Out on the beach, that magical place of seashells and sandcastles, the place where you relax and think all is well with the world and nothing bad will ever happen, something did.
Riah was happily building a sandcastle and needed some water from the ocean so he grabbed his bucket and tried to get up. He couldn't. His legs would not hold his body weight. He couldn't even straighten them out.
This time it was both legs, not just one like the time before. This time his ankles and calves were fine. It was his thighs. He literally could not straighten them and they could not support his weight.
He brushed off our questions about where it hurts and complained bitterly about how he needs water. I wanted to laugh and cry at the same time. That's definitely living for the moment- never mind that one minute your legs work and the next they don't. Lets finish the sandcastle, then we'll check it out.
So that's what we did. I got him one bucket of water but after that he got his own. Busily crawling around on his hands and knees, wincing with pain, he finished his project.
Riah hates when we make a big deal out of anything concerning him, especially in a crowd of people, so we kept quiet and let him go. There wasn't a whole lot I could do since we were out on the beach. We could have gone back to our house, but he would've been furious and it wouldn't have changed anything. I happened to have some essential oils in my purse so I massaged his legs with them, then immediately emailed his Drs., not bothering to call since obviously we're far from home and couldn't rush him to the hospital anyway.
We sat back in our beach chairs and pretended all was normal. Riah got around so fast that the other kids and friends who were with us never noticed he wasn't walking. They were taking turns burying each other in the sand and when it was Riah's turn all that was visible was his beaming face. He looked perfectly healthy and happy. No one would ever have guessed that buried under the sand were crippled legs.
Sweet Relief. Three hours later Riah was back to normal. His daddy took him away from everyone else and they chatted and played in the play ground and his legs gradually started working again. This time it did not take three days. Only three hours.
Three days or three hours... Either way I really want to know what's going on. Riah's Drs. didn't seem to think the first episode was connected with his MD. But now it's happened again and its too much of a coincidence not to be connected to his muscular dystrophy.
So far Riah's muscular dystrophy is different then most cases. I like it. Good things can come from the unexpected. Bad things too maybe, but we don't know that, so we continue on in faith and hope. As weird as it may sound, these episodes are giving me a little bit of new hope because it may mean he has a different type of MD then what we think, perhaps one that has a longer life expectancy, or better life quality or one that can be better helped.
That night Riah didn't sleep for a long, long time and he had behavior issues he hadn't had in months. Showing his anxiety and fear.
He's all back to normal though, happy as ever, loving the warmth and sunshine.
Just another day in Paradise.:)
Thursday, January 22, 2015
Monday, January 19, 2015
Fighting MD for Riah in Florida
I would much rather have a healthy child then spend a month in Florida.
But taking what life has given us, I won't complain about being here. We're so glad Riah can be enjoying warm, balmy weather instead of the bitter cold that would be making him achy and miserable.
That's our guess anyway. Riah is only 4 and he doesn't exactly go into detail about how and what hurts. He just gets grumpy and moody when something is not right. We know the cold makes him miserable and we're guessing poor circulation and achy muscles.
My husband and I have this more or less unspoken agreement about vacations. He does all the searching, planning and reserving: and I don't complain about what he finds.
The week before we left I finally got time to go online and look at the house where we'd be staying for 4 weeks. Nice house, check. Bedrooms for everyone, check. Lakeside..... a moments worry, but the kids are old enough not to wander off plus the 3 oldest can swim, so check.
We get here New Years eve, already dark so we unpack, find our beds and after an 18 hour drive, collapse into them.
The next morning we wake up to bright sunshine, balmy although not hot weather.. and a lake 30 feet from our house.
We're in Florida, out in the middle of nowhere, in a retirement development, lakeside, with all kinds of wildlife including alligators, an egret named Fluffy...
We adjusted quickly. The kids swim safely in the pool enclosed by the screened in porch with endangered species right outside watching and hoping we'll feed them the remainder of our breakfasts.
I sit with the kids, not being brave enough to venture outside the screens.
After awhile though, I had enough. I was going to sit right outside, gators or no gators. Needless to say, that was the day we saw the first gator, sunning itself out in the lake, close to the bank. I stayed inside.
But now its 2 weeks into our stay and my chair is permanently outside the screens .One eye is kept on the lake, the other on the kids in the pool. They have strict orders to tell me if they see a gator rise up out of the lake.
Meeting our next door neighbors made me feel welcome in more ways then one. It all began when they waved at the boys who interpreted that to mean "Come on over." I don't like to intrude but I had to bring my boys back home. So we went over and made introductions and were rest assured they don't mind the noise of kids every once in a while. Whether they were speaking for the whole community is not known to us, but it felt good to hear that from them.
They told us about the history of the alligators in the lake. Apparently there currently are only baby gators in this particular lake. The 10 foot 400 pound gator has been removed and taken to a larger body of water last year. However they do not recommend our two youngest spend time out by the lake all by themselves, since even baby gators get hungry.
It works great. The kids have a very healthy respect of the lake and they do not wander out by themselves, leaving me worry-free.
The lake has proven to be a great highlight of our Florida stay. The girls are taking lots of pictures and learning about wildlife so our Florida adventure is more then just sunshine and swimming.
It actually is much more then that, of course. For my husband, its work from ? to 5:00. For the girls its cyber school every weekday. For me, its the usual cooking and cleaning, laundering and teaching and mothering that some days feels never ending and in all reality probably isn't. Might as well be honest here.
For the boys though.. pure bliss. Which was a huge reason for us coming to Florida in the dead of winter. I wish everyone could have seen Riah the first few days experiencing the warmth of the pool and sunshine, even the grass.. He mastered the art of staying afloat and swimming with the help of a life jacket and his excitement was contagious. His eyes were all lit up and he couldn't stop laughing out of sheer happiness. We took pictures although they don't do justice.
But seeing him happy, relaxed, pain free, plus making family memories....
Mission accomplished.
But taking what life has given us, I won't complain about being here. We're so glad Riah can be enjoying warm, balmy weather instead of the bitter cold that would be making him achy and miserable.
That's our guess anyway. Riah is only 4 and he doesn't exactly go into detail about how and what hurts. He just gets grumpy and moody when something is not right. We know the cold makes him miserable and we're guessing poor circulation and achy muscles.
My husband and I have this more or less unspoken agreement about vacations. He does all the searching, planning and reserving: and I don't complain about what he finds.
The week before we left I finally got time to go online and look at the house where we'd be staying for 4 weeks. Nice house, check. Bedrooms for everyone, check. Lakeside..... a moments worry, but the kids are old enough not to wander off plus the 3 oldest can swim, so check.
We get here New Years eve, already dark so we unpack, find our beds and after an 18 hour drive, collapse into them.
The next morning we wake up to bright sunshine, balmy although not hot weather.. and a lake 30 feet from our house.
We're in Florida, out in the middle of nowhere, in a retirement development, lakeside, with all kinds of wildlife including alligators, an egret named Fluffy...
and a wood stork named Woody.
We adjusted quickly. The kids swim safely in the pool enclosed by the screened in porch with endangered species right outside watching and hoping we'll feed them the remainder of our breakfasts.
I sit with the kids, not being brave enough to venture outside the screens.
After awhile though, I had enough. I was going to sit right outside, gators or no gators. Needless to say, that was the day we saw the first gator, sunning itself out in the lake, close to the bank. I stayed inside.
But now its 2 weeks into our stay and my chair is permanently outside the screens .One eye is kept on the lake, the other on the kids in the pool. They have strict orders to tell me if they see a gator rise up out of the lake.
Meeting our next door neighbors made me feel welcome in more ways then one. It all began when they waved at the boys who interpreted that to mean "Come on over." I don't like to intrude but I had to bring my boys back home. So we went over and made introductions and were rest assured they don't mind the noise of kids every once in a while. Whether they were speaking for the whole community is not known to us, but it felt good to hear that from them.
They told us about the history of the alligators in the lake. Apparently there currently are only baby gators in this particular lake. The 10 foot 400 pound gator has been removed and taken to a larger body of water last year. However they do not recommend our two youngest spend time out by the lake all by themselves, since even baby gators get hungry.
It works great. The kids have a very healthy respect of the lake and they do not wander out by themselves, leaving me worry-free.
The lake has proven to be a great highlight of our Florida stay. The girls are taking lots of pictures and learning about wildlife so our Florida adventure is more then just sunshine and swimming.
It actually is much more then that, of course. For my husband, its work from ? to 5:00. For the girls its cyber school every weekday. For me, its the usual cooking and cleaning, laundering and teaching and mothering that some days feels never ending and in all reality probably isn't. Might as well be honest here.
For the boys though.. pure bliss. Which was a huge reason for us coming to Florida in the dead of winter. I wish everyone could have seen Riah the first few days experiencing the warmth of the pool and sunshine, even the grass.. He mastered the art of staying afloat and swimming with the help of a life jacket and his excitement was contagious. His eyes were all lit up and he couldn't stop laughing out of sheer happiness. We took pictures although they don't do justice.
But seeing him happy, relaxed, pain free, plus making family memories....
Mission accomplished.
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