Anyone up for an update?

[Brandi]

I went to check on some of our kids and thought "HEY - we need an update."

So, could you remind us of your child's diagnosis, how they are doing, what you are currently having trouble with, and anything else you want to add.

[Brandi]

diagnosis Heather has Tuberous Sclerosis. She has had Infantile Spasms in the past. She has tumors in her skin, heart, eyes, and brain.

How are they doing? Very well. She has tested out of Early Intervention services now. She is keeping her glasses on all the time now too!

Anything you are working on? concerned about? having troubles with? She just doesn't eat well. She really likes sugar and will hold out for a long time for it! She needs to plump up a little bit. She is 23 1/2 pounds and is 2 1/2 years old!

Anything else? Well, we just found out that she will qualify for the Early Childhood Preschool that is through the public school system. She qualifies "at risk" so she probably won't be receiving any therapy there, but that's ok. It's FREE and there are lots of eyes on her watching for any problems. I've heard nothing but huge amounts of praise for this school. I went there last week and I thought it looked really nice too. The hardest part will probably be putting her on the bus in the morning. She'll only just have turned 3 years old! The bus comes to our door! I'm sure she'll love it!

[Nadine]

Diagnosis
Yumi has ADHD. He is 8 years old and in 3rd grade.
How are they doing
Mostly well. He has a little bit of a down period now, and has some trouble concentrating in class and following the teacher's instructions. He has had a VERY good period before- so much so that the new teacher (his 3rd grade teacher didn't know him before) wouldn't have known he has ADHD if she hadn't been told. We are working on how to get him back on track. We are aware of the fact that he will always have up and down periods and that we have to help him thru the bad times. But it is possible that the fact that he's missed school a lot lately thanks to a lovely virus might have thrown him out of routine. Lack of routine is poison for him.
Anything you are working on? concerned about? having troubles with?
He is not motivated at the moment. As I mentioned before we have a down time. He didn't cooperate in his swimming lesson yesterday, just fooled around in the pool. Swimming is really important and good for him - healthwise and ADHD-wise. It is very cold here (for Israeli standards) and the pool is not heated - or not a lot. So I understand it is hard to swim but ... I have no idea how to deal with it. We don't want to force him at all. If he wants to stop swimming lessons we are fine with it. The question is if we motivate him he'd want to go again. Same goes for other behavioral issues. But TG nothing major or really serious is happening.
Anything else?
He is into reading like crazy. :) And the amazing thing is that he remembers EVERYTHING he has read. He reads a large variety of things - National Geographics, adventure books (Enid Blyton for example), books on religious issues (Torah stories) and what not. I hope we can get him to read English soon.

[Jillian]

Janelle is perfect, any issues she had prior to now she has outgrown, except possibly add/adhd (she has had both diagnosises now...but I honestly think giving her a diagnosis was helpfull for their study...we'll see when she is really in school if it is an issue). She is in pre-school in the afternoons right now, and LOVES it, she will be starting kindergarten in the fall, the only issue is us deciding where to send her!


Kincaid is doing really well I think. Seizure wise we have only had 2 (both grandmal/tonic-clonic) seizures since july when we added on topamax, this is HUGE for him, though we need to do another ambulatory EEG to make sure he isn't having more abscene seizures, but we see no signs of them right now!

Verbally he is doing really well, he is at almost a 2 year old level verbally now (he will be 3 in march), he has lots of words, and tries really hard to make sentences...he is amazingly hard to understand though.

Social issues and sensory issues get worse as he gets older it seems. :(

Cognitively, it's still the same, around a 50-60% delay...nothing has changed this....

He has an IEP in March...we'll have to decide what we want to do for the next school year.

Ohh, he was officially diagnosed with autism in November. So his official diagnosises are Autism and Epilepsy.

[AmyP]

Sarah just turned 2. She has no diagnosis, although I think she has SID. I'm not pulling for a diagnosis because I feel like, other than in speech therapy, EI doing a good job addressing her issues.

She's doing really well. She's been walking since early July, and she has mostly lost the little "toddle" they do. She can't climb stairs, but that's also because the stairs in my house are dangerous (hardwood) and I haven't tried. Our next PT appointment is at a nearby library with a play area and we'll work on them then.

She's eating better, although we have a long way to go. She loves pasta! That's my little Italian! She loves my homemade spaghetti with ground beef and mushrooms in the sauce. Anything by Chef Boyardee and Spaghetti-o's are devoured. We are doing baby food or graduates for fruits and vegetables. She'll eat diced fruit with her baby cereal, but won't take it straight. Go figure. At the very least, we don't buy much baby food anymore.

Sensory problems are improving as well. She will touch finger foods now, although she won't eat them. Before she'd gag and sometimes vomit if there was a Cheerio in her hand. She doesn't terribly enjoy playing with them, but at least she'll touch them now. Her teacher brought out a bunch of different things for her to touch yesterday and she did really well. She touched curly ribbon, which used to freak her out before. They also had a jelly type thing for her to touch and she touched it but decided she didn't like it. But her just trying is a huge step.

Socially she has generally been fine, but even those skills have improved. We've been going to a playgroup since September and she's been doing great. At first she'd sit with me for a lot of the time, but now she's off and running while I'm trying to hold her still for 2 minutes to remove her coat! :lol:

Fine motor skills are getting better slowly but surely. A lot of the problem was her refusal to do things. She didn't want to put objects into a container. It still takes some pushing from her OT and I, but she can put pegs into a bowl now. We just make it clear that she's not going to get out of the activity by throwing the pegs across the room and then she cooperates.

She's still not talking at all, other then "ga" for dog. She babbles a lot, and seems to understand me, though.

Right now we're working on all of her skills and finding speech therapy. She has an appointment with a clinic at my old college on Tuesday for an evaluation. Of course, after that appointment was made, my county has finally decided to give her an evaluation. :rolleyes: The teacher says she won't talk much soon because she's still under 18 months cognitively. Maybe I have my head in the sand, but I refuse to believe that. I think she understands more than they say she does. :dunno: The evaluation through the county is February 22. Or at least our initial appointment with the speech therapist is. I'm not sure if she'll do a full evaluation or not then.

We also have a hearing test scheduled for February 22. We don't have any real concerns about her hearing, but my mother is mostly deaf (it's genetic), and started to lose her hearing at about 3. We're just keeping tabs on things to make sure everything is okay there. I'll honestly be surprised if anything shows up there.

I suppose that's things around here in a nutshell.