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Old 01-29-2012, 07:09 PM   #1696
cgncga
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Originally Posted by lovethattink View Post
Thanks for the hugs and prayers!


We found out about a special needs baseball team. He wants to be on that in the fall. I guess we will see. This basketball is not special needs, and it's probably going to be his last year. His developmental delay is too obvious now in contrast to the other children on the team.


Thanks. He had a nice long nap this afternoon. I think he will still sleep tonight. Hopefully tomorrow he will be back to himself. Not playing today, shows he is feeling under the weather. Tonight he did set up his Jar Jar Binx Lego figures on one of our chairs. A good sign he is feeling better.

We usually do school on a Saturday so he can skip it one day during the week. Hopefully we won't see any regression this time. He was just regaining all he had lost over New Year's Break. We stopped school on the 27th when he had his EEG and started back up Jan 3. He forgot how to blend phonics to read, to add and subtract. We had finally started getting things back on track.
Poor kiddo. I'm glad it sounds like he's starting to feel more like himself again. Hopefully that continues and there are no more seizures for a while.

The special needs baseball could be a good fit for him. Grace has been part of a special needs T-ball team run by her therapy centre for the last three summers and has loved it. She'll do it again this summer, too. Our team has kids from 6 (although they let her sign up at 5 1/2) to 18 with all different kinds of challenges. It's very low key, but a lot of fun for the kids. I hope the one you found for Anikan is something like the one Grace plays in. If it is, he'll have fun.

I'm hoping his academic skills come back soon, too. Grace went through a horrible stretch of loosing skills for about a year. We couldn't figure out what was causing it for the longest time, but finally her doctors took her off of her anti-seizure meds (which I wasn't too happy about) but we found out that her skill loss was caused by the Lamictal. Hopefully Anikan's loss isn't for the same type of reason, though. Even now, if I don't keep her reading and doing math over school breaks, though, her skills can slide backwards. It's not as bad as it was a year ago, but it's often a struggle for her to maintain her skills.

Catherine
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Old 01-29-2012, 07:12 PM   #1697
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I think I did. I was miffed with the photopass photographer we got in Animal Kingdom when I saw your pics because he never told us he could do that magic shot with stitch coming out of the box!

Hope Anakin is feeling better today btw
Getting magic shots weren't easy. Mommy2mrb can attest to that, as it took her some searching to find a photopass person to take the balloons magic picture. Any photopass photographer we encountered, I asked if they could do magic shots. Many are not trained how to do magic shots, and anyone with a tripod is not allowed to do magic shots. At the AK, at a certain time, they have to use tripods and are not allowed to take it off the tripod, so their magic shots disappear way before the other park's.

Epcot and DHS were the easiest places to find people trained to do the magic shots.

That's a bummer that you weren't able to get all you wanted.

I still haven't found a person to do balloons.

Anakin is still having a good day. He did some school work earlier and I was so pleased that there was no regression with this seizure. He is still a bit fatigued even today. But he is going stir crazy at the same time. He wants to go do something outside.
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Old 01-29-2012, 08:35 PM   #1698
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Poor kiddo. I'm glad it sounds like he's starting to feel more like himself again. Hopefully that continues and there are no more seizures for a while.

The special needs baseball could be a good fit for him. Grace has been part of a special needs T-ball team run by her therapy centre for the last three summers and has loved it. She'll do it again this summer, too. Our team has kids from 6 (although they let her sign up at 5 1/2) to 18 with all different kinds of challenges. It's very low key, but a lot of fun for the kids. I hope the one you found for Anikan is something like the one Grace plays in. If it is, he'll have fun.

I'm hoping his academic skills come back soon, too. Grace went through a horrible stretch of loosing skills for about a year. We couldn't figure out what was causing it for the longest time, but finally her doctors took her off of her anti-seizure meds (which I wasn't too happy about) but we found out that her skill loss was caused by the Lamictal. Hopefully Anikan's loss isn't for the same type of reason, though. Even now, if I don't keep her reading and doing math over school breaks, though, her skills can slide backwards. It's not as bad as it was a year ago, but it's often a struggle for her to maintain her skills.

Catherine
Catherine, that's cool that Grace is on a t-ball team. From what I understand, each child has a volunteer with them the whole time. They can either use a T or have someone pitch to them. The volunteer either runs with them, or if they are in a wheel chair, pushes them to base.

As for the memory, the neuro seems to think it has to do with where his lesion is located. He's has memory problems since he was 4. He had a heck of a time learning colors. For the longest time we thought he was color blind. Then it was letters. He could remember the sound they made, but not their name. Every now and then the name of the letter will still escape him.
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Old 01-29-2012, 08:39 PM   #1699
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Just catching up with the chatter!! Hope Anakin has a better week !!!Judy and the kids all went to Erie Pa yesterday for Kyle's 10th Birthday at Splash Lagoon!! WEe had quite the panic before they left as Kyles doctor had given a script for the generic of his med and NO pharmacy had it Now imagine going on a trip with a severely ADHD/IED kid who has NO medicine Luckily the Pharmacy let us buy enough of the real med . to see her thru till Monday or Tuesday when she can let the doctor know what is going on!!I wish before Insurance companies said a generic had to be used they checked it was available
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Old 01-29-2012, 09:41 PM   #1700
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Catherine, that's cool that Grace is on a t-ball team. From what I understand, each child has a volunteer with them the whole time. They can either use a T or have someone pitch to them. The volunteer either runs with them, or if they are in a wheel chair, pushes them to base.

As for the memory, the neuro seems to think it has to do with where his lesion is located. He's has memory problems since he was 4. He had a heck of a time learning colors. For the longest time we thought he was color blind. Then it was letters. He could remember the sound they made, but not their name. Every now and then the name of the letter will still escape him.
That sounds a lot like the T-ball team Grace plays on. They have the option of being pitched to or using the T, too, and there are lots of volunteers to help. Sometimes it seems like there are more volunteers there than kids!

Grace had a hard time learning those things, too, but for her the original basis of those problems was her vision. Just before her 4th birthday we found out that she has very, very bad vision (basically legally blind without her glasses). That finally explained why she hadn't been able to learn her letters or numbers no matter what methods we tried. With the glasses it's a lot better, but when she's tired her vision gets worse and as her reading level increases, the print size in books decreases so we're only a couple years (if we're lucky) from her needing to do all her reading on the computer or something like a Kindle or IPAD. Hopefully the computer doesn't become a seizure trigger for her or I don't know what we'll do.

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Old 01-29-2012, 10:10 PM   #1701
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We found the Photopass person to do the balloons near the Mickey & Walt Statue at the hub...they turned out awesome...he even did the Tink picture with Ab!
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Old 01-30-2012, 08:32 AM   #1702
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Just catching up with the chatter!! Hope Anakin has a better week !!!Judy and the kids all went to Erie Pa yesterday for Kyle's 10th Birthday at Splash Lagoon!! WEe had quite the panic before they left as Kyles doctor had given a script for the generic of his med and NO pharmacy had it Now imagine going on a trip with a severely ADHD/IED kid who has NO medicine Luckily the Pharmacy let us buy enough of the real med . to see her thru till Monday or Tuesday when she can let the doctor know what is going on!!I wish before Insurance companies said a generic had to be used they checked it was available
Ah man! Sounds like a fun birthday! I'm glad you were able to get some brand name to hold you over. Be sure when you need refills you notify the pharmacist at least 7 days in advance so they can order it if it's something hard to get.

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That sounds a lot like the T-ball team Grace plays on. They have the option of being pitched to or using the T, too, and there are lots of volunteers to help. Sometimes it seems like there are more volunteers there than kids!

Grace had a hard time learning those things, too, but for her the original basis of those problems was her vision. Just before her 4th birthday we found out that she has very, very bad vision (basically legally blind without her glasses). That finally explained why she hadn't been able to learn her letters or numbers no matter what methods we tried. With the glasses it's a lot better, but when she's tired her vision gets worse and as her reading level increases, the print size in books decreases so we're only a couple years (if we're lucky) from her needing to do all her reading on the computer or something like a Kindle or IPAD. Hopefully the computer doesn't become a seizure trigger for her or I don't know what we'll do.

Catherine
You bring up a good point. Maybe Anakin should have an opthamologist visit? His 48 hour EEG ended up showing one seizure and it was in the occipital lobe. The lobe associated with vision.

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We found the Photopass person to do the balloons near the Mickey & Walt Statue at the hub...they turned out awesome...he even did the Tink picture with Ab!
I'm so glad you found that person!! I can't wait to see the pictures. I don't think we'll do a photopass pre-order again until Star Wars Weekends.
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Old 01-30-2012, 08:52 AM   #1703
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So sorry to hear Anakin had another seizure and a bad day. It breaks my heart, because after meeting you guys, I know what wonderful people you are and how amazing Anakin is. I just wish we could have spent more time together! Maybe when we come in November!

Here's hoping he starts feeling better.
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Old 01-30-2012, 03:21 PM   #1704
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You bring up a good point. Maybe Anakin should have an opthamologist visit? His 48 hour EEG ended up showing one seizure and it was in the occipital lobe. The lobe associated with vision.
It might not be a bad idea. We had absolutely no idea how bad Grace's vision was until after her first visit with an opthamologist. When we first started looking for answers, it was mentioned that we should get her vision checked sometime, but nobody (not her doctors, not her therapists, not a good friend who is an optician) thought that there was really anything wrong with her vision. Boy were we surprised! It has been suggested by a couple of her doctors that there may be a connection between her poor vision and her seizures, but no one has been able to tie them together and give us any answers on that.

The vision tests don't hurt. The only part of them that Grace absolutely hates is the eye drops. As soon as someone mentions giving her eye drops, she starts to panic and fight against them. Luckily not all of her vision appointments involve eye drops, but you may want to ask about eye drops when first making the appointment to see if they could do a preliminary test without them. Anikan may not have the problem with the eye drops that Grace does, I thought I'd warn you about her reaction anyway.

Catherine
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Old 01-30-2012, 07:07 PM   #1705
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So sorry to hear Anakin had another seizure and a bad day. It breaks my heart, because after meeting you guys, I know what wonderful people you are and how amazing Anakin is. I just wish we could have spent more time together! Maybe when we come in November!

Here's hoping he starts feeling better.
That would be fun to meet up in Nov! He is doing great today! We were finished with all his school work by noon.

We decided to go eat lunch at Disney. I was seeing where I could make an ADR, when I thought why not go to the Pepper Market for the lunch buffet?! We got there just in time before it closed. Had Vania again as our server. It was a wonderful and quick meal.

I was so happy to see churros this time!! So I had my favorite dessert! A scoop of icecream, churros, and honey drizzled on top...YUM!!

We headed over to the Animal Kingdom after lunch. Anakin sat in the medical stroller almost the whole time, but he was so excited to get out of the house! We rode Kilamanjaro Safari and Triceratop Spin. The rest of the time we listened to CM tell us about the animals. You can really learn alot if you take the time to stop and listen.

We learned that the monkeys near Everest are actually apes because they don't have a tail. Each family of that type of "monkey" has their own specific call. We can help save them by drinking coffee that is grown in the shade of the rainforest trees, available at Target and Walmart.

We also learned that the antlers of the Elk Deer are shed once a year. And that the bats that were in the building are not nocturnal and don't use echolocation. They are daytime bats and have incredible eye sight instead.

We also got to watch a bird making his nest inside the bird area.

So even though Anakin finished his entire year of Science already, he was able to have a science lesson today at AK!

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It might not be a bad idea. We had absolutely no idea how bad Grace's vision was until after her first visit with an opthamologist. When we first started looking for answers, it was mentioned that we should get her vision checked sometime, but nobody (not her doctors, not her therapists, not a good friend who is an optician) thought that there was really anything wrong with her vision. Boy were we surprised! It has been suggested by a couple of her doctors that there may be a connection between her poor vision and her seizures, but no one has been able to tie them together and give us any answers on that.

The vision tests don't hurt. The only part of them that Grace absolutely hates is the eye drops. As soon as someone mentions giving her eye drops, she starts to panic and fight against them. Luckily not all of her vision appointments involve eye drops, but you may want to ask about eye drops when first making the appointment to see if they could do a preliminary test without them. Anikan may not have the problem with the eye drops that Grace does, I thought I'd warn you about her reaction anyway.

Catherine
He is the same with eye drops. It would not be pretty.
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Old 01-30-2012, 07:40 PM   #1706
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Hey girl!!! Long time no hear!! sorry Anakin had another seizure. Poor guy, at least his schooling is going good!! We're doing good, went and saw MaryAz and Katmark this weekend!! We had a blast!! My used powerchair, the left motor died, so I found another one, and my old guy is gonna try to fix the first one. the new one is cool, and Chris painted it for me!!
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Old 02-01-2012, 01:42 PM   #1707
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Hey girl!!! Long time no hear!! sorry Anakin had another seizure. Poor guy, at least his schooling is going good!! We're doing good, went and saw MaryAz and Katmark this weekend!! We had a blast!! My used powerchair, the left motor died, so I found another one, and my old guy is gonna try to fix the first one. the new one is cool, and Chris painted it for me!!
I could have sworn I commented on your post? Guess it must have been on your thread. Glad you had a great time! Bummer about the wheels, but so glad you found another one. Did he paint it Tigger style?
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Old 02-01-2012, 01:50 PM   #1708
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Next trip is coming up soon. I am the queen of overpacking.I thought bundle packing was the greatest thing to discover, but the only thing that did was afford me more room in the suitcase to pack MORE, rofl!! I could sure use some pointers on packing on the essentials. Who's good with making a packing list?

This is just a 2 nighter, so I don't need to pack for a week!!
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Old 02-01-2012, 03:19 PM   #1709
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I am awful with over packing. I was looking at the list I made the other day and I was thinking what a good thing it is that we don't fly. We couldn't afford it with luggage costs.
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