Drew Makes A Wish: MAW Trip Day 2 - GKTW Christmas Party

Thursday, December 18, 2008

MAW Trip Day 2 - GKTW Christmas Party

We were a little late getting back to the Village so we ran to join the festivities as soon as Steve had parked the van. There was a group there that was handing out presents to all the kids. Madilynn didn’t waste any time at all joining in on the dancing.

The kids all got snow cones and then we were off to visit the Jolly Old Man himself.

Afterwards the kids all got to pick a gift from GKTW. Thankfully Gramma has arms able to hold snow cones and gifts for half of the kids. We found a box to put the gifts in and Steve ran them to the van.

Meagan posed for a few pics to text home.

Drew had his picture taken with Mayor Clayton & Miss Merry.

Next was a quick stop by the cookie table. The gals there were so nice. One kept trying to convince Ryan to put more and more and more of EVERYTHING on his cookie. It was cute.

We headed back to our villa and ordered pizza. The kids opened their gifts and we had a nice relaxing time.

We all got a good laugh out of Meagan & Brittany's gifts. At least now they had their own Barbies to play with Madilynn.

I started the kids baths - they all wanted a turn at the jacuzzi. I was getting jammies and stuff ready while Steve ordered dinner and ran to get new camcorder batteries & discs from the Media Center. I sat on the couch for a minute when one of the kids mentioned that Drew was in the bath. I ran in - he was under the water seizing. My heart sank. How on earth could I have left him there. We don't allow baths at home for that very reason. I felt absolutely horrible. Thankfully he was ok. I finished washing him up and got him out. We waited a bit for the rest of the baths.

After pizza Steve drove Gramma & Brittany back to POR while I bathed the rest of the kids and got them tucked into bed.

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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

Thursday, December 18, 2008

MAW Trip Day 2 - GKTW Christmas Party

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