Disappointing Weight check

Yesterday Allie had a weight check with her GI doctor.  Allie has been tube free since since May except for the beginning of school when we had a slight set back and went back to tube feedings for a couple weeks.  It has seemed like Allie has been eating pretty well so I wasn't nervous about this weight check, I was actually feeling pretty confident it was going to go good.  However, I was wrong.

Allie's last weight check was on 12/20/13 and she weighed 33.4 lbs.

Yesterday (2/5/14) Allie weighed 32.6 lbs.

She lost almost a whole pound.  Not good..  I'm not sure yet what the doctor is going to say but I'm sure he will be calling.

Praying we can continue to be tube free and he will give us more time to try and have her gain weight by eating orally (if that's possible).

In any sense, in my eyes........this little girl is a sign of true beauty.  Here she is this morning getting ready for school.  There was something about her standing in her jeans supporting her feeding tube, I just had to snap a picture.  I'm so proud of this little peanut.

No - Allie was not wearing a star in this photo - I just added it to cover her up :-)

Appointment with Metabolic Geneticist

Allie had her appointment on Friday with the metabolic geneticist.  Four doctors were there for the appointment and Allie was very scared.  She didn't say one word during the whole visit. 

The appointment went well but unfortunately we didn't get any new information.  The doctors were impressed with the way Allie looks and happy to hear that she is eating orally.  She is staying consistent on her growth curve for her height, weight and head circumference.  She is at the 2.22% for all three.  No doubt she's a tiny little peanut!  At least she is following her own curve and not falling.

They did not have any new tests they wanted to run on Allie.  They basically said that she had a complete genetic makeup previously so they didn't feel there was anything more they could test for. Since she is stable at this point, there is nothing more they can do.  We were fine with that because she is doing well and of course we didn't want to put her through a blood draw if we didn't have to.

Looking ahead, both Geneticists want us to keep an eye on Allie for any developmental delays.  We need to especially watch her academically.  Right now she is slightly behind in her class.  She does not know all of her alphabet or many of her numbers but she's learning them.  The Geneticists said that you will often see developmental delays in kids like Allie during Kindergarten and first grade so we have to watch her closely.  If we see any delays, they have additional genetic testing they will do right away.  I'm just proud of Allie because she went into Kindergarten not knowing any of her alphabet and she already knows about half of them.  Allie has made such great progress since the beginning of the year - she is really proving to be a rock star in my eyes!

So, for now we keep moving ahead.  We continue to try and get more calories into Allie so she gains some weight.  She is doing amazing and continues to share her spunky little personality!