Tommy was doing so well with his Passy-Muir speaking valve. We even began to try tasting and swallowing. He loved blue yogurt. I dyed it blue so we could make sure it was going to his tummy and not his lungs. If it was in his lungs, he would cough out blue. Our cue he was aspirating again. He was learning sign language and was communicating with us. He loved to watch the Signing Time videos. He would clap his hands (to get our attention), point to the television and sign "sign". We would put him in his swing so he could watch tv and he would wiggle and laugh. Matthew, Brandon and I always watched with him so we could learn the signs as well and then we would use them.
Tommy didn't have to communicate his "needs". He didn't feel hungry because he was fed by a pump on a strict schedule (couldn't lose those calories!), he went to sleep on a schedule, he had medications on a schedule, therapy on a schedule. You get the idea. If Tommy communicated it was because he wanted something. He was very good at pointing to what toy he wanted. He'd also let you know when he was done with it because it was promptly thrown. Tommy loved to use his "words" with us, and loved we responded to his signs. His very first sign was "play". What a happy thing!
After that, the signs kept coming. More, All done, That's enough, Go, Sign, Play, Eat, JUMP! Yes, "jump".
I've touched on Tommy's developmental delays and how he had therapy once a week for pretty much his entire life. Tommy worked HARD on his physical skills. Rolling was first and he learned it was comfy to sleep on his side. He didn't learn to roll to his tummy until he was about 18 months old. After that, he was a tummy sleeper. Sort of. He liked to keep one leg bent just a little, but I do too, so I think that was just a little of me in him. After that, the big stuff started happening. Tommy finally learned to sit on his own! 18 months old and finally able to sit is a huge feat. After that, he learned to turn himself in a circle while sitting. We tried hands and knees, but he wasn't strong enough to hold his body weight. I managed to get him up once or twice, but it wore him out.
So back to "jump". Once he was able to sit on his own, we got him an exersaucer. His nurse had the idea to raise it all the way up so his feet just touched the ground, no slouching with bent knees. Wiggling to get his balance, he realized he could control the saucer and began to jump! His feet stayed on the ground for the most part, but he was jumping. He loved to bounce until fell asleep. Then he would cry because his poor legs hurt, then point and sign to jump again. While in the hospital, he had a therapy ball instead and would get hysterical signing "jump" so the therapist would let him bounce on the ball.
He caught on quickly to the signs. It was amazing when he was in the hospital for a procedure. The nurse had to draw blood. Tommy looked at me with tears in his eyes and signed "hurt". That was an elating, heartbreaking moment. But that was not the best sign he ever learned. From the time Tommy was teeny tiny, Matthew had been my helper. We had a routine every morning for getting our day with Tommy started. First, we layed his quilt on the living room floor and started gathering supplies and medications. A small basin of water, a change of clothes, things to clean and change his trach ties and a bean shaped pillow for Tommy's neck and shoulders. Once everything was in place, the two of us moved Tommy and his trach collar and tubing to the living room. We started at the top (trach) and moved our way down (diaper) until he was clean and dressed. This usually took about 15 minutes and Tommy needed to be distracted so I could change his trach ties without his trach coming out. Matthew would sit behind Tommy on the floor so Tommy would arch his back and look behind him (he had the pillow under his shoulders, so he was seeing Matthew upside down). Matthew would talk to him, sing to him, and hold his hands if he got to grabby. Matthew would sign to him "I love you" by crossing his arms over his chest. He did this every single day for months and months and months.
And then it happened. Tommy signed "I love you" back to Matthew! This was about the same time he figured out to give kisses and hugs too, so we know he knew what he was saying. Perfect love. We had settled into a wonderful routine. Our days were filled with chaos, therapy, doctor's appointments and love. If I could have one wish, it would be to live in June, 2008 forever. It was the happiest time of our lives.