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 :-)

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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!

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