Par & Jack Pics...(updated 11/26/11))

Saturday, March 19, 2011

Life is good.

We might just be insane...
Or the best parents EVER! Par had his annual check up with Dr. Kays coming up and so we were making plans to visit Rusty's friend Steve and Steve's wife Kristin in Ponte Vedra. The more I thought about that long drive the more it seemed to make sense that we should stop over at Disney World... we the car for 11 hours all the way down to Ponte Vedra to stay with the Pirris family. We were well taken care of--from delicious fresh fish on the grill upon arrival, to picking oranges for a snack off the tree in their back yard, to a special tour of the famous 17th hole at The Players Club, a day on the beach--warm sun but COLD water-- multiple golf cart rides, playing at a great tot lot, and finally, a swim in their jacuzzi which will be the only thing Par remembers from the trip because it is the only thing he begged to do! We love the Pirris family--for many reasons--but mainly it is because of their knowledgable influence that we even considered going to see Dr Kays almost 4 years ago--so in a lot of ways, they are responsible for the Par we have today!
It was sad to leave--especially their precious lap dog Heinz...
We arrived at our hotel Sunday afternoon and headed straight for Downtown Disney! We walked around and then Par saw a train. He HAD to ride it...and so he did...and if you ask me, we could have called that Disney World and gone home!
We ate some yummy overpriced food and took in the enormous amount of people and tried to brace ourselves for what tomorrow would bring: Magic Kingdom from 9-6 with a 1 year old and a 3 year old. Did I mention that Jack has an ear infection?
My sweet aunt it a genius when it comes to doing Disney--her expertise comes from first hand experience--and recent experience, I might she had given me some good pointers on making the most of our little last minute trip. Boy was she good....
We really never waited. Of course we had to wait our turn for things--but we never stood in long lines...only at Dumbo which was our first and last thing to do. Look at these pictures. This is our first ride...Dumbo...around 9:30.

And this is the last ride of the day...Dumbo...around 6:30....

Can you believe we look just as happy--no bitter faces--we had the time of our life! We totally worked the fast pass system and seemed to be ahead of the crowds most of the day.
Around 6:15 we said Goodbye to Disney World and headed to Gainesville! Homewood Suites always seems like a home away from home, this time was no exception. Par felt comfortable to run up and down the halls screaming and Jack made no apologies for the blood dripping out of his ear while I was checking in. Did I mention that his ear infection, which we got medicine for in Ponte Vedra, now has his hear dripping blood?
We played a little, gave the boys a bath then all went to sleep.
We woke up all refreshed for our Dr. Kays appointment! We headed downstairs for the always delicious breakfast that is included in every Hilton Homewood Suites stay--waffles, eggs, fruit, fresh juice, coffee, pastries! After we were all fed and dressed wee packed up and headed for our first appointment.
Par's echo went great. He was very still and didnt complain a bit. The person doing it was very nice and seemed to only say nice positive things to him--like "just a little bit more" or "you are doing great, look that is your heart"..... I tell you this because when we met with Dr. Kays he said there was a note on the Echo which read "patient uncooperative".... WHAT?????? This is very confusing to me still and I am having a hard time letting it go....whatever....
After the Echo par had a chest X-ray....I was busy getting a prescription filled for Jack, so I wasnt in there--Rusty says he did great...there was no note to confirm or deny this!
We headed up to NICU III to say hey to the nurses.....unfortunately no one was there...but we did run into some friends...Jim Beau is a Kays Kid--his mom Mary Abigail contacted me when she decided on shands to ask about my experience about a year and a half ago...she is Senator Sessions' daughter-- more importantly Jim Beau's mom (most importantly paul's wife)...
It is always fun to talk to other families and we are glad to have met them in person!
We grabbed some lunch and had a picnic until our third and final appointment: Dr. Kays
As if we used a fast pass we were taken right to a room! We met Dr. kays' new NP (who just finished a semester visit at childrens in Birmingham last year) and then met with Dr. Kays himself! Unfortunately, our little day trip to the beach turned into a pretty bad sunburn--of all the times to have a sunburn!!! It was sort of funny to everyone.

In a nutshell....Par is doing great. Not just for a kid with CDH, but for a regular kid, Par is doing great! For those wanting CDH specific information....Growth is great--around 20% +/- for growth chart, spine shows no signs of scoliosis, X-ray shows intact diaphragm, heart is slightly off center due to the fact that his left lung is small. Heart continues to show slightly elevated pressures on the right side-- but are improved from the echo a year ago and should continue to improve. Par is still free of any and all medication since he was an infant. Par eats whatever and whenever he wants and has never had any oral aversions. He is 100% on target for motor skills, verbal skills, can run, walk, swim, twirl, flip, swing, dangle-- you name it and it's dangerous-- he can do it! basically, he is a 3 year old little boy. Completely healthy. Doing great. praise God.

Above is the last picture of our trip...Rusty is putting Jack in his carseat at a gas station on the way home. But look in the background--a woman is being handcuffed--I think this is so funny that this was part of our vacation!
I wrote all of the above in the car on the way home from Gainesville (at the end of Feb) with the intentions of immediately posting. Well...I just now got around to it. And what do you know...Jack has yet another ear infection--actually, he has 2. Frustrating--grrrr!!!!! My real question--what was the point of getting tubes?
As of today...Jack is rambling, but still not saying any words--but he follows instructions very well and loves to point and talk about things in his own language. As for walking...he does it sometimes. He can walk--but he'll sit down mid-way--as if he remembers that crawling is much faster or something.
Par and Jack love to play together--and lately they are usually outside in the backyard playing in the fort and covered in dirt. (They may or may not have clothes on). They love sharing a room--Jack sleeps in a big boy bed, just like his big brother--and we haven't had any problems.

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