Ups, Downs, and All Around......

Well, where to I begin? Last post, I was writing about Brock getting sick at his Cardiology appointment.......he rebounded quickly, yet continued to cycle through with days that were good and days that were NOT so good. Thursday, April 1st, Brock became very ill again with vomiting and was acting strangely sleepy. I panicked and thought he could be showing symptoms of elevated ammonia as we were warned could happen from his valproic acid, so I took him to the ER. They did various blood work, but nothing concluded what was up......all wrote it off as the flu that just "came back." The neuro prescribed Zofran just in case the vomiting returned, however we couldn't find a local pharmacy to fill the script!

The big deal was that we were excited for Brock's Make-A-Wish trip! We were to depart on April 6th, and I was having trouble getting all my ducks in a row. Brock was having issues, and to add insult to injury, Cora sprained her ankle on Good Friday! I took her to get an x-ray that Saturday because she would not bear any weight on it. By Easter Sunday, she was limping with her ankle wrapped and we thought all was well. Brock had a super day Sunday, and Monday I made a comment that he was better than I had seen him in months! No worries about not being able to fill the Zofran script right? I spoke too soon.....

Tuesday, April 6th, was the big day! We were all packed and headed off to Bloomington airport to board our plane to Orlando! Disneyworld bound! But, we hit a snag.

I thought it was actually April Fool's day perhaps when Jason turned around from the airport counter and informed me we missed our flight. WHAT? How could that be? Our info said we had plenty of time.

Apparently, there was a miscommunication and our wish coordinator didn't receive an e-mail with the schedule change.

Deep Breaths.....

They were able to get us on another flight, but rather than a 2 hour direct flight, we were routed to Atlanta where we had a 4 hour layover. It really shouldn't have been that bad, but it got messy.

Brock decided it was his day to get sick again. That day we dealt with a vomiting, sleepy, very sick boy. Not fun in an airport, nor on the actual plane. :( Where was that Zofran when we needed it?

I phoned the neurologist and left repeated messages. Our usual contact was on vacation and the Neuro on call kept telling me that Brock's labs were fine. We ended up filling the Zofran at a FL Walgreens, but even though Brock stopped vomiting, it was clear he was not fine! For a day or so, I didn't even know what boy I brought with us. It was not my Brock.

My gut was telling me that his Valproic Acid was making him sick. So.....I decided to lower each dose just a tad. The day I did that he had 3 mini breakthrough seizures. :(

That was a turning point. Brock came around and our trip was looking up. To make up for the confusion with the initial travel, we were offered an extra day and we took the offer!

Through Make-A-Wish, we stayed at a truly amazing place called GIVE KIDS THE WORLD. It was magical itself and each kid loved every moment. There was an incredible pool and waterpark like fountains, a carousel, a life sized Candyland game, a train, mini-golf, and more than I can list. Ice Cream and cookies were limitless too!

Over the course of our trip, I took close to 700 photos! I have since condensed the trip into a highlight reel that I know won't do it justice, but hopefully you can get an idea. (Sadly, my 14 mp camera has pics that make large files when I upload to my PC.....I know there is a way to change the format size, but rather I selected files that were small enough.)

On our first full day, we went to Cocoa beach, just about an hour from our resort area. Jason bought the kids some sand toys and they enjoyed playing in the ocean and building sand castles. The devastating part was when we said the toys couldn't travel with us. Avery and especially Cora, were crushed to have to give the toys away. I know they made a couple of little boys happy, but they couldn't care less about that good deed......

Universal Studios was the next stop. Brock was having a very bad time there, so our visit was cut short. However, we were able to go to the Shrek feature and also the ET ride. ET was my favorite as well as Brock's.

The next day, Jason took the girls to Seaworld and Brock and I decided to chill at Give Kids The World. Brock had a hippotherapy session and we walked all around the resort. He also got some much needed rest in the villa that afternoon. Avery and Cora on the other hand had some wild times! They went on a water/rollercoaster --Journey To Atlantis, fed some dolphins, and played in a huge jungle gym that was several stories high. I was worn out just hearing about their day.

Magic Kingdom was in line the following day. How fun! Dumbo rides, dizzy teacups, princesses and fairies.....And WALKING!!!!!!!!!! If you recall, Cora had a sprained ankle to begin our trip. It was wrapped everyday, but we frequently heard about it. I am sure it bothered her, but it was very convenient how it started hurting when she became tired. A double stroller came in handy at times.

Sunday was Epcot. It may have been my favorite place because we were there during their Flower and Garden show. Breathtaking topiaries and flower beds were everywhere! We also met loads of Disney characters that day. I do have to share that I didn't really enjoy the ride Soarin'. I must suffer from some vestibular issues in my old age because I wanted to bail as soon as the ride began. Brock wasn't able to go, so Jason sat with him and I took Avery and Cora. I now realize I would have been happier to have my feet planted on the floor and I should have let dad take the girls. Mind over matter got me through it. The teacups got to me the day before, you'd think I would have learned! One of Brock's favorite things at Epcot was the entrance to the Nemo area. Water would rush down and trigger the seagulls to say "MINE, MINE, MINE!". He cracked up every time!!!!! I am currently on a mission to locate a toy that will say that phrase. I settled for a talking Nemo.

Monday morning was some down time at the villa for each of us. The girls are part fish, so of course they swam in the pool. Brock was able to partake since I packed his special needs life vest. He loved it in the water even though it was a bit chilly at first. After our dip, we soaked up some fabulous Florida SUNSHINE! Ah, I love sun and warm weather. Later that day, we drove to Animal Kingdom. We saw the Nemo musical and went on the African Safari tour. We really wanted to see more, but a parade stopped us not once, but twice! It trapped us for close to an hour. After Animal Kingdom, we hit Magic Kingdom once again. Brock and I chilled out for awhile in the Make-A-Wish lounge and Jason and the girls went on "Its a small World" ride. I can say for sure, my girls liked it more than their dad. LOL

Monday night was a big night full of the light parade and fireworks! AWESOME!!!!!!!!!!!!!!!!!! The worst was fighting the crowds and dealing with some exhausted ABCs that night.

Tuesday we had some time at our resort. Kids swam while I packed, then before you knew it, it was time to head to the airport.

We arrived safely in Bloomington, IL at about midnight. The disappointment of that flight was seeing Brock's special tomato jogger at the gate. It was beat up something fierce. (I am currently in the midst of filing a claim it was damaged so badly.)

All in all it was a great trip, with "once in a lifetime memories."

I think we are each grateful to be home. Jason had to hit the ground running with his work as planting season is in full swing here. ABC stayed home to rest up and recoup a little. There was a virus going around and no one needed to be exposed to that right away after being tired from our trip.

Brock continues to have good and bad days. Today, I took him to the Neuro. She is speculating elevated ammonia levels and/or elevated Carnitine levels. Brock and I waited for what seemed like forever, but he got a blood test. First stick, I may add!! WooHoo! Perhaps I need to drive 1.5 hrs for bloodwork? Maybe just "beginner's luck" on Brock today. I was just thrilled to have found a 'new' vein. His "go-to" vein recently had scarred......

Cross fingers that we find what is causing Brock to become sick. He can be so happy one day and completely out of it the next. :(

Until next time......