Monday, August 31, 2009

Bad Blogger Mommy

Well, sorry folks. I don't have a whole lot to report. We are officially starting in on all of our fall doctor's appointments, so right now we are going to Chicago and/or Milwaukee or Peoria at least once a week.

We haven't been doing a whole lot. Lil Man has been kind of puny. I am choosing to believe it is because he has two teeth trying to squeeze into two tiny spaces. He has been drooly, and not very active as of late. We can't really put our finger on it, although he has started to sweat a lot and get clammy the last few days. We'll wait and see.....

Last week, we met our new pediatrician. We love her! She was able to call down nutrition for a consult while we were there. She really "got" Lil Man's issues, especially with his immune system. She said that she was going to flag his record so that unless it is an emergency, they only schedule us on days when we have another appointment. She said a minimum of two appointments or wait, to limit his time sitting in the doctor's office. FINALLY! We are also going to see a new pulmonologist at some point. While we love Dr. Rao in Milwaukee, it will be nice not to have to be in the car 24 hours for an appointment (up and back).

Tomorrow we go back to Chicago to La Rabida for wheelchair clinic. We haven't had his wheelchair adjusted in the two years since we have had it. :( He hasn't gained any weight, just grown in length. It is to the point now where they need to handle it. He is also getting an OT eval, kind of. The OT is going to be in wheelchair clinic. She is going to do some short evals on him to decide how to proceed.

Next week, is a big one. He has a swallow study at University of Chicago, Comer in the am and then we go to Rehab Institute of Chicago for another OT and Speech eval for Augmentative Communication Therapy! Whew!

The 15th we go to Milwaukee. We will stay overnight on that one. He sees Dr Rao (Pulmonologist) and then our big Immunology visit. We are eager to see what they come up with.

In the mean time, we are getting ready for the Buddy Walk. Anybody who is interested in walking with Christopher's Cowpokes, please let me know by Sept 15th. That is the last day to register to get a free T-shirt. Registration is free this year. I will do another post for that one in a couple of days.

Otherwise, we have big, exciting changes coming up. Sorry to leave you in suspense, but I just don't have the energy to post about it now and some of the details are not ironed out yet. More on this later.

Hugs!

Steph

2 Comments:

Blogger Lacey said...

Do you live in a small town or something? You have to drive so far for all of your appointments. Why do my blog friends keep having big secrets lately, its making me crazy:)

August 31, 2009 at 11:21 PM  
Blogger Cammie Heflin said...

Sounds like you are going to be very busy! Addy doesn't have Celiac either but the doc is running more tests on the 25th if she hasn't gained any weight. So far we have had one feeding with 2 oz. of Elecare and so far so good!

September 12, 2009 at 8:58 AM  

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