Roll Call - August 2006
 

Greetings Everyone! Anyone?

It's after the "Great Crash" and I don't know how temporary this site is, but I thought I'd try and get us started again. I *think* we have to re-register. I used up my 5 log-in attempts and finally decided to register.

I don't know about the rest of you, but I've been feeling adrift. Thanks to Yahoo! I found several websites of our members (Lily, Megan, Kara Beth, Riley) and made an attempt to keep up. (I found Langan's too, but I was debating about whether I really wanted to register to read it.:o ) Anyway, once things get going again, I plan to make a file for myself with everyone's addresses.

Prayers that everything is going well with you... no seizures, no illnesses, no injuries. Register again, and let us know what you're up to... the good and the bad... the long and the short. I'll post my update in a separate thread.

Kathy
Mom to Samantha (9), Claire (7), and Tom (5). Tom is developmentally delayed, with lousy fine motor skills and poor vision and epilepsy. Seizures are mostly controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free.
(Guess I need to redo my signature, too.)

Well...

School starts here on Friday and Riley is getting excited. I am trying to stay positive and not start dreading it all. Rileys seizures are still daily, once in a while she gets a day or two break between them. Nothing has helped, at the last visit with Dr. Parrott in July he changed her VNS settings to stay on 21 seconds, off 1.1 minutes and he increased her Topamax to 350mg a day. Initially it seemed to help, she was given a few seizure free days after going nearly 3 months with daily seizures.

She has had a remarkable regression everything she learned last year is gone. As you may remember my big goal last year was just for her to write her name, and she was doing "hehe" or "hetehe" at the start of the year before she finally got it in March but then after her seizures started to get nasty and became daily her name become "H" followed by an unpredicatable string of letters.

Behavior is sending me over the edge. There is no rhyme or reason to it at all. Sometimes it appears to be total frustration than sparks it, others it is just out of the blue, and others I am almost 100% certain it is seizurey stuff.


The gluten free diet is still going. I have considered tossing many times but each time something or some one puts me back on track. We have changed everything about what we buy and where we buy it. I have to say that as a whole we are eating much healthier, I have lost 15 lbs in the last month and a half which is a good thing. Sarah is less moody and anything that contributes to that with her will stick around as habit here.

Rileys wheelchair broke a couple of months ago and we are still waiting for the replacement :( killing my back waiting. Her braces are again an issue, but that is nothing new. We are waiting for her new ones to come in. We did finally find someone that casts and sends them to Cascade so hopefully we will have it right the first time. She has none right now so at the end of the day her feet, legs and knees are hurting her (and I am sure that pain is part of the behavior breakdown too)

The other girls are doing great. Sarah is anxious about middle school and that has been reflected in her behavior and sensory processing. We have visited her new school every day for the last two weeks so she is getting a better grip on the change. Brittany has not had a migraine in a long time, she still is having those frequest deja vue episodes but is not bothered by it and Dr. P was not concerned at this point. Victoria starts high school, :eek: this year.. I can't believe my baby girl is going to high school... My niece and nephew are still spending more time here that at home, which is fine. At least I know they are being taken care of. Riley and Jacob are an awesome duo she loves to play with her jacob.

I am sure there is tons more that has been going on but for now I better run, Riley need more attention than ever..

Wow! Where has the time gone?

I guess our big news was our 1 1/2 week trip to Colorado. Three days driving in each direction. Unfortunately, I did not have enough entertainment for Tom, but we managed to survive. He was overwhelmed for a lot of the trip and kept asking to go back to "the room" (hotel room).

I bought a toaster oven for the trip and made bread mix to take with us. (I forgot to *bring* the bread mix <oops!>, but we spent one night in the trendy part of town and they had my specialty flours to make sandwich bread with. Whew!) I had spent enough time in advance planning meals for Tom and I that it all worked out. I was definitely sick of peanut butter sandwiches by the end of the trip, but it all worked out.

As far as the reason for the trip, we saw both sets of folks (Mr. Kay's and mine) and a lot of my cousins and relatives.

We got back home and then Tom started summer school. He missed the first week and a half due to our trip. I'm not sure how productive summer school was this year. He seemed to realize that Claire and Samantha were NOT in school, and the one teacher's aide made comments about his slack attitude. Kind of amusing, actually.

After the trip, Mr. Kay and I discussed that we feel our gluten-free developments are tapering off. Not that we are going back on gluten (actually, Mr. Kay still eats it), but that the burst of development we saw as a result of going gluten-free seems to be slowing down to Tom's normal (slow) developmental pace. Two weeks after this discussion, Tom jumped over one of his stuffed animals. He can jump, but he always jumps straight up and down, and his feet barely leave the ground. So, it's quite nice to see him actually jump over something... and jumping forward. Well, I know you guys understand those "little" milestones our kids work much harder to reach.

We took Tom for his yearly neuro check-up. Our neuro mentioned PDD again. Tom is not anywhere near the "classical autistic kid," but he does have some autistic tendencies. We're going to take him to a behavioral pedicatrician to see if he has any kind of teaching recommendations, whether we need something beyond a non-categorized special ed class with speech therapy and OT on the side.

School starts this Monday (28th). I'm a little worried about the "toileting" issue for Tom. He'll be going all day now, instead of half. I'm praying he'll actually pee in the toilet for them, instead of trying to hold it that long. (And, NO, he can't go that long.) I've been working this week on getting him as independent as possible (lots of chocolate chip bribes). We'll see what happens.

Guess that's it from my end. I'll probably think of a lot more after I post this.

I lost some weight going GF, too. (Yes, that was also good.) It was so nice to go on our trip and be complimented on the weightloss. I saw my parents and brothers and their families back at Christmas time, so it was noticeable. I had fun telling everyone that "I weigh less than my driver's license says."

We've noticed that dairy bothers Samantha, gives her an upset stomach at night. We're trying to eat better. I've been trying to cook double at night so that we can eat the leftovers for lunch the next day. The other day, the girls were arguing about who got to eat the leftover squash - something I thought I'd never hear. (And there was plenty of squash; I even got some after they took what they wanted.) Tom is eating a wider variety of food, which is wonderful. He is still picky, but there is noticeable improvement. The only downside I've noticed with our dietary changes... we're trying to cut back on all grains in general. I need to be very sure Samantha eats enough and enough protein to last her a bit. Otherwise, she gets hungry and very grumpy. Oh! And we discovered LaraBars. Those will be going to school with the kids for snacks this year. Too bad they're not cheaper.

Hi guys! Great to be back. Ava is doing ok. Several SE episodes this past summer. Very YUCK! She does not have daily sz like many ... but those prolonged ones that she does have are horrible! She had a 24 hour aEEG which showed almost continuous activity in both awake and sleep hours. Again we were warned abut regression and that Ava eeds as many services as she can get.
She is titrating Lamictal and getting off Trileptal. Thank goodness.
She also began the Low Glycemic Index diet which I think is finally beginning to help her.
We switched neuros. We are now w/ Dr T at MGH and she is fanastic!

Finally got the AFo thing figured out. Turns out it was not fitted correctly and it was not alighned properly. Once we fixed it, she wars it all of the time now. Still, in general it is not the best brace, but we only have another month to go before we get he better once.

Hope everyone else is doing well.

Anyone know if all of the old posts are gone?

Well, a lot has happened for me over the last 6 weeks we've been apart!! As you may or may not remember I'm in a nursing/rehab type facility and I have a goal of going into independent living adventually. I copied and pasted this from another site I post on, anyway here it is.

You all know I'm adventually going to go into independent living and get my own apartment. While in the process of doing all of this I had applied for Section 8 housing. I got a letter the other day stating that I was at least a year or 2 before recieving my section 8 certificate, I thought, oh man a year or 2. I could move into an apartment before getting the certificate but I'd have to pay full rent until then, after that I'll only be paying 30% no matter where I go.

I can't wait that long, I'll go crazy here until then!! Well, I have a friend who used to work here then quit. She has a goal, she wants to renovate her house and move in people with disabilities like myself who wants to adventually get a place of thier own, sort of like a transitional process so those people could get used to being out of the nursing home situation before going completely on thier own! UCP would be involved with the services we would need just as if we were on our own. We would have attendants coming into my friend's home to care for us just as if we were in our own place.

We would have a training process like getting public transportation, starting a checking account at a bank, going grocery shopping and so on....I truly believe this will be a positive move and I will have my friend help me get used to different stuff! We will have a contract with her and we will pay her rent just as if we were in our own place.

She's already thought of her personal time with her own family and at those times I will respect them and stay in my room or go away somewhere. But then at the same time she wants us to feel welcomed in her home as well because basically it will be my home as well until I move on.

The estimate time for me moving in would probably be late October-early November til she gets everything in order and gets what I need as far as adaptive eqiptment and bars in her bathroom and meets ADA requirements.

So, I'm really excited, maybe a bit nervous but I know it all will work out at the end! Please keep me in your thoughts and Prayers over the next couple of months!

Thanks,

Robin
__________________

Oh man where to begin.......
Let's see, as many of you recall Megan had her Make A Wish trip the end of May and needless to say we had a BLAST!!!! Megan loved the "It's a Small world ride and the Dumbo ride". She loved MGM, Universal, SeaWorld, and of course Give kids the World Village was just undescribable....It was truly a most awesome start to our summer......The summer has just flown by.....I can't believe that on July 19th was Megan's 1 yr anniversary for her spinal fusion surgery. I soooo missed not being able to share that most incredible milestone with you all. Megs is doing wonderfully!!!! It is truly amazing how wonderful that surgery has been for her. Friday she had her most recent round of botox in her arms, she got 8 injections. She loves being in her harness that is suspened from the ceiling and is standing very well in it virtually on her own!!!! She is sitting in chairs with no headrests and able to control her head all by herself. God is GREAT!!!!
Joshua is a junior in high school this year, and that makes a mother feel like her baby is really going to be gone soon. He will be 17 in November. He is heavy into football now and our 1st home game is Friday night.....Go TROJANS!!!!
Jacob is very excited, he is going to be going 3 days a week to a local Lutheran preschool. It will be Mon, Wed and Fri from 8:30 to 11:00....Although I know there will be tears (from mommy and Jacob), I know once he gets into he will love it!!! He starts that on Sept 6th, along with a little boy tumbling and trampoline class one night a week on Weds from 4:15-5:00.
Just staying busy with the start of school and all the activities that are upon us..
Scott is nervously awaiting what is going to happen jobwise. As some of you may recall, a year or so ago the BRAC commission realigned guard bases. The one he works at was one on the list. He has applied and passed the written test for another job with the State. He still has to pass the psych testing and physical agility. When he passes all the preliminary testing then he will have to go away for 10 weeks for a police training school. It is a MAJOR cut in pay. But he will keep his 20yrs he already has in at the state, keep our most wonderful insurance and have a job. We are pretty nervous about it all. We know it will the best for our future. Prayers if this is the path the Lord wants us to take that it won't be too rocky.
I know there is so much more I could go on and on about but I will stop for now and post more later.....
If you get a chance check out Megan's site and look up the journals for the story about our trip home from six flags. It is a hoot. Just way toooo long to write.
So glad to be back and hoping more of the gang will be here soon
Love to you all
Tracy

So glad to see the site back up and running. Hopefully all of the old regulars will find their way back home.

I'm hear too. Glad things can hopefully get back to normal here at BT. I've missed it so much. No time to update but will later.

Jennifer

Hello everyone!! I've missed you all sooo much.

I want to remind everyone that this is only a TEMPORARY BT Forum. John Lester, the moderator for the old braintalk, has nothing to do with this site. He is still working on the other one. So, please, recheck the old site on occassion for when it is back up. Everyone might not find their way to this site. I was urged by some people not to post here, but I miss you all soooo much!!

Glad to hear all the wonderful updates, isn't it amazing how much stuff happens in a few weeks!!

Here's a quick run down of Adam's big news:

1. Adam turned 5 years old on July 18th, he had a nice birthday and of course he enjoyed the cake and ice cream.

2. Adam had a check up with our regular dr. for school, we hadn't seen him in awhile since the kids remain so healthy (knock on wood). He said Adam looked great and was the healthies BI child he'd ever seen. He's gained 5.5 pounds since March!! WOW, he's now up to 36.5 pounds. Could it be those Carnation Instant Breakfast drinks, he gets one a day and loves them.

3. Adam started school last week!! So far, so good. He seems to really be enjoying himself and getting lots of attention. He's going only for the morning, it's wearing him out too! This is Adam's first school experience. He is in the reg. ed room for 15 minutes and then gets pulled for one on one with the sp. ed teacher and he gets OT, PT, ST and Vision 2 x a week for 30 minutes!! We are still ABRing at home, 3 hours a day.

4. We are headed to Chicago this weekend for another ABR therapy training session...it will be nice to get away, even if it is a therapy trip. Dwayne is going to a White Sox game with another dad and I am taking Emma to American Girl in downtown Chicago for lunch - it should be fun!!

5. The last weekend of Sept. we are going to Disney World for Adam's wish trip through the Sunshine Foundation. We are looking forward to a pleasure trip and Adam LOVES Disney.

Well, that's about it here...looking forward to hearing from everyone else.

Don't forget to check back for the old forums.

Jennifer

Hi, I missed everybody, I checked the old forum everyday, and I thought that is it, it is never coming back!

Jake had surgery with Dr. Nuzzo on 8/15, (jen, Ava's mom, if u want specifics about the surgery, please email me privately, I can give u all the details), he had bilateral alcohol block and PERC on the hamstrings. His hamstrings and abductors are so much looser than before. The best part is there was virtually no recovery time, he was crawling on the floor like he did before by 6pm, and he had surgery at 9AM the same day, and was home by 3:30pm.

Right now, we are doing 3 weeks of intensive suit therapy.

As for me, I applied for a part time job, a really easy job, but I guess I am not getting the job since it has been a week and half ago that i went for the interview, and no one has called me yet. I told them about Jake, and that I can only work a set number of hours a day when he is in school. I was honest about my situation, but I am not really surprised that I didn't hear back from them. Oh well, I am thinking the next time I shouldn't say anything. But then, how do I explain why I haven't worked in the past 3 years?

anyways, happy to "see" all of you again!

Jenna and Jake.

Just checking in! I have a big trial starting Sept. 6, so I've been busy - but I sure have missed everyone! Jenelle is doing really well - you can catch up with her at our blog.

http://www.jenellesjourney.blogspot.com

Hope all is well!

Kelly

hi everyone
 

tomorrow is my birthday and this special occasion is maikng me happy.
however during my physical exam the dr was asking how long has your uterus been like this? i replied i am not sure. Although I had noticed that it was hard like a rubber ball. the very next day i was sent for tests and the ultra sound revealed a 21 cm/ almost 10inches cyst on the right side of my uterus.

Surgery has been scheduled for sept 6th..hopefully i do not have cancer..
they are trying to assure that it is benign but won't know until they cut me open.

Robyn

Hi everyone-i had to register again too-i'm going to read everyone's updates and then submit ours--

ok-i am caught up and am jealous of all of you that can travel with your kiddos. Sarah is only good for day trips and even those are tiring for her. I have decided the only way I will ever be able to travel will be to rent an RV and drive around the country to see the sights. Anyway, that's fabulous to enjoy the summer that way.
Sarah is doing fine--her permanent teeth are large and coming in every which way. She got her first period a few weeks ago. Theraputic riding is going really well once a week. She just turned 10. She is having further RETT testing this month in Boston. Oh, she is getting contacts next month and a new brace to sleep in for her left leg to keep that hamstring straight at night.
Tracy-what is the harness that Megs is hanging from? Did you make it?

Hey guys!

Wow, August already! Time flies.

You will have remembered that I went to a boccia competition in July, I didn't update you so here's the basic outline of the weekend:

I won my first game 9-4. I lost my second game 7-1, against the really hot cocky #9 guy in the world, it was an improvement. Won against my rival 5-0 YAYYYY, that was the best feeling ever. Lost my last game 2-4. So I won two, lost two, an improvement on the nationals. I didn't get through to the quarter finals, but I really enjoyed the weekend.

I'm going to the nationals in October with the national coach and his wife. No parents or siblings for four whole days!! That should be fun.

Other than that, I don't have much news. It is winter here and I have lots of assignments to do! School is boring as always, and I can't wait for my next break.

Glad to 'see' some of you again!

Hi (((((((ALL))))))))))))

Good to be back. I know I wasn't very active before it crashed but I had been reading a lot of your posts.
Not really much going on here not really sure where the time has gone wish I could have got out and done more I went for a driving assessment last month they said not right now try again in 6 months I am not sure what will change as CP doesn't change but I will give it another go.
Back to school on the 5th will be my last year :( :)
I will be 18 in 3 weeks planning a party so looking forward to that.
I think that's all really

ETA: Well done Erin! Was it boccia? We used to play at school but haven't for a while we quite like new age Kurling have you played that?

Jennifer, Strange that you would be told not to come here. That is concerning. Why not talk to your buds until the original is available.

Onward to Spencer update...

The Life Care Planners come for a meeting with the Therapists, Docs, Teachers, and Parents August 31st and September 1st to start putting together Spencer's Trust.

Spencer started Kindergarten and is doing really well. He likes his small class.

He can READ "horse", "car", "cat", and "dog". Call me shocked at that! I am so excited that MY child is learning to read at 5 yo.

Trevor loves 4th grade and is doing well.

Kevin has a hernia and will have surgery September 8th.

I was supposed to have surgery to repair my deal September 6th but Kevin's hernia trumps mine. So, mine is postponed until January 17th. (I hope)

What else? I bought a new bike for Trevor, bike for myself, and trailer for Spencer. I use the bike to run errands that are within 5 miles from home. I am hoping this will help me down size, save money on gas, and be nice to the environment. The grocery store is 2 miles from home and the terrain is fairly flat. I take the trailer to the store and use it to carry the groceries home. It is actaully not too hard. (I even haul 40 - 80 pounds of water.)

I think that is it.

Glad to see everyone and glad to see BT back on line even if it is the lite version.

Hi everybody I am back and I miss the CP forum I have been posting in there for years.
Great to see Brain Talk back so many must have missed it.
Val (UK)

Glad to See you Guys!!
 

Thanks, Kori. I was so excited to get your message today about this new Child Neuro. Man, I have missed you guys!!

Langan is doing well. She has had a rough time with seizures recently but, knock on wood, has had a few great days in a row now. She was the best ever at school yesterday and her vision therapist actually kept calling me from his session to tell me how stunned he was by her progress. She was walking independently for him (13 steps!! A new record!!) and doing very well visually and interacting. We'll see how long it lasts, but are trying to enjoy the good times.

We spent a week in Cape Cod earlier this month. The traveling and change in routine were hard on Langan but she sure did love the beach and the pools! She loved to stand and jump in the tide as it came up. It was too cute.

School started again last week. Langan was there all summer but the regular school year began 8/14. She is in her same class with her same teachers and aide, as we requested. Two other classmates stayed behind because of late birthdays so she has some familiar faces. And the other kids seem really sweet. It is funny to see Langan as one of the bigger kids in class- I am so used to her being tiny compared to her friends.

Just finished a huge trial this week and am wiped out. Jon was a saint all week- taking great care of Langan and bringing her to school, therapy, etc. He definitely earned the Best Husband and Daddy award!

Langan turned 4 July 19th- same day the Champ turned 18. We had a wonderful pool party to celebrate with her classmates.

That's all I can think of now. I am so glad to be reconnected with you guys!!

Wendy

Just dropping by to say Hello to everyone. Missed reading all the posts and the updates on everyone. Kody is doing well and is going back to school on Monday at School for the Blind. Kody's Aunt Nicki (my other daughter) is due to have a baby boy in about 3 weeks. And my son's wife is due Nov. 22.(don't know the sex) Lots going on in my life! Here is Kody's website in case you want to take a peak.
www.caringbridge.org/pa/kodyc

So glad to see everyone!
Randi (Kody's grandma)

[QUOTE=wheeliegirl1988;
ETA: Well done Erin! Was it boccia? We used to play at school but haven't for a while we quite like new age Kurling have you played that?[/QUOTE]

Yeah wheeeliegirl it was boccia!! I heard some exciting news yesterday, I have the right classification to play internationally. :D

It is like Curling, never played only watched.

Im still here also. :) Been one BUSY BUSY summer and hasn't stopped yet. My back/knee doctor started me back on P/T again for my back and knees again. Well I went to see him for my knees and told him about my back and he said they cant do surgery (because of all my other health issues) and prescribed more P/T. I do have a lot of tone problems also.

I know my lowerback is probably getting worse because now Im getting the burning shooting pain down my leg especially when Im sitting. The neuropathy has gotten worse also.

Now we also think Im having seizures and the eeg I had came back abnormal. So now Im on seizure meds. BOY did I NEED you all to ask questions about that and the meds.. I still probably do.. We still arent sure what kind Im having.

So on top of all the OTHER appts I already had, I have new appts and therapies on top of those. This month I have MAYBE 2 days (weekdays) where I dont have SOMETHING scheduled.


Adam had surgery to remove two jaw cysts. He just had the drain tube removed a few weeks ago. THEN we found out Noah has a HUGE jaw cyst in his lower jaw. Adam's were upper jaws and smaller than Noahs is. Noah had 7 biopsies done 2 weeks ago for skin cancer and 1 was positive for skin cancer and the one right below it might also be. They didnt get enough tissue to sample but it looked the same so Im saying it probably was. Im not breathing totally easy on the other 5 because I had one that said "NEGATIVE" but ended up being one of my WORST positive skin cancers.. So I will still watch his. They STILL havent treated Adam's skin cancers even tho he has had TWO POSITIVE biopsies ( one was 1 1/2 YEARS AGO).. Stanford wants to see the boys and is interested in treating them. I might just start taking them there if the doctors they see now WONT start doing something. You dont mess with cancer, I dont care how slow growing it is.. AND you DONT mess with THIS mother lion and her cubs!!! :mad: :p

Adam Noah and I leave tomorrow for Sacramento for Ronald McDonald house because Noah has his yearly MRI for his brain cyst and Chiari on Tues and sees the oral surgeon on Wed for his HUGE jaw cyst then we come home on Thurs. Then Friday I have more P/T.

I also changed our primary doctors and the boys have an awesome new pediatrican!! I really like her. She is on top of things and gets things done. I told her about Adams behavior problems, anger and other issues and she right away requested an evaulation from a psychiatrist. She asked why one hasnt been done. Well one was done when he was 6 to be tested for Aspergers (he is 11 now). I said, no one will listen to me.

Anyway.. Sorry this is so long.
HUGS and glad to see you all again.
Gina Marie :)

Well I finally have time to post on here. I didn't realize that John Lester didn't have anything to do with this but all the same, when the old one comes up everyone will go back there. I'm just grateful we have one at all. I missed everyone! I don't know how many times something would come up and I'd think, "Well, I'll ask everyone from CN" and then I'd remember it wasn't here. :(

Chloe's been pretty good. Good and bad days with her myoclonics. It always seems like she starts the week off great and then has bad days Thur-Sat and then is fine again. I can't figure out the pattern and I think I am going to pay more attention because it seems like it is every week the same thing. Also, we sold our house!! We were so happy to sell our house and snag the one we fell in love with in the next town over(about 20min away but to my mom, dad, and MIL you'd think it was Siberia)so we will be moving in October. I kept Chloe out of school here in town because she had a personal aide and stuff and I felt bad only being there for a month or less and then leaving them behind. She's happy to continue to sleep in for another month. :) Our main reason for actually moving to where we are is we would be in a different county with a better special ed program and Chloe would have a few options out of two schools to attend that are both supposed to be great. They are both about 20-30min from our house but in the long run it is perfect whether I decide to take her or the bus, we'll see.

Other than that we are doing great. This is my absolute favorite time of year and I cannot wait for the cold weather to get here. I hate heat! Although it was made bearable by my parents boat this year so that was nice. Chloe loves the boat and that's how we spent this summer.

Glad to see everyone again!!

I'm here too

Donna