Tuesday, November 10, 2015

G-Tube Surgery

After a long week we are finally home.  On Wednesday, November 4th Annabelle had surgery for the placement of a feeding tube (g-tube, PEG).  Everything went smoothly and the surgery took just over an hour.  She was in a bit of pain while waking up but we were there with her to give lots of hugs and kisses.

We moved upstairs and found out that she would not be allowed to eat for 24 hours.  She didn't understand and it was hard since she kept asking for milk and food.  Every nurse that came in would ask "is there anything I can get you or you need?" and she would sign eat or drink.  I think she thought maybe one would finally give in.

She has been tolerating her feeds great, no issues at all.  The act of eating is still confusing to her so she is asking to eat while being fed.  I get out something and after 2-3 bites she is done.  I'm sure it will take some time but eventually it will all come together.

They mentioned going home on Friday but it just didn't seem right in my gut.  So, we stayed an extra night and were discharged around 2pm on Saturday.  We had training on the pump and all the equipment, training on the tube and how to clean it (and emergency replacement), and our feeding schedule to get her up to the caloric intake she needs.  It's overwhelming but I have an amazing team and Brian has been helping with everything.

We were so lucky that the new Golisano Children's Hospital just opened a few months ago.  We were on 7 South and all the rooms were private and beautiful.  There was a huge play deck where the kids can run around and a play room with tons of toys.  We had lots of visitors for only being there 3 days so the room was rarely quiet which was great.  The nurses were beyond amazing and of course were in love with our girl <3.  While we were there someone from Child Life brought her presents from the Pirate Toy Fund.  We also were interviewed for NBC news to discuss the Pirate Toy Fund and how much it means to families.

Annabelle went back to school Monday and did great.  She does have some limitations as far as physical activities and no swimming (or baths) for 2 weeks.  She was happy to see all her friends and teachers at school and they were excited to see her back and doing well.  Now we can focus on the holidays coming up including her big 5th birthday in December!

All ready for surgery

Happy that Child Life brought an iPad to play on

Just waking up from her surgery

Watching iPad videos with her new monkey

The view from our room

Our room at the new Golisano Children's Hospital 

Keeping her occupied 

Finally asleep, the evening after surgery

showing off the Olaf slippers, everyone went on about how cute they were

Playing on the floor of our room

Music class on the Play Deck

Daddy fell asleep, Annabelle was having none of that

Coloring fun

They have these all over the hospital, all different faces to look through

Hanging with her horses from Avery & Mackenzie (and their parents)

So proud of her first button buddy 

Disconnected from the IV fluids, free to run around

Playing in the playroom

bed bath, she giggled the entire time

selfie fun

Annabelle got to be on the news and Gary the Happy Pirate
gave her a Frozen purse from the Pirate Toy Fund.

Rebecca Leclair interviewed us talking about the Toy
fund & how important it is for kids in the hospital

Headband and Ribbon from Grayson & Lucas (and mom & dad)

Grayson and Annabelle playing in the playroom

getting her vitals checked by the student

Riding the fire truck with daddy

Purse all decorated

Second belly button

Natalie and Annabelle in the playroom 

Loved our nurses and staff, they kept us updated
on the board and were AMAZING!!

coloring with the present from Natalie, JuJu, & Jess

This is pureed sausage, they form everything
back to the original shape.  Made me laugh!

Annabelle being Annabelle - silly girl

Again, so silly!

Playing doctor in the playroom, CT scan and all!

Annabelle the pirate, she was on the move so it's blurry

Lunch in the cafeteria  

Back home with all her stuff, Clyde was so happy to see us!

First meal at home, we are getting the hang of it.

Evening meal and a game of Hi Ho Cherry Oh!

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