Logan has the crud!

Well I have been sick with the "crud" since monday...fever/chills, body aches, sore throat. I tried to keep it away from the kids but it looks like Logan caught the "crud". He has a fever today. Is coughing a little more than normal and is just plain out of it. He keeps looking at me like "Mom, can't you make me feel better". I just pray this isn't one of those colds that spirals into pneumonia. I am going to New Orleans for work conference tomorrow and worry about him. I keep running worst case scenarios in my head. I have to keep reminding myself that Joel and my sister Jackie are plenty capable of handling a sick child. Plus we have lined up many different options when it comes to Logan getting sick. I have a husband who I have trained to be a nurse! He is great at it! Please send lots of prayers Logans way this week. Any illness for him is very nerve racking because we worry what could happen if he has trouble breathing and is too weak to cough. Some days I wish I could put him in a bubble to protect him from everything but most other days I just wish I could take him out to do what most 16 month olds do. He has yet to enjoy the new snow on the ground. I am sure the spring and summer will hold lots of outings and I can't wait!

Neurology follow up

We went to the neurologist for a check up/check in. He didn't have much to say other than "I am so sorry" about fifty times (Yes I am exaggerating!). No MRI needed because he doesn't think the risk of the procedure (putting him under) would outweigh the benefits. He said that even if we did the MRI we wouldn't find anything we could fix. We would probably see that his brain is not growing like it should. His head circumerance at 15 months compared to when he last checked it at 8 months is falling on the growth charts. It has grown, but for the persepective of the chart, it is not even close to what it should be at this age.

We talked about Logan's leg and arm tremors. I described them as being spastic movements that resolve when the extremity is moved to another position. He then further described it as clonus which is a series of involuntary muscular contractions and relaxations. He said it is all related to his undiagnosed metabolic problem. Not really anything we can do at this time other than reposition. We haven't been too worried about it because it does not seem to bother Logan but it is nice to know what it is.

All in all I walked out of the appointment sad. It is so hard to see another doctor give you that look of sadness. That look of helplessness that there is nothing they can do. He said we have lined up a great team for Logan which has been something I have heard time and time again from many doctors. That makes me feel good knowing that Joel and I are trying to provide the best for Logan.

As for our results from Mayo Clinic, we should hear back any day. Our neurologist said that skin biopsies take a long time. I will wait till the end of the month and if I don't hear by then I will give them a call.

On a happy note: Logan is now responding to his name. If he is laying on the floor with his head away from you he turns it and looks at you!! What a huge accomplishement for him. He is working so hard everyday and I know he gets frustrated when he can't do things. Lauren has been a trooper through it all and is such a proud big sister. She exceeds my expectations every day.

Thank you, thank you, thank you for everyone's support. All the kind words via facebook, at work, and on the phone have been wonderful. It is so easy to become isolated. I will continue to post updates and hope to have a Mayo Clinic update soon!!!! Happy upcoming Valentines Day!