Welcome Home!

[~Pansy~]

Welcome Home Everyone!

Thank you, JL, for all you've done and continue to do for us!

Updates, please!

I'll start....

Only 2 kids living at home now. Aaron is growing up so fast! He is taking Driver's Ed in school and passed the classroom portion with an A+ Now for the Behind-the-wheel portion :eek:

Brandon is coming home for a visit later this month and bringing his "friend" of 2 & 1/2 years. Must be serious as this is the first time he's brought home a girl for us to meet (he's a private kind of guy... and he's going to be 26 in a couple of weeks!)

All the other kids are doing fine as are our grandbabies.

Dh is doing great. He has surprised the doctors with his recovery.

With the nest being so small, I've gone back to school. Actually, I started college for the first time! I was really very nervous about it but am doing great and so am getting excited about it all. This month marks the 18th month since I was told my breast cancer metastaticized to my spine and I was given 6 - 18 months to live. I call it a death sentence. But here I am, doing well and going to school :D yay! It's the flaxseed oil, girlies, I swear! I've also added xango to the mix.

Okay, your turn! Let's hear how everyone is doing!

Hugs,

~Pansy~

[cal]

hi pansy (((((((hugs)))))))

well anthonys is now 11 years old we have moved house, which is so much better for anthony, his sz are pretty good at the moment ;) i have missed being here so glad we are back up and running

carol

[sunandmoon]

Hi everyone!

A short update, Number 1 son is a senior in HS.; Number 2 son, is just starting high school and number 3 is in 8th grade. They are all doing just what they are supposed to be doing, so I guess that's progress. More later...

Michelle

Pansy,
You really need to promote your FLAX Seed treatment more. I'd like to know more about it...

[myson-andrew]

Just saying hello before we head off to school. Long time, no see!!!

Alison and Andrew

[PaulaScott]

We're back, we're back! Woohoo and thank you, Mr. John Lester!

Good to see every one again! Brief update: Em is doing well, she's grown bunches over the summer (and outgrown her KidKart -- getting a new Zippie T/S hopefully soon!), opthamologist says her CVI has improved greatly since he last saw her three years ago, now tracks from both eyes consistently! We will also be doing Botox and new AFOs in the next month or so.

The other two are growing like flowers. Mary is talking up a storm and loves to sing. Dale is taking piano lessons (tickles Em no end) and had his first recital last night.

[Tracy Sheppard]

Don't have time to update right now. Glad everything is back up and running.
Glad to see you all and know everyone will be coming back here soon.
Tracy

[Naomi]

Hi everyone! I'm so glad to see the original BT back up and running. Thank you John!

Eli is doing fairly well, still has occaisional mystery stomach pain, but we can't really find an answer. They *almost* put him on Reglan but I couldn't do it and I'm glad we didn't. The pain isn't as frequent or bad as it was, so I'm glad we waited. Eli is 9 NOW!!!. Unbelievable. In August he started 4th grade!!!!!!!!! What is this world comign to????

Hannah is 5 and is excelling in her violin playing. She sometimes shocks me with how beautiful she is and how she is growing up to be so mature already. She is in Kindergarten and is reading well. Her drawing and painting are also miles beyond her age and it is so exciting!!

The biggest news around here is that Eli is on a Special Olympics Bowling league this year! We found out about it the week before the season started and he is so jazzed. We have had to deal with a wicked spin he has - he would set the ball right down the middle and right before it reached the pins, whoop, it would veer right. So frustrating when those around him are bowling in the 20's and up and he is getting 4 for a game. But finally last week, the coach and I figured out exactly what he needed to do and he is really getting it. On Sat we went as a family and he bowled a 22! His all time record!

I had been praying for a sport he could do and enjoy and it looks like this will be one he can really improve at. Oh, and if you live in the East Valley in Phoenix, support Kyrene Lanes because they have never charged the SO league a penny. Cool, huh?

On the 21st he is in a unified bowling tournament where they pair a SO athlete with a typical athlete. He and his cousing Robbie who recently moved here will be teamed up and we're so excited.

Oh, man, I wrote a book! I'm sorry. I'm just so glad to be back at BT!!!!

{{HUGS}}}

N

[Earth Mother 2 Angels]

Hi & {{{HUGS}}} To Everyone~

It's great to be back! :)

All is well with our little family. Jon is healthier than he has been in a long time...I discovered that soy was contraindicated for his hypothyroid, so now he eats Quorn (meat alternative), and his hypothyroid symptoms have basically disappeared. Our major concern for Jon is his dire dental situation. My dentist was going to consult on Jon's needs during the summer, but she dropped the ball. Now we have to wait until next year, as cold/virus/flu season is approaching.

The older I get, the faster time flies! ;)

Thanks, JL, for bringing Braintalk back! Fingers crossed that all of our former messages (and wealth of information) will reappear here as well! :)

Love & Light,
Rose

[mama z]

Hi, good to be back. Also checking to see if I can post. :)

Andrew is doing better now than this past summer. We're still dealing with seizures but have seen him almost completely regroup after stopping the Clonazapam. So he's picked some in the areas where he has regressed and is still having 10-15+ seizures per day. The longest being about 3 minutes, and those have only been a couple of times. Most are about 5-20 seconds. We'll start Depakote in about a week. Wanted to see what he'll do without meds.

He got his new Zippie wheelchair last week and is going for a swallow study Weds am.

Aaron is doing awesome. Continues to amaze me in school, especially spelling and math. He still loves Scooby and while rehearsing for the Christmas Musical last Weds :rolleyes: he informed me he wants to play the piano. :cool:

Have a great day,
Laura

[Denae]

OHH I finally can post here again!!!!

Changed my name though :)

[lkelley]

omg!!! im just so excited to see that brain talk is back online!!!
we are doing so so lol
first of all i am pregnant 16 weeks! not exactly thrilled yet but it is starting to grow on me (hehehehe).
my boys are now 10 and 9 and rotten.>>> typical boys!!!
chelsea on the other hand returned to school only 2 weeks ago and on her second day of school fractured her tib fib, and now has a leg cast that goes all the way up to her lil bum.
other than that it has been very lonely for me i have missed this place so badly, i dont think i realized how close i had gotten to alot of you and how much i relied on your input!
anyway~~~ welcome back everyone!!!
thanks so much john lester for bringing this place back up and alive again
leah

[swiftuk]

I've had a change of user name as the verification email didn't get through to my original email address, but I'm still me.

Swift

[Nathan&GilliansMommy]

Oh-it's so good to be back among friends old and new! I have changed my UserName since I had to re-register. Didn't want to leave Gillian out!
Just a little update on Nathan. Nathan got the VNS implanted at the end of July since some of his seizure meds really zonk him out (Klonopin and Depakote).
Nathan has done really well since being in the hospital. Before going in, he did not respond to his favorite words/songs (he had stopped doing this after his hospitalization in April) or wouldn't smile. Our bugger is back and full of smiles and even some giggles. We are even seeing some new movements we have not seen. My husband tells him to "Shake Daddy's hand" and he lifts his hand up and opens his fingers. This is REALLY big as Nathan has never demonstrated anything like this before! I do not know what to attribute it to (it wasn't the VNS as it wasn't turned on for two weeks). Maybe that pure oxygen he breathed while intubated?
Nathan also got his first wheelchair. It is a new chair called a Chunc (www.chunc.com). I think we are going to like it as it is really designed for the caregiver in mind.
Gillian turned one and is as crazy as ever (she's a redhead!) She has started hugging Nathan too.
Looking forward to hearing from everyone again and Thank You John for all of your time and effort at bringing BrainTalk back up!

[LeighB]

My little guy is a junior this year. His atypical absence seizures are controlled by depakote and lamictal. He's 5'9" now at 107 pounds. The growth spirt has left him pretty tight. Saw Dr. Brunstrom last week for his CP. Had another x-ray for scoliosis. Haven't heard if it's worse or not. School is good. He's taking piano- one handed but he's having fun! Physics and American government are not so fun. Glad this site is back. I sure missed it while it was down.

LeighB:)

[RathyKay]

Hmmm... well it wouldn't let me "reply to a thread," but it would let me start a new thread (I didn't go through with the new thread). And now I can "reply." Tune in tonight for the next can of worms.:p

I'll post later, when I have more time.

[langansmom]

I wasn't able to post earlier but now it let me in. I am soooo glad to be "home". I've missed you guys tons!

And now for an update: Langan is doing well. She is loving school and is WALKING like a champ. I posted a video of her walking on the temp Child Neuro site. If any of you didn't go there and want to see, just let me know. You know I love to show off my girl's new trick!!

Langan's vision also continues to improve. Her vision teacher said today that she has shown more improvement in the first 6 weeks of school than she showed all of last year. Don't know if the vision is causing her gross motor to improve or vice-versa- chicken or the egg- but we'll take it.

She is also making a sound that we think is for "eat". Go figure that would be her first word. We can get her to do it consistently when she wants something to eat. She tries her sign for "more" and "eat" and we say "use your words" and she'll go "eeeeeee". I was skeptical at first but it is so consistent that I am starting to think it is intentional. Teachers and therapists all think it is. So that's exciting!

Seizures are still too frequent and we have no pattern. She'll go almost a week without one and then have one two nights in a row. Ugh. I hate seizures.

In the last few weeks, Langan has been plagued with a UTI and an ear infection. So she's back in the bed with me but I am hoping to get her into her room again soon. If she has another ear infection in the next 3 months, we'll have tubes placed again. She had no infections for the year she had tubes and now 2 in the 5 weeks since they came out. Hmmm. Not a good sign there.

That's news here. Sorry to ramble. Can't wait to catch up with everyone!!

(((hugs)))

[CoolAngel28]

Here I am...Same person,different username..Kristin

[mumtosarahlou]

Sarah is doing well inspite of early puberty. Acne, bras and periods...what fun. Oh, but she got contacts so no hiding behind those thick glasses anymore-yea! She's a little thin so the doc wants me to beef up the calories. She is still riding the horses and loves it. I am waiting on further RETT testing-due back in a month.
I look forward to hearing how everyone's summer went.

[Nick,Brian,andJon'sMom]

It is great to see everyone. You never know how much you miss something until it is gone.

My crew is doing well. Jonathan has been doing well health wise. Just an occasional seizure but other that is he great.

Marcie

[wheeliebird]

WOW Pansy, Have we been gone from here for months or years, Aaron taking drivers Ed, FANTASTIC, I'm thrilled for him!!! :D What an accomplishment!!!

[Bec]

Hello all! What a long summer without you!

We are working with Spencer's Life Care Planners on his award from the lawsuit.

We had a pretty traumatic meeting end of August and I really missed your support for that. I had 20+ people in my house throughout the day; including the Governments Lawyer. THAT was the worst part of anticipating the day. Went better than expected.

Spencer is doing GREAT in Kindergarten. Would you believe he is learning to READ!

"cat, car, dog, horse, in, a, see, box, airplane", are among just a few.

Spencer can count to 30. They are teaching him to tell time. He can "read" the alphabet when I sign to him. He can't remember all the letters but when I sign them, he can do it.

Spencer is going to be a Thomas Engineer for Halloween. Kevin painted a giant Thomas on Cardboard that we attached to the walker.

And, I bought a bicycle and trailer this summer. I use the rig to run close errands (and some not so close).

Glad to see you all again.

[myson-andrew]

Bec, I can't believe Spencer is in Kindergarten and reading!!!! Where does time go?????

Alison
www.caringbridge.com/canada/andrewsjourney

[chloaver]

Good I can reply now! We're doing good here and about a week and a half away from moving from my hometown to my dh's hometown(only 20min. away so its not like it's a different state or anything, although try telling that to my parents and MIL, :rolleyes: ). Anyway, we are packed up and pretty much ready to go. I'm excited about getting Chloe to the United Cerebral Palsy school and having more room in our new house for all of our stuff! :) Chloe's complex partials are currently non-existent on her current med dose(Topomax, Phenobarb)and myoclonics have been pretty good this summer and fall and although I have a feeling once she starts school and the new schedule will throw her out of whack but hopefully she'll adjust. SHe still has good days and bad with them but more good than bad and not a med increase since May so that's good to me. SHe also got a new wheelchair that we love although it is soooo heavy and hard to get up into my van. It's a Spree XT. I think we'll be looking for ramps soon.

Averi is 2 1/2 now and is your typical 2yr old but so cute and sweet. She has alot of my quirks that even I've noticed and it's kind of scary to see a literal mini-me. :rolleyes: She's doing good though and a little cutie.

Once we get moved and settled, I think we are going to start trying for baby #3. I really want Averi to have that "typical" sibling relationship along with her special relationship with Chloe. I've always wanted lots of kids(my dh says only 3 though)so I feel like it is a pretty good plan. We have the bigger house and Averi is older and more independent and Chloe is doing well so I think a third baby will fit right in at this time. :)

That's about it. Glad to see we're back!!

[laurensmom]

Glad to see old friends.....thanks so much JL, for once again bringing us back together!!!

Hugs,

Debi

[Kara's Mama]

YAY!!!! It is finally back!!!!! This is Kara Beths Mommy under a new name. Kara is doing pretty well now but we had a few small setbacks in the last few months. But, I won't get into that yet. I am just SO excited it is back up and running!
Rachel & Kara

[lilac7700]

Glad to "see" everyone back over here!! Paige is 19 momths adn since summer is comando crawling really well. She still has a hard time lifting her head. But I did catch her kneeling in her crib, holding the rail lookin over. Hopefully she's close to pulling up!!! Little bugger! Still no solid words, but babbling has started! My oldest is a smart 4th grader, but her mouth has been getting her grounded quite a bit lately!:rolleyes: And my 3 year old is keepiing me busier than ever!!!!
We are selling our house, just cant decide where were moving. A little backwords, I know. I want to move back to MI where our family lives, I need my family. My husband wants to stay here in GA. He is inbetween jobs, so it couldnt be better timing in my eyes. Now if I could only convince him.....

[RathyKay]

Since I didn't post an update yesterday... Tom is doing well. We had our DAN! appointment, which I wrote about in a long-winded separate post. His vision seems to be better and his gross motor skills are increasing. He's climbing the ladders on the school jungle gym (yay!) and not falling too often. (He's got those weak hands and we're trying to build up strength.) He's been jumping off the playground (probably a foot drop) and not falling over. After years of watching him jump up and down in the same spot without really getting his toes off the ground, it's amazing to see him jumping forward and down a distance.

Tom's reading is improving. I convinced Samantha to make an educational game for him as part of earning her Girl Scout badge and Tom LOVES it. We already have an Alphabet Lotto game (pick the letter and place it on your card if you have it). Samantha made a Sight Word Lotto game with.... uh... sight words (the, had, they, up, down, because, you, your, have, etc.)

I signed the paperwork to start Tom's triennial review. It's due in late November. I have that mixed excitement, feeling of dread about the whole thing. Seeing all of his improvement, and wondering how far behind he really is.

[momtoeva]

It's so great to be back! Eva is doing great. She is in preschool and really loves it. She is starting to cruise and I think she may have actually said "mama" the other day (she is nonverbal). She loves hippotherapy and can hold herself up on the horse now when it used to take two people! She is definitely spitting up less and smiling more so I think her reflux is improving.

Isabel started kindergarten and loves it and Sammy started cruising today which is bittersweet for me because it won't be long until she can do things that Eva can't.

And the big news - Eva's going to be a big sister again! I'm due 3/20.

It's so great to be back! I've really missed everybody!

[~Pansy~]

It is so good to hear how you are all doing and how your babies are doing!

I know I didn't post often the past couple of years, but I enjoyed reading about the babies and their accomplishments.

It is good to be home :D

[Brandon's Mom]

{{{{Pansy}}}} It's absolutely great to hear that you and your wonderful family are doing so well.

I hope Aaron does well with the driving, Brittany tried when she turned 16 but wasn't comfortable enough with driving to get her license before her temp expired. She talks about trying again (she'll be 19 this month) but she has a very hard time processing all the input from inside the car and outside the car and maintaining her concentration. I wish her high school had driver's ed for free, like we did back in the day, with simulators and lessons in compact cars in the parking lot.

[VirginiaNC]

HI, I never posted much ...but always read your messages. I didn't know how much I needed to just know there were other people like me out there...until the board went down. My only son James will be turning 8 next Friday. We're having a Three Little Pigs party, his favorite story. I made some houses out of cardboard for the kids to sit in and bust open when the wolf appears and James is very excited about it. He wants me to tape them playing out the little pig story so he can watch it!
James has had a calm, healthy summer. We're working on getting a new powerchair. We wanted the Permobile with the standing feature, but our insurance company turned it down....so now we're getting the Permobile and a separate Grand Stand. I couldn't believe they would pay for a stander separate, but not with the chair....stupid! Maybe by the time he's ready for his next chair, insurance will have changed their policies. Do any of you have any experience with Permobil....I've heard their repairs can take a long time?
Hello to everyone, I missed hearing from you all.
Virginia

[jen]

Welcome Back everone, I am so happy this is back up and running - thanks John.
Sure did miss everyone
jen, aka - jen, sebastians mom

[Heather]

Thank You John for getting the forums back up and running. I can't imagine how difficult that must have been!
Hello everyone. Hope evryone comes back.
Aidan turned 3 and we are still finishing the endless remodel, but it's getting close. We are seriously trying to get back in the house by next month. The wheechair ramp was finally covered by the state and that helped.
Aidan has not had another generalized TC, so I'm a little more relaxed, but I still sleep next to him. We are getting another overnight VEEG next month.
Ariana is back in 4 afternoons of preschool a week, but I'm still working on getting Aidan back into a playgroup that fits our schedule. We finally began some therapies at Shriners recently and they are willing to work at getting a power chair for him, one way or another.
Heather

[mama sue]

Not too much on my end.....I miss everyone and am glad to catch up :)

[JackHenry&Emma]

Hi everyone,

I don't much anymore since Henry is doing great but I don't check in on everyone from time to time. I am so glad we are back online.

Henry is doing well. He started a 5 morning a week preschool this year. We actually put in a class where he is the youngest. Last year he was the king of the classroom and got a bit too big for his britches. I think it will really challenge him. He has some difficult seperating from me but I think it has more to do with his little sister than anything else.

Emma turned one a couple weeks ago. I did my best to create a Korean Tol. She is doing well but has had some feeding issues. She stop eating purees in late May. So she and I go to feeding therapy twice a week. He feeding issues are completely different than Henry's. There doesn't appear to be any physical reason. Most likely it is a repsonse to all the changes she had in caregivers in her life. She was home with bm for a couple days, then went to an orphanage, then to 2 different foster families and finally to us - all in 5 months. She is doing much better. She just started putting food in her mouth. However, she is in love with her bottle and won't think of drinking from a sippy. She has been such a blessing to our family.

My oldest, Jack, started attending public school. He is having some difficulties. He is extemely bright and easy could skip a grade or two. However, I want him wiht kids his own age. He is a naive little man. He emotionally is not ready for second or third grade. I did get him into the gifted program which is supposed to start today. I praying that will help. He is bored out of his mind. In the first 5 weeks of school he ate his whole 48 crayon box of crayons. He has done better since I figured out what was going on. Unfortunately, his teacher is not the best. She is nice but is easily overwhelmed. She has 2 asberger's children in the class and spends most of her time attempting to manage them.

I am a sahm now. Money is tight but I love it. Please pray that Emma's feeding will improve. Her therapy is costing us at least $100/week. I do have a name change. I couldn't remember my old name but it was something to do with Jack and Henry. I thought I should include Emma.

Take care,

Julie

[holly0817]

I only posted infrequently, but I lurked here daily, so I am grateful JL worked so hard to restore this community. Great job! This is such a wonderful support group.

Anna is doing so well it's a bit unnerving! She hasn't had a TC seizure in more than 7 months and she's been off of AEDs nearly that whole time. We saw some absence seizures this summer and are keeping an eye on those. Risperdal seems to be her magic med stabilizing her mood and behavior... that and structure, structure, and more structure. Having a better understanding of her issues (the PDD and mood stuff) has helped us help her manage her world.

She started in Life Skills for kindergarten and is really blossoming. She is still not interacting with her peers and needs an adult with her almost all the time, but she is becoming more articulate and expressive. The anxiety and aggression are within manageable cycles. Best of all, she is occasionally sleeping through the night in her own bed all by herself. Wow... this is really big.

We are enjoying her progress, but still cringe every time the phone rings. Anticipating the next big seizure is still present... we're working on relaxing.

[Kate]

Hi everyone,

Wow hasn't it been a long time! Thanks to John for getting the boards up and running again, I can't begin to imagine what a job that must have been.

We managed to get across to the States in the summer for the first Dravet syndrome conference in St Paul, Minnesota. It was great to meet so many families with Dravet kids (Dravet syndrome is rare, like 1: 40,000) and to meet Dr Dravet herself. We had a lovely time staying with a US family, although had to make an unscheduled stop to the ER one day with a status sz. I never realised it was so hot in the Midwest and there is so much water, both triggers for Laura and other Dravet kids. We also managed a trip to ER in Cyprus over the summer and I wished I knew some Greek for that trip. Anyway things have thankfully settling down now we're back in cool England.

Looking forward to catching up on everyone's news.

Kate (in the UK),
mum to Laura age nearly 7 w/Dravet syndrome (SMEI), severe delays, non verbal but very vocal and full of mischief. VNS Feb 2006.

[mama sue]

just wanted to keep thread going.....

[Charliesmum]

Just chipping in to say Hi and glad the forum is back.
Same name.. I think!!
Charlie is growing like a weed and has learned to read this year..whoo hooo!!!
Still lots of issues but doing pretty well:)
Juliex
Mum to Charlie 9.4 Hypotonia, muscle weakness, Moderate learning difficulties and great kid