Infusion 38 October 26, 2012

We are off to a rough start today. 4 pokes. :( Chelsea just couldn't get it today. She said her veins were good and she wasn't moving or anything but she just couldn't get it to take. She felt awful and she usually gets it on the first poke. I was sick about it and Avery was so upset. We stopped and took a break and had a snack and a sucker before the 4th and final attempt. Phew..we are up and running now and things are going great. She had grapes and peanut butter toast for lunch. She also had blue chips and bunny graham crackers for snacks. We've watched tons of TV so far and are currently watching Barney. A nap is in the near future for Miss Avery! Today more than ever....I wish I could take Pompe away from her. She is such a brave little girl!

Avery Kay turns 3

Avery turned 3 on October 8th! What a reason to celebrate!! Our gift to her was a trip to Disney on Ice. Avery loved it! Daddy, Mommy, Mya, Avery, Mandy, Lillian and Ross all went. The show was amazing and we followed the show with dinner at Rainforest Cafe. The girls all loved it!
Avery's birthday party was on Sunday, October 7th. It was a Halloween themed party. Lots of family and friends came to celebrate with us! Avery is one lucky little girl! Lots of amazing gifts and so much fun!

Avery going head first down the slide!

Invites, thank you notes and most pictures taken by Crawford Creations

Infusion 37, Oct. 11, 2012

This infusion went great! 1 poke and no tears. I was like the perfect day. It went really fast and smooth! Avery even had an over an hour nap! We didn't turn the TV on once because we were so busy playing. Chelsea brought Avery a birthday present that included play doh, an Elmo puzzle that we put together a thousand times :) a little Elmo computer, and the book Brown Bear, Brown Bear. Avery loved everything so much!!

School days, school days!!

Avery is doing AMAZING in school! She is just a little singer! She literally comes home daily singing a song. I love that her teacher feels that singing these songs is so important. Avery is really, really quiet...at first. She didn't talk for the first two days of school and finally on the third day the teacher and helpers said she finally talked. That doesn't surprise me at all. One reason I'm so thankful for all the music. If she feels she can't talk as much then singing she must do! The first two weeks of school we feel Avery regressed in her speech at home. She was talking a lot of baby talk and just making sounds. We thought it could be from several reasons and really had us worried. Should we pull her out of school...is this more harmful than not? I talked to her OT at school as she said she noticed no difference in her at school. So this was just happening at home. Was it her age, was it her being away from Momma, was it because this school thing was so new to her? We also thought maybe it was because she is in such a diverse room with so many different "disabilities" maybe other kids not talking or talking like a baby or using sounds influenced her?  Well after all that worrying it was just a short phase and we may never know why. She is back to being chatty. Today her teacher and every single helper personally told me that she literally would not stop talking today. AWESOME!! I really just feel like she is getting so much out of this schooling and to think I was considering not sending her or maybe pulling her out. She knows all the names of everyone in her class and talks about them and wants to have them over for play dates! Adorable! She is repeating things that I would never say, good things that I know she is getting from there. LOL! I am SO proud of her! Avery's strength, her ability and the devotion that she has is 100% incredible. She doesn't stop and loves the bus and school! Remembering, she is only 2! WOW!!!

Infusion 36, September 28, 2012

Friday this time. It was the smoothest, quickest infusion ever. One poke with a few big crocodile tears :( then we were on our way. Wade held her this time again which is a good thing. She is getting really strong. Avery ate her usual peanut butter toast, blue chips and whatever else she wanted!! We played play doh for awhile and of course that made Avery so happy! She did really great at carrying her backpack everywhere she went. She even knows that she has to get her Elmo backpack before the infusion starts! So cute! It seemed to go really super duper fast! It is so nice to be home doing these infusions.

Infusion 35, September 13, 2012

Thursday infusion..and we tried it after school. I was hesitant to do an infusion after school because I thought Avery would be way too tired. Well, there really was no difference. It was a rough start this time due to two pokes :( Wade was holding her thank goodness. It really wasn't Chelsea's fault ..hard to explain but the thing that you pull down on that pulls the needle out once the iv is in stuck so we had to redo. NOT GOOD. Poor thing. We were all sweating and Chelsea felt so bad. Bottom line is we got it on try 2 and the rest of the infusion went great. Avery just had lunch then took about an hour nap, same as usual. It was nice that she didn't have to miss school to get her infusion.