GI Follow Up Today

Allie met with her primary GI doctor (Dr. Brown) today.  It was just a follow up appointment to make sure things are still going smoothly for all of us. 

Allie weighed in at 27.2 pounds and is 35" tall.  She's doing great!!  She's still quite short and is in the less than 5% but at least she's holding her own.

Allie started Cyproheptadine about a month ago.  This medication is suppose to stimulate appetite if used in very small doses.  Is it working????? It's hard to say because her oral intake is still so random.  There is however no doubt that she's eating slightly more than she did a year ago - so that's a plus. 

Until recently, Allie was drinking her elemental formula (pre-digested) E028 Splash, however she will no longer drink it.  She is now drinking chocolate milk and that's it.  Dr. Brown gave us some samples of the Boost Kid Essentials 1.5 cal.  Allie used to be on that stuff a while ago and she actually liked it.  We would also tube feed it to her but that's when she was vomiting at every feeding.  So, we'll see if she will drink it again - if so, that would be great because it's got a lot of the good nutrients and it's high calorie.

Allie's blenderized diet is still going great.  In January, it will be 1 year that she has been on the BD and VOMIT FREE!  Looking back, one of the most draining parts of Allie's journey so far has been the fact that she vomited every tube feeding for a little over a year.  Parents and children can only handle so much vomiting - my heart goes out to all the parents and kids who continue to deal with vomiting everyday. 

Two months ago, we started adding "Duo-Cal" to Allie's BD and to what she drinks orally.  So far it's given a nice boost to her calorie intake.  I have made the decision to keep her on it for now and see how she does with gaining weight.  Of course, she continues to struggle gaining weight so I'm hoping the Duo-Cal will continue to help us with this.  I don't like adding supplements to Allie's food but since I cannot increase her volume at this point, I need to make her food more calorie dense. 

So, our appointment went well - really nothing new happened.  It was a short and sweet appointment and Dr. Brown was very impressed with Allie's progress.   We go back in 1 month for a weight check and then we see him again in 2 months. 

We are going to continue on the path we are on and just pray one day either Allie eats enough calories or the doctors can figure out why she doesn't like to eat orally.

Allie brush your teeth!

Silly Chloe Ann

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Blood Work Results

While we were at the Children's Hospital the other week, one of the doctors requested that Allie get a full panel of blood work done.  This was requested because Allie lost weight that month.  They were thinking she was dehydrated and malnourished.  They didn't come right out and say it to my face but they were implying it and were definitely not happy she lost weight.  Of course, I was more unhappy that she lost weight because I had worked so hard to make her gain.  I was mad they would even suggested that I would allow Allie to be dehydrated or malnourished - I love my little girl more than anything and I strive daily to keep her the healthiest that I can.  I of course agreed to the blood work because I knew it would prove she is healthy!!!!

I got the call last Friday with the results and here they are:

Iron - 70 (normal is 44-142)
Ferritin - 12.8 (normal is 10-60)
Hemoglobin - 12.1 (normal is 11.5 - 14.5)
Hematocrit - 35.8 (normal 33.43)
Electrolytes - normal
Metabolic Panel - normal
CBC - normal
Vitamin D - normal
Vitamin B12 - normal

Everything in the normal range!!!!!  However, they are saying her iron is a bit low and they want to discuss that with me further.  I have yet to call the doctor back, but according to these levels, I'm thinking she's doing great.  I'm going to get a copy of the blood results sent her to her primary GI doctor here in Wausau and see if he thinks her iron is an issue or not. 

So, as I suspected, Allie is doing great (inside & out).  We are continuing to keep her on 4 bolus feeds a day with 5 oz each time.  The BD is still working great for her and we have had no vomiting issues.  She no longer drinks the E028 Splash (predigested formula) orally, she only likes chocolate milk now.  I do sometimes use the E028 Splash in her BD though.  Allie started preschool and is loving it.  She also is fully potty trained now - finally!!!!  She's has grown up so much the past couple months it's amazing.  Of course she is still strong willed, demanding and down right sassy but would I really want it any other way????

Silly little Allie

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