Annabelle's Blog: Last year of preschool

We had a fantastic and busy 3 weeks off from school. Went to the zoo a few times, traveled to Silver Creek NY for a wonderful fundraiser (TJ Joy Ride), beach, parks, a few birthday parties, and went to Seabreeze for the first time (small amusement park here in Rochester).

The zoo is always fun, the last few times Annabelle got to play in the stream. We have never went into it in the past because her balance wasn't very good and I was worried about all the other kids. She loved splashing around and even decided to sit down in the water (diaper and all).

The TJ Joy Ride is a great fundraiser we go to every year. A friend lost her son who also had PMG in 2010 (a week before his 3rd birthday) from SUDEP. He had a seizure in his sleep and stopped breathing. After he passed they learned about seizure detection matts, which can be put in the beds and detect a seizure. This way if life saving measures need to be taken they can be immediately. Unfortunately insurance doesn't pay for them and they are around $1,000. This fundraiser raises money to buy matts for families who need them but can not afford it. It's a cause very close to our hearts, obviously. Brian rode in the dice run and Annabelle and I went down with some friends for the auction and fun.

Annabelle absolutely loved Seabreeze! They have a small rollercoaster and she rode it probably 10 times. She also rode all the kiddie rides and we went to the water park. Because she's only 36 inches tall she couldn't ride the big roller coaster or the log ride. She was so very disappointed but I told her she will probably be 38 inches next summer and she can ride them. Such a fun day with friends, I'm hoping maybe next year to get a season pass so we can go more often.

School started after labor day. Annabelle is in the same classroom as she was the past two years. We love Miss Laurie and all the paras and therapists. I'm going to be so sad at the end of the year, I can't even think about it. She loves school, everything about it. I also found out that she is "mothering" some of the younger kids like her friends Julia and Kaitlyn did for her in previous years. We are so proud of this, such a "typical" thing at her age! She started riding the bus this week on Tuesday and Thursday home from school. She's so happy she gets to be like the big kids in our neighborhood although she rides a van and was disappointed it wasn't a big bus LOL.

Annabelle's weight was increasing nicely. We were so happy, she's up to 26lbs 14oz! Unfortunately, a few weeks ago we had a swallow study and found that she is silently aspirating some of her solids and liquids. What that means is that she will swallow a solid, like a cracker, and it will sit in her throat. A typical response would be to cough until you coughed it up or swallowed it. She just sat and waited for the next bite. She doesn't have enough muscle to feel that it's stuck in there. Then she took a drink and it went into her lungs instead of her stomach, again no coughing. This means we are heading for surgery to have a G-Tube put in later this month. We meet with the surgeon next Tuesday and I'm hoping they schedule surgery quickly. It's so stressful waiting, I worry about her choking all the time now.

Overall, with everything going on we are still just so proud of Annabelle everyday. She has become a spunky little girl with a great sense of humor. She can make people laugh without saying a word and brightens our world every minute we are with her!