Drew Makes A Wish: October 2008

Tuesday, October 21, 2008

A Scare & Lucky Dawg

Drew caught a cough somewhere and that brought on a major increase in his seizure activity. Because of the increased seizures I was using his magnet more (it turns on his VNS). My mom had agreed to watch the boys for me while a ran to pick Meagan up from the college. Before I could get back mom had called to say Drew was having pain in his neck. This is the complaint he had back in May when his lead went bad (the lead goes from the pulse generator and hooks to his Vagus Nerve). I decided to bring him home and watch him.

I could tell him implant was still going off but as his seizures increased and his pain intensified I became more concerned. I called the Nurse Line and we were quickly on our way out the door for the hour+ drive to Seattle Children's. Our Dr (who we love and cherish) would wait for us in clinic to make sure he was seen. Thank heavens his lead & generator were fine.

The cough was causing more seizures so I used the magnet more, using the magnet more irritated the Vagus Nerve, irritation of the Vagus Nerve brought on pain and discomfort, pain and discomfort brought on more seizures. It was a rough few days until we got that nasty cough under control.

This last weekend Drew was chosen to be the MAW "Lucky DAWG" at the University of WA football game. It was such an awesome experience. He carried the football they gave him around for days. It even went to school the next week, in his backpack, so he could share it with his classes. Watching him tossing the ball with the Husky Mascot was so overwhelming. It was definitely one of the highlights of his day.

My sisters Paula & Sharon, BIL Jerry, niece Brittany and nephews Justin & Brandon got tickets to the game to support Drew. MAW gave us tickets for Drew, Steve, Zander and I. My mom was all too happy to stay home with Ryan & Madilynn.

The highlight for me, besides tossing the ball, was to be on the field with a flag that big while our national anthem was sung. I have never seen a flag that big before and as the color guard started the flag rippling as they sang O say, does that star-spangled banner yet wave I couldn't help but cry. Then the National Guard did a fly by. Very cool. A day forever etched in my heart.

Here's pictures I took

And here's the pictures MAW took

Friday, October 17, 2008

A BIG Day

This picture brings tears to my eyes. It's taken hours and hours of practice and an amazing amount of determination.

A Tribute

On Monday, September 22, 2008 some friends of ours lost their little girl, Mara, to cancer. Mara had DIPG. Only 200 cases a year are diagnosed. She fought a tough, couragous fight for 11 months. There needs to be more research and help for these young children. They suffer so :(

We attended a balloon release at my kids school for sweet Mara. She is one of the most amazing little girls. Her family's some of the most wonderful, christ-like people I know. I've learned so much from this family and am very honored to have them as friends/neighbors.

Saturday, October 4, 2008

In the online community that I've met so many Wish Families, there is a group of people that like to sew. A lot of what they sew is Disney related :) Some of those people have formed a group and adopt MAW families that are planning trips. They sew custom clothing, make custom autograph books, etc

I received an email on Thursday from a member of the "Big Give Group" asking if they could include our family in their continued amazing service. I sat and cried and cried. It's very overwhelming to know so many thoughtful and caring people are willing to put so much time and effort into making all these children, and their families, feel so blessed - to make their trip so amazing.

I've spent the last couple of days looking at pictures of some truly amazing creations. So inspiring. I can only dream of being able to sew like that.

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

Tuesday, October 21, 2008

A Scare & Lucky Dawg

Friday, October 17, 2008

A BIG Day

A Tribute

Saturday, October 4, 2008

Drew's Pooh

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