I think this little clip speaks for itself, don't you? If this doesn't give you a chuckle, then nothing will...
On another note, our Brother Bear met with his neurologist this week, during which, some of the seizure myths were demystified for us. The most important thing that we learned was actually something that helped to alleviate our worries! For a change... Anyway he told us that the freaky seizure that landed us in the ER is actually a preferred type of seizure for people who suffer from epilepsy. Technically it was a partial seizure that only affected his arm and leg and didn't inhibit his responsiveness or any other thing. He went on to say that people can have this type of seizure for years without any damage to the brain. But even for this kind of a seizure, an hour, is one hour way to long. Next time, and I pray every night that there will not be a next time, we need to give him the diastat right away, and then take him into the ER. The longer the seizure goes, the harder it is to stop, which is why it took the ER docs two full strength doses to stop his.
On other topics, such as a possbile connecttion between his eyes and the missing corpus collasum, the doc was not going out on a limb to make any diagnosis. Well, this is Leo we are talking about....
He does find ways around all that stuff.
However, in the light of his recent seizure activity, he ordered a 24hr EEG to check on the electricity in his brain to better determine what dosage to use for his med. What this means is that if the test shows that his brain is "quiet" (low on the electrical activity that can spark seizures), then he will keep him at the same dose. However, if his brain is really active in that way, and looks to be right on the edge of seizures, he will up his dose without waiting for him to actually start seizing. This was as pro-active as I could get him to be. It does make sense to me, but I'm not looking forward to the struggle of keeping the plugs and wires on Leo's head and not in his mouth, floor, diaper, cat, etc, for 24hrs. At least we don't have to be in the hospital the whole time; he gets to wear the whole smashing headgear home. Yeah, that's not going to be fun. When our daughter had to wear the heart monitor for a day, I ended up duck-taping it to her onesie. Why do I get the feeling that's not going to be enough this time?
Anyway that's going to happen on the 19th.
Thanks for reading, and seriously, keep in touch, don't be afraid of the comment section...
Those who follow our crazy story online only, and those who we may never meet, don't be shy to introduce yourself! It helps to keep me writing, knowing that there are folks out there who get excited about new chapters in this nutty Leo chronicle. Hey, this goes for our friends too!
On another note, our Brother Bear met with his neurologist this week, during which, some of the seizure myths were demystified for us. The most important thing that we learned was actually something that helped to alleviate our worries! For a change... Anyway he told us that the freaky seizure that landed us in the ER is actually a preferred type of seizure for people who suffer from epilepsy. Technically it was a partial seizure that only affected his arm and leg and didn't inhibit his responsiveness or any other thing. He went on to say that people can have this type of seizure for years without any damage to the brain. But even for this kind of a seizure, an hour, is one hour way to long. Next time, and I pray every night that there will not be a next time, we need to give him the diastat right away, and then take him into the ER. The longer the seizure goes, the harder it is to stop, which is why it took the ER docs two full strength doses to stop his.
On other topics, such as a possbile connecttion between his eyes and the missing corpus collasum, the doc was not going out on a limb to make any diagnosis. Well, this is Leo we are talking about....
He does find ways around all that stuff.
However, in the light of his recent seizure activity, he ordered a 24hr EEG to check on the electricity in his brain to better determine what dosage to use for his med. What this means is that if the test shows that his brain is "quiet" (low on the electrical activity that can spark seizures), then he will keep him at the same dose. However, if his brain is really active in that way, and looks to be right on the edge of seizures, he will up his dose without waiting for him to actually start seizing. This was as pro-active as I could get him to be. It does make sense to me, but I'm not looking forward to the struggle of keeping the plugs and wires on Leo's head and not in his mouth, floor, diaper, cat, etc, for 24hrs. At least we don't have to be in the hospital the whole time; he gets to wear the whole smashing headgear home. Yeah, that's not going to be fun. When our daughter had to wear the heart monitor for a day, I ended up duck-taping it to her onesie. Why do I get the feeling that's not going to be enough this time?
Anyway that's going to happen on the 19th.
Thanks for reading, and seriously, keep in touch, don't be afraid of the comment section...
Those who follow our crazy story online only, and those who we may never meet, don't be shy to introduce yourself! It helps to keep me writing, knowing that there are folks out there who get excited about new chapters in this nutty Leo chronicle. Hey, this goes for our friends too!
This all sounds like good news. I'm glad they'll consider upping the dose BEFORE he evidences any more seizure activity. That's great. (c:
ReplyDeleteThe wires will all be more or less attached to a cap and then will be bundled together. The bundle can probably be "duck taped" to the back of whatever he's wearing to keep it out of sight and reach and another one of his caps can be put on top of the electrode cap. At least, this is what I think it will look like based on my experiences with adults.
I've been here since the beginning and don't plan on leaving. I couldn't imagine my not knowing how little Leo is doing! He's always in our prayers.
ReplyDeleteAmy
I have been following for about a year. He is a couple of months younger than my daughter. I have been praying for him and have been so happy at his progress!
ReplyDeleteWhat a happy child:) Praying for him.
ReplyDeleteYou are an inspiration to me! I know Leo's grandparents and have been following your blog from day one. My thoughts and prayers go out to you guys on a regular basis and I love reading about how the little guy is doing ~ an amazing story to watch unfold! Thank you for being so open and sharing your heart!!!
ReplyDelete~Meg O'Leary~
Please keep writing & updating us on Leo! I check your blog daily to see if there's an update! Reading about his progress is reading about the unmistakable hand of God at work. It is amazing to see what the LORD is doing with your little man. Thank you for taking the time to share your life with us!
ReplyDeleteKMac
Such a cute video! Thanks for sharing. I also like the EEG monitoring to see how active this activity is... dosing where needed. Totally got a huge chuckle with his laughter...thanks and to his engine behind him...thanks, too! broom broom :-)
ReplyDeleteI have visited every day since Leo was born, and every morning I spend time discussing him with our Father. He says he loves him and always will. Me too. Claire
ReplyDeleteI continue to check your blog constantly and Leo will always be in my prayers! He is so lucky to have such a wonderful family.
ReplyDeleteI can't even remember how I was directed your way, but I've been following your blog from the beginning. I have a soft spot for Leo for so many different reasons, not least being he's privy to the great folks at DHMC! I volunteered there quite a bit in college. :) Your blog is full of sweet strength -- even the hurting honesty -- and it's a joy to be a part of this journey, if only through praying & reading. Thank you.
ReplyDeleteHello ~ Where did that comment go that I just tried to post?? Anyway ~ please know that warm thoughts are coming your way from Christine and Hans in Maine.
ReplyDeleteLove the squeals and belly laughs
ReplyDelete