Friday, June 25, 2010

Jessica - Cutie Pie

Posting about Alexis wouldn't be fair without some updates about Jessica!!!
Here is Jessica, you can see she has all of the basic necessities down - sunglasses, cell phone, beach chair, and wearing pajamas for the whole day! 

Alexis Day 3 after Heart Catheterization

Alexis was discharged from the hospital on Wednesday and we've spent Thursday and Friday -- doing very little.  So, Alexis cleaned out papers that had taken over the house, she did some laundry, she did the dishes, she had some breakfast, lunch and dinner and she took some naps.  Some of the time we did get to play with our favorite toys which made us very happy! 

On Thursday, we went to visit Jessica at her last Early Intervention Playgroup time.  Alexis had previously gone to that playgroup, so she was happy to join them for free play and see some of her favorite teachers.  They were all amazed that Alexis had just had heart surgery and thrilled in the progress she has made since she started at Perkins!

On Friday, we did something that was fun for a while.  Alexis went to WORK.  She liked lunch time, enjoyed hanging out in the TV studio but then we went actually went to the office she was GROUCHY.  She was growling at my coworkers and then even complaining about work.  We changed her attitude quickly when she found that the work chairs SPIN.  And they can spin very fast.  And Alexis can giggle very loudly in a cubicle-ville.  She had the giggles and snorts and just all kinds of giggles.  It was great to see her being so lovable at work.  :-)

Steve did get a good picture of Alexis and I at the cafeteria.

And then he showed off the fancy new video feature on his new iPhone (and posted it to Youtube).

Alexis Surgery Updates

Tuesday morning, Alexis embarked on her 7th surgery of her life. This surgery was scheduled to fix her heart defects.

The plan was to arrive at 7:30am and go to CT at 8:30am. That plan was derailed for no known cause. Alexis entertained herself during the delay with some toys. See exhibits A and B.

There was a lot of time in the morning to watch “hospital time”. (this is the time where the clocks move forward but nothing happens in reality – maybe I should call it Time Warp).  
After Alexis exhausted her selection of toys, she upgraded to Steve’s iPad. She loved it. She was coloring and drawing and putting on stickers that made sounds and having an awesome time. She even wrote her name! (Just kidding, she had some assistance!)

Then at 11am, they gave her some Versed and took her to be intubated. She then went to CT scan to confirm a question that her orthopedic doctor had (a small concern – ha ha! He was hoping to confirm that Alexis’ skull was safely adhered to her spine). Alexis has fusions between C2 and C4 of her cervical spine (neck) and they were concerned that the neck to the head wasn’t securely attached. We’ll tease her later about not having her head screwed on.

And then at probably 12:30pm, they were ready to start the 2-3 hour heart defect repair procedure. About 1 hour into the procedure, Alexis’ catheterization surgeon came out to talk to us. The doctor explained that her ASD (whole in the heart) isn’t as easy to close as he hoped it would be. He found that her HOLE is like swiss cheese – with many holes instead of 1 big hole. He wasn’t sure at that time if he would be able to close it with a device inserted through a catheter or whether he would need to do open heart surgery to repair it. We told him we’d like for him to try to close it with the device since that was the least invasive and impactful for Alexis. In the end, he was successful in closing most of the hole, but there is a 3mm defect still remaining. Hopefully that will get smaller as she gets bigger. 

Alexis stayed overnight in the ICU.  We get our own private room and lots of equipment to make sure she has a restful night (and safe!).

We were reminded again today, Alexis does not pick the “easy/straightforward” route, she likes the routes that cause doctors to think and work hard!

Sunday, June 20, 2010

Why My Dad is the Best Dad! (from Alexis)

Because I giggle non-stop around Daddy!

(Please note this video is from middle-of-May, but I haven't uploaded videos in a while and this seemed PERFECT for Father's Day!)
Happy Father's Day MATTHEW!  (and Happy Father's Day to Grandpa Bill and Grandpa John!)

Pre-Op Scheduled tomorrow - 7:30am!

Hi All,
We haven't posted much in a while, but you are probably aware that we are a busy family -- going non-stop most days.  And if we slow down enough, I like to "steal" the extra time and take a nap.  My parents were right to call me CATherine.

So, Alexis and I are going to be on our hospital field trip tomorrow. 
6:20am Departure
7:30am Pre-Op appointment (including chest x-ray, blood draw, cardiac clearance and anesthesia approvals)
They suggest that we plan for 5-6 hours at the hospital to complete everything, but they also say that some kids will be staying overnight in advance of the surgery.

So, by the time we return home tomorrow, Alexis and I will be beaten into a pulp.  Only to turn around and go back to the hospital for Tuesday's surgery.

Maybe I haven't reminded my online friends which surgery this is -- but it's the cardiac catheterization to repair her heart defects (ASD and PPS murmur).  In the whole scheme of things, Alexis does very well for having heart defects.  Sadly, we know many of Alexis' peers who aren't able to get 'repaired hearts' and their parents are always in our prayers.
But for us, we have been able to put off this heart surgery until Alexis was much stronger and robust - which should improve the success probabilities.

We will let you know how we are doing as we can. 

(For those interested, here is a link to a description of the type of surgery Alexis will be having - I thought it was really amazing and educational -

Will post more later,