Wednesday, January 9, 2013

Changing things up for little Allie

Received a call this morning on Allie's stool sample.  There was no blood in her stool and there were no signs of inflammatory disease or malabsorption issues - yeah!  Her stool was perfectly normal, I guess as normal as stool can be.

We met with her Dietician in Marshfield yesterday.  It was a very successful appointment and we are changing things up for little Allie.  We are hoping to turn her into big Allie but I know that's a long shot. 

First change we are making is switching her formula to Pediasure Peptide.  This is an elemental formula which is pre-digested so her tummy won't have to work very hard to digest it.  It also has a lower fat content which helps speed up digestion.  We are hoping that with her gastroparesis, this pre-digested formula with flow through her system much faster - and eventually she will be handle to handle larger quantities at a time.  Allie used to be on an enteral formula a little over a year ago and it made no difference in her digestion, however she's older now so maybe it will help.

Second change is we are kind of going back to night feeds.  She isn't going to be using the pump, but she will be using a gravity feed bag.  We will hook her up at 10:00 at night and let 4-5 oz slowly gravity drip in for an hour.  The theory is that as some drips in, some drips out of her stomach also.  We are hoping this will allow for her to tolerate a little bit more formula.

Switching back to night feeds or even "extremely" slow feeds is taking a step backwards for us.  It will confuse her stomach because her tummy will not have the full sensation then the empty sensation.  However, at this point, it doesn't matter. What matters is getting more calories into her little body so hopefully she can gain back some muscle tone and grow - height and weight!  We have toyed with the idea of going back to night feeds with her pump,m, however with her gastroparesis, her tummy would be full by morning and that would throw our daytime feeds all off.  So, I think trying the gravity drip feeds for an hour is wonderful - I'm praying it works.

We are meeting again with her GI doctor in 2 months so hopefully she will have a good weight gain by then. 

Hope everyone is having a great 2013!!!

Wednesday, January 2, 2013

Bone Age and Blood Work Results

Allie's recent bone age test came back with a result of 3.5 years old.  She is now a whole year behind in growth.  When her bone age was tested a year ago, she was only 6 months behind.  Of course, these are not the results we were hoping for, however, it's something to work with.  What does her bone age test results mean????  Basically, she has a lot of room to grow!  It means that her bones are at the age 3.5 and they are suppose to be at 4.5.  Most likely her bone growth is delayed due to lack of nutrition.  Even though she has a feeding tube, we still struggle with getting enough calories into her on a daily basis.  This struggle is due to her gastroparesis along with her extremely small stomach capacity (3 oz at the most at a time).

Her blood work came back pretty normal.  Her prealbrium has dropped quite a bit.  This is her overall nutritional status. In August of 2011 it was at a 26 and now it's at 16.  The doctor wasn't happy about that number.  What do we do to raise that number?  We try to feed her more.

I made an appointment with our Dietician right away.  We are scheduled to meet her on January 8th at 2:45.  I am hoping that she can help us with figuring out a way to get more food into Allie.  I'm not sure what she is going to suggest, but something has to be done.  I'm anxious for the appointment.

We all had a very Merry Christmas.  We hope you all have good health and happiness in 2013.

Chloe, Allie & Baby Ashley