We've been enjoying the summer and the heat. Emma just loves swinging and being outside! She often says "SIDE" that is how she says outside. It's so sweet to hear her voice! She is proving Dr. Oppenheimer to be correct. When we were going through all of our fetal testing and stuff before Emma was born she had said that generally kids with Spina Bifida will talk and talk and talk because that is how they can "keep up". We know Emma can keep up with pinky but she can also turn into little jabber jaws! I love it!!!
We went and visited our good friends in Louisville in the earlier part of June! It was so fun but SOOOOO hot!!!!
Emma is continuing to excel at PT, OT, and Speech. We've been off for a while because of surgeries and vacation but she is doing so good.
I last told you that we were working on getting Emma's surgery scheduled. She went in on July 10th for her de-tethering. Dr. Stevenson switched up the plan a little bit the morning of. Instead of re-opening her original incision he thought long and hard about it and decided that a more reserved approach could get us the same end results and buy us more time before she has to have the de-tethering surgery done. So he made a new incision above her original one and removed a cyst and also drained her syrinx and put a stint in so it won't fill up with fluid again. We won't have to worry about it failing like we do her shunt either so that's a relief. The surgery took about 5 hours but Emma did great! She came through it like a champ. We were in the PICU for longer then expected. They had a lot of trouble figuring out Emma's sedation. When she would sleep she would be out which was great but when she was awake she was miserable and not so much pain related, she started becoming delirious. It was heart wrenching to watch her go through that but in usual Children's fashion they were amazing and didn't stop working until Emma was able to rest comfortably. She was in the PICU for 4 nights and then we got transferred to a regular room. We were finally discharged on Saturday. Our stubborn girl refused to eat or drink anything and every time we gave her the pain meds orally she would throw them up. They wouldn't discharge her until she was able to do those things.
There is absolutely no place like home. As much as we love Children's and grateful that they are in our back yard I'd be just fine not having to sleep there for a VERY VERY VERY long time!
We follow up with Dr. Stevenson on Monday. Praying for good reports. Her incision looks wonderful. Dr. Stevenson is such a talented surgeon, the care and precision he takes with our kiddos certainly doesn't go unnoticed!
We are looking forward to going on vacation at the end of the month! We are actually going to fly down there. That should be interesting. I'll keep everyone posted on how Emma does with that!
Emma is absolutely our greatest blessing and we treasure each and every day that we get to spend with her.
Thank you all for your love, support, and prayers. Each and everyone is so appreciated!!!
She loves to make a mess.
See her love for swinging
My little fish!
Working on getting herself out of the pool!
CHEEEEEEEESSSSSSEEEEEE!!!
So Starbucks has a "secret" menu and a kids cotton candy frappicino is on it!
Our city hosted the All Star Game this year we were able to take in some of the cool things they had done to decorate.
This was down in Louisville!
Do you see the giraffe's head?
SOOOOOOO HOOOOOOOOOOOTTTTTTTTTTT!!!!!!
Being an OT all star!
Someone in our community was kind enough to give us a stander they were no longer able to use. It is much newer and lighter then Emma's older one therefore easier for her to use!
We took Daddy to brunch for Father's Day!
Mommy and Emma got pedicures!
Then they even painted her nails!
Happy Fourth of July! This was Emma's first time at a parade! She LOVED it!
Day before surgery we went to the aquarium,
Ate ice cream,
and went to the bookstore!
Right before they took her back. She was a little loopy and adorable!
Recovering in the PICU
Staying entertained!
Love this girl to the moon and back!
Paging Dr. Emma
First ride in Pinky!
All she wanted to eat was pizza and of course they were closed.
Her hair got so matted from being on her back it took me about an hour to get it all out and looking pretty again.
They let her go!
