Taking a break

Yesterday Allie met Dr. Brown (her GI doctor).  It was a follow up from January to discuss all the testing she has had the last 4 months.

Allie gained 1.2 pounds since January so I was very pleased with that.  Keep in mind that Allie hadn't gained any weight from August 2010 to January 2011.  So, I was very happy with this weight gain.  I'm not sure how she did height wise because according to their records she shrunk about an inch or so - which I know isn't right so they must have measured her incorrectly last time. 

Here is what we discussed: (I'll keep it short and sweet - or at least try to)

1) Blenderized Diet - Dr. Brown agrees it's working great for Allie and wants us to continue it (of course I was going to no matter what anyone says)

2) Hydrogen Breath Test Results - of course her results were normal - they always are!!!

3) Review her neuro-developmantal evaluation done by an outside source - Dr. Brown was happy with her results and confirmed she is developing normally.

4) Discussed AMT Mini (the button known as her feeding tube) - Dr. Brown has no preference between the Mic-key button or the AMT mini.  He supports us if we decide to try the mini.

5) Mito Disease - Dr. Brown has NOT ruled out the possibility of a very mild case of Mito Disease for Allie.  At this point, we are not doing any testing but Dr. Brown said he's not ruling it out just yet.

6) Allie's excessive sleeping - yup, that's still a problem.  Dr. Brown previously suggested we wake her up after 1 hour of napping.  That is not happening.  When you wake Allie up from her nap, 4 out of 5 times, she's extremely upset and will cry for 2 hours straight.  No I'm not exaggerating.  When I wake Allie up, she is not my sweet girl, she's difference.  I cannot touch her, talk to her, move at all, she kicks me and screams for me to get out, etc, etc.  It's like it's not her when she acts like this.  Anyway, both Matt and I told Dr. Brown how awful this is for us and we don't know what to do.  I hate to let her sleep so long especially because she needs an afternoon feeding, but if we wake her up, she's stressed to the max and so are we. Allie is sleeping from 9:00 pm till 8:00 am and also taking a 4 hour nap during the day.  I know many people don't think this is excessive sleeping but I do and I'm still worried about it (but not overly worried).

7) Dr. Brown thought Allie looked extremely tan yesterday and he said that worries him.  Allie's always been a bit darker skin than the rest of us but he said it was more evident now.  He is having Allie's blood checked for an "adrenal insufficiency".  After doing some research, I am finding an adrenal insufficiency can be serious.  I don't think anything with Allie is serious right now - she's doing great.  A couple symptoms of this adrenal insufficiency are the following (which Allie has) - tan skin (with no tan lines), excessive tiredness, mood and/or personality changes (like when we wake her up from her nap) and short stature (she currently has).  There are many symptoms but these are just a couple I noticed right away that she had.  Not sure if I feel like Allie has this or not but it's a good thing to get checked out.  Not sure when we will get results but hopefully sometime in the next 2 weeks.

8) Dr. Brown didn't agree or disagree with the fact that I decided to enroll Allie in feeding therapy.  This decision was my decision based on the fact that the doctors cannot figure out why she doesn't eat.  Allie will receive eating therapy twice a week.  At this point, we will not be reducing her tube feedings we are just going to work on getting Allie to take a bit more food orally. 

9) Dr. Brown agreed to our plan on the oral food challenges.  He said it sounded good to him and to make sure we follow up with him and Dr. Edmonson (ENT) so they stay in the loop with what's happening.  Dr. Brown suggested that if Allie has any symptoms at all during a food challenge, he would like to re-scope her. 

So, what's my plan for Allie.  Plain and simple actually.  We are taking a break from testing for a while.  I told Dr. Brown that Allie needed a break and so did I.  It's time for Allie to start living her life doctor free (for a while).  She has gone through so many procedures, tests, blood draws, etc that we are just tired of it.  It would be different if we got answers but every time a test is ran, it comes back normal.  So, we are taking a break.    This is the first time in 3 years that I felt Allie was "stable enough" to avoid the doctors.  She is handling all of her feeds perfectly.  She has been vomit free since January and she is gaining weight.  There is nothing that could be more perfect right now (unless she would start eating).  Allie is doing great and since she is doing so well, I just want her to enjoy life the way she deserves.

Of course, taking a break doesn't mean a break from therapy or weight checks but those are easy for her.  Allie loves therapy because they have wonderful toys, books and games.  Actually she cries every time we have to leave therapy because she enjoys it so much.  As for weight checks, they take 5 minutes and we are out of there - so it's painless too.  Plus - Allie loves to get on the scale (silly girl).

Allie has her well child checkup scheduled for May 2nd - besides that, we plan to be avoiding the doctors for 3-4 months.  This is going to be a nice break for all of us and I'm very happy with my decision.  I'm grateful that I have this option because many families cannot make a decision like this, they simply have no choice but to continue life saving medical care for their child.    Don't get me wrong, we are not "giving up" on Allie.  I will never give up in finding a diagnosis and help for her, we are just going to live life for the moment and enjoy the simple things life has to offer.  Like I previously said, this is the first time in Allie's life where I feel she is thriving and actually stable.  I want to enjoy this time and celebrate how far we have come with her medical journey. 

Of course I will continue to keep her blog updated - just because there are no scheduled doctors visits doesn't mean nothing exciting is happening in her life :)

Here are some pictures of our silly family tenting in the basement (just for fun). The girls loved it - however, Matt and I didn't get much sleep.  Our tent was a 2 person tent so the 4 of us were quite cozy....

This is where we camped out

Daddy making smores over the gas stove

The girls enjoying their smores

Chloe and I love smores!

I'm still eating but of course Allie didn't eat hers

Girls excited to get all cozy

Allie and I right before mom fell asleep

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Private Therapy

We met Allie's new private therapist this morning.  Her name is Ann and she seems great.  Ann and I spent a lot of time talking about Allie's medical history and the different things we have tried over the past 2 years to get her to eat orally. 

Starting next week already, Ann will work with Allie on her eating therapy and also work on some speech. Allie will be seen twice a week for 45 minutes each time.  Her schedule is set for Tuesdays and Thursday's at 11:15 am.

I'm happy we were able to get this therapist because she is the one everyone recommended for feeding issues.  Ann is looking at retiring in the future but for now, she was willing to take our case.

After going through Allie's medical history, Ann looked at me and said, "Allie's case is by far the most difficult one I've ever attempted.  I haven't worked with anyone like her before.  She is going to be the biggest challenge in my career so far".  Hmmmmm.....that wasn't exactly what I was hoping to hear but I appreciate that she is honest.  For once, I would love for someone to tell me they can get Allie to eat orally.  Seems like everyone, doctors, nurses, specialists, and therapist, are intimidated by Allie and they aren't exactly sure how to proceed with her.  I'm hoping Ann is our answer and she has some tricks to try with Allie's eating therapy.

I wasn't planning to spend so much of our summer time at therapy, however if it helps Allie, we will do it.  I am a strong believer in therapy as I have seen Allie master occupational therapy this past year.  In addition, speech therapy has really helped her and she is now talking in full sentences.  It's still hard to understand what she's saying, however she knows exactly what she is trying to say.  So, if therapy is what she needs to learn better, then therapy it is!!!!

If you have a child in eating therapy, I am interested to see how it works.  Allie's will be individual therapy and it sounds like they will start with play activities.  They will make Allie take a bite and then she can play for a minute then she has to come back and take another bite, etc.  I'm just wondering if anyone has tried this technique and if it worked.  So, if you have any experience to share, please leave me a message or email me at berndt@charter.net - thanks!!!

In October 2009, Allie went through a feeding clinic at the Children's Hospital of Wisconsin.  Allie did not accept that way of feeding and the week long feeding intervention pushed her in the wrong direction - she left there eating less than before.  So, I'm happy to hear that this therapist will not be using that technique :-)

Allie continues to do great with her feedings and I am now real comfortable making her blends.  Allie continues to be vomit free which a wonderful thing!!  Tomorrow we meet her GI doctor for a follow-up.  I'm thinking our plan for the summer is going to be......AVOIDING THE DOCTORS!

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