Addy's Little Walker

Addy has been using a standing frame and gait trainer for over a year. Her PT decided to go ahead and discontinue these since she is now pulling to stand on her own and cruising. She brought over the cutest little walker! It's just your basic old lady walker as my mom would say it! Addy LOVES it! It is extremely light so she can maneuver it really well! She pulled up on it on her own tonight and was cracking up as she walked across the living room! She is such a stinker, if her PT puts her at her walker she acts like she's being tortured! As we all know, Addy will do anything when she decides it's her idea!!Addy is also about to get new AFOs, she is finally outgrowing hers. When she has them on she won't do any gross motor activities on her own, she'll just sit and crawl a bit, so they are staying off for now. We're hoping that she will graduate up to some Sure Steps, they aren't as bulky!(Please ignore the slobbery and exema covered face!)

Upper GI

Addy had her upper GI and small bowel study this morning. Once again not much info was found. She does have an area of distention that the radiologist believed is from her duodenal atresia and subsequent surgery to place colostomy and then take down. She did have some significant reflux and air in her abdominal cavity. She is swallowing a lot of air, which we knew. What we do about it, I don't know yet. I'm so hoping we find something to help!

DownsEd Conference

I went to Kansas City yesterday for a conference by DownsEd. It was sooooo informative! I left so inspired and excited about things I am going to do with my students at school and especially excited about the things we are going to do with Addy at home! All of the speakers were from the UK (I really want to talk like them!) and they have a center that solely works with children with Down syndrome. They have their children reading at age 2!!! Yes, reading! I ordered Addy this

and this!

I am so excited about them coming! You have got to go check out their site, I am soooo excited! Did I mention that already??? I ordered them this morning and already have email confirmation of the shipment!!! I ordered a few other things too but I am most excited about these kits. I am also going to order some Jolly Phonics cards and start a program with her on that too. I was amazed at the videos I saw of these kiddos, it was wonderful to see!

I also got a call from Dr. Tummy's office yesterday and her x-ray was abnormal. It showed distention and air in the belly (no kidding!). So he ordered an upper GI and small bowel study. She is going to have it done on Monday morning. I'm hoping they figure something out to help her poor belly!

New Tubes

Addy had her ear tubes placed again this morning. We had no problems at all. We did leave extra early since once again we are covered in icy snow gunk! Addy was her wonderful little self, flirting with all of the male nurses, doctors, and especially the anesthesiologist, he was definitely her favorite! That is until he put that darn mask on her face! I'm glad I got to stay with her when they put her asleep, she was very calm and content!

I don't know why the even try to put a bracelet on her, it's quite pointless!

Watching Dora the Explorer before we go.

Okay Mom, I'm done, let's go!!!

Uh Oh

I think we're in trouble!

So Funny

It is so funny to see Addy upright! It is cracking me up! When I left her this morning her hair was in a braid and when I got home it was in a side punk ponytail, how cute is that??

Pre-Op

Addy and I spent two and a half hours at the hospital this evening getting her pre-op stuff done. The poor RN taking all of her info had no idea that it would take forever to get a three-year-old's medical history! I don't understand why I have to give the same information every time we go to the hospital. Can't they keep all of her history in a nice little file on the computer? They put everything into the computer, why can't it just stay there??? So frustrating! Anyway, Addy is all set for her Myringotomy on Monday. Such a big words to describe a five minute surgery to place ear tubes! This is her second set, the others lasted for over two years so hopefully we are good to go for awhile. Once we got pre-op done Addy had to be re-"admitted" to the hospital so we could drop off her stool samples and have her abdomen x-rayed. It took quite awhile to get the x-rays done since they had two precious students working that completely underestimated Addy's strength. I finally had to step in and say "You have to HOLD her, she obviously can move and get away! You're not going to hurt her by holding firmly!" The x-ray tech was quite impressed with the amount of air in her belly. Shocking huh? I'm really hoping Dr. Tummy will be able to give this girl some relief!!!

Tired of being busy!

I can't believe I haven't blogged much! Ugh! Saturday I turned 39, that blows my mind! I don't feel like I'm going to be 40 in a year! I remember when my parents turned 40, I thought they were so old! I spent the majority of the day doing an indoor garage sale fundraiser, but it was fun since I was with my BFF Susan! Scott and the kids took me out to eat at Chili's and to Andy's Frozen Custard for dinner, yum! Scott also bought me a new cell phone. I love it! It has a touch screen and a full keyboard, I'm pretty happy with it. If only I could learn to use it a little faster! I also got to see Jake play a basketball game, finally! I've missed the first several due to scheduling conflicts with the other kids and such! He hustled really well and I was very proud of him when he helped a player from the other team get up off of the floor. They totally got their behinds kicked but they had fun!

So much news on Addy! This girl is amazing! She is now saying "hi" and "bye"!!! I am soooo happy! I have it on video but I don't have my video upload thingy hooked up so video will have to wait! She is also pulling up and cruising! It's so funny to see her just pop up and go after seeing her on the floor for two and half years! (I know she's 3, but remember, we didn't get her until she was 9 months old! Ignore the trash and misc. junk under the couch :)). Jake wanted me to add the picture of her static electricity hair just because it was extremely funny to watch her make her hair go up and down!


We have had snow and ice stuff forever it seems! I really thought we would be out of school today, the roads were horrible but we still went. There were several slide offs and accidents so I'm hoping that if the roads are like that again in the morning we will be called off! The wind chills are below zero at times so there's no chance of melting soon!

I took Addy in for a weight check today and to pick up the orders for her x-ray and stool sample for Dr. Tummy. Addy weighed 23lbs and 13oz!!!! Woo hoo! She is doing soooo well! Here is a picture of her last February:


and here is a pic this week! Awesome huh???

Dr. Tummy and the tub

Well Addy and I spent an hour and a half to meet with a doctor for about five minutes. I do think I like this doctor, but I felt like I wasn't given any information. He didn't really look at Addy's tummy but he did listen to it for quite a bit. He was inquisitive about her stool pattern. Considering there is no pattern, that's pretty tough. So he's ordering an x-ray and a stool sample. What's he looking for? I don't know. When will it happen?? Don't know that either. He didn't prescribe any meds so I'm guessing that there's nothing she can take until he figures out what's wrong. We've tried a couple of pro-biotics but she ended up with severe vomiting and diarrhea so those are out right now. So we wait. He only comes to Springfield so I have a feeling this is going to be a long process... sigh.

Signing "ice cream", pretty sure that's not going to be a useful sign for quite some time!

Onto the tub news.. at first Addy just pointed to it and went "Uhahah???" Once I put her in it she was a little unsure but then she was totally fine, until she wanted to lay on her belly. She likes to "taco" as we call it here and splash. With the pummel in the middle of the tub she couldn't lay down like that so she was a little miffed but I think she got over it because she could splash quite a bit and Jake came into play with her. She absolutely adores him! After her bath we totally lotioned up head to toe. Her exema is still going crazy on her little face, it was just about gone then we got that cold snap again, poor thing!