GI Appointment

Yesterday Jake and Addy and I headed up to St. Louis for Addy to see her GI specialist again. When we went for her 5 year check up her ped wanted to get her into GI before our scheduled appointment in February so she called and got us in super quick! St. Louis is about 3 and 1/2 hours from here so I took Jake with me so I'd have someone to talk to on the way home since it would be dark and I'd be tired!

When we first saw the doc I was getting pretty frustrated. She is the doc we saw last spring and I adored her. She was very different yesterday, however, she is very pregnant so I'm blaming the change on that. She came in and just asked what was going on and then replied "So pretty much what was going on in the spring?" She went on to talk about how we did the barium enema and it didn't show too much and there's really nothing wrong. Addy's bloated belly is behavioral!!! I'm pretty sure the look on my face was not pretty because she then decided to come and examine Addy to see if she noted changes from the spring. She said that her entire abdomen is full of air (no kidding) and all of the gas and belching has to come out somewhere. I asked her about trying a blenderized diet with Addy and she said that she wasn't familiar with it and had never heard of trying to put those types of food through a g-tube. She thinks it will ruin the tube. I know my face spoke volumes, I really couldn't believe what I was hearing. BEHAVIORAL and NEVER heard of a blenderized diet????? The behavior that she is referring to is this: You just need to see the first little bit to see what she's doing, the rest is just a poor demonstration of her knowledge lol

http://www.youtube.com/watch?v=fWjZZRYVvWg


Addy sucks on her tongue when she is tired and at other times too I guess. I don't notice it too much during the day but it is quite often at night. She swallows air while doing this and appears to be causing the distended belly. However, in my opinion I don't think it has anything to do with the inconsistent bowel issues. Fortunately she must have decided that I wasn't happy and told me she wanted to go and consult with the other GI to see if there was anything else we should look into.



After about 30 minutes she returned with another doctor. I can't remember his name, I'm going to have to look it up because I was pleased with him! He started off with going over Addy's basic history and making sure the info he had was correct. He checked Addy out and agreed that the air in her belly is pretty much everywhere. He also saw the tongue sucking thing and said it could be causing some of the issues but we have some options to look into. Praise the Lord! He is proposing three things to do. We won't necessarily have to do them all but they are possibilities. His main question was why was I so pleased with Addy's formula. She takes Elecare which I usually refer to as liquid gold. Long story short, after finding out Addy was starving and could not handle a milk based formula this was the only other option left and she did fantastic on it and was finally growing and thriving! He said that Elecare is really only for people with short gut syndrome or severe food allergies. I knew this but felt all of her reactions to milk products was how we got to the Elecare anyway. He said that he doesn't think that Addy has short gut or food allergies. She has had a blood test for food allergies and it did show that she wasn't allergic to any foods, including milk. So he wants to try to change her formula first. He wanted to just put her on Pediasure. I'm pretty sure I freaked a little bit, her history with milk products is not pretty. So he decided to start her on Peptamen Junior. That's been an ordeal trying to get that today so I'll have to finish that quest tomorrow hopefully. If the change in formula after 7 days changes nothing he is going to put her on an antibiotic which does not absorb into her gut but will kill all bacteria that could be in there. I can't remember the name of it but it's not Flagyl because she has been on it several times. If the antibiotic does nothing he will then attempt a test where Addy "drinks" a sugary substance and they will measure her breath for sugar, oxygen, carbon dioxide and other things. He's not sure she's a great candidate for the test because of her oral aversion and the fact she has DS, otherwise known as stubborn :) So all in all I'm happy that we at least have a plan of action here. Now just hoping we are able to get the formula soon so we can give it a try. We are going to try it on a weekend just in case she does get really sick on it, I don't want to be away from her. When she does have a reaction it's not a pretty thing :( really praying she doesn't react!

So after our 2 hour appointment we start to head home in the rain and then the sleet! It was a long trip home but fortunately we made it home safely :)

Decorations are Done!

We put up the tree after church today. It was kinda sad without Jarika! But I smile thinking that she is putting up her own tree in her own place :) I'll have to take her to the half price sales after Christmas so we can have stocked up better for next year!

Addy thoroughly enjoyed swinging the ornaments around!

People that know me know that I DESPISE pix of myself. I have lost 86 pounds (I gained 3 while on break!) since my surgery in July of 2010 which is great but I'm at that stage where I am not seeing it. I just see YUCK when I look at pix. I feel a little better when I see the before pix but I don't see much difference. I should. I've gone down 5 sizes in pants but only one in tops. So irritating! I want to post when I hit that 100 pound mark but it will probably be after the new year. However, Scott got a couple of pix that don't make me vomit too much!

Scott was rubbing my feet (I'm such a lucky girl!) and Addy put her foot up for Daddy to rub too! It was beyond cute I tell ya!

Happy Thanksgiving!

What a wonderful day we had today! We went to my sister-in-law's parent's house and had a huge meal with a lot of family! My nephews moved back to St. Louis a few months ago and it felt like I hadn't seen them in ages! Only my oldest nephew, John, was here and Addy was so happy to see him! He is her FAVORITE!

(Addy kept saying cheese but wouldn't look at me so none of us could quit laughing!)

Jarika and John :)

The weather was perfect! The kids played and played and played outside when we weren't eating! They will all sleep very well tonight!

All twelve kiddos!

I hope everyone had a very blessed day and enjoyed their family as much as we did!

So far behind!!!

Addy after church this morning, she was too cute not to share!

I have been such a blog slacker this fall. It's not like I don't have good reason though! The first two weeks of October were filled with pneumonia and then I had my tonsils out on the 1st of November. I hate that I haven't been posting what I'm thankful for each day in November and I completely missed 31 for 21 in October :( Since I am healing very well, my doctor called me a Rockstar Patient I think I may finally be back in the world of my blog! Not a whole lot of blogworthy things have happened since I've been down and out but I do have a little bit to share.

Addy started ballet and tap class on Halloween :) I only have pix of her first day. It was really nice that day because she was the only student there! We got to know Mrs. Jennifer a little bit which was great for Addy. Mrs. Jennifer is amazing! She has worked with children with special needs and is really sweet. She's going to be a great person for Addy! There are about 5 girls in her class, all of whom are five years old like Addy :) Addy seems to really like the class so far (she's only been twice, she had to miss once during my recovery). The problem we have is a sensory one of course. Addy is not a huge fan of things on her feet, therefore ballet slippers and tap shoes put her intermediately into a drop and stop mode. When she was one-on-one she did get her to get up and walk a bit with her slippers on. Tap shoes, not so much. Last week she would not stand up at all the entire time! We were hoping her seeing the other girls up and moving would encourage her but not so much. We are just going to give it time and see how she does! She is not in dance class to become an amazing dancer (which I know she could be :), but she is there for socialization, motor skills and language development. All of which is so important for her. I'm so thankful that she is given the opportunity for this, I know she's going to love it!





On Wednesday we took Addy for her 5 year check up. I cannot believe this tiny little girl is FIVE!!! She weighed a whopping 27lbs 4 ounces and is 36 inches tall :) She isn't on the typical growth chart and I forgot to look at a DS chart, she may be on it now! She was able to do all of the developmental things they asked with the exception of fine and gross motor things such as writing shapes, jumping, drawing a person, drawing a letter, hopping etc. She knows her colors, shapes, letters, numbers, counts to above 20 and one to one beyond 12 most days, follows directions etc. She's totally on target for preschool academic skills, she's above many of her peers :) We are still working on playing appropriately with things, playing with others, and HOLDING THINGS IN HER HANDS! She does not like to hold things very much at all. Music therapy is pretty much trying to get Addy to hold her instrument for at least 5 seconds before chucking it. She doesn't use both hands at the same time either. We have to stop her from telling the other kids it's their note to play (she does love her letters!)! If she has something in one hand and you give her something else, she drops what was in the first hand, very frustrating indeed! We are working on all of these things and the playing is improving. In the mornings before school I give her a choice of just three activities that she will be playing with in the afternoon after school. For the last few days she has chosen her grocery cart and play food and she is playing with them! Very pleased to see that! There is hope!

She's blowing kisses :) Have a blessed day everyone!

Lilly

I love this precious little girl. I am her Christmas Warrior this year. I am hoping and praying that I can have enough donations in her grant fund that someone steps up quickly to adopt her! She needs surgery. Here is a little bit about her:

This little one has been waiting SO long. This gorgeous little blondie has a significant heart defect and needs to see a cardiologist. She is doing ok for now, but definitely needs a family quickly! She also appears to have strabismus. She has the most beautiful eyes!

Update Fall 2011- She is not mobile, does not speak, but she takes food from the grated bottle (bottle with top of nipple cut off, so thicker liquids go through), and can understand some things. Despite her conditions she can still smile, but doesn't know how to play with toys and throws them.

This description just screams I NEED A FAMILY! Please click on the right side of my blog to make a tax deductible donation to her adoption grant fund. If you donate $35 you will receive a beautiful Christmas ornament with Lilly's picture on it. I have donated to several orphans for the past few years and I LOVE my ornaments, especially since they all have come home to families since being on the Angel Tree! That is my hope and prayer for Lilly, she deserves a loving family to help her become a happy, healthy little angel that she is!

Halloween Pix

Short post. Pix of Halloween Cooper was SAM from the book "Gone" (actually I think he's just Cooper wearing jeans which RARELY happens, Jake is a Raiders fan and Addy is Rachel of course!) I had my tonsils out today and I'm doing well, just resting!