Another Big Day for Allie Rae

So, tomorrow is another big day for Allie.  We have an appointment with Dr. Brown (the GI doctor giving us a 3rd opinion) tomorrow morning at 9:00 am.  This is our second appointment with him and we will be discussing what tests he would like to run on Allie.  Matt and I will then decide on what tests we would like to proceed with and when.  Of course it would be nice to get everything in before the end of the year - for insurance purposes, however like Dr. Rudoloph at Children's said, "you will be meeting your out of pocket amount for Allie for many years to come".  So, I guess if we don't get everything done this year, it really doesn't matter.

Of course I am very anxious for tomorrow mornings appointment.  I just finished writing down all of my questions and I came up with 2 1/2 pages chuck full of questions.  There are so many things I have questions about I'm not even sure where to begin asking them.  I will be so relieved when tomorrow is over.

I made the mistake of telling Allie she was going to the doctor in the morning.  I think I set myself up for a sleepless night.  Allie gets anxiety about the doctors and sometimes doesn't sleep very well the night before.  Even tonight she asked several times if the doctor was going to hurt.  The good thing is, most likely, Dr. Brown will barely even touch her tomorrow.  He might look at her mic-key button to make sure everything looks good, listen to her heart and lungs and that's about it.  These appointments are not for checking her out but more for listening to the parents describe what has been going on and observing Allie in all her actions, etc.  These are the type of appointments that I need someone there to entertain Allie because I am so focused on asking questions and listening to everything the doctor says.  I know tomorrow's appointment will be lengthy and overwhelming with everything that is discussed, however it could also be the appointment that we figure out what is or could be causing Allie to not eat orally.  So, to say I'm excited about tomorrow's appointment is completely an under statement!!!! 

Chloe also has a big day tomorrow.  She is celebrating Thanksgiving at her preschool.  All immediate family is invited but unfortunately, we will be at Allie's doctors appointment.  I feel so bad that we are not able to be there with her.  Seems like every time Chloe has something for school or dance, Allie has a doctors appointment.  This is a prime example of how having  a special needs child affects the whole family.  Poor Chloe doesn't always get as much attention as Allie.  But don't worry, Chloe will not be going to her school Thanksgiving feast without family.  Grandpa Ray and Grandma Mary came down and will be taking Chloe for us.  We are so thankful they were able to come and help Chloe celebrate Thanksgiving with her preschool friends. 

Allie has been doing pretty well the past couple days.  The last time she threw up was on Friday evening so 2 full days without vomit is a good sign.  She is still sleeping more than normal which is still a concern and I will be discussing that with Dr. Brown.  Due to her excessive sleeping, we haven't been able to get all 4 feedings in during the day.  I'm a bit nervous for her to be weighed tomorrow because I'm thinking she might have lost a little weight - but maybe not, you never know.  Allie's oral intake is decreasing again and she is having a harder time eating things.  She no longer can eat peanuts or M&M's.  For some reason it seems as if she cannot swallow them.  Not sure why that is happening but it is.  I was telling Matt tonight that overall, Allie's progress with everything is going downhill.  She is eating less and she is not able to handle the volume of feedings that she used to be able to.  So, of course this is a huge concern.  She really hasn't made any progress with her oral feeding or tube feedings in the past 6 months.  I would be a bit more happy if she remained steady and plateaued, however she is declining at a slow rate.  However, her speech is coming along great!!  She is talking in full sentences and goes on and on for hours.  It's still really hard to understand everything she says but she's working on it.  I'm so proud of her for all the progress she has made with her speech.

Well, below is a picture of what the girls look like right now.  I guess it's time for me to go to bed too so I'm nice and rested for our appointment tomorrow.  I'll update tomorrow afternoon with how Allie's appointment went.  I'm hoping to have a very positive update!!  Please continue to pray for our Allie Rae - thank you!

This is a new night light we bought each of the girls tonight - it projects on the ceiling.  I don't know why but I think it's really neat.

Allie sleeping peacefully - let's hope she stays sleeping tonight!

Poor Chloe sharing the bed with Snickers.  By the way it looks, Snickers is hogging the bed.

Good Night!!!!

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