Dear Kiddos,
With Daddy taking last week off, we've gotten a chance to have a little bit of extra fun. That's not to say that it was all awesome, but it has definitely been 10 days of extreme highs and lows.
Let's start with the fun stuff. With a pandemic raging in the community, we mostly stayed at home and took a few short excursions here and there when the weather looked better. In fact, the first few days of Daddy's vacation were gloomy and wet. The first day that the sun came out, we all went to a skate park and we were able to have the whole bowl to ourselves. You guys zoomed around on your scooters and sometimes on foot up and down, up and down.
At home, you guys got to play with Daddy a whole lot. The following picture is a great representative of what play looks like with him.
I also finally figured out a way for you to eat salmon! Salmon meat balls! You absolutely love eating them and will eat 7 of these balls in one sitting!
Now that our whole 30 experiment is basically over, we baked some cookies the other day for our friend who is stationed in Bahrain. You each picked a type of cookie to make and they all turned out delicious! Hannah, you stuck with the traditional sugar cookie, but with a cookie press. Hailey, you made the cookie cutter version and Nathan, you created an everything cookie.
Shout out to our local library for providing weekly crafts to complete at home. Hailey loved this tree craft!
The trampoline continues to get high usage and I'm so thankful we decided to invest in one.
Even if the static creates crazy hairstyles.
This week we started to paint ornaments and I got each of you a little nutcracker to paint.
We finished up our moon unit with a critical thinking and vocabulary lesson. You guys were pretty resistant to doing it at first, but once you realized that it wasn't "stupid" you got into it.
After feeling the pain of loss, I don't regret that you guys never got super attached to Teddy. Sure, you all occasionally would try to play with him, but most of the time, he just did his own thing and you guys did yours. Now you guys want to get a hedgehog.
In the evenings typically Daddy puts Hailey down for bed at 8 and I will do downstairs time with the big kids (we usually read a book and/or play a board game) until 8:30.
Sometimes we switch places and tonight I decided to take a picture of this sweet moment because I know how quickly this will pass.
We lost Teddy last week to cancer. We brought him in because he was starting to lose his appetite and losing a lot of weight. After a gut scan, the vet diagnosed him with liver cancer. We also had some lab work done and she said that with his liver in such a bad state, she was very surprised how well it was doing its job. 2 days later Teddy was in bad shape. He was lethargic, would sleep all day and basically refused to eat anything. We had planned to take him in that morning to get some fluid drained from his body so that he would be more comfortable and maybe that would help improve his appetite, but we woke up to a minefield of bloody poop all around the house. He looked miserable.
I gave him his last bath and took him in to the vet. On the way there, I realized what I must do. After discussing it with the vet, we both agreed that letting him rest after living a full 14 years of life was the best thing to do. We said our final good-byes and Teddy was put to sleep forever.
Teddy really was the best dog ever. Sweet, never aggressive, independent, and would occasionally come up and snuggle. He was always there to greet me when I came home and would not stop wagging his tail until I acknowledged him and gave him a little pat. I'm gonna miss this little guy.
Not going to happen for now.
Teddy, we will miss you.
****
We tried Sea World again. It was a pretty cool experience for everyone. There was hardly anyone there at the park so we felt fairly safe and were able to practice social distancing. Hailey, you got to see your favorite sea lions again.
You guys were mesmerized by the sea turtle tank and just stood there and watched them swim around for about 20 minutes (while Daddy went to go ride a roller coaster).
In the evening, the lights made the whole place feel super magical.
Right before we left, we caught another show and we were able to get seats as close to the splash zone as we wanted.
We saw the some beluga whales and dolphins.
Yesterday Daddy took the day off and we went to McKinney Falls state park. We celebrated our gluten day with doughnuts at the park. I think we've learned that Hailey is sensitive to dairy and gluten. I'm going to try to fine tune that a little more so we can know exactly what she can and can't eat without feeling horrible.
Going on a weekday, we basically had the trails to ourselves. Occasionally we would see a few people walk by, but the trails were open enough for us to pass by and keep a safe distance.
Hailey, you walked for like 5% of the time and the rest of the time was spent either on my back or in the carrier in the front.
Today we went to visit the Medical Director of Pediatric Heart Failure, Transplant, and Mechanical Circulatory Support. I know, daunting title, right? She is Austin's specialist for HCM (hypertrophic cardiomyopathy). We spent a lot of time in the imaging room as the tech took pictures for about an hour. Your septum (the wall between the 2 ventricles is abnormally thick) and it kind of looks like a mermaid on the screen. You found having a mermaid in your heart pretty amusing.
She then hooked you up to an EKG machine and took some measurements.
This past few days has been a complete emotional roller coaster for me. We finally got your genetic testing results back and it turns out you are a carrier for Pompe disease. You don't have it, but you are a carrier. When I first read your report, I had quite the scare, because without reading the report carefully, I immediately researched the disease and came up with very dismal search results: you basically had 2 more years to live if this condition was untreated. Feelings of an impending sense doom suddenly took over my body and I completely freaked out.
And Hannah, you got to see your favorite, flamingos. (Although, apparently your new favorite animal is a hedgehog).
Luckily Daddy sat down, read the report carefully and we realized that you don't have Pompe disease and all of the 26 markers that they test were normal. But we also now still don't know what is the reason for your heart condition. The cardiologist has referred us to a genetic counselor so we will see what they will have to say. In the meantime we will all have to get our genes tested to see if there's anything wrong with the DNA that affects how the heart functions.
You had to get some blood work done today, so afterwards, we went and got some lunch and fro-yo. You were not keen on sharing and boldly suggested that I go buy my own bowl of fro-yo.
Ok, Ok, I see how it is.
Until next week,
Love,
Mommy
No comments:
Post a Comment