tore at my heart strings too because it brought me back to reality that Mylee will probably never be able to enjoy those types of activities on her own... I did however meet with a very special lady at the gym who teaches special classes at the gym for kids will varying disabilities. The classes are private and therefore will cost double in price to what Khloe's class costs but we will rearrange our monthly finances in order to make this happen for our princess! Mylee will be a part of the gymnastics world and I can't wait to buy her her first leotard!
We have been going through quite a rough patch the past month or so. My lee's behaviors are all over the place and we believe we may have part of our solution with the current medication to stabilize her mood. I don't believe it is the answer to everything we are seeing but it has made a pretty good change for the better at least for the time being! We haven't really seen any significant episodes like we saw a few weeks ago. And as strange as this is a little disappointing it also makes us very concerned! You see it is quite possible what we saw was not seizures and instead a stroke-like episode. No one can really be sure and we have been told to just keep monitoring. We are to return to ER when something occurs or if we see the behaviors increase to the height the physician saw first hand in her office a few weeks ago when Mylee was admitted.
We finally received a date for an appointment to see a new neurologist at Children's hospital. We will meet with Dr. J on June 16th. We are anxious to meet with her because we are fearful Mylee may be at a new baseline but also because we have heard wonderful things about her. She may be able to help Mylee not only with her neurological piece but the new issues with behaviors and Mylee's sleep patterns and sleep apnea issues which all go hand in hand!
Mylee will also be seen by her opthomologist on Monday to check for decline in her vision. We have been noticing her crawling into the walls and into stationary objects which she hasn't done before. We aren't sure if this is vision related or processing related issues in which case may be progression in her disease. Either way it will show a progression in the disease. We aren't sure which to hope for.... Please keep Mylee in your prayers. I want her to be happy always and to be at peace. And as long as I can see this in my child, I remain hopeful and myself at peace!
Looking back in time way before my marriage I remember watching an Oprah episode and seeing a little boy by the name of Mattie.... He was so cute and brave... He left an instant imprint on my heart... I have always been interested in fundraising and community service and both my parents instilled this wonderful trait into my life. In fact, to this day I try to live my life with these same virtues. I can even remember watching MDA telethon on television every year... Not realizing that one day I too would be faced with a child who battles this horrible horrible disease!! Mattie was an amazing little boy, he had a heart of gold and a profound spirit to life... That spirit lives on today and everyday!! Mattie lost his battle to his disease at a young age.... His words of Hope and Peace are expressed in everything he touched... Including my heart so long ago!
From the mouth of someone special:
"Think gently, speak gently, live gently, and the world will be touched gently with the essence of your existence.".
Mattie J.T. Stepanek
Xoxo,
Mylee's mommy
"Never Give Up"
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