Nathan's Wish Trip Aug. 2008

[sherreis]

Nathan has been receiving speech therapy since he left the rehab hospital. He has seen the same person since November. She is wonderful by the way. He sees her 2-3 times a week. She works alot on language based issues and memory. I told her about the dr in Boston and she did not agree. She said that he definitely has improved in his memory, it is slow and takes a lot of repetition, but he has improved. She did this memory test on him. She had him memorize 10 diffferent numbers that were arranged in a certain way on a piece of paper. Take it away, distract him with another activity and a few minutes later, see if he could recall the numbers and where they were placed on the paper. It took a while but he did it He got them all right. She told me to take that paper to the doctor, show him and tell him to blow his nose with it . It makes me feel better . For now we will concentrate on packing This is how all my kids feel

Robin - that's great. And, as a nurse, you know that doctors are often wrong. Have fun over the next few days getting into Disney mode.

 

[mytwotinks]

Nathan has been receiving speech therapy since he left the rehab hospital. He has seen the same person since November. She is wonderful by the way. He sees her 2-3 times a week. She works alot on language based issues and memory. I told her about the dr in Boston and she did not agree. She said that he definitely has improved in his memory, it is slow and takes a lot of repetition, but he has improved. She did this memory test on him. She had him memorize 10 diffferent numbers that were arranged in a certain way on a piece of paper. Take it away, distract him with another activity and a few minutes later, see if he could recall the numbers and where they were placed on the paper. It took a while but he did it He got them all right. She told me to take that paper to the doctor, show him and tell him to blow his nose with it . It makes me feel better . For now we will concentrate on packing This is how all my kids feel

If you are noticing his memory improving, it probably is. You are the one who lives with him. Testing isn't 100% accurate because there are so many factors (stress, fatigue, hunger, boredom) that can effect the results. I hope you can go on your trip knowing that you (and your speech therapist) are right. Seriously, I have never had any illness that has effected my brain and I know that I couldn't pass that number test.

I see a lot of doctors with my 10 year old and get told a lot of stuff that isn't right. I used to take what they said as gospel, and then I realized that I had to factor in that they don't even know my child, so they don't know everything about her.

Have fun on your trip! I can't wait to see all of your pictures!!!!

 

[special-angel]

robin- I would take what the doctors say with a grain of salt .They see our kids 1-2xs per year for what 30 mins at the most & expect our kids to perform.You & Nathan's speach therapist knows what he is truly capable of ! My daughter plays shy ,no she completly ignores her neuroligist ! Then I have to laugh when I get the report & it states she doesn't follow commands,doesnt follow objects ,yada yada yada .We should video our kids in the comfort of their home & take that to the docs !

Have a GREAT time in Disney !!!!!!!!!

 

[oklamomof4boys]

Your speech therapist definitely knows more about his memory than the doctor-she has seen him 2-3x a week for a year! Of course, I am a speech therapist, so I am a bit biased about our expertise-lol! My Nathan has some memory problems-probably caused by a 7-72 hour seizure he had as a newborn ( after 7 hours, they paralyzed him so he wouldn't jerk out his vent, so we don't know when the seizure stopped). His MRI is normal and they aren't even sure if maybe some of his heart meds are making the problem worse ( some of them cause confusion in adults, but they are keeping him alive so taking him off them isn't really an option). His memory is very strange and he covers very well. But like if we drop off Tucker at baseball and drive home ( less than a minute later) Nathan will walk in the house and ask where Tucker is. Even after I remind him, he will ask again several times. Our neuropsychologist told us that Nathan has many years before we know how much we can his brain will rehab and then he will learn to compensate. The brain is an amazing thing-especially in children. I know it is very frustrating. We are lucky in that we have never known Nathan any other way. You have with your Nathan and I'm sure that is difficult for all of you. One time at a baseball tournament, Nathan was particularly confused ( being off his schedule is hard on him)- he couldn't remember what town we were in, if we had eaten, etc. I had a "friend" ( I use the term very loosely) say, " How is he ever going to function as an adult with a memory like that?" You can imagine that really upset me. I told the doctor about it and he said, " You will be amazed at how he learns to compensate!"

ON a lighter note, I can't believe your trip is nearly here! How very exciting!

Carol

 

[SallyfromDE]

My Dad had to have brain surgery for a tumor. It was on his short term memory. He could tell you anything that happened years ago, but would forget what happened an hour ago. Anyway, his surgeon told him in the beginning, to use or lose it. He felt so sorry for himself, and just wouldn't do anything to try and work his brain, other then sit in front of the television. (which was strange, becuase growing up, we weren't allowed to havethe tv on when he was home, he thought it was stupid). I think it's wonderful that Nathan is improving, and I don't doubt his therapist.

Nathan has been receiving speech therapy since he left the rehab hospital. He has seen the same person since November. She is wonderful by the way. He sees her 2-3 times a week. She works alot on language based issues and memory. I told her about the dr in Boston and she did not agree. She said that he definitely has improved in his memory, it is slow and takes a lot of repetition, but he has improved. She did this memory test on him. She had him memorize 10 diffferent numbers that were arranged in a certain way on a piece of paper. Take it away, distract him with another activity and a few minutes later, see if he could recall the numbers and where they were placed on the paper. It took a while but he did it He got them all right. She told me to take that paper to the doctor, show him and tell him to blow his nose with it . It makes me feel better . For now we will concentrate on packing This is how all my kids feel

 

[GoofyDoo]

If you are noticing his memory improving, it probably is. You are the one who lives with him. Testing isn't 100% accurate because there are so many factors (stress, fatigue, hunger, boredom) that can effect the results. I hope you can go on your trip knowing that you (and your speech therapist) are right. Seriously, I have never had any illness that has effected my brain and I know that I couldn't pass that number test.

I was thinking the exact same thing! I don't think I could pass that test, either. It sounds like Nathan is thriving to me.

Robin, I'm just stopping by to make sure to wish you and your family a WONDERFUL trip!! I cannot wait to hear all about it!!! You'll all be in my prayers.

 

[bigdisgrandma]

Robin and family--
Have a marvelous time. I know you will all love it, of course you know that too! I will say a little prayer for your family on Sunday in remembrance of the Grandfather I know you lost last year. He will be watching you and smiling at the fun things you do I am sure.

Oh and Happy Birthday to the girls! Don't forget to pick up your birthday buttons!

Travel safely, enjoy the trip and think of me when you are riding Splash Mountain!

Denise

 

[bex271]

I hope that y'all have a save trip and enjoy all the magic is coming your way.

becca

 

[Robin+5]

I can't believe that it is almost here . We are just about all packed. My youngest, Katelyn keeps telling me "Mom, I just can't wait anymore". Everyone is getting sooo excited. It will be hard for everyone to sleep tonight.
Thank you everyone for confirming that a mother (and speech therapist) knows her child best and the doctors word is not always gosple. My husband sees that glass as half empty. He is worried about Nathan's future, college?, getting married & having a family? and providing for that family? I keep trying to tell him that he has a lot of growing left to do.
We received yet another package yesterday. Thank you diswife3tea. Nathan, Morgan and Katelyn got these awesome autograph books.

They are already in the suitcase all set to go

Denise, I will be praying for you on Sunday as well. When we are on Splash Mountain my thoughts will be of you and hanging on

Amy, I just love your TR. I have learned a lot that we will take with us on our trip. We had no idea about Kidcot in Epcot. My kids will love doing that. We are spending the whole day at Epcot on Thursday (Kim's birthday wish)We might try to spend an afternoom at US We will see.

Heather, Love that Hannah and Logan. I keep checking you tread for updates. Great TR

THANK YOU Disboutiquers All of your gifts are just beautiful. We are so blessed to be part of the "Big Give". I tell some of my friends about what you have done for us and they are truly amazed. They can't believe that people would just send us such beautiful handmade clothes and gifts. My kids will be gorgeous and handsome strutting their new customs
and to all of you

 

[akhenaten]

have a great time!

and as the mom to another 14 year old Nathan...I can confirm that they have A LOT of growing up to do still!!

Keep the faith!!!

happy dance for you...

Carol in NJ

 

[GoofyDoo]

Robin, I wish you the best time ever!!! I cannot tell you how excited I am for you!!!!

 

[mistymouse5001]

 

[angiedora]

Robin,
I just found this thread yesterday and wanted to let yo uknow that you and your family have been on my heart. I will continue to prqay for your Nathan. Please keep us updated on his progress. Have a great time at WDW!

 

[Tnkrbelle565]

Have a wonderful trip...can't wait to hear all about it

 

[t-beri]

Have fun, be safe and take LOTS of pictures. We will be anxiously waiting for your TR!!!

...t.

 

[luvinyou]

I meant to say this a while ago, but totally forgot! Katelyn, thank you so much for the letter! I loved it

Have fun on your vacation, i can't wait to see your puictures and read your trip report!

 

[mom2lilnick]

I just joined and found your pretrip report. I hope you had an awesome time and hope I can find the post trip report.. these boards are huge!

 

[Robin+5]

Well we are home and exhausted. We had company while we were down there...Tropical Storm Fay. It rained for 4 days, we put on the rain ponchos and did what we could. We really had to play with the schedule. We didn't plan on going to US/IOA but we did that, we did not buy an extra day at WDW and we didn't get to do a water park. We are all going to bed (Ah, our own beds) I will start a trip report tomorrow.
Nite to all
Robin

 

[Tnkrbelle565]

Welcome home!!! Sorry about the TS. I'm sure that you made your own fun with your ponchos on!

 

[jessica52877]

Welcome home! I hope you still had fun. I know rain, especially like this, can sure put a damper on a vacation.