|
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 2006. 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 everyone who supported "Logan's Heroes" this year! We raised a total of $3660.90! This was our highest total ever! In 4 years we have raised more than $13,000, thanks to our family and friends. We have truly made a difference!
Journal
Wednesday, November 19, 2008 9:23 AM CST Hi everybody,
Poor Logan has a whopper of an ear infection. He had some cold symtoms starting last week. They never got too bad, but he was extra sleepy over the weekend. On Monday morning, he whimpered a bit when I got him up, and then again when I took him out to the bus, and then he was pretty quiet at school all day. He had a follow-up with the pediatrician scheduled for yesterday, so I waited until then to have him checked out. Shortly before I got to his school, he started crying inconsolably for no apparent reason. Since Logan virtually never cries, his teacher was really worried. We were both relieved when the doctor found an ear infection. It is the same ear as last time. The tube in the other ear is partially out, but it must still be working enough, because that ear has been fine. We have stronger antibiotics for him, so hopefully he will be feeling better soon. Now that I know what is wrong, I have been keeping him dosed with ibuprofen for the pain, and it seems to be helping.
Avery had her physical yesterday, and for the first time since Logan was a year and a half, she outweighs him! She is also about 5 inches taller now, so I think his growth has slowed down. Kids with Hunter syndrome generally don't grow to be much taller than 4 feet (he is 43 inches now), although Elaprase may change that. Without treatment, a lot of boys start off very tall, and then gradually slow down, which is what Logan seems to be doing. Only time will tell.
We finally heard back from Make-A-Wish, and Logan has been approved to get a wish! The wish granters will be coming out in the next few weeks. The "wish" has to come from Logan. Since he is non-verbal, they will have to go by behavioral cues to figure out what he would like. He is so enthusiastic about things that he likes, that I don't think it will be too hard for them to come up with something.
We found out on Monday that waiver funding has been completely stopped for anything over $500. Since our ramp will be significantly more than that.... Anyway, Logan's service coordinator wants to temporarily switch him to a different waiver program- Long Term Care instead of the Home and Community waiver. It would cover our ramp and any other home modifications we need (we will need some bathroom modifications and we would like to have some shelves or cabinets built in Logan's room to store his medical equipment out of his reach). Unfortunately, we would lose our respite care for the time we were on that waiver. We don't use respite often (we keep saying we need to use it more), but it is nice to know it is there if we do need it. Right now, our service coordinator is looking into a portable ramp that we could use for the winter. If that could be covered by his current waiver, we will probably go that direction and then have a permanent ramp built in the spring or summer when funding is available again. If we can't get a portable ramp, we will probably switch and give up respite for a while, because I don't think my knees can take a whole winter of carrying Logan up and down the stairs.
I don't know if Logan will be getting an infusion this week or not. Since next week is Thanksgiving, he won't get one then, so I would really like to. If his ear is still bothering him, though, we won't be able to. I am keeping my fingers crossed that we will only have to do one more infusion at the hospital. It might be more than that, but I can hope!!!
Thanks for checking in on Logan. We have a lot going on again, so I will update again soon.
-Robin
Read Journal History
Links:
|
|
