Alex and Maddy

Alex and Maddy

Tuesday, September 6, 2011

On the Road again...

I feel like this is the story of my life recently and I am pretty sure Brucey would agree! We stop in briefly to do laundry and restock meds and supplies, but I feel like I have spent the last 6 months living out of a suitcase!

This time we are in our second home...Houston! We drove in bright and early this morning. We were hoping our GI would have a cancellation today and be able to squeeze us in, but he didn't even have clinic. OOPS! Alex has a sleep study tonight which he is less then excited about. We have only done one sleep study almost 3 years ago and it was traumatic to stay the least. For a child with sensory issues there is nothing fun about eeg leads that smell and oxygen cannulas. Luckily we are 3 years into this journey and have been through much worse. At this point Alex is on oxygen almost every time we are in the hospital so he isn't nearly as freaked out as last time. I just hope he keeps us the brave face once we get there tonight!

Tomorrow, we see our immunologist and pulmonologist. The allergist/immunologist is one of the main members of Alex's health care team. One of the doctor's who knows him best. So Dr. K wants her opinion to weigh in on what we should do regarding Alex's weight loss and hydration issues.  On Friday we see GI and then they will make a decision. We have been told by numerous people to expect to be admitted.

At this point we will let the week play out. I am unsure how long we will be in Houston. Hoping for a quick turnaround and some quality time in our own house!!!

Ali

PS- I guess I should say he is doing fabulous on the new med. The first two doses caused some stomach pain, but since then we have had no problems.

2 comments:

  1. Yoi had his second sleep study on staurday night and it went really well. In colorado they do desensitization for about 3 months, where you come in and practice putting everything on, then take canulas home and practice with them and anything else that is hard. It was amazing how easy it was for him this time even with the sensory issues. He fell asleep in five minutes.
    Good luck!

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  2. That's my boy (and my baby girl, too)! I hope you have a satisfying week and you get the responses from Dr. K and Dr. P and Dr. N that you are looking for! Luv you both. Mimi

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