Sunday, January 26, 2014

Month Full of Dr. Visits

Annalise and Bryce each have their own way of entertaining themselves while waiting for the doctors.  These pictures were taken while we were waiting for the Physical Medicine doctor.  Annalise had fun creating a puzzle with the blocks and Bryce had fun trying to kick over the bucket that held the blocks that Annalise was playing with.  He would kick it over and over and just thought it was the funniest thing. 
This is part of the mural that is going up on the walls of the new CRS building in Phoenix.  Annalise picked out this hot air balloon with Mickey on it right away.   They both love anything Disney.

Bryce and Annalise have had a very busy month.  In this month alone, Annalise has had 7 scheduled appointments and Bryce has had 3.   Unfortunately a couple of these appointments have led to other appointments being scheduled.

At every appointment that Annalise has had, she asked if the doctor was going to look in her ear.  Ever since her horrible ordeal in November, she is scared to death of having anyone look in her ears, for fear that it is going to cause a lot of pain.

One of these appointments was with the gastroenterologist.  There we found that Annalise had lost a couple of ounces and Bryce had gained a couple of ounces.  She now weighs 30 pounds and he weighs just over 40.  I wasn't surprised that Annalise had lost a little bit since she was so sick last November and really didn't eat much for about 3 weeks.  I was actually very glad that she had not lost more considering I have recently stopped using the pediasure they have had her on for so long now.  We are really trying to feed her more of the diet that I give Bryce since that seems to be helping him so much.  She is still eating by mouth and loves the taste of all things sweet so it is a little more tricky than it is with Bryce, but getting rid of two cans of chemical sugar water a day should help some.

Dr. McOmber scheduled a swallow study for Annalise just to check and make sure that she is still not aspirating food when she eats.  It has been pretty routine for her, every 6 months, over the last couple of years just as a precaution since eating/drinking has become more difficult for her as she fatigues easily.  Her studies have all been normal and I haven't noticed any new difficulties for her, so I figured this one would be the same.  It wasn't quite.

Annalise did a great job.  She sat up in the chair and ate all the cherry flavored barium food and drink they gave her...even asking if she could take the rest of the cookie with her.  Gross!  Okay, whatever.  She enjoyed watching herself swallow on the x-ray screen.  It was very different than Bryce's ever were.  He is always scared to death of all of it and cries through the entire study.  I always dreaded them, so it was nice that Annalise seemed to thoroughly enjoy herself.  Anyway, luckily there were no signs of aspiration, but this time around they did see a fair amount of penetration going on, which is basically when food or liquid does go into the trachea but stays above the vocal cords and then eventually (hopefully) moves to the correct place.  We will see what the doctor has to say about all of that this coming week. 
 This is the marble wall at PCH Mesa Campus.  Annalise had fun trying to count all the marbles.  I asked her how many she thought were there and she said, "ummm, maybe 30 teen!"

As for Bryce, our neurologist is concerned about the number of apnea episodes that he has been having and is wondering if possibly he is having some reflux that may be causing them.  We talked this over with Dr. McOmber and he agreed that this could be a possibility.  He is going to do a procedure that will measure the amount of reflux that is occurring in Bryce during a 48 hour period.  Since he will need to put him under to do this and since we had an appointment scheduled the following week with the pulmonologist , Dr. M decided to wait until that appointment to see if Dr. Woodward needed to check anything that would require anesthesia. The fewer times he has to be put under, the better.  Dr. Woodward does not, so we should be hearing from Dr. M's office soon to set up that appointment.

The pulmonologist does however want to do another sleep study for Bryce to check on the amount of apnea episodes he has during the night, how long they last, what type they are, etc.  Dr. N was glad to hear that we will be doing that because as part of the sleep study they attach electrodes to Bryce's head that will help us get another look at any seizure activity that might be going on.  So it will be good to check that out again as well. 

Outside of appointments, we have had some fun.  Yesterday was Bryce's Birthday.  I can't believe he is 7 years old.  It was a really low key birthday this year, but it did include singing the birthday song and lighting the candles many, many times since those are his very favorite part of a birthday celebration! 

Happy Birthday my big boy!