I find some of the most amazing blogs. Crystal’s daughter, Bentley, has Tetralogy of Fallot. Bentley was diagnosed at 2 days old and will be having her open heart surgery in May. Her blog really struck a chord with me because after surgery, Kyleigh’s cardiologist told us that what Kyleigh had was actually a half [...]

When is a child considered “Special Needs” or “Disabled”. When we look into the definition of these two terms, the dictionary define them as this: dis⋅a⋅bil⋅i⋅ty lack of adequate power, strength, or physical or mental ability; incapacity. a physical or mental handicap, esp. one that prevents a person from living a full, normal life or [...]

Yes sorry the pics of Kyleigh’s Dedication (a la Kevin Adams) shall be forthcoming soon!!! Today has been a not so good day. I spent all day doing surgeon stuff for me (for once) and got no good news to share unfortunately. Tonight after poking prodding and a half gallon of ingested barium I am [...]

Kyleigh is doing much better. We actually somewhat slept thru the night last night with the help of her swing. We also got a man nurse who came in and did everything he could at once. So, they only came in twice last night instead of seemingly every couple of hours. It also helps that [...]

Well yesterday was very hectic. Basically she did arch her back like the undead all day long. But today appears to be a new day. Late last night they fed her one ounce of pedialite and she went to sleep. Then, the started Dex shortly thereafter and she slipped into deep sleep. At that time [...]

Well… in the last 48 hours I feel like I have been to hell and back and to heaven and back and now I am lingering somewhere in the middle of a semi-drugged and hypnotic state. It amazes me that a mother can find within herself the strength of ten men, the patience of job, [...]