It's ROLL CALL time again!

[MegNJaxMom]

I thought it was time for another roll call.

We are pluggin' along with stuff. Megs is doing pretty well. She just got her HotDogs and they are really making a difference. I don't know if it is enough, but it is noticable! She got her hair cut and looks too old for me! It looks the same from the from kind of, but from the side and back it is short and cute!

I am about to start the second 8 weeks of classes. This 8 I have Human Growth and Development, Educational Psychology, Orientation and Practicum, American History. Next week I will be in a classroom 2 days doing practicum hours and I CAN'T WAIT! I know that I am not destined to be a preschool teacher! I love my job, but I want slightly older kiddos.

Chris is happy at his new job! Thank the LORD! He is so much easier to live with. He quit his chewing tobacco habit too, so now we are working on CLEANING 101! He is home all day alone, I think he could do some stuff around here don't you?

Jack is REALLY looking forward to Halloween. He tried his costume on today... Broke his heart when I made him take it off. He is very excited about being "Dark Vader"... we can't convince him it is actually "DARTH" but whatever!

NEXT????

[CoolAngel28]

Are you a mind reader,or what?

Plugging along here,working and cooking in my spare time,and loving every minute of it.:)

Okay...who's next??:) :D :cool:

[Braindrain]

We just had my younger nephew's birthday, so now we're getting ready
for Halloween. The house is decorated, but we don't have the candy,
yet. Last year, we didn't have any kids coming around, so this year,
we're buying candy that we know we'll like...because we may be the
only ones eating it!

Next!

[kathleenandjoe]

Been a while since I've done one of these. ..

Becca is doing great with the exception of a cough/fever something that came with lowered threshold seizures this weekend. We are still titrating up on lamictal and almost half way there. We start the slow keppra wean tomorrow! Yeah! She is ready to be snow white for halloween as mommy will be the same with her. Kindergarten is going well for her and she is about to finish her first soccer season this week. She is now a Girl Scout Daisy and I am one of the leaders! She has an MRI on Friday with sedation (of course). Seizures were down to about once per week before this sickness. We pray lamictal will be our miracle drug. I am seeing my sweet Becca shine through more and more again. It makes my heart smile. It's been a rough few months with meds/seizures. I only saw one seizure on the EEG, but evidently there were more "episodes" - so the current theory in her behavior improvement is that the lamictal is starting to stomp out little "episodes" she was having that were causing her frustration and madness. Whatever I say - we will take it.

AJ is 18 months and crazy funny. He makes us all laugh A LOT. Becca is a great big sister still and he LOVES her (and she loves that). He will be Elmo for halloween.

Joe is still stateside, thankfully. He is enjoying bow hunting season this month here, and I am waiting for him to fill the extra freezer we supposedly had to have for just that. He's kind of bored with his new billet here, but goes to an FBI school in January he is excited about. It's not to be in the FBI - some other school training run by FBI for law enforcement/military. This school will keep him safe from goin back to Iraq until after March -- so I am a fan.

I am fine, really. Busy and loving that I have the opportunity to be home with the kids right now. I will be taking classes to pursue PA school or something like that soon enough.

You can check everyone out here:
http://rileyusmc.shutterfly.com


Next. . . .

[ian]

Hi All
just to let you all know all is going okay for me ... i have my good days :) when i'm not getting teary eyed and i have my bad days - well you know what happens then :o :( , anyway i got appointment to see my NS after christmas which i can't wait for ... lol

Whos Next??

[LIZARD]

Just The LIZARD checkin' in. :)

I keep waking up too early, but aside from that, life is going very well. :) Drew has a great teacher this year, and I think he even has hope of being semi-prepared for jr. high next year! :D

Caren went to her first Homecoming dance last weekend. WOW...I feel so old! :eek: She is a beautiful young woman now. :) Yes, I'm a proud mommy! :D

Hubby is doing well. Job's going well, and he gets home at respectable hours. (Don't know if any of you heard about the fire at the abandoned amusement park a few miles from us. It made Headline News last week. He said he could see the smoke from his building, more than 20 miles away! :eek: )

I am having a minor (annoying--not serious, by any means) brain issue I'll post about in a separate post. Just wanna get input from anyone who has some. :)


Love y'all!

LIZARD :)

[Shown]

Well we just past our one year mark with diagnosis hydro and a pineal cyst. I wish I could say things are better today than they were one year ago, but that would be a lie. Last week was a really tough one, but I think it was more of the approaching cold front than anything, front past and so did the headache(only 3 days this time). It just amazes me when I think it has already been a year, right now hubby is unable to work, he applied for SSD and is waiting on a visit to the workman's comp dr this week. So life is just in limbo land but he is still with me and that is what matters.
Take care!
Shown

[DystoniaGal]

Shunt wise I am doing fine, we tried to increase my shunt setting from 30 to 50 a couple of months ago. Not a good thing, within a couple of days I was incoherent. So we are back down to 30 and know that I am shunt dependent.

Went and saw my neuro this morning. I am having issues with my dystonia. My neck is acting up and I am in pain.

I finished school back in mid august and I have yet to find a job. :confused: But I haven't given up hope.

[canadianlistener]

Nothing to update. Same ole, same ole. No memory, shunt works off and on, syrinx is annoying me, abdominal pain is driving me crazy, and surprise, surprise...doctors don't return calls.

Life keeps rolling in Canada.

Robert

[KathiDG]

I'm doing OK now...had a scare a couple weeks ago...I had a programmable put in Aug 18th and fell and hit my head (RIGHT ON THE SHUNT VALVE). I was pretty well headachey at that point for a couple days, but I seem to be all right now. The only thing I really can't seem to get used to is the barometric pressure headaches....anyone have any ideas? For the most part, they DO go away when I take something, but last night it took a couple doses. Plus got this watery feeling in my right ear....not sure if it's sinus or shunt overdraining and needing to be adjusted. I have problems distinguishing between shunt and sinus problem with that.

Plus, I'm in my 3rd or 4th week of job hunting...so far nothing's come up.

[Suecr]

Hi, we are here! Been very busy, to many things on the calendar! My son Bobby turns 4 this week, had a party for his kiddie friends on Sunday at an indoor plyplace, they were all cute! Hayley fell twice (off her chair during cake) again, but is ok. Otherwise, plugging away, her next appt is this Friday for more endocrine blood draws. Still contemplating the Az trip. And, Hayley's NS is doing a live NS procedure on Wednesday 25th at 1 pm at Boston CH MR/OR, here is the link if anyone wants to see...

http://www.or-*********/childrenshospitalboston/1360/

[Nikki_Poohs Mom]

I love these as it gives me a chance to see how everyone is doing....or sadly, at times, when someone is not doing so well. At least then, I know who to pray for.

Kathleen - LOVE the pictures! The one of Becca and AJ in the pumpkin patch is cute, cute, cute!

It's been a week and two days since Nikki gave birth to "Precious One"...Laci Marie. Nikki is suffering with some pretty horrific headaches and nausea the past week. Along with pain from her neck down her spine. She has an appointment with the NS on the 17th of Nov. but we'll go sooner if needed. Nikki's a wonderful and very attentive Mother. I think she'll be just fine ;) Funny, she has had some problems with short term memory for the past couple of years, but seems to have no problem remembering things that have to do with Laci. They are still staying with me, so I can help Nikki. They will be going to their own place on Friday, so I'll be having Laci withdrawls :p 5 minutes away, but it won't be the same as walking into the living room day, night, or middle of the night to see, hold, feed, cuddle, or sing to "Precious One" She's a very good baby, so beautiful like her Mother. She looks so much like Nikki, when Nikki was a baby.

As for me, Laci makes everything seem so less important. She brightens my days and makes me forget about all my troubles. ;)

We're very Blessed!

Hugs to all,

Nina

http://i101.photobucket.com/albums/m54/nikkipoohsmom/goinghome-05.jpg

[momtwoboys]

Hi everyone!

I have a 5 yr old son with hydro. He was diagnosed at 12 months and shunted at 14 months. He had his first shunt malfunction in Aug. He had two revisions (first developed a clot, second an infection), was externalized, and then had a third revision. He is doing great now. We are getting ready for a well needed Disney vacation! Any tips or advice about WDW welcomed. Also, where is the best pediatric neuro in Florida if needed?

TIA
Chris

[Coaster Crazy]

All is well in Pennsylvania. A little unhappy my roof had snow on it this morning. October is too early for that!!!! Kathleen - I can't believe AJ is 18 months already. Seems like yesterday. Its wonderful that BT is back up. All of the children here are inspiring to this 41-year old!!!!! Welcome to Lacie as well. Stacy.

[DystoniaGal]

Hi everyone!

I have a 5 yr old son with hydro. He was diagnosed at 12 months and shunted at 14 months. He had his first shunt malfunction in Aug. He had two revisions (first developed a clot, second an infection), was externalized, and then had a third revision. He is doing great now. We are getting ready for a well needed Disney vacation! Any tips or advice about WDW welcomed. Also, where is the best pediatric neuro in Florida if needed?

TIA
Chris

Chris

I would go to the hydro assoc website and write down the names of the docs they list for orlando. i would say arnold palmer from women and kids would be your best bet. I am biased I have all my surgery done at Shands at the University of Florida. The peds neuro here is wonderful.

HTH,
Suzie

[Austinsmom]

Austin is in college and doing pretty good, all classes are at a B grade, he hopes to bring those up, He seems to becoming closer with his roommates and feels more at home. :) Austin has been very sick this last week, and went to the doctor, he has an ear infection and is running a fever, has a sore throat, he sounds bad, I worry so about his seizures or his dystonia might go crazy on him when he is sick, the doctors put him on Anti-bods, and he is going to school sick, he so worries about missing school and failing, ( he seems to be saving his sick days for something bad like a revision :( ) his Anxiety is high but he just keeps on marching on and doing very well, his memory is noticeably causing him problems, but as I said he really is doing great :cool: It has been so hard I don’t think he could take to much more on his plate, I am not sure if Austin could work a job and do all this, not sure how that will work..but that we will deal with as it comes.
When Braintalk was down the Hydro Assoc had a newsletter where Austin was in for the 2006 Scholarship Recipients! here is the site in case you didn't see it.... Proud Mom's moment :D http://216.82.69.211/pdf/Summer2006Newsletter.pdf
Austin has had many headaches lately, I think it is stress. But so far all is going as planned by Austin, he is such a great kid:D
I hope all of you are doing well
Love to each of you and your families
Deborah

[Violet]

Hi everyone,

I've been lurking for months, even before the site went down. It seemed like it was time for me to emerge from the shadows, so here I am.

I'm here in support of my husband, who has hydrocephalus and has had a shunt since he was 5 months old. He's 25 and has had 26 surgeries, 7 of which weren't necessary (a doctor kept saying his shunt was infected when it wasn't). He answers my questions about hydro, but I'm still trying to learn and understand what he's going through. One night a few months ago we sat down and looked at his CAT scans (some couples look at pictures, we prefer to go a little deeper ;) )

[LIZARD]

Hi everyone,

I've been lurking for months, even before the site went down. It seemed like it was time for me to emerge from the shadows, so here I am.

I'm here in support of my husband, who has hydrocephalus and has had a shunt since he was 5 months old. He's 25 and has had 26 surgeries, 7 of which weren't necessary (a doctor kept saying his shunt was infected when it wasn't). He answers my questions about hydro, but I'm still trying to learn and understand what he's going through. One night a few months ago we sat down and looked at his CAT scans (some couples look at pictures, we prefer to go a little deeper ;) )

Hey, Violet. :)

Feel free to lay your questions on us. :) I applaud your willingness to try to understand, too. I haven't had nearly the surg history that your hubby has had, and I'm considerably older :o, but I'm happy to answer any questions I can for you.


LIZARD :)

[Kristine]

I'm happy to see the board back up and running. It's been great reading and catching up with everybody.

Ethan and Emily just had their 4th birthday on October 3rd. Things are going well despite the headaches that Emily still suffers from. They do seem less frequent now than before because I think I have figured out several of the triggers. We still don't know if they are just migraines or related to the shunt. All I do know is that when she gets a really bad one and starts vomiting, our anxiety level shoots through the roof wondering if her shunt is failing again.

Emily is in dance class again this year and is loving it. We moved her to a different dance school and I am very happy with it. The teacher has told me that Emily is doing a wonderful job and is keeping up well with the other girls. She loves it and that is all that counts. We gave Ethan the option of taking dance class with his sister or gymnastics and he chose gymnastics. He is doing well and he loves every second of it.

I was very pleased when the kids had their 4 year checkup with the pediatrician. Although we are still lacking in gross motor development, academically the kids are advanced. We have two years before we start kindergarten, but both have been writing their name for a few months now. Emily is starting to spell words and trying to read. Ethan is my math wiz and is already doing simple addition and subtraction through word problems. For example, you can ask him "If you have 5 apples and somebody takes 3 of them away, how many are left?" Or I can simply ask, "Three plus four equals...?" He gets them right probably 90% of the time.

The only other thing new going on here is that we now have a boat and the kids are LOVING every minute we are out on the water. Whether we are fishing or just boat riding, they enjoy it.

I'm so glad that the board is back up and running. I look forward to reading more and keeping up with everybody. I hope everybody stays well.

Here are a few new pictures of the kiddos.
http://img.photobucket.com/albums/v289/kebbert/sigpic-1.jpg

http://img.photobucket.com/albums/v289/kebbert/Untitled-1-4.jpg

http://img.photobucket.com/albums/v289/kebbert/boat6-1.jpg

[CathyE]

I was shunted 9/27/01. I have been having varying degrees of over draining mostly the whole time.
I always do better when I have a cold. I think it increases the pressure in my head, so I don’t get the low pressure headaches I usually get, or not as badly. I am the “lie down queen”. It gets frustrating.
So, I have been doing much better than usual the last 3 weeks! Sure feels good!

I’ll probably post more soon. Just trying to keep this short.

Cathy

[ian]

Hi All
just checking in .... its been a sad time for me lately it has been 9 years in october (1997) since i had eye surgery to correct my vision on my left eye which didn't turn out the way i wanted too and being told by a eye specialist , 2 weeks after eye surgery that nothing had improved :( i have never been told why my vision went like it did except when i was told back in the early 1980's to early 90's that i had cataracts :mad:i apologise but i just had to get that out of my system

[Penny W.]

Hi all. I hope this post goes through as my first one (a while ago) didn't.

I am not changed much. Have been feeling very like pre-last revision for a few months now and I decided I'd wait till the anniversary of my father's death (next April) to see about it, as all my tests were clear. My GP agrees.

I think I may need to change hospitals and that is a bit unsettling. Just have to confirm what Dr. B. said and if he insisted I do that or not. My family doesn't really want me to because I've spent about half my life at the one hospital.

Off to a meeting soon which I don't want to go to even though I have to "chair" it again. It's been raining for a change, just after we got news that the dam levels are very low.

Being pushed to get a voluntary job and I actually registered with a volunteer agency...unusual for me because I prefer to look for activities directly.

Anyway better go as I have less than 45 minutes to be on the train.

Regards,
Penny.