One of the biggest life changers for us has been that we no longer have to clean up his poop and pee multiple times every single day. Forcing him to wear underwear and use the toilet is finally paying off. He still needs prompts to remind him to go, but he is so close to being completely potty-trained at last! I can't even begin to express how proud I am of my little guy for this major accomplishment. Many of the children with his syndrome really struggle with toilet training.
Growth Hormone therapy has been one of the best decisions we ever made on Matt's behalf. He turned from a sluggish child to an energetic one literally overnight. This has carried over into his response to therapy as well. He is able to focus better and for longer periods of time. When I get home from work he actually runs to meet me at the door and hug me. I had resigned myself to the fact that I would probably never get that type of a greeting from Matt-man. My heart overflows with joy and thankfulness each time I see him running to me with open arms. What an incredible blessing to this mother's heart. It has taken 4 1/2 years. He is also physically growing taller from the Growth Hormone. He grew as much in the past 3 months as he had grown in the entire year previously! It is a huge relief to see his growth curve turn around. He is not fazed by the daily shots, and non-medical dad has taken on the responsibility of giving him his injections every other week. I'm proud of them both.
We are tossing around the possibility of integrating Matt-man into a typical preschool part-time this fall to prepare him for kindergarten next year. If we do, he will have one of his behavioral therapists with him to guide him. I hope this will work out. I'd love to see him integrating more with neurotypical children.
Speaking of integration, Matt-man is on his first ever tee-ball team!! He is on a team with his 6 year old brother, Nate, and many of Nate's classmates. They are all very protective of Matt-man and extremely helpful. He has a lot of difficulty with the mechanics of fielding, throwing, and hitting the ball, but that kid sure loves to run the bases. He has a look of pure joy whenever he gets to run with his very unique gait. I think it puts a smile on everyone's face to see him running with all of his might and a grin on his face!
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The biggest thing on my mind this weekend in regards to Matt-man is that he is happy. He works so much harder than the rest of us just to do the activities of daily life which causes some frustration, but for the most part he is smiling and giggling as he goes through his day. He loves his brother and sister more than anything else in the world. He loves to sing and bang on the piano. He loves his sign language videos. He loves our chronically misbehaving beagle, Lucy. He adores a good dirt pile full of dump trucks. He doesn't seem to worry at all about what others think about him. He loves to wrestle with dad and get tickled to pieces. He begs daily for a "nice, warm bath" with his siblings before bed. Perhaps my favorite thing about him is that he loves to curl up on my lap and read book after book after book.
I wish life was easier for Matt-man and that he didn't have some of the medical issues (such as the growth hormone deficiency, recurrent ear infections, hypotonia, feeding difficulties) and sensory processing issues that come with his syndrome, but I am conflicted on whether I would ever want him to be fully "cured". So many of the things that we have come to love about him are intrinsically tied in with the 15q24 microdeletion syndrome. He just wouldn't be our same little Matt-man without these traits.
Pray that he would continue to improve on his toileting and communication skills and his other activities of daily living; pray that God would continue to give us patience and understanding as we deal with all of our children each day; and pray that God would continue to use Matt-man to make a positive difference in the lives of all of those around him in his own unique way.
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| Matt-man, age 4 1/2 yrs |
