Drew Makes A Wish

Monday, December 22, 2008

MAW Trip Day 6 - Epcot

We raced over to Epcot and finally found a parking spot (didn’t even think of the lot being full) and ran towards the entrance.

We hurried back to The Land (after consulting the map a few times) and finally got checked in – only 15 minutes late. Quick bathroom breaks and we were seated.

I really wish I had looked closer at the menu for Garden Grill. I was so focused on making sure we had seating for the Candlelight Processional that I over looked that. It’s definitely not a restaurant we will ever visit again. We paid Adult price for the older kids to eat chicken nuggets and fries. Definitely not a restaurant for a family full of picky eaters.

We did have a VERY nice waitress though.

I didn’t realize this was a character restaurant either. Dale was the first to stop at our table. He was so loving to Drew and very patience with all the kids.

Next up was Pluto, Ryan’s new favorite. He absolutely love him.

Then Chip came by. He thought it was great the kids knew he was Chip and not Dale LOL

Our waitress was so patient and brought whatever we asked. When she realized we were on a wish trip and that Drew’s wish was to see Mickey she had him come back by. He loved on the kids for some time.

I was so caught up in the moment that I didn’t realize I had forgotten to take a picture of Zander with Mickey. Zander had stayed in his seat like he was asked and had missed out. I felt so bad. Once our waitress found this out she had Mickey come by again. Of course he arrived just after Zander had headed to the restroom.

Finally Zander & Mickey got their picture and we headed off for some serious talking with Ryan’s favorite Turtle.

Ryan had made a sign that said “I love Crush” He wanted so badly for Crush to talk to him. The only memory he has of our trip in 2005 is that Crush didn’t talk to him. I felt so bad for him. He sat there so still in the front row holding onto that sign waiting and waiting for a turn to talk with Crush.

And of course Madilynn, who wouldn’t sit still, gets called on. Ryan was happy for her though. The worker there saw his sign and told him if he would sign his name she would make sure crush got it. That made his day and kept us from tears.

We rode the Nemo ride. It was ok. Not something we feel the need to do again. Even the younger two thought it was “babyish” The starfish at the end of the ride is the only part they talked about.

By now it was time to make our way to the boat to get across the park for the Candle Light Vigil.

We were late (again) and missed the beginning but were quickly seated. Steven Curtis Chapman was the narrator for the night. He’s the reason I bought the tickets. I really wanted to end our trip with the true meaning of Christmas. I think it’s great that Disney has such a program in their park. Sitting there in the cold breeze off the water, our hearts were warmed. When he read from the Bible it pierced your soul. We sat just in front of the Trumpets. What a spiritual experience it was. Once again Madilynn fell asleep. Drew & Meagan sat next to me huddled together in Steve’s coat because theirs had been left in the van. As I sat with my arm tucked around Drew, trying to keep him warm and constantly having to use his magnet to stop his seizures I was thankful for the blessing God has given us. We were ending an amazing week from home. We had spent a week without a single worry of illness. Even when Drew was up in the night I never worried. I knew we would be ok.

After the show we walked around the different countries. It was funny that Ryan actually thought we were actually visiting each one. It takes us all day to fly from WA to FL but we can be from Germany to Mexico in a matter of minutes LOL

We stopped by Soarin'. We love that ride. Last trip to Disneyland mom sat with Ryan & Madilynn who were too little to ride. This time everyone got to ride.

The kids loved prooving they were big enough now :)

We walked back out to the front. It was a really cold night, the only one of our whole trip. We made it back to be the last people on Spaceship Earth. How cool that ride is. I wish we had enough time that we could have ridden again.

After some not-so-quick shopping and a good half hour sitting with kids in the cold, we boarded the monorail back to the MK. This time Meagan and the three younger ones rode up front.

MAW Trip Day 6 - GKTW Meet 'n Greet

This was the morning of the meet and greet at GKTW. Meagan again opted for an extra hour of sleep. Steve and I took the kids up to see Mickey and his friends. I hadn’t realized they take a little break while they are there so we had missed them by 5 minutes. Thankfully we still needed breakfast so the Gingerbread House was a great place to wait for the characters to return. We were the fifth family in line to meet Mickey and Minnie. The family behind us agreed that it was amazing that a week at Disney and this was the first line we really had to stand in.

We took lots of pictures and Mickey & Minnie signed Drew’s 2008 Mickey. As they were taking our group picture I whispered to Mickey that Drew’s wish was to see him.

Mickey had Drew come back and get a picture by himself. Drew thought it was the best thing ever.

Snow White was in the foyer as we exited. Madilynn’s eyes got so big! She looked up with the biggest smile.

Zander was sure he did NOT need a picture with Snow White.

Once again he was told to suck it up. This was a picture taking morning.

Pluto and Goofy were in the courtyard. Ryan loves them both. I had to use my cell phone to get pictures here.

I told Steve I just couldn’t do another day without a camera. Thankfully he agreed and a semi-quick stop to Walmart for a point and shoot was our first stop of the day.

Another thing that’s the same across the country – there’s no such thing as a quick trip into Walmart.

My Drew

Drew was born three weeks early. I had the perfect pregnancy and this was the only pregnancy I had gone into labor on my own. Things were going smoothly and I was progressing along. The doctor came in and said she thought it would be a few more hours. Twenty minutes later buzzers started going off and a bunch of doctors and nurses came rushing into our room. A few minutes later Drew was born, not breathing. He was resuscitated and then whisked off to NICU. The doctor told me that if we wanted family to meet him we better call now. I called my mom and she called someone from our church to come bless him. I didn’t even get to see or hold him. I was then sedated.

The next morning my doctor came in and told me he was going to live. She had sat up with him all night (she was on-call). She arranged for me to go see him. I finally got to hold my baby. We spent the next week in NICU and then finally got to bring him home.

A few weeks later he got RSV and ended back in the hospital. It was horrible. We started breathing treatments every 2 hrs. Once we got good at that we were able to bring him home with a machine. We learned very quickly that we had to limit what he was exposed to. We were referred to Children's Hospital Respiratory Clinic. Drew relied on that machine for the next 4 yrs. Over time we were able to move his treatments further and further apart and then just before his 5th birthday we were able to stop.

Besides the breathing problems, Drew was developing just fine. Then at 18mo we took him in for his MMR shot. He ended up with a 105* fever and went into convulsions. The paramedics finally got him to stop seizing and we were off to the hospital for tests. That seizure limited Drew's ability to talk for the next year.

For the next four months or so we thought the seizure was just a fluke. Then we noticed small twitching, blank stares and quite a few falls. My mom suggested he was having small seizures. We made an appointment with the doctor and were referred to Children’s Hospital for evaluation. He had his first MRI and EEG, both showed abnormalities.

For the next seven years we lived with seizures. We tried a number of medications and combinations. Every day the seizures got more and more. We longed for a day without seizures, but that was not to be. We sent Drew off to Kinder just a few days after his 6th birthday and had him tested for services. He was 2 yrs behind his peers academically but was right on socially and cognitively. Things that other children could do in a matter of minutes took Drew hours and hours. He never gave up. He was determined to learn.

Then last year we were referred to have him screened for a Vagus Nerve Stimulator (VNS). I was so excited. I had been reading on it for so long and my mommy instinct told me this was going to be our answer to prayers.

On Oct 12, 2007 Drew finally got his VNS. It took 2 ½ months before we saw the implant start to work. Drew’s seizures started decreasing from well over 100/day to about 50/day. Instead of seizing for minutes at a time, we were able to decrease it to seconds at a time. Then finally our day came, our first day in over 7 yrs without a seizure.

Over the next three months we would have a handful of days, here and there, seizure free. Even on the days with seizures it was usually 10 or less. We finally had success. Drew finally learned to read and was making great strides in catching up with his peers.

On May 22, 2008 our world came crashing down. Drew had been complaining of pain for a few days and his seizures were increasing so I took him in to have him checked over just to make sure everything was ok before the long weekend. That is when we found out the lead had gone bad in his implant and it had to be turned off. All our weekend plans were cancelled and we spent the weekend here at home worried about what was going to happen. On May 29th he was back in surgery to have a new lead placed. We have been battling seizures ever since, some days over 200. It’s just been the last two weeks that we’ve started to see him perk up again. He had been sleeping about 17hrs a day. Now he’s able to stay awake all day, with just a little rest in the afternoon. He’s requiring a good 12hrs of sleep a night, but sleep helps his body heal.

We’ve prayed and prayed that the implant will start working again, that his body will respond. It took 41 days for us to finally start to see success again. His seizures are now back down to about 50/day and we long for the day he is seizure free again.

Drew Makes A Wish

Thursday, January 22, 2009

Map

Tuesday, December 23, 2008

Our Day in Pictures 1-Highlights-7

Monday, December 22, 2008

Our Day in Pictures 6

MAW Trip Day 6 - Epcot

MAW Trip Day 6 - GKTW Meet 'n Greet

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