Truitt Update

Well when it rains it most certainly pours. Although its hard for me to complain too much anymore because after all he isn't having infantile spasms, things haven't been so good these last few weeks. On top of fussiness, constipation, teething and just not wanting to take a bottle we are beginning to see more seizures again.

It just breaks my heart. It makes me mad. Isn't the medication doing anything?! The hardest part is seeing him upset with them. After each episode he cries. I feel so helpless. I am now led to believe maybe this recent fussing is all due to seizures. Am I a bad mom to get frustrated over something he can't control? I don't get frustrated with him but the seizures. Why does my baby have to have seizures? Why can't he just be fine and live a normal life?

For heaven's sake he has them when he is excited, how cruel. A baby that can't be happy without having a seizure?! I finally annoyed the Neurology department enough that they let me speak with a nurse. After two messages put in and no returned call I put up a good fight. She says these seizures are nothing to worry about. They are due to the change in medication and the fact that he is not yet on his full dosage. So we are supposed to let him suffer until then I suppose. I can't help but be mad at everything. It is all starting to feel like a dream again.

I had another tough week. I just can't seem to shake this uneasiness I have been feeling. All of this therapy is really getting to me. I have to work with Truitt three times a day at home to help prevent his muscles from tightening. It makes me want to cry. Every time I do it, I think about how nice it must be to have a healthy baby. I can't let my mind go there but it does. The mind is powerful, I have learned that the hard way.

Truitt's physical therapist thinks he is doing very well. He continues to improve with his sitting and loves to stand. His arms are still posing the biggest challenge for him but he is making moves in the right direction every day. He is still unable to bring his hands together or to his mouth, but bless his little heart, he tries so hard. He has recently started to rub his eyes when he is sleepy and is getting closer to sucking that left hand. I have to keep looking at his progress and thank god I am able to watch him make those strides. Another day, another memory.

It is all happening so fast. I am trying to savor every moment and count every blessing. One day I will look back on these times and smile, and know we did the best we could. Truitt is worth it all, anything in this world I would do, for him.

I love you Truitt.