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Welcome to Logan's website. On October 26, 2004, Logan was diagnosed with MPS II (Hunter Syndrome). He is missing a single enzyme which is responsible for breaking down and recycling long sugar chains (GAGS) within his cells. Without this enzyme, GAGS are building up in cells throughout his body, causing progressive damage. Logan is significantly delayed in all areas of development. His joints are stiff, making it hard for him to move. He is frequently ill with respiratory infections and uses BiPAP and oxygen at night to help him breathe. He has moderate hearing loss in both ears and wears hearing aides. He has hydrocephalus and had a shunt placed in July 2007. He has had many other surgeries and procedures to help control the symptoms of Hunter Syndrome. There is no cure, but in July 2006, the FDA approved the first ever treatment. Elaprase replaces the enzyme that is missing in Hunter syndrome. Logan had his first infusion on October 17, 2006, and he will need weekly infusions for the rest of his life or until a better treatment comes along. Since beginning Elaprase, Logan's breathing has stabilized, his internal organs have returned to normal size, and his hair and skin have become softer. Unfortunately, Elaprase cannot reach the brain and Logan's cognitive abilities have continued to decline. He can no longer speak or sing and he does not know how to play with most toys. He finds joy in his tv and books, and his smile and giggles are contagious. He has brought so much to our lives and we are so happy to be his family.
Thank you so much to all of you who supported Logan's Heroes this year! We raised an unprecedented $4000! In 5 years, our friends and family have helped us raise over $17,000 for the National MPS Society through this fundraiser. You are all amazing and we are so lucky to have you! I am taking the Logan's Heroes slide show off of this page, but you can watch it any time here: Logan’s Heroes webpage.
Here are some pictures of Logan's Make a Wish trip to Disney. Enjoy!
Journal
Thursday, July 2, 2009 3:49 PM CDT Hi everybody,
We've been keeping busy around here and finally feeling like it is summer (although our weather still doesn't seem like it!) The kids were finally done with school last Wednesday. NY schools get out so late! I had all three kids home last Thursday and Friday and this Monday and Tuesday. Logan went back to school for his summer program yesterday. Today, he stayed home for his infusion, which went well, and tomorrow they are off for the 4th. He will have a full week next week.
Last Saturday Avery's Brownie troop spent the day at a local state park for their end of the year celebration. We have had a lot of rain lately, but most of the time we were there was okay. The kids enjoyed playing in the sand and wading in the lake. Logan really liked the water (knee high is more his speed than a full pool), but we had to watch him when we walked him across the sand because he kept trying to grab a handful to eat! He was even grabbing handfuls of grass and trying to eat them when we had him in the grass.
I've been working on my vegetable garden, but with all of the rain we have had lately, we are overrun with snails and slugs, and the weeds are gaining ground. Fortunately, the plants are growing well and we have already harvested spinach, lettuce and some carrots (when I was thinning them!) We will have peas soon and our tomatoes and peppers are blossoming. The squash, pumpkins, beans, onions, and broccoli have a ways to go, but they are looking good. If it would only stop raining, I might be able to get more of the weeds out! Forget about my many flower gardens- the weeds are definitely out of control there!
Our town has a great summer recreation program. I signed both girls up for swimming lessons (6 weeks- 5 days a week) and Avery is signed up for the drop-in playground. It is all free, which is a great bonus! Avery could have taken tennis lessons or played baseball, but we thought that this was enough for now. Logan will take swimming lessons once a week with his class.
It is 5 pm and looks like dusk. It is raining again! I am so sick of it. It has rained almost every day since we got back from Florida! For the moment next week looks better, but I'll believe it when I see it!
One of these days, we are hoping to camp out in our backyard. We would love to take the kids camping this summer! Those who know us know that Andy and I did a lot of backpacking before we had kids. Since Logan's diagnosis, though, it has been hard. This year, Logan's breathing is pretty good, relatively speaking, so we would feel safe being without electricity for a night if he wasn't sick. The question is- will he sleep in a tent??? Since recent trips with Logan have meant a lot of sleepless nights, we figured our backyard is a good place to start. If Logan decides to stay up all night, one of us can take him back in the house and the others can still sleep in the tent. If it EVER stops raining, we are going to give it a try. If that works, the state park where Avery's Brownie celebration was held is less than half an hour away, so we will give that a try. In a pinch, one of us could always bring Logan home for the night and then go back to the campground in the morning. We really want to let our girls experience camping with their family, so we are trying to get creative about how we can do it!
Our new respite worker came out to meet us yesterday. She is a college student who lives here in town, so she is available for the summer. We are going to have her come out Tuesday and Thursday afternoons for the summer. Hopefully, she will be comfortable enough with Logan that we will be able to leave him with her while we do things with the girls. Like camping, hiking is something we had always planned to do with our children, but unlike camping, hiking is something we know Logan can't do. If we can find someone to stay with him, we hope to get some hikes in this summer too.
We had a wonderful final gift when we left GKTW. They gave us a passport that allows us to go to hundreds of different amusement parks around the country (and the world) for the next year. We can go to any of the parks once (free!) as long as we make reservations in advance. Obviously, most of the parks would be too far to travel, but there are a couple in our area and several near Andy's parents' house that we hope to visit. We could potentially have a very busy and entertaining summer!
Thanks for checking in on Logan! I'll update again soon.
-Robin
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