Weight Gains and Extra Hours

Meeting with Metabolics at Children's Hospital June 16th 2010

Thank God!!! Our dietitian was changed!!!! Hurray! I really really really didn't like the other one. She was very judgmental. I know doctors are supposed to judge you, but she made it really obvious. She also accused me of having an eating disorder. Needless to say, we were very happy to hear we wont be seeing her anymore.

Parker didn't gain very much, I think it was a pound and a half since the last meeting with them in January. He is just over 18 lbs. They said he can now go to 7 hours of sleep. This made me very nervous and I don't think I will be letting him go over 5.5 hours until he hits at least 20 lbs.
When we saw them in January they told me to stay at 4 hours due to his lack of weight gain. And since he is only a pound and a half bigger, I don't feel comfortable going that long. She told me to do what feels right, because I have been doing a great job so far. I love her.

We also discussed his diet. Our pediatrician had told us to feed him fatty yogurt, avocados and put a bit of whipping cream in his cereal to help him gain weight faster. Our dietitian isn't thrilled and things because he has such a hard time breaking down medium chain fats, overloading him may not be a good idea. Plus, it's not really helping. So we are now replacing the fat with carbs. Lots of breads , potatoes and pastas. He is enjoying it, but Parker just enjoys food in general.

We had the usual blood test done. They took extra to send to my pediatrician and the hematologist. We are due for a blood test for them soon, so I was happy they took it then and I don't have to go back there in a few weeks. I hope that they can figure out whats going on with his blood. The unknown high red blood cell count is starting to scare me worse than MCAD. At least MCAD I can treat and I know whats wrong with him.

Parker got his 4th tooth in the other day. I wish I had camera batteries... he has had one top tooth for a week or so. He looks like a little hillbilly. Now that the fourth one is in it wont take long for him to look normal. He is walking around the furniture and once in a while stands by himself. It wont be long until he is walking. His first birthday is next month. I cannot believe how fast time has flown. It feels like last week I was finding out about MCAD and that my brand new baby might have it. The amount of stress and appointments has made this year feel like a month, but I am so thankful he is alive and I know how to keep him safe and healthy. Despite how I want him to be my baby forever , the older he gets the easier MCAD is to deal with.