Drew Makes A Wish: September 2008

Saturday, September 27, 2008

MAW sends us to the Circus

I knew that MAW would grant Drew's wish but I never knew or even thought they would add in other things. Yesterday they sent us to see Circus of Dreams in Seattle. It's an Aerialist Circus, the most amazing show I've ever seen. The kids were all impressed and totally enjoyed the show.

Here's pictures of our day. It was an absolutely beautiful day so after the circus we drove through downtown and along the waterfront.

Checking in and getting their "clappers" and gift bag of stuff from Children's Hospital

Which were quicky turned into swords.

The kids really enjoyed the show.

After the show we got to go backstage and talk with the performers and have treats. The kids really enjoyed that.

Madilynn was our Autograph Expert. She loved getting everyones autograph and was constantly on the hunt for a new one. It was so cute.

Ryan especially liked the Pirate Girls.

The show was amazing. All the kids had fun. A much needed beautiful day.

Thursday, September 4, 2008

Compassion

When I found out Drew's wish was to go to Walt Disney World I immediately tried to talk him into Disneyland. He was having none of that. It is his wish, I will support him in that. Even though the flight worries me and I'm not really comfortable taking him that far from his doctors here.

I started looking around on the internet trying to find any and all information I could to help ease my heart and mind. I came across a story of a family that had taken their daughter to WDW and had stayed at an amazing place called Give Kids the World (GKTW.org)

What an absolutely amazing place. The story of their trip is definitely a Kleenex read. From there I found more stories of families that had also taken amazing Wish Trips there. These families share their stories and advice to help us that are now planning.

I have also found many new friends planning their children's Wish Trips to WDW. We will all be going at various times. We will all be staying at GKTW. It's nice to meet other parents that understand what it's like to have a special needs child. It's a hard, sad, joyous, encouraging, rewarding road to walk. It's nice to talk with others that understand the many ways our hearts are pulled. It's also nice to plan together and share ideas. We're even going to be lucky enough to meet a family or two while we're there :)

One of the families I met online is going just a few days before us. They will be heading home while we are headed there. Her little boy has Giant Cell Tumors. They've had a very trying year this year too. She instantly started "Project Pixie Dust" We were blessed with her generosity. The kids received a package with baggies full of things to keep them busy on the airplane.

Thank you so much Greenwalt Family.

Wednesday, September 3, 2008

Another Reason to Celebrate

Today is not only the first day of school but it's Drew's 10th Birthday!! I can't believe he's 10 already.

Drew also received a birthday package from his MAW Granters.

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, September 27, 2008

MAW sends us to the Circus

Thursday, September 4, 2008

Compassion

Wednesday, September 3, 2008

Another Reason to Celebrate

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