I know that I have shared our 'tradition' of getting the boys a Thomas train after a more intrusive doctor's appointment. Today Shay had his third round of Botox. The purpose of the Botox injections is to numb the nerve endings in Shay's hamstrings, adductors and now gastroics which will temporarily eliminate the tone in his legs. Shay gets his injections every six months or so and the effects of the Botox so far has lasted around five months. The effectiveness of Botox injections may lessen with time - although our hope is that it will continue to be as effective as it has been for a long time coming!!!
While the tone is gone, we work hard at stretching Shay daily to try to maintain his muscle length. This is difficult when he is growing so quickly. We too word hard at developing the weaker muscles that tend not to develop because of the annoying and interfering tone...
I personally struggle with the Botox appointments - I hate to see Shay in pain - and I hate needles - so thankfully Cris has agreed to take these appointments on. Today I picked Shay up from school and drove him to ErinOak to meet his Dad. He knew that he was going to see Dr. Kim to get needles in his legs to help make them feel better (the last seven weeks or so - Shay has woken up nearly every single night in pain because of leg cramps). During the drive, Shay wore his brave face telling me that he was going to see Dr. Kim for his needles When we pulled into ErinOak, he flashed me the biggest smile, said goodbye and walked confidently through this doors with his Dad in his walker.
It was not until Shay got called into the room with Dr. Kim that reality set in and Shay's brave face was overtaken by fear. He began to cry knowing that he was about to endure a pain that he didn't wanted to endure - he was going to have 10 needles today injected directly into his muscles which hurt much more than a regular needle.
The tears quickly dried up after he had his 10 injections knowing that he could now leave with his Dad to get his newest freight train. His choice today was Hiro - which I felt was so appropriate for Shay as he truly is my Hero. There are many days that I wish I could be more driven, determined, and relentless like him. He exemplifies the true meaning of the word fighter on a daily basis - he never complains, he tries and tries again, the word "I can't" is not part of his vocabulary, and he doesn't pity himself.
Shay - thank you for being a fighter. Thank you for being a determined little soul. Thank you for being a competitive little thing. Thank you for always looking forward and never looking back. The first moment I met you - I reached into your incubator and you grabbed my finger with such might - it was at that very moment that I knew you were going to be a strong and feisty boy- and I knew that you would have the personality you needed to be successful in life. You have shown me these incredible qualities on a daily basis since your first day of life - I am so very proud of you and I hope and pray that you will always embrace the amazingly strong spirit that you possess.
I love you Shay Parreira - you are my hero :)