Hellooooo out there!!

[Jennie]

OK - it's been since November since we've had a post in here.

Are there any other moms or dads of kids with sp. needs or preemies hanging out there?

How are things??

[Mary]

We are here! :) Joe is going to OT now and hopefully will get caught up by the time he starts school. He is about 2 yrs. behind with his fine motor. Other than that, not much is happening.

How are things with you? :)

Mary

[Karri]

We're here. Last eval we had, Norah and Elliott were ahead of the game, not lacking anywhere. However, I think things have changed. Elliott is still full speed ahead, but I am concerned about Miss Norah's speech. She understands what we say/ask, but at 16 months, she isnt saying anything other than "ma" and "dada" and a bit of babble (but not much). I need to make another appt for an EI eval, but I am dragging my heels (its one of those things..you know, you know you need to, but you dont want anything to be wrong)

[Bonnie]

Still here... Courtney had her palate repair Dec. 1 and is totally healed :) Hooray!! She is probably behind in gross motor and probably will be in speech, but at 13 months, it is hard to know... we are involved with the Early intervention program, so will take it as it comes... at 13 months, she only pulls up to her knees, has no interest in standing, and says "ma ma" only, so I guess we'll see how she does in the coming months. Frankly, I am thrilled with how far she has come!

[Kate]

Cameron is now special needs. He starts preschool through the school system on Monday. He is going to go 4 days a week. He will have speech therapy two days a week and PT one day a week.

He is behind in his speech, he is at a 20month level.

He is also behind on gross motor skills and he toe walks still. And his legs turn in.

Also, the Connors evaluation puts his in the high risk category for ADHD.

[Brandi]

I guess I can post here now. Heather was diagnosed with Tuberous Sclerosis Complex (TSC) on Wednesday. She is so far right on track with everything, but that could change. It might not, so we are praying. I've already called Early Intervention and am expecting to hear back from them today or tomorrow.

[Jennie]

:hug99: to all especially those new to this area.

I guess I could have at least posted an answer to my own question... :lol:

The twins will be (gasp!) 6 in a few weeks (3 wks today?!) and are doing well.

Matt is slowly catching up. He has an official diagnosis of CP but it is really rather mild - mostly affecting his fine motor skills but I can say it does affect his gross motor skills - esp. when you see him walk or run - he is very clumsy still but does well.

He is still not night trained and that's still a ways off I feel. He is still quite quite wet in a diaper overnight but I would say he is 99% day time trained finally. Whew!! One down and 3 kids to go? :lol:

We are in the process of registering him at the local neighbourhood school for Sept 2005 in gr. 1 - not sure what's involved yet and how much assistance he'll need but they have noted in his file to keep a close eye on him at recess esp early in the school year to see how he does and on stairs when the bell rings going in & out as he is still quite slow on the stairs (I think this is mainly a visual issue).

Andrew is coming along nicely - he is still working on his walking with his walker but funny enough, he doesn't want to use it at home - he still prefers to crawl around. But he is pulling himself up on anything and everything so I know if he had shoes on and his walker handy, he'd be walking more so I'm trying to sort out how to accomplish this task in the home.

He's doing great at school this year - loves his teacher and is progressing with his letters and numbers, pencil skills, etc. He will stay at the treatment centre school next year and will hopefully follow Matt to the neighbourhood school in Sept 2006.

Toileting is still a dream at this point - he has pooped in the toilet in the evenings for us a few times but I don't think he feels wetness so we'll keep working on this one.

Healthwise, both boys have had an excellent year - few colds and such (knock on wood!). Andrew picked up some skin condition/ailment in Jamaica which will take 6-12 mths to go away - ick.

So I guess that's what's going on here.

[Jillsers]

hi! :wavey: Sorry to see so many people here, but glad that I'm not alone! :)

I am pretty secure in Kayleigh's autism diagnosis at this point. She's in school 4 days a week and receives both speech and occupational therapy. They want to have her evaluated for physical therapy but I haven't heard anything about a time frame or anything. Her eye contact is much improved, though her "stimming" is increasing (she hops like a bunny, mainly, and flaps whatever's in her hands, among other things).

We're still dealing with major sensory issues. Her food choices are extremely limited, though school and therapy have brought her to the point where she'll actually "kiss" new foods, rather than screaming hysterically and pushing it away. We can't touch her hair, other than to brush it quickly or push it out of her eyes. She's very orally-fixated, so everything (except food!) still goes in her mouth.

Kayleigh's speech is coming verrry slowly. She adds about 1 word every few weeks, but drops one for every new one she learns. She's quite verbal, actually, but it's mostly gibberish. Her receptive language has dramatically improved, however, so I'm hoping that the expressive language will start to speed up. She's a happy, happy girl, though, and I'm hoping that EI can pull her through the darkest of these days.

Our baby Lincoln is 2½ months old. At our big u/s, we discovered that he had a multicystic displastic right kidney and a hydronephrotic left kidney. The right one was non-functioning and the left one was probably blocked and could possibly stop functioning as well. They gave us very low odds for his survival, but he's a tough little guy. After multiple u/s, steroid shots, bedrest, and lots of worry, he was born at 35w (and he weighed 8lbs6oz!) with the left kidney still functioning. It may still be blocked, though.

We've had some rough times with him in his 2½ months. His electrolyte levels were out of whack, which could have damaged the 1 functioning kidney or given him heart failure. He's a bit more stable now (except that he had a bad, bad reaction to his 2month immunizations which landed us in the ER). We've been through multiple blood draws and tests and there's really no end in sight. But at least he's alive!:nod:

I just have to keep telling myself that "everything happens for a reason" and "what doesn't kill us makes us stronger." It helps on some days, but not on others! I never thought I'd be dealing with both a developmental disabilty and a physical condition between my 2 kids (and Lincoln could always develop autism too, though we pray that he doesn't), but I suppose you have to take what you get, right?

[stass]

I guess I belong here too. :wavey:
Saxon had a speech delay so he was evaluated last fall. He was given a Early Childhod Developmentally Delay diagnosis. He has words but lacks some social communication skills. Like when friends come over instead of saying "hi lets play" he says "Big Dinosaur, Big Rocketship" The people who evaluated him said he shows signs of the high functioning Autism Spectrum but we decided not to pursue any more testing at this time. He is already eligible for services and why spend time and money for another label.
He is enrolled in the public preschool for ECDD kids that he started Feb. 1. He likes it a lot.He goes 4 days for 3 hours and the best part is it's free! He improves everyday and I hope that this extra help early will bring him up to speed and he can go to Kindergarten and be on par with his peers there. He is very advanced in his knowledge of letters and can identify many words when he sees them.

It's nice to have others to chat with about this stuff. :)

[Eleanor]

Both my girls are doing so well, they can hardly be considered preemies! Isabelle is almost 3 1/2 and she's at 95th percentile for height, and 60th for weight. Rebecca is 60th for weight and 50th for height (just turned 1). We're having some hearing issues with Isabelle, but I think it's related to fluid in her ears. Her speech is great. Rebecca is a little slow to hit gross motor milestones, but she's doing great otherwise. (I think it may be due in part to a midline hernia which is FINALLY closing).

[Janice]

I just subscribed here. I have a 25-weeker, Spencer Martin. He is almost 8 months old (4 1/2 months corrected age). He's doing very well, except for very bad reflux. He's on 2 different medications for that. He had an amazingly smooth NICU run, considering how tiny he was when he was born (1lb. 5oz, 13 inches long). No eye or ear problems, no heart problems, no brain bleeds, no NEC. He's truly a miracle!!

We just had our first follow-up eval the other day and so far he's almost right on target (behind by about a month or so in a few gross motor skills). We are truly blessed and I thank God every day for being so good to us. He has a 30% chance of developing cerebral palsy by virtue of his extremely low birthweight. We just keep monitoring him and working with him and keeping our fingers crossed he'll continue to do well.

[Brandi]

Hi Janice! I am just about to go visit a friend who has a son named Spencer Martin. I love that name! It's good to hear that your Spencer is doing so well! Prayers that he falls in the 70% that does just fine and does not develop CP. Welcome! This area doesn't get a ton of traffic, but I guess that's a good thing too - the less special needs kids, the better I suppose!

[Kate]

Welcome Janice!! Congrats on Spencer!! Sounds like he truely is a miracle!! I hope that he continues to do wonderful!! I look forward to getting to know you better!!

Kate

[Mary]

Welcome Janice! I hope that Spencer continues to do well. It sounds like things are going great right now!

Mary

[Nadine]

I am here too I guess...