Thursday, September 29, 2011

Overdue Update

It's been a while since I"ve updated - seems as if time is going bye too fast. 

Allie is doing well.  Since our appointment at Children's Hospital the beginning of the month, we are slowly increasing her volume intake.  She was at 4 oz for each feeding and she is now up to 5 oz.  It's taken us a long time to get her here and there are times when I get done feeding her that she's gagging and telling me I fed her too much.  She doesn't actually throw up but it's close.  5 oz is the most she has ever been able to handle at a time - for her age, she should be able to easily handle 8-9 oz.  We will continue to work on it because if sometime down the road we want to enroll her in the two week feeding intervention, she needs to be able to handle more than 5 oz of food at a time.

Besides increasing her feeds, she is just getting over strep throat.  She had a nagging cough about a week or so ago.  I decided to bring her in and have her checked because she never shows normal signs of strep throat.  Sure enough, positive.  Good ole antibiotics took care of it though and she's feeling great.  Chloe also had it but she's better now too.

We are gearing up for next week.  We are heading to Children's Hospital of Wisconsin for testing for Allie.  She will have to be at the hospital Tuesday, Wednesday and Thursday for testing.  Allie will be getting a gastric emptying test (with her BD) and also an intestinal transit test.  She will also get an endoscopy with biopsies and a botox injection in her pyloric valve.  Praying the week goes smoothly :)

On a very positive note, Allie seems to be eating a little bit more these days.  She's really into the growing big scheme so every bite she takes, she climbs on the counter and says, "look how big I'm getting mom". She's so stinken cute!!!  It's nice to see her associate eating with getting bigger and stronger.  However, her growth is still a bit slow and the weight gain continues to be a struggle.  We'll get her there though.

Thanks for checking in and please keep Allie in your prayers for next week while she goes through additional testing, procedures and especially anesthesia.

Here are a couple pictures of the girls playing in the rain :-)

Friday, September 9, 2011

Upcoming Tests

In meeting with Dr. Tipnis (GI at Children's), he is recommending we do a couple more tests for Allie.  He thinks a lot of Allie's eating problems and low tolerance volume has to do with her gastric emptying.  Of course we don't know this for sure.  Allie has had two gastric emptying tests done previously and the first test showed a significant delay and the second test showed a slight delay.  It has been a year since she had this test and previously, the test was performed with liquid.  Now that Allie is on a BD, her stomach could be emptying completely different than before.

So, Children's Hospital of Wisconsin is now performing a new type of gastric emptying test with solid foods. Dr. Tipnis would like Allie to get this done.  In addition to this test, he will also do a small intestinal transit test which basically is going to follow the food go through her intestines and this will help determine if her intestines are working properly.  These two tests will take 6 hours.

In addition, Dr. Tipnis wants to do another endoscopy on her to look for eosinophils in her esophagus and stomach.  He would also like to give her a botox injection in her pyloric valve in case her valve is becoming week and that is delaying her emptying.

Since Allie can only handle a low volume of food through her tube at a time (4-5 oz), Dr. Tipnis seems to believe that:
1) Allies stomach doesn't stretch
2) She could have a neurological reason that her stomach doesn't stretch
3) Her pyloric valve doesn't open properly

There is no test to determine if someones stomach stretches or not, so the tests mentioned above are the next best thing. Dr. Tipnis would like to get these tests scheduled early October.

I haven't read a lot yet about the botox injection in the pyloric valve but if you or your child has had this, I would love to hear how it worked out. 

So, if we proceed with all the testing Dr. Tipnis is recommending, Allie will have a busy little schedule for a couple days. 

In the meantime, we are working on trying to increase her volume tolerance and we are increasing her feeds from 4 oz to 4.5 then 5 oz.  Of course the trick is to do this with NO VOMITING!  She's being a champ like always!

Thursday, September 8, 2011

Candidate for Feeding Intervention?????

We met yesterday with a team of Specialist at the Children's Hospital of Wisconsin.  The appointment was lengthy but a lot of good information was covered. 

As I suspected, at this time, Allie is not a candidate for the 2 week inpatient feeding intervention.  There are two reasons she's not a candidate:

1) She is not at a healthy enough weight.
2) She isn't able to handle a high enough food volume

I had a feeling she wouldn't be a candidate but now I know for sure.  Just because she is not a candidate right now, doesn't mean she won't be one in the near future.  We discussed the pros and cons of the 2 week inpatient feeding intervention FOR ALLIE (this is not the same pros and cons for every child)

She is no longer tube dependent or very little dependency

 - She can start vomiting because of higher food volume
 - She could shut down emotionally and refuse to eat more than she does right now
 - She could start upset vomiting - basically making herself throw up again so she doesn't eat
 - She could get psychological trauma - even though they claim this is rare, I have to believe it could happen to Allie.
 - The program could create more food aversions - they claim this is rare but it happens to some children.
 - The program is going to be very unpleasant for Allie and her parents.

Hmmmmm...... kinda happy she's not a candidate right now - lol.  There is nobody telling us Allie has to go through this program.  However, since Allie has every capability to eat orally, the best thing for her is to NOT be tube dependent and have her eat orally.  Is this possible right now???  We don't know and that's why we wanted to meet the team of specialist and see what they say about their program.  There is no doubt the feeding intervention program is amazing and they can wean children from the tube, however at this point in Allie's feeding/medical issues, I'm still not 100% convinced this feeding intervention is right for her.

The team did offer to help us with what they call a "slow wean" which from what I understand is we will have to travel to Children's at least once a month and we will work with a feeding and behavioral therapist.  This is considered outpatient therapy and most of the work would be done at home by us.  I'm a bit reluctant because we already did the outpatient feeding intervention (which is when we brought Allie to the Children's hospital for every meal for a week) and that program didn't help her at all.  I know this "slow wean" will be different but I'm still not sure it's right for Allie.

There is still the big issue being repeated over and over in my head.....THE LONGER A CHILD IS TUBE FED, THE HARDER IT IS TO WEAN THEM OFF THE TUBE.  I know this is true and with Allie already having her tube for almost 2 years, that is considered a long time, especially since Allie has every capability to eat orally.  But, I just keep reminding myself that being tube fed is not a bad thing so am I really that rushed to get her off the tube?  Sure, it would be nice if she ate orally every meal, but if she's not ready to eat orally, I'm okay with that too.

We haven't made any final decisions yet and there are a lot of other things pending out there.  I'm sure sometime in the far (or near) future, Allie will go through the 2 week inpatient program.  I think it will be needed before she is 100% tube free, however the big question is figuring out when the timing is right!!!!!

Tuesday, September 6, 2011

Children's Hospital of Wisconsin

Tomorrow we are heading to the Children's Hospital of Wisconsin to meet with the complete feeding team and Dr. Tipnis (GI doctor). Our appointment is to see how Allie has been doing the past year and also to determine if she is a candidate for the 2 week inpatient feeding intervention.

It has been a year since we discontinued Allie's medical care at the Children's Hospital of Wisconsin.  I have many mixed emotions about going back.  However, we are not establishing care there again, this is just to access Allie's medial state to determine if she is a candidate for their feeding intervention.

My gut is telling me Allie isn't a candidate for the intervention, however I don't really know.  If she's not a candidate, I'm guessing these two reasons are going to be why.....

1) She's not at a healthy weight.  She's still in less than the 3% for her age.
2) She is not able to handle a large enough volume of food at one time.

I'm anxious to see what the team of specialist say, however I am not setting any expectations as to getting any closer to a diagnosis for Allie.  I am not anticipating this appointment to be anything more than determining if she is able to go through the intense feeding intervention. 

Too many times we have drove a long distance to try and get answers and every time I leave with more questions than I started with.  So this time, I promised myself it would be different.  I'm not expecting anything out of the ordinary and I'm not looking for answers (unless they offer some possibilities).  I have only a few questions for the doctors but not a full list of questions - I'm going in with an open mind and I'm going to let them ask me questions for once.  We'll see how it goes.

I would like to thank everyone that donated tabs again for the Ronald McDonald House in Milwaukee.  We collected a lot of tabs from Delta County and surrounding areas - so thank you for continuing to save them.  Also, thank you to the Escanaba McDonald's for continuing to be a drop off location and allowing me to pick them up and deliver them to the Ronald McDonald House!!!! 

I'm looking forward to tomorrow's appointment and I'm anxious to meet Dr. Tipnis, he is one of the GI doctors at Children's that we have never met before.  We have heard wonderful things about him.  I'll update Allie's blog sometime after her appointment.  As always, thanks so much for checking in and following Allie's story!!!!
Chloe & Allie at Bay Beach (Allie our little fighter)