Thursday, October 29, 2009

Halloween Parade!

Tonight we went to the Halloween parade at Wegmans. We were certain Jack was not going to wear his bumble bee costume. We pulled into the parking lot after talking it up the whole time and found a huge crowd! We got him out and he tried to run away from me when he saw his "bumblebee shirt". Philip and I were able to get him into it and once it was on he was fine! He even let me put on the hat!! Grandma made such cute costumes for both Jack and Claire. We are so proud of Jack!

Thursday, October 22, 2009

We have had a lot going on recently. We travelled to Texas to visit Grandma and Grandpa. We also were able to go to my brother's wedding where Jack was the ring bearer. We are so happy for Josh and his wonderful wife, Brandy! We also got to visit with Ben, Taylor, and we got to meet Raleigh. A lot of family came in town for the wedding and all of them were so happy to visit with Jack and Claire. I'm sure they were happy to see Philip and I too but the kids were the star of the show! It was also wonderful to see all of our friends. We had the opportunity to go to Aunt Tina's 7th grade classroom and talk to the kids about CHARGE syndrome and about what Jack's life is like. They were a great group of kids that had a lot of wonderful questions for us. Claire got sick during the trip and had to go to the ER. It was pretty scary for me but after 4 days she was back to her cheerful self. I want to say a big thank you to Doc for seeing Claire and making me feel at ease about everything! Jack could not have been happier to be with Grandma and Grandpa. We all had a lot of fun.

At 3 months Claire was really struggling to gain weight and was diagnosed with Failure to Thrive, which is very serious. She was only 4 ounces above her birthweight. We had to put her on formula and went through several weeks trying to find out which one was right for her. Finally, after getting everything figured out she has put on 6 pounds in the last 7 weeks!! That is a HUGE gain! When we left for TX she was just growing out of newborn diapers and by the time we got back she was in size 2! I was so glad that I took size 3-6 month clothes with us because by day 3 she couldn't fit into any of her 0-3 month clothes. She has filled out so much and looks so much healthier. She is going to be 5 months old next week! This time with her has gone by so fast. It seems like just yesterday she was jamming her foot into my ribs. :-) She rolls like crazy, is starting to sit up, starting to scooch on her tummy, and eating solid food. She is just growing up way too fast! We go see her urologist on Monday which will hopefully provide us with some much needed answers about her kidney defect.

Jack has had a lot going on. On the positive side, he is incredibly happy and picking up sign language like no one's business. I show him a sign once and he's got it. He is now sleeping in a toddler bed and has not had a single issue with it. We thought it was going to be trouble to get him to stay in his bed with the pulse ox but he has done great. The first night in it he acted as if it had always been his bed. He turned 3 on Sept. 16th! I can't believe how big he is!!! The problem is that he is still having these "episodes" and had one monday night that was confirmed to be a seizure. We started him on medication to control seizures today. We won't know for a few weeks what the effects will be. We'll be watching him pretty closely.

Here are quite a few pictures from the last few weeks. You'll notice how much Claire has changed!

She is such a happy baby!!!

Jack's 3rd birthday!! We had an ice cream sundae party for him.

Jack wearing daddy's hat being so good on the airplane!

Being silly...

Claire did great too! It was her first plane ride.

Jack in his tux signing "all done" with one sock on and one sock off! He's so handsome!

Jack at the reception with dip all over his face.

Grandpa and Claire

Jack loved to play in the fountain!

Jack and Grandma

She's already computer savvy!

cute hat!

Grandma and Claire

First night in his new big boy bed! It's a race car but in our house apparently it is a train..

Claire's first time eating at home!!

Jack watching Blues Clues upside down.

I went scrapbooking all day and this is what Claire looked like when I got back. Daddy said, "I thought she matched!!". LOL

Claire is a big helper.

First time in her big girl high chair!!

This is what we woke up to on October 15th. COME ON!!! It's not January!!!

Jack at The Magic Paintbrush, which is an art studio for kids with special needs. He had a blast playing with the tissue paper. When we first went he screamed at the fact that it was even on the floor. He has come such a long way!!

Jack, Claire, and our wonderful friend who happens to be Jack's nurse, Jill.

Right after this picture was taken she tried to eat that pumpkin...

Jack and Daddy playing with the train set on a Sunday morning.