Drew Makes A Wish: MAW Trip Day 4

Saturday, December 20, 2008

MAW Trip Day 4 - Magic Kingdom

A few of us weren’t feeling so well and Drew was having a lot of seizures. Somehow Madilynn lost a nosepiece on her glasses and it was impossible to find on the restaurant floor. We sent Meagan & Brittany off to Tomorrow Land so the rest of us could take a much needed break at the Wish Lounge.

The gal there was so friendly. I forgot to get her name. She called her boss to see if they knew of anywhere we could get Madilynn’s glasses fixed close by. Nope. The boys played a game of checkers while the little ones rested and watched Tinker Bell.

Ryan had great fun pretending on the Magic Carpet they have in there.

I thought we were ready to go but Drew needed to rest a bit.

Zander laid with him and the little ones played a game of checkers with Gramma. It’s best to have “help” when you have a 5 & 6 yr old trying to play LOL

The girls had called a few times to see what was taking us so long. We met them over in front of the Buzz Lightyear ride. The boys were very eager to ride. It was ok. I was expecting more I guess. This was one of Steve’s favorite rides of the day.

Zander, Brittany, Meagan, Ryan and mom went to ride Space Mountain. Drew & Madilynn weren’t interested in riding. Steve and I sat with them and saw that Mickey’s Night Before Christmas was getting ready to start so we decided to wait there. I didn’t realize I was holding Meagan’s phone so she didn’t get the text I had sent to let her know where we were. They found us just as the show was getting over. Even the bypass line was backed up so they had given them fast passes to come back in a bit.

By now it was time for them to head back so Steve and I took the other two to ride Indy Speedway. Let me just say It’s a good thing Drew isn’t old enough to drive! I loved listening to him laugh as we jerked back and forth though.

We met back up. Ryan was too afraid to ride Space Mountain once they got to the front so mom and him ended up standing there waiting for the other three to ride. This was Zander’s favorite ride of the day.

Of course once Ryan found out we had ridden the cars he too wanted a turn. At Disneyland Autotopia is themed with the Chevron Cars. They are some of our favorite cars. So the kids paired up in twos and off they went. Lots of fun was had by all.

The kids took a quick spin on the teacups while we tried to figure out what to do next. The castle is so amazing. It was hard to believe it was the same beautiful structure we had seen so lit up the night before.

Another one of the huge trees that amazed us all week.

We had missed the Lights, Motors, Action show at DHS the day we were there and we all really wanted to see that. We had also passed on Fanstasmic! Because we’ve seen it at Disneyland. I had forgotten Brittany hadn’t seen it and mom said it was one of the things she had wanted to do. So off to the monorail to DHS we went.

2 comments:

doodlebelle said...: Hi! I too am in the process of posting my son's wish trip. It's hard to get through the pictures and remember all the little details. Anyway, I was just wondering about Day 3? I am enjoying reading your blog.; January 20, 2009 at 4:58 PM
DeAnna said...: Thanks for the comment. What was your son's wish?

I kept notes in Word and have copy/paste them here. Now I'm just adding the pictures in where they go. I accidently clicked publish instead of save for Day 4 so I finished it out of order.

Day 3 is done now :); January 22, 2009 at 1:57 AM

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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 - Magic Kingdom

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