This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Tuesday, February 21, 2012

Honest Emotions

There's really not a lot to say.... Nothing new to update with Lydon. He has done well since starting on the beta blocker. He had a good weekend spending some time with my mom and his "Paw-paws". As long as he is watching movies, playing with one of our phones, reading books, or playing calmly in the house all is well but as soon as he exerts any activity the symptoms reappear. Tonight after I got home, the weather was great. Not hot, not cold, not windy so I took him out in the garage hoping he could play for a little bit. He did play but after just a few minutes he started looking dusky around his mouth and the corners of his lips were blue. I let him keep playing on his car and horse until he got short of breath and then we came inside. I heard from the ENT scheduler today and it looks like Ly's procedure is a go for the first week of April. Unless something changes, our ENT's partner is going to look at Lydon's airway and then when he is done, they will start the cardiac procedure. I am trying really hard to stay upbeat and positive but it seems harder than ever. I hate the waiting and the unknown....I hate not knowing what to expect and whether or not this is going to fix Lydon's issues. I hate not knowing if these newly diagnosed issues are even what's causing his problems or is it disease process and no amount of medicine or highly skilled surgeon in the world could fix it! I guess time will tell. We are holding on tight to the prayers of others and what strength and faith we have. Somedays it feels like there isn't any left but then we get a silly grin or a sweet smile and our empty tanks are suddenly refilled.

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