Just realized we haven't done roll call this month, so I thought I'd start the thread- sorry it's a little late!

Things are going well in our world. Langan is WALKING. Like really- independently with no hands or walker or anything (although she still much prefers to hold a hand). She is still really awkward about it but it is coming along nicely. She is up to 30 steps at a time and is so darn cute doing it! I need to get some video of it. This is something we thought we'd never see so we couldn't be more thrilled.

Seizures are up and down- still no rhyme or reason. We recently lowered her lamictal b/c they got worse with the last increase (neuro recommended the reduction, which thrilled me). We go days without seizures and then have two in a night. Ugh. I hate them!

We took down Langan's crib and got her a big girl bed. It's actually a mattress on her floor for now. I know we had a thread on Child Neuro about low bed options but I can't remember the ideas. Anyone have any they want to throw out? Langan is back in bed with me for now- she slept with me on vacation and then I had a big trial and couldn't afford the sleep loss to get her back in her bed so now we're working on when to make the change again. She's in no hurry- she loves to snuggle!

I guess that's news here. Please jump in and give us all an update. It's so nice to have so many of our crew back together!!

(((hugs)))

Wendy,you read my mind,lady..

Well let's see..Mom's still dealing with her "friend" who has now left all of her "stuff",in Mom's garage. Soo..I'm thinking of writing "S" a letter,and giving her a piece of my mind...

Mom did however find an attorney,however..I'm not so sure about him.He's working for a local law firm in Fayetteville,but,has a wife,a precious little girl..So..I'm thinking of firing him..just not sure how.

If anyone has any ideas,please let me know.I know he's trying to help her,but, I'm not sure that he and Nana see eye-2-eye.

That's really awesome that Langan is finally walking

With the bedtime, you could get her a big size teddy bear or stuffed animal she can snuggle into in place of you, and you could put an old item of your clothing on it so it will have your smell.

Amigo22

So far this month we have added Keppra to her Topamax. So far that seems to be going well. She did get off to a little bit of a rough start last week. After that I decided to decrease her Topamax slower than Dr.P suggested. We are only decreasing by 25mg a week. I am still very very cautious about the amount he wants her down too. with the decrease of just 25mg a day the side effects seem to hav dimished a lot. She hasn't complained about the bad taste in her mouth since Last week.

So far the introduction of Keppra has not been the nightmare that I was bracing myself for either. We are still having behavioral outburts but they are nothing I MEAN NOTHING like they we before when she was on Keppra. Keeping my fingers crossed that it stays that way as we move up in a couple of days to a whole pill twice a day (250mg)

As far as seizure control goes I don't see a major difference yet. Thursday she had a pretty bad one. I pulled over and had the diastat out ready but thankfully she came out of the cluster with out needing anything more than a VNS swipe. Which also makes me think that her VNS settings were just too high, too fast. The magnet seems to be working better than it ever has.

Thursday she got her new stroller and we love it. I am almost used to the weight and size of it. She sits so much better in it. The only bad part is they didn't send seatbelts with it so we are waiting for them, which does present a little problem another primary use of the stroller is to keep her from running around and destroying things. Her impulse control is terrible and only seems to be getting worse.

I still haven't gotten the date for the neuro psych yet. Leigh said to call if we havn't head anything from the other office by mid week.

We have Rileys annual IEP meeting coming up on the 18th, I don't anticipate any problems at all. This school has been incrediable. I am anxious to see where she is and just how many of the current goals she has met.

I am still trying to process what is causing her regression, she is back into pull ups full time now. Somedays are better than others and there is no pattern to it at all. She went through a very similar period about 3 years ago. We never knew why it happened then either.

I think that's it.... for now..

Oh- one more, I finished the leaderships training this past Saturday and an amazing door has opened up for me as a result. I will post more on that in a seperate post though.

Hope you all are doing well!!!

Wendy- AMAZING and WONDERFUL to hear about Langans walking!

That is awesome that Langon is walking.
About the bed ... i do not have much o offer, but recently I bought a bed to put in Ava's room as I got tired of the air mattress. I sleep in her room around the times of those horrible SE episode. Anyway, I just put a boxspring and mattress on the floor ... intentionally to keep it low. Eventurally this will be her big girl bed.

Things are ok here. Ava had another status episode earlier this month. Quite a yucky site. This one genralized a lot faster than the others had. very tonic and eyes rolling p ( a first for her). Diastat worked beutifully but PI was longer than usual.

In the process of putting together a home program for Ava. We got approved for an aid to come in and do carry over therapy. Ava will be getting around 30 hours a week of therapy between myself, the aid, the PT, OT, DT, SLP and riding. Excited about this. Hoping all of this will keep her progressing and prevent too much regression. ( her last aEEG was almost continuous both day and night).

Other than that things are going well. Ava is having an awesome day today. Her walking has improved a lot. Oh by the by .... last spring brought up AFO issues we were having where Ava really struggled having it on. As it turned out, the AFO was misaligned and not fitted properly. We went to a different orthotist who fixed the AFO and since Ava has been walking well with it on and keeps it on most of the time. We also found these awesome orthopedic sandals from Russia or Poland I think. They have all sorts of great shoes. I will post the link later. They are pricy but worth it.

Hope everyone else is doing well and i do hope everyone from BT finds their way to BT II

I will give an update on the past 3 months.

July.

The kids started therapies this month. Zoe gets OT twice a week, PT once a week, Speech once a week, and Vision once a week. Nathaniel gets PT once a month.

Zoe, Michael (my husband), and I went to Raliegh NC for a weekend while my parents watched Nathaniel. We visited some friends and had a great time. This is video of Zoe with Michael on a gocart:

http://ferretbox.com/stuff/GHSE06%20-%20Gokart.MPG

Zoe, Nathaniel, and I went to Florida with my inlaws. Saddly Michael had a major project at work and could not go. Zoe saw the ocean for the first time and had a BLAST!





The only event from that trip was a seizure she had in the hotel room while all the family members were gone and I was there alone with her and Nathaniel. I was close to calling 911 but thank goodness it stopped and she slept the rest of the day.

August:

Durring the hottest parts of the summer, Zoe spiked a 105 to 106 fever. The doctors said it was neurological and that her brain is having trouble telling her body to regulate her temperature. We had to be shut ins for the majority of the month with the house at around 70. It was not fun seeing that electricity bill.

The GI doctor said Nathaniel will NOT require a gtube and cut his prevacid dose. He is doing great and not having a problem. He is also off the monitor! YAY!

Zoe's seizures started to increase. They got to the point where I caved and called the neuro. We went in to see the neuro and not only did they prescribe Trileptal, they ordered a new MRI, a new EEG, AND they reccomended AFOs for Zoe.

September:

Michael got a promotion at work. This means full benefits and a raise! YAY!

The kids have gotten sick a couple of times.

Hi!

Caitlin is doing well! We went to the "leg doctor" (her physiatrist) last week and that went good. She said Caitlin looked great and we didn't need to do more botox so I was glad for no pokes! She also read the PT's notes and thought a good longer term goal would be to get Caitlin walking in a reverse walker! She predicted (I asked for her thoughts on future) house ambulatory ...she looked at me like she didn't know how I would take that but I was happy to hear that, like I said to her "well when we had been told to expect nothing, house ambulatory sounds like heaven!!". School is going awesome, just wish she would tell me more about it. I ask questions and she will answer "nothing"....already shutting her mommy out!! The aide she has this year she had worked with when she was in early childhood and she is SO NICE! So I am happy about that and Caitlin loves her too. She is thrilled about taking lunch to school and proudly reports to me that she ate it all every day....it's so cute! Hoping hubby picks up a consulting job he bid so I can order Caitlin a new bed (Wendy I know you were asking about beds...and congrats on the walking!!). The Logan Sleigh bed in Pottery Barn Kids is what I am planning on for Caitlin....you don't have to put a box spring in it so it will be only 1/2 inch higher than the bed she has now (about 15" off the floor-like toddler bed height). We are going to have "musical beds" here at our house: new bed for Caitlin- Caitlin's current bed (low profile bed frame-twin size) will go to Brandon- and the baby will get the toddler bed from Brandon (which was passed down from Caitlin!). Hey- it's good to be the oldest!! That's about all, I must go to bed so I can get up before dawn to start my day again, I am beginning to get used to the early mornings!

Lisa O.

Hi Everyone-I have missed reading up on everybody so was so glad to find this link (on LilyAnna's site-thanks!).
Just want to give a little update on my Bugger. Nathan got the VNS implanted at the end of July. Our reasons were to try and wean some of his seizure meds because they really zonk him out (Klonopin and Depakote). The actual surgery went well but Nathan was not happy when they extubated him so he decided to hold his breath for all of the doctors. They interpreted this as more seizures and him not breathing so they reintubated him. I could not see him for over five hours. They put him in the PICU on oxygen and the vent. I was not too happy because I knew he really did not need the breathing tube. We were persistent with the doctors and they finally extubated the next day. Nathan did his usual tricks and turned blue while I was there. Again, the doctors got the Panic Look on their faces-and asked me how long would he hold his breath. I told them it takes him a while sometimes! I think many of the nurses/resp. therapists were surprised at how calm I was-but I have seen Natie's tricks so many times before this! Anyway, we actually got discharged a few hours after extubation (I think they just wanted us out of there!).
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. 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.
It's good to hear from everyone again!

I introduced myself in another post but just wanted to include myself in the roll call. Thank you all for the warm welcome I look forward to geting to know you all better and continuing to learn from your experiences.

Well, I didn't start Roll Call this month, because we just did August's and I really thought the original BrainTalk would be up and running by now. And now that September is half over, I keep wondering if I should bother posting. (Bad attitude, I know.)

School has started for all the kids. Yay! It's nice having Tom go all day, without me picking him up and taking him to a different school in the middle of the day. On the down side, he still does not want to pee for them. Ugh. He's actually made it all day several days without an accident. Of course, he's had some accidents, too. I'm beginning to think I need to go there at lunch time, just so he'll relieve himself. How much learning goes on in the afternoon if he's wiggling and squirming? And, the afternoon is when it's just the first graders; the kindergarteners have all gone home, so a lot more academics is going on.

Tom went to the DAN! doctor Monday. Eventually, I'll do a separate post on this. We're going to run a bunch of urine, blood, stool, and hair tests and then bump up his vitamin regimen and go from there. I'm kind of excited.

And, we've finished two weeks of school and Tom has his first cold. Ugh. No seizures, so that's good. Hopefully, with some help from his DAN! doctor, we'll get his immune system boosted and he won't pick up every bug coming down the pike.

I am in the middle of cleaning out my kitchen shelves (which is why I'm here right now. Who wants to clean shelves?) I've finally gotten the pantry cleaned out. It should have been done sooner, especially with the gluten-free changes we've made. I actually found a bag of wheat flour in my Tupperware storage. The flour was tossed, and the Tupperware is outside in a bag to be donated to... Goodwill or wherever. I still need to put fresh contact paper down. Did I mention I hate this job? No wonder I haven't done it yet.

Guess that's it. Eventually, I'll write a separate post on our DAN! doctor experience, but I really DO need to get our pantry back together.