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.




These two love each other <3 

All ready for horse therapy

Swim lessons at the YMCA

My new shirt, love spreading the word and educating people about PMG

Our for a run

silly fun in the tub


playing at the playground, she looks so grown up

fun at the spray park

big girl getting her hair trimmed


silly girl, found her bumbo when we moved LOL



summer fun

Dancing with Denise parade float

face painting at the zoo

fun with friends

Annabelle and her friend Natalie

family selfie - watching the East Rochester fireman's parade

In the ED :(  Child Life always brings fun things to keep her busy


New bike trailer, she loves going for rides

Fun with friends on Canandaigua Lake



such a sweetheart

Getting ready to captain her first 5k

ready to run!

my silly girl

earrings, noserings, necklaces - silly
dress up fun with daddy

so happy to play outside

fun at the parade


Tuesday, June 16, 2015

Moved into the new house!

Well, it's all over, almost.  We moved a little over 2 weeks ago and are mostly unpacked.  Loving our new house, we are all so very happy here (even Clyde)!  It's been raining a lot so we have only met a few more neighbors since moving in.

Annabelle was approved for Vision therapy but not until the fall.  Summer program is to prevent regression and since she hasn't started, regression can't happen.  Her last day of school is June 24th then we have 2 weeks off before the summer program begins.  She had her field day last Friday, it was a fun but muddy morning.

Last weekend was Annabelle's dance recital.  It was so much fun doing the performance with her and the other girls and moms.  Annabelle loved being on stage and at the end of the day was ready for more dancing.  She also had her last day of gymnastics and she received a gold metal for all her hard work.  Pretty soon we will need a trophy case for all her metals and trophies.

We have been working hard to get the old house ready to go on the market.  We are hoping to do pics on Wednesday and list this week.  Fingers crossed that all goes smoothly!  It will be nice to focus all our attention on the new house.



Annabelle's field day - they were the purple team

Heading out to the fields

Receiving her metal

All wet from the water wars and pouring down rain



Sitting with her friends

Getting our office set up

New kitchen




Still have a few boxes but we are getting there

Parent observation at gymnastics



Receiving her gold metal


Checking on the cupcakes for field day