Drew Makes A Wish: MAW Trip Day 4 - Disney Hollywood Studios

Saturday, December 20, 2008

MAW Trip Day 4 - Disney Hollywood Studios

Thanks to the heads up from our new friends online, the kids rode up front on the monorail.

As we entered we caught the tail end of the Block Party Bash. Part of me was thankful but I know Ryan would have loved it. He danced and danced with them on our last trip to Disneyland in 2005.

We made a dash for the Lights, Motor, Action show. I sent Steve and Ryan ahead to ensure seats for us. Finally we were all seated. My feet were so tired. I have to say this show is AMAZING! I am so glad we took the time to go back for it. It was Meagan’s and mine’s favorite activity of the day.

It was almost time for Osborn Lights so we got our spot on the street and enjoyed some pretzels and popcorn while we waited.

This was another attraction very well done. I loved spending Christmas time at Disney.

Thankfully Toy Story Midway Mania was open this time. What a cool ride! I could have ridden it a few more times and still gone back for more. All of us thought this was a definite highlight to our day.

Mom and I took Ryan, Madilynn and Drew to get a spot in line for Fantasmic! While Steve and Zander headed over to get one last ride on the Rocking Roller Coaster and Brittany and Meagan headed for one last ride on Tower of Terror.

Fanstamic was just as wonderful as we remember. As I sat there with Drew leaning back on me, peace came over me. There are so many things in our lives that scare us and so many times we could choose to just give up but when we take control and persevere we will always win. As we sat there and he seized off and on I was thankful for my son – just the way he is. As much as it sucks, seizures are a part of Drew and they will be for the rest of his life. We have a choice on how we live with them. Madilynn snuggled down and fell asleep. I couldn’t believe it. We plopped her into the wheel chair next to Drew and headed for the gates. Steve and Zander ran to buy their picture from RR.

We rode the bus back to POR. Mom & Brittany headed to get a bite to eat with their dining plan and we stopped by Taco Bell on our way back to GKTW. I tried to talk the kids into getting pizza again but after their tummy aches none of them wanted anything to do with pizza. We learned there is one thing Taco Bell has in common across the United States – they always mess up your order. Thankfully this time it was Ryan’s food that was wrong and he’s an easy kid to please.

Finally it was time for baths and bed. I was a mean momma and made the boys all take showers and just to be fair, Madilynn had to have her bath in the other bathroom. No Jacuzzi for any of them.

I started more laundry and headed to bed myself, before midnight even.

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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

Saturday, December 20, 2008

MAW Trip Day 4 - Disney Hollywood Studios

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