Monday, November 25, 2013

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!

Tuesday, November 19, 2013

GI Follow-Up

It's been a while since I've posted.  Allie was back on tube feeds for a short time while she started Kindergarten.  She had lost a pound within a couple days of starting school so we started her feeds back up.  I kept her on her tube feeds until she gained the pound back. 

She had a follow-up with her GI doctor today. The appointment went okay, not great but not bad either.  The last time Allie saw GI was on August 29th so it's been almost 3 months.  Little Allie hasn't gained any weight in the past 3 months - bummer!!!!!  She is hanging steady at 32.6 pounds.  I'm a bit disappointed but at least she's not loosing weight. 

Our plan right now is to give her another month without tube feeds and really try to encourage her to eat more orally.  I will be pushing her calorie intake daily.  If she doesn't gain weight within the next month, we may have to go back to some tube feeds, we will see. 

This Friday we see a new specialist at the Marshfield Clinic.  Allie will meet Dr. Rice, he's a Metabolic Geneticist.  We have been waiting to see him for over a year.  I'm anxious for this appointment.  I'm not getting my hopes up that we will get answers but you just never know. I'll update on Friday after her appointment to let you know if we get any new leads.

Allie now has a Wisconsin 504 plan for school also.  She got approved for the plan about a month into school.  The school is providing someone to be with Allie during snacks and lunch so they can monitor her and encourage her to eat.  They are also keeping a diary of what Allie is eating and drinking during the day.  Thank you to everyone at the school that is taking care of my little girl - you guys are doing amazing!!!

Allie is loving Kindergarten and she adjusted very well.  I'm so proud of her!

Allie always striking a pose