Annabelle's Blog

Thursday, October 1, 2015

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!

Kaitlyn's birthday party at Sweet and Sassy

walking the runway

Annabelle at the sunflower field

Helping mommy clean

This is supposed to be a video but it won't post,
still cute of the girls dancing to Taylor Swift

warm and sunny day

Annabelle, Natalie, & Julia on the rock wall

Julia, Natalie, and Annabelle peeking down from the rock wall

Annabelle and Natalie at Bills Training Camp

Ready to go for a ride

First ride at Seabreeze

Ready for the TJ Joy Ride

Jason proposing to Annabelle (at least that's what it looks like LOL)

New pool, she loved playing in it!

Old pool can be used for shaving cream activities

Annabelle and Jason on the first day of school

smelling flowers with Natalie

good friends <3

This was the roller coaster she LOVED!

train ride

Meeting TJ's sister Nevaeh

my little puppy

playing in the stream at the zoo

fun at the beach

First day on the school bus, coming home.
Annabelle was disappointed it wasn't a yellow bus

Annabelle and Ella, best of friends

Friday, August 14, 2015

Summer update

So many of my blog posts focus on more of the positive side of things, all the great things Annabelle is doing and the progress she has made. That is just the type of person I am, try to always look at the good. The past few weeks has tested my strength to focus on the good.

A few weeks ago on a Sunday evening we landed in the ED because of a mistake I made while making Annabelle's dinner. I used a hot dog bun that had dairy in it (the other blue packaged buns do not have dairy, I bought the wrong ones). Luckily she knew something didn't feel right and told us. Brian gave her the epi pen but we had to go into the ED to be observed. When the epinephrine wears off children can have another reaction if it's still in their system so it's very dangerous. Luckily we were home by 9pm and all was ok.

The following Thursday after a fun afternoon of swimming at a friends house Annabelle started getting very fussy and upset then threw up. She was lethargic, wouldn't stand and acting very strange. I called the after hour doctor and they recommended we go to the ED to make sure it wasn't a UTI, appendix or that she aspirated some water while swimming. After 4-5 hours they decided it was just a GI bug. It was the first time Annabelle had a bug that included throwing up so it was new for both of us. All of our friends are amazed that she has never been sick, especially with being in school since she was 2.

This brings us to Monday, September 3rd. We had a GI appointment after school, just a follow up to make sure all is well. Annabelle was weighed, as she is at every appointment she has, and was just 24 pounds 9ounces. Her weight went down a little, possibly because of her being sick the previous week. They were very concerned with the lack of weight gain (less than a pound in over a year) but her height is still growing. We started discussing a G-Tube, something that I have worked extremely hard to avoid. She also put her on Periactin - an appetite stimulate. I immediately started talking to people I knew with kids that had g-tubes. If it was necessary I would accept it, it just seemed so drastic. After accepting all the facts and the possible future she has started gaining weight - a lot! The 5th she was up to 24lbs 14oz, 10th she was 25lbs 14oz, and on the 13th she weighed in at 26lbs 4oz! I'm so very happy with this, if she can continue gaining weight we won't have to go down that path of surgery and g-tube.

So we are just praying that she keeps gaining weight, her allergy to milk decreases and we don't have any more reactions, and she stays healthy. In the mean time, we are done with the summer program at school so now we have 3 weeks off to enjoy some free time. We have a few little day trips planned but nothing major.