Drew's Wish Comes True...

[LuvGoing2Disney7]

Finally starting our pre-trip.

Mid-July we got the call saying our son had been approved for Make-a-Wish. A few days later we got a call from a very nice man. The next evening (July 31) Mr Ken & Ms Laurie came to meet Drew. Seeing as they were so on top of things, we hadn't even gotten the packet from MAW and they hadn't received our info sheet. Drew was shy at first but warmed up to them in no time. Thankfully Gramma took the younger siblings to the park so Drew was able to answer for himself and have one-on-one time. It was a great evening.

A few days later we got a call saying his wish had been approved and they were just waiting on the doctor's letter stating Drew was well enough for travel. We had our appt with our doctor today and he's been released for travel. I'm a bit scared to go that far from our security network here and to fly across the country, but I know this will be an amazing trip for my son and that he so deserves it.


We gave our preferred dates and are tentatively booked at Give Kids the World for the third week of December. We are getting VERY excited and learning so much here on the DIS

 

[LuvGoing2Disney7]

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. 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 robbed Drew of his ability to talk for the next year. For the next four months or so we thought it was just a fluke. Then we noticed small twitching, blank stares and quite a few falls. We 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.

Then 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.

 

[LuvGoing2Disney7]

This is a picture of Drew a few weeks after his first surgery in Oct 2007. We drew the green (his favorite color) circle to show family and friends where the generator sits.

 

[bex271]

that is such a touching story. I hope that he starts having some seizure free days soon. We're a wish family too and look forward getting to know you and your family.

becca

 

[ibdamamma]

What a touching story, I can't wait to hear all the planning details! I pray for some relief for you soon

 

[twinmum]

Hello and welcome to the Wish family group! You'll find that many of us can relate to at least some element of your story, so we do appreciate how tough the last years have been.

In my case, my twin boys were born >3 months prematurely, and had significant respiratory issues, so I can relate to the nebulizer and treatments very 2 hours when they are sick. I remember nights at home, holding that masking, praying that we could turn it around and avoid yet another hospital visit. It seemed that things got better around age 8 (they are turning 10 in the fall). They spent the first few years not mixing it up with other kids - which wasn't so bad because they always had each other as playmates.

I can also relate to your story about the VNS. The son of one of my friends developed a seizure disorder post-encephalitis. He had the VNS placed about a year ago, and it has made a big difference in all of their lives. Adam has had significant brain damage due to the seizures, but he is now more alert and definitely is more peaceful. It was so difficult for his parents to wwatch their son endure relentless seizing - something I know you can understand.

We can all relate to a child who faces challenges (one of my sons has cerebral palsy and some related medical issues). It's a bond that draws us all together, and you'll find this to be a very supportive group. The other thing that draw us together is our excitement about our trips, both upcoming and past. Whenver you're having a down day, just come on over here and read a trip report or two. It's a real pick me up!

We'll look forward to hearing more about your planning!

Alison

 

[Lambflock]

I am very touched and moved by your story. My son Hank has seizures too. Not fun and soooo scary.

I can't wait to hear more of your trip report!!!

 

[bigdisgrandma]

Welcome to the Wish Tripper family. We will be excited to hear about your plans, your excitement, your struggles and your setbacks. We have pretty much all experienced them as well. My family will remember your family in our prayers if that is alright. Sometimes, that is all anyone can do for others but know that we will all be there for you and cheering you and Drew on toward your wonderful wish trip! Christmas time is such a wonderful time at Disney World. Your family will love it!

Denise

 

[mistymouse5001]

Oh, wow, what a strong young man you have there. My sister had SM and seized her entire childhood also. It involved alot of hospital stays and brain operation. She later recovered, and has grown up to be quite independant.
I'm so happy his wish is coming true! It is something good you can focus on for a bit. We love you and your family and all of our prayers be with you.

 

[oklamomof4boys]

Welcome to the Wish Family! We will be at GKTW the month before you. My son also has seizures- but not to the extent that your son does ( he had one in the NICU that lasted 7-72 hours- they're not sure when it stopped because they gave him meds to paralyze him since he was jerking out his vent. Then he went 8 years without a seizure before he started having them again. Luckily, they are controlled with meds). Nathan's main health concern is his heart. Thank you so much for sharing your story. There are many of us who understand some of what you are going through. We will keep Drew in our prayers and celebrate with you when you report that he has a seizure free day!!

Carol

 

[LuvGoing2Disney7]

Drew just got back from spending 4days/3nights at seizure camp. It was so hard to let him go and have someone else, that I don't know, take care of him. I don't even leave him when he's in the hospital.

He had a great time and made friends and got to meet other kids his age with seizures. He really needed that. Zander got to go as a sibling support and also had a great time and made friends. Both boys are looking forward to going again next year.

 

[LuvGoing2Disney7]

Saturday we had a family picnic to celebrate Drew's upcoming birthday. It was a beautiful sunny day and we all had a great time visiting. I was surprised when I asked him what kind of party he wanted and he said all he wanted was a picnic with just family

Here's a picture of Drew and my Grammie

 

[LuvGoing2Disney7]

I guess my pictures are either too big or too small, no happy medium. I'll keep trying. I have so many pictures I want to share

 

[LuvGoing2Disney7]

You know it's a good party when they're all tired out

 

[ibdamamma]

Your boy seems so sweet, and your pictures only seems to defend my statement. Don't worry about the size of the picture, I can't figure how to get them right either

 

[LuvGoing2Disney7]

We've been blessed by Pixie Dust The kids received a package from our AMAZING Amber. They were so very excited. Thank you so much Amber, Sebastian & family.

Drew also received another exciting arrival, a birthday package from one of his MAW volunteers.

Things are starting to pull together. I've made a few ADRs. There were only a couple I wanted as GKTW will feed us. It took four phone calls over five days but we got them

It's been a big week around here. Drew's birthday was yesterday. My sweet boy is 10! How can that be?

It also happened to be the first day of school, that did not make him happy. His teacher is very nice and eager to learn how to care for him. It was hard to leave him there but they had a great day and he came home with a smile.

Yesterday was a very long day for him. Today he seemed to do much better going just a half day.

 

[LuvGoing2Disney7]

Here's pictures of the kids opening their gifts from Amber, Sebastian & Family

Thank you so much Amber. They loved it (I cried). This whole experience and meeting you all makes me emotional. We're all a big "family" because of the road we walk with our children

And pics of his gift from MAW

 

[bigdisgrandma]

Don't you just love packages! I don't think there is anything better than getting "real" mail. When my kids were little, they called the UPS man the "Grandma Package Man" because he always brought them packages from their Grandma in Idaho!

The time will go by so quickly until your trip. I didn't believe it but it really has seemed to just fly by and now we are getting ready to go!

Your kids are so cute. Thanks for the pictures!

Denise

 

[LuvGoing2Disney7]

Don't you just love packages! I don't think there is anything better than getting "real" mail. When my kids were little, they called the UPS man the "Grandma Package Man" because he always brought them packages from their Grandma in Idaho!

The time will go by so quickly until your trip. I didn't believe it but it really has seemed to just fly by and now we are getting ready to go!

Your kids are so cute. Thanks for the pictures!

Denise

Thanks Denise. My kids were so very excited to get "real" mail. They all had to be right there opening it. I know our trip will be here before we know it, even though it seems so far away.

 

[LuvGoing2Disney7]

All four little kids are now back in school. Zander & Drew started last Wednesday. Ryan last Friday and Madilynn today.

Drew is still struggling with even just half days. He begs every morning to stay home, some days with tears. It breaks my heart but I know he needs to go. Medically he's fine to go. The anxiety and such are adding to his seizures. Thankfully his magnet is still stopping them quickly. His teacher says he's doing good. Monday he starts his services and that will help. The class is much smaller and his service teacher is the same as last year and he absolutely adores her. Some of his pull-out time is one-to-one and the rest is one-to-four.

Now the pictures:
Zander's first day of 6th Grade/Middle School

Drew's first day of 4th Grade

Ryan's first day of Kinder

Madilynn's first day of Pre-K