Hi everyone! I thought maybe you would all like to check in and let others know how things are going with you all.

your children:

their age:

their diagnosis:

anything new?

concerns/worries

anything else you want to add?

your children: Heather Hegge

their age: 16 1/2 months

their diagnosis: Tuberous Sclerosis - she has tumors in her eyes, heart, skin, and brain. She had Infantile Spasms (seizures).

anything new? Heather is totally off her medication now after a month long wean. She is really getting close to walking.

concerns/worries - there's always a concern that she will begin having seizures again. This will probably last forever. You just never know what the next thing is that you will have to face with this disease.

anything else you want to add? While feeling elated about how well she is doing on this wean, I also am terrified of what lies ahead of us. While she was taking the medicine, I felt as though we were somewhat in control of the sitation (not that we really were). Now, I am just scared. But at the same time, I am so hopeful and happy! Does that make sense? There's not a day that goes by without me thinking about her disease, but at the same time, there are moments during the day where I don't think about it anymore.

Edited to add: We have a check up with the cardiologist sometime in February to check to see if her hole in her heart has closed any more. She had a PDA closure in September and it was about 99% closed.
I am hoping you all are doing well and that your kiddos are doing great!

So glad to hear things are going well! I'll try to update about Courtney soon.

your children: Janelle Ashlynn and Kincaid Chance

their age: 3years 4 months and Kincaid 21 months

their diagnosis: Janelle has FTT and supposedly ADD though I don't know that I agree with that. Kincaid has epilepsy and a moderate speech delay that is definitely getting better.

anything new? Kincaid is getting new words everyday he is still really hard to understand...dh and I can get around 100 words now! This is up from 40 last week! My brother, who moved in with us at the begining of december, can understand about 20 or so.

concerns/worries Janelle had a million (ok 11) viruses during the end of november through the first week of January (we are only 11 days being healthy now...our fingers are crossed here) and managed to lose 3lbs...which is a ton for someone who only weighed 21lbs...Last Tuesday at the neurologist (She was jelous) she weighed 18.7lbs...that is just scary. It's also now been about 18 months since her feet have grown...and we keep taking her to get them meausured to see if we are wrong and just haven't noticed....she is still in a size 5 shoe and is over 3 years old.

Kincaid had a really rough week last week...but it turned out he had just gained a ton of weight in a very short time period and literally outgrew his dosage of seizure medication, now that we have bumped it up he is back to his self!

I'm going to post 3 times for each of the kids so I don't confuse them!! LOL

your children: Matthew

their age: 6.75 (he likes to tell this factoid to everyone!)

their diagnosis: cerebral palsy, visual issues, spatial issues

anything new? another 2 teeth fell out! He's getting rich. :heee: Had his first report card (he's in gr. 1) in early December. He only has an IEP for English (I thought it covered more) but he got a B+ in 90% of his subjects and a C+ in art and French (and according to the teacher, the marks would jump if he participated more). So we're thrilled at how well he's doing fully integrated this year.

concerns/worries: Nothing yet - it's all going smoothly right now.

anything else you want to add? He's already counting the days to Christmas next year and has started his list. He really grasped the notion of gifts this year to say the least. :lol:

your children: Andrew

their age: also 6.75

their diagnosis: cerebral palsy, PVL, febrile seizures (resolved!!), infantile spasms (resolved!!)

anything new? We're waiting on his new power wheelchair... started psych. testing in preparation for his moving schools next fall - we're hoping he'll be the same school at Matt (our neighbourhood elementary school), possibly holding him back in gr. 1 though.

concerns/worries: All is calm actually. We're gearing up for his next round of Botox injections in March (after his birthday/March Break) as he's starting to really tighten up. This is the longest we've ever gone between injections (it will be 10-11 mths instead of the usual 6-7) but he's been doing really well. Hoping he'll one day be BM trained - DH & I are getting rather sick (literally) and tired of changing his bum. :lol: He is finally pee trained and is doing really well so we're hoping....

anything else you want to add? Still waiting for Andrew's top teeth to fall out - he got his teeth before Matt so we figured he'd lose his first but not yet! His walking is doing so much better - now we have to "convince" him that he can do it at home. We are hoping to get new flooring on the main floor of the house (rip up the carpet and put down hardwood).

He and Matt are going to start hippotherapy again after March Break (a birthday present from Grandma & Poppa) and Andrew's counting the days.

your children: Charlie

their age: 3 at the end of Feb.

their diagnosis: NOTHING yet. :rolleyes: Moderate-severe speech delays

anything new? He flunked "Toddler Talk" this past fall - it is a provincially run program, once a week for 90 min with 8 kids, their parent/caregiver and 2 ST. And you only get to go every other quarter so we have no official ST until April again but he will be going to the Small Groups sessions instead which is 4 kids and 3/4 ST's but in a group setting. Thankfully we have a private ST - he seriously does more in an hour with her than he did during the 7 wks of Toddler talk. :rolleyes: He is using a few more words and we get the occasional 3 word sentence (where Mommy/Daddy/Matthew go?) but it's few and far between. He can't even tell someone his name which is becoming more & more apparent/obvious when out in public - you know the infamous "Hi! What's your name?" in the grocery stores, etc.

concerns/worries: He is really getting more and more frustrated. :(

anything else you want to add? :dunno: at this point. Just starting to throw up my hands. LOL Hoping that Maggie stays off this list!

your children: Courtney

their age: She'll be 2 on Saturday

their diagnosis: She was born with a cleft palate: repaired 12/04, has microcephaly (her head size is not even on the growth chart) and one of her ears did not form correctly. The main diagnosis we deal with these days is the microcephaly, but the diagnosis only means she has a small head... it means nothing as far as how it affects her... she has a significant speech delay, but we don't know if that is because she had the cleft palate or b/c of the microcephaly.

anything new? She is really doing well, she walked very late, 21 months, but she is a great walker and climber. She is delayed pretty significantly in speech... she only says "hi", but she is doing a lot of signing and is understanding what we say and that is a huge change in the past 4 to 6 months... she is also vocalizing a lot more and making a lot of sounds she never used to make. She started a preschool program with the early intervention program. She goes 2 mornings a week and loves it. She is very social and loves to be part of the action. She wants to do everything Caroline does and she adores Tatum. She is all over Tatum all the time. She hugs her and kisses her constantly. On the negative side, she is having major tantrums... very age appropriate and normal for a kid with speech delays, but still awful to witness! The good thing is that time outs in her crib seem to get her to collect herself.

concerns/worries I only really worry about her speech, but I think it will come. She is doing so well with understanding and also with her signs. I just hope she starts saying a few words in the coming months.

anything else you want to add? I am just so thankful that we are where we are with Courtney. I don't know yet what the full extent of her delays will be, but we are so far from where we were when she was born and especially where we were when she was about 5 months and her head no longer was on the growth chart (and it never will be)... but she is just doing remarkably well and is in most ways a very typical 2 year old.

your children: Norah

their age: 27 months

their diagnosis: speech delay - not sure if this is due to her 10 wk prematurity, to her grade III IVH, or the fact that she is a twin, or none of this :lol:

anything new? Norah starts speech therapy at the center next week, going once a week for 30 minutes. She'll be going independent of me, so this will be something very new for her.

concerns/worries I am not really worried about anything.

anything else you want to add? Elliott has a slight delay, but not enough to qualify. I am not worried about him, but I am hoping (and confident) that the resuls of Norah's speech therapy will rub off on him. Also, that 30 minutes that she's in it will be one-on-one time for E and I...something foreign to him :lol: , so I am sure he'll benefit from that. I plan to work on books & stuff during that time.

Since it's still January I wanted to update this. Janelle went through a huge growth spurt last week. I mean literally, we took her out Sunday night in an 18-24 month dress and size 5 shoes. Wednesday she wanted to wear the same outfit again and both were way too small! She is now in size 3 clothes(the correct size for her age even if she didn't grow into them till she was 3 1/2) she basically completely skipped 2t completely! This growth chart calculator http://pediatrics.about.com/cs/usefultools/l/bl_kids_centils.htm says she is actually in about the 22nd percentile for height now at 37 inches!!! And we got her measured at stride right and she is about a 5 1/2, which is the first time her feet have grown in like 20-22 months...and we had just had her measured at stride right right after Christmas and she was definitely a 5 then! So, all of this to say, my baby is growing! She also has gained back all the weight she lost plus some and is about 25lbs(which is still not on the charts, but it is a whole lot better than 18lbs!) according to the dog scale at the vet last night!

That is great about the growth spurt :)

Kincaid is getting new words everyday he is still really hard to understand...dh and I can get around 100 words now! This is up from 40 last week! My brother, who moved in with us at the begining of december, can understand about 20 or so.

That is actually good. Elliott has less words than that and wasn't considered delayed, and he's 27 months.

Jillian, that is great news about the growth spurt!

That is great about the growth spurt :)



That is actually good. Elliott has less words than that and wasn't considered delayed, and he's 27 months.


Yea, Kincaid's language skills are taking off, at 18 months old he still had 3 words total, and now I'd say 150 or so! He seems to be catching up really well, makes me wonder if he ever would of gotten "behind" if we would of started him on seizure medicine after his first seizure at 10 months old... The only problem we have now is he still doesn't seem to "get" what we are telling him...we have no clue if he is stubborn, defiant, or really doesn't understand us yet.