Alex and Maddy

Alex and Maddy

Tuesday, February 5, 2008

Alex is still not quite back to himself. For about 3 weeks now, he has just been off. Nothing I can put my finger on, just different. He is still sleeping a ton, he has been really pale, his eyes don't look quite right. He isn't sick though so we don't know what to make of it.

We are so excited to go to Houston next week and hopefully start getting answers to all of our questions. The Dr. we are seeing has gotten INCREDIBLE feedback/re​views from the parents who have seen her. She is very parent/pati​ent friendly and really cares about these kids. Dr's like this seem to be a dying breed, believe me!

Alex has been having a really rough time in therapy the last few weeks. Elizabeth and I have talked about it. We think some of it, is about wanting control, but some of it is just lack of energy. He has no desire to do anything that requires stamina. His frustration level is incredibly high right now. Once again, I think he just doesn't feel great, but we aren't sure why. Elizabeth is great with him. Her and I have the same temperment/​philosophy. We both push him to do what he must, but in a loving way. Sometimes you just want to pick him up and hug him though. It is such a struggle for him at times. As a mother, I just want to make things easier sometimes even though I know it isn't in his best interest.

We had an endocrinolo​gy appt this morning. He looked at me and said," I'm really confused...​I don't know why they sent you here". AHHHH! So he wants to talk to us/possibly see us back after we see the Dr. in Houston. Some of the testing he would normally do is contraindic​ated in kids with metabolic disorders so he wants Dr. K to decide what should/shou​ld not be tested. As always, the office staff loved Alex. Every where we go everyone falls in love with this little guy!

I changed Alex's button for the first time today! Alex did great (and so did Mommy)! I was a little nervous, but it was really easy. His belly looked so funny with just a hole and nothing there. Good thing we aren't squeamish! I made Bruce take pictures. But I won't torture everyone by posting that!

I am working with the pastor of caring and concern at our church to start a support group for parents of children with chronic health care needs. I meet with Leslie tomorrow and then we will put something in the church newsletter. There is definitely something special between Moms whose kids have to go through so much. We go through so many of the same struggles, physically, emotionally​, and financially. It is a very different friendship then "regular" friends. I have gained so much from friends all over the country, I figured it would be great to meet some people right here!

Please pray for safe travel/prod​uctive appts next week. We are not sure how long we will be in Houston. We are excited to go. We will be meeting some of our new "internet" friends down there. It is always a treat for Buggy to meet other kids like him. They love to compare feeding tubes and play and talk.


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