A Son Scare

After all of the health issues we've had, both scares and reality, we haven't had the "C" word yet. As I write this, I feel like I'm jinxing us with a near future diagnosis of cancer. Andrew has a lung cancer scare that involved a lung biopsy. I've had breast and thyroid cancer scares - though not quite as frightening as Andrew's biopsy. Everything has come back fine after testing, but the wait was always a challenge.
I'm sure I'm not alone in playing the "what if" game because we aren't exempt from cancer. No one is. It strikes anyone at any time.
When blood work is done, I know that is part of a basic panel. If the blood work is off, it could be an indicator of something brewing in someone's system. I don't get worked up about blood work, ever. I'm more anxious about MRIs and sedation than the routine blood panel.
That strong stance changed when we took Alexander to an orthopedist. Alex was diagnosed with chiari like his brother a couple months ago We need to follow-up with specialists other than the neurosurgeon before we discuss brain surgery with the neurosurgeon. In an effort to rule other things out that are causing his increasing pain, we are meeting with several doctors.
The orthopedist found no abnormalities in Alex's legs. He doesn't think Alex has EDS, the awful disease his neurosurgeon is concerned about, but he also didn't think Alex needed a geneticist to diagnose EDS. I've read that EDS is only diagnosed through a genetic test. I'm unsure what to think about that portion of the appointment but I'll set that aside for now.
The orthopedist said that he was suspicious of leukemia.
WHAT?!!! Wait.... that was NOT on my radar at all. Indicating that leukemia is rare did not help me. We deal with rare in our house every day. We aren't free of rare diseases here.
He discussed the symptoms of leukemia and how Alex fit the symptoms. Fatigue, bloody nose, joint pain, lethargy, and more... pretty much everything but the bloody gums fit. When I asked if we could wait for blood work during the January 20th rheumatology appointment, the orthopedist made it clear that testing needed to be done immediately. (Oh, he was serious about this "C" word)
I had to contact our doctor to have the blood work done.
In the meantime, we met with the neurosurgeon for Gabriel. The NS asked how Alex is doing and when we mentioned the leukemia concern, I honestly thought that he would dismiss it. Instead, he said, "that is a possibility with all of the different acute leukemia."
Oh.... crap. This is even more serious than I thought. So my brain goes to the "what if's" Andrew grew up with a friend who fought and beat leukemia. Surely Alex could fight this too. What if he doesn't win? What if he has an awful cancer making him lethargic and what if we don't catch it in time? What if he loses his hair during treatment? How will my heart survive this trauma on top of the the rest of these problems?
I will need to find strength from the reserves I didn't know existed.
While we waited for days for the blood work results to come back, the "what ifs" circled my head. When Alex got a bloody nose or cried in pain while getting dressed, my heart sank. 

 
Eventually we got the call from the nurse and Alex's blood work is NOT indicative of any problems. It took me a minute to process that we received good news. We hear bad, awful news more than once a year. Not this time - not this problem - it's not ours... I wish it wasn't anyone's battle. I wish those words were wiped out from our vocabulary and from anyone having to hear them.

Heart dissection

We haven't been to a pediatric cardiologist in two years. It was the longest time span since Gabriel was 18 months old. At one point we went every six weeks so this was a nice break. I wasn't anxious about this appointment because Gabriel last had an echo in the hospital in August to check for any side effects from the medication.

As Gabriel gets closer to puberty and the growth spurt of adolescence, the scare of his need for a new valve becomes a greater reality. As the valve grows, the leakage and stenosis Such is the joy of congenital heart defects. I used to belong to a CHD support group but as autism and chiari became a more immediate concern, Gabriel's bicuspid aortic valve became less concerning. Until I have to remember to mention it for surgery or when the doctor orders tests in the hospital to check his heart to make sure his heart is holding up. Then everything heart related rushes to the forefront again. Oh yeah, I AM a CHD mom too.
We went to a new pediatric cardiologist in an effort to have all of Gabriel's specialist in one building. Gabriel had an EKG and an echo done. The leakage is still minor and nothing else has changed.
Thankfully the entire family attended the appointment because it was important to Gabriel to have Alex go through the same tests he completed. It eased Gabriel's anxiety to have some control throughout the appointment. Overall, the kids did a great job. 

While we waited to talk to the doctor, the kids dissected a large plastic heart. We talked about valves and blood and oxygen flow. The past year has been one full of learning about the brain and different sections of it so the kids were very interested in the heart.
An interesting note -- a few years ago, a cardiologist at Mayo told Andrew that all extended family members should have an echo done to find where the heart defect was coming from in the family line. Our new pediatric cardiologist made the same comment and said that someone in the family has it. We've told all of our siblings and parents but few have gotten tested. I guess we may never know which side of the family holds the CHD mystery.

Kindergarten Polar Express

Lane's kindergarten holiday party is this coming Friday. We were able to finish everything the Sunday prior to the party.  It's nice to have an engaged child    

Her party will center around Polar Express.  We printed book marks that say "I believe in you."   We stapled mini candy canes to the back of the book mark. (found here: http://cathedralkindergarten.blogspot.com/)  

 

We made little snowman building kits to give to her classmates. The kits contain three marshmallows, pretzel sticks, and chocolate chips.   We added a topper that says, "do you wanna build a snowman?" (found here: http://prettyprovidence.com/treat-bag-toppers-do-you-wanna-build-a-snowman/)    I also found snowman baggies to use for the kits. 

Lane made a card for her teacher and we added a gift card to her teacher's favorite family restaurant.  I'm thrilled to have one out of three kids holiday class parties in order.   Two to go and we are done with the school stuff! 

Snowflakey

The Elf tradition isn't one I appreciate fully. I don't enjoy getting out of bed once the kids are asleep to make sure Snowflakey the elf has moved.  However, my kids love the magic and they know about the Elf from school.  There is no escaping it unless I want to be a real Scrooge. 

Thankfully our college friend and babysitter stayed at our house for a few days and took over the adventures of the elf.  She did a great job too.  

While Snowflakey (aka Snowflake) only moves locations when I check on him, Snowflakey is far more creative when our friend is here.  When she left our home, she left a cheat sheet with ideas for the rest of the month.  She even left the items to make the magic happen.  

Snowflake brought his ( her?) house one night.  

The kids planted seeds and candy canes grew the following day!

How adorable is this Elf swing?!

A marshmallow angel with marshmallow-men.  The kids ate the marshmallow and Snowflake's house.  

Happy Holidays friends and family!

Busch Gardens

We have annual Sea World passes this year. We were given "free" admission to Busch Gardens through our passes and decided to take advantage of them. Andrew and I went to Busch Gardens over 20 years ago on our first trip to Florida together but we haven't been back since that time.
It was about an hour and a half drive from our home to Tampa. We didn't tell the kids where we were going and they were not thrilled about the surprise. It took a little while for them to warm up to the idea but when they did, they LOVED it.

We took a train ride around part of the park to see the animals. Trains and animals are a perfect combination for Gabriel! They went on several rides made for kids. We watched tigers. My kids have fed goats, horses, giraffes, zebras, emus, and more. Now they can add kangaroos and wallabies to their list! It was a lot of fun to feed the kangaroos and wallabies. They are super soft and gentle while they are eating their vegetables.

If we lived closer, we would definitely frequent Busch Gardens more often. It was that much fun! I think Sea World should gift us with the free admission to Busch Gardens again soon.

Lane's First Concert

Lane had her first holiday concert at school. All of the kindergarteners in the school were included and the cuteness was over-the-top.

Lane's class happened to be in the front and she was in front of where I sat, which was great! Prior to the concert, I told her that I wanted to hear her voice. Apparently she took it to heart because I could hear her sweet little voice over the other students. She also put her entire heart into her performance, which was pretty darn fun to watch.
(On a sad note, these are the events when autism smacks us in the face again. We were unable to attend the concert as a family because Gabriel wouldn't be able to handle watching the performance. I am grateful I was able to go to watch her.)
I look forward to more performances in the future by my little performer!