Update on Dell-He’s doing great
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July 23, 2007 at 8:57 pm
I don’t want to jinx Dell but I wanted to write to you.
Hello to all my friends.
Wanted to update ya’ll on the progress of Dell. He’s doing very well.
For those who don’t know Dell, he’s 3, walks with the aid of a walker and contracted CIDP at 5-8 months of age.
We started home health about 5 weeks ago and I love it. It is so much nicer than driving 1 hour and staying the night in the hospital. We love our solumedrol nurse and ivig nurse.
Dell is still doing 160 mg solumedrol each week (total of 4 doses). He’s also on Copaxon which is a MS drug. He gets 10 mg every other night. He’s doing ivig, 10 grams, about every 4 weeks.
Before we noticed his improvement, if you squeezed his arm, it would be like jello. Now, there is tone. I’m not interested in running out and getting an EMG. I know he’s improving and don’t want to put him through it.
When we went for a checkup with the neuro., his student dr. said Dell has a little reflex in his knee. I asked him about it, saying that he’s never had reflexes since he acquired his disease at 5-8 months of age. He showed me the relex again and sure enough, if he was doing it right, there is a little reflex.
Hope this post finds ya’ll feeling better too.
Love, Lori and Dell
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July 23, 2007 at 9:06 pm
That is SO GREAT Lori! Thanks for sharing your good news!!!
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July 23, 2007 at 9:19 pm
Great news Lori
Sue
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July 23, 2007 at 10:09 pm
Lori, That is Wonderful News!!!! Way to Go Dell!!! Big Hugs!!!!:)
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July 23, 2007 at 10:20 pm
Lori,
I am so happy for Dell and your family! I totally understand about not “jinxing anything”, I feel the same way. Keep us posted with the great news! Miracles DO happen!Love,
Dawn 😮 -
July 23, 2007 at 11:41 pm
[B]YAAAAAAAAAAAAYYY[/B]!!!! My stomach just did a little dance too 😉
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July 24, 2007 at 2:23 am
REFLEXES!?!?!?!
(Ok, I’m crying over reflexes!)
That is FANTASTIC! I was thinking about you all this morning & was wondering how Dell was doing. I am SO, SO, SO happy to hear that he is improving. I’m keeping my fingers & toes crossed that it continues.
Does the dr think it’s 1 drug that is helping him improve or the combo? Because whatever you are doing – you need to keep it up! I don’t blame you on not getting an EMG. I think with kids the best way to determine that is by just watching them & challenging them to see what they can do.
My best friend told me anytime I say how well Emily is doing that I have to say “Kinahera, Kinahera, Kinahera” before & after it. Apparently it’s something that her grandmother used to do. So that’s what I’ve been doing when I tell people about Emily, yes…they think I’m crazy, so I don’t jinx it.
I remember when Emi got her reflexes back. It is the BEGINNING of good things to come! I promise! That’s where it starts – REFLEXES!
I wish I could give you a big ol’ hug in person.
Keeping everything crossed for Dell,
Kelly -
July 24, 2007 at 1:16 pm
Keynahore is a Yiddish word indicating praise and said to ward off the evil eye. You can also “spit” on the evil eye to protect loved ones — my mom always said “keynahore poo poo poo” 😀
So I agree, a keynahore for Dell, Kevie, Emily and all the kids who are making progress against this disease!
BTW, I was amazed and delighed when my reflexes returned — a definite sign of improvement!
Stay well all,
Caryn
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July 24, 2007 at 3:52 pm
In the south, we knock on wood. If there is no wood around, we knock on our head. I don’t know if this is from the south but I’ve seen this my whole life.
I love the spit thing. I’m sure ppl. would love to see that, me spitting into the air.
Love, Lori
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July 24, 2007 at 3:52 pm
In the south, we knock on wood. If there is no wood around, we knock on our head. I don’t know if this is from the south but I’ve seen this my whole life.
I love the spit thing. I’m sure ppl. would love to see that, me spitting into the air.
Love, Lori
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July 24, 2007 at 4:49 pm
Defininitely not a Southern thing … I do it all the time. In this age of synthetic materials, however, it’s a risk factor for frequent headaches 😉 .
All these traditions go way back and are designed to basically do the same thing: not tempt fate.
CT
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July 25, 2007 at 1:51 am
Lori, you know that makes my day. Give Dell a hug for me, talk to you soon.
Jerimy
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