Developmental disorders/learning disabilities/genetic syndromes & more support group

www.artzooka.com

Does anyone watch this show?? The stuff this guy makes is great. Check out the artzookas tab, I especially like the magnetic town. Great crafts for the kiddos.
 
I work in a cardiac surgery icu as an RN. it's been my favorite nursing job, and I've been here for 3 years now.


got a picture texted to me this evening - some little monkey is figuring out how to get into a stand by himself. @_@....
 
All I am thinking is "crap" Hes soooo fast now with crawling, I can only imagine how fast he is going to get when he can RUN. Sigh.


Its a good thing I have a new one coming...lol... My baby is growing up
 
Hi ladies!

Sorry about my on and off-ness. SPD/PGP has kicked in big time so I dont get as much time online as I'd like anymore lol! Hope all is well with you all!

Olivia had her consultant appointment again today. Signed the permission slips for her MRI scan and she's being referred to a geneticist. We've been told it is a long waiting list as one only visits up here twice a year! However her Consultant thinks it is worth doing so I guess we wait and see. We don't have any family genetic conditions that I know about which is comforting at least!
 
Poor you Feathers :(

Well done on getting the referral for MRI/geneticist. Can't believe it can only happen twice a year, that's ridiculous!

We took Thomas to a new playgroup today and we both enjoyed. We'll be going back :D

I rang T's speech therapist today as I've not heard anything for a while. He's on a group list but they don't know when the group will start :dohh:

T is breaking his heart when Sean is leaving for work :( Actually he's breaking his heart when any of us leave. I don't know what to do about it :(
 
Feathers: we're also having to have Esther's genetics looked at. At the moment we are having to provide a blood sample from each of us as Esther's blood showed an abnormality. Tbh not sure what happens once the results are in.
Can't believe that your place can only see you infrequently.
 
bumpin - Awesome Gabriel! They do grow up so fast!

Feathers and Rach - We did the regular genetic testing with B, but then they recommended the more invasive testing and we declined.

essie - B loves Artzooka lol! And so do I lol. I like the guy that hosts it here as well (there's a different host for every country). Ours is in French.
 
might be a dense question: what are you hoping to learn from genetics testing? Will it help with treatment? Or determine likelihood of issues with future children?
 
Bumpin he will run your feet off when he figures out the running thing. :haha: You are gonna be one tired pregnant lady. Oh well, full hands, full heart ;)

Speaking of genetic testing....we were offered it as well but the neurologist said that it wasn't important unless DD was regressing? And she then proceeded to ask some uncomfortable questions about if DH and I were related. God, all I could think was we are from the same small town but his family moved there when his dad was born. They were from another state. My ancestors had settled the land, literally. I told her this and told her that we had some limited genetic testing done on 2 babies I had lost before DD and they were normal. After that she pretty much took the genetic testing out of the equation and focused on CP. But honestly I still wonder...... history of miscarriage, DD with CP...? Makes me worry about trying for #2, medically speaking, but I know I'll love and care for my child/children (if I'm lucky) no matter what.
 
Feathers I think we will be doing an MRI when DD is a little older as well. Hopefully you will get some answers that will help your LO. :hugs: It's a lot to deal with especially when you're uncomfortably pregnant. :haha:

Sequeena :happydance: for the new playgroup. It's great that both of you had fun :) Poor little T. That sounds like super separation anxiety. DD will do this especially if she is tired or sick. Is he feeling well? How long does it take to calm him after someone leaves? I wish I had a good solution for you. With DD it's distraction after distraction until she tuckers out but she's easy compared to her little cousin. He cries and screams and searches for his dad for hours :(

RachA I hope the testing comes out well :hugs: Esther is making progress with her therapies and I believe that is a great indicator that her genetic issues will not be so severe. It's all so scary though. Getting a diagnosis of any kind really hits hard :hugs:

Sun how invasive were the tests?? I have no clue how they do them. How's B doing? Ha! I didn't know each country had a different Artzooka host. That's neat! It would be fun to watch it in french and see how much I could remember from high school :haha: I took it as a elective language but can't remember a fraction of it as no one around here speaks it and I stopped practicing long ago.
 
Well DD took a couple steps on her own today. She had a checkup today and was trying so hard to walk over to a hyperactive little 3yro blonde boy. :cloud9: He was ALL OVER THE PLACE. His poor mum was trying to tend a tiny infant and chase after him :haha: She was a bit frazzled. He was delayed in speech and his mom said he had no clear words yet. He made sounds so similar to DD. It was kinda odd and neat to watch them together. She pulled out all the stops to try and communicate with him. She did her "come here" gesture holding out her hand, palm up and flexing her fingers back and forth. Then she tried babbling some and in the mean time he was doing acrobatics and putting on a great show for DD. She loved it! Then she grabbed my finger, pulled herself up to a stand and proceeds to pull me to him. She was barely using me for balance so I snuck my finger out of her hand and before she realized that she took a few wobbly steps on her own :cloud9: It was a good day. DH got to be there to :)
 
And I have to gush some more about her new potty skills :haha: She's going on her potty at different times of the day now. :cloud9: We were only consistently getting her to pee on the potty first thing in the morning, now she goes after naps to :happydance: She's learning to hold it when she first wakes up. Yay!
 
Yay-really good progress Essie. :)


Re the genetic testing: I'm not actually sure what we are hoping to get out of it if I'm honest. My OH is very much the type of guy who wants answers if possible so he wanted to go ahead with the testing. I wasn't too bothered. I guess at the end of the day if neither of us show up the same abnormality that Esther has then it means this abnormality is what's causing her delay.
 
Essie: Wow that sounds like some amazing progress! That interaction between her and the little boy sounds like it was super cute :)

Sequeena: Poor little guy. I have heard that separation anxiety can come and go with varying intensities, so maybe its just something to wait out?
 
RachA the whole genetic testing thing confuses me some. I know they look for some syndromes and things in genetics but honestly its pretty much like another language to me. I have some limited understanding but nothing helpful :(

In DDs' case it probably won't help us find out anything more than we know now but I may follow up with it later.
 
Hey girls just a flying visit for me. T is spending the day with my aunt and cousin's but I'm pretty busy food shopping, cleaning, sorting stuff etc.

Well done Hayley! She's doing so well Essie, seriously. T is nowhere near potty training!

As for T's separation anxiety it's not so bad that he screams all night but he will cry for a good 10-20 minutes after Sean leaves for work. At playgroup I was only gone for 5 minutes at most and when I came back he was just calming down.

He went this morning with my aunt and cousin's and didn't look back haha! He blew me a kiss when I was waving to him :cloud9:
 
Thanks sequeena! Hayley is no where near trained either. It's more of me making a mad dash to the potty with her after naps and first thing in the morning. But if I get her there she will pee pee and then we celebrate :haha: I've never potty trained a kid before, only puppies :rofl:

Aww what a sweet little man blowing kisses. That's adorable! God what will we do when we're sending them off to school :nope: Hope you have a great day and get some relax time done along with your chores. ;)
 
Sequeena Hayley will cry that long for her dad sometimes :( Usually if she is very tired though. Most of the time I can get her calmed down after about 5 min. If she's really upset the little thing will cry herself to sleep on my shoulder :nope: It breaks DHs' heart so bad he tries sneaking off whenever possible.

She had a finger stick done yesterday and he got so antsy while she was crying. :haha: He scooped her up and took off to the play area before the nurse could even give her a sticker :rofl: He said he couldn't help he had to get her outta there. Men!?
 
RachA the whole genetic testing thing confuses me some. I know they look for some syndromes and things in genetics but honestly its pretty much like another language to me. I have some limited understanding but nothing helpful :(

In DDs' case it probably won't help us find out anything more than we know now but I may follow up with it later.

It kind if is a bit something and nothing. I don't think that it's going to give us answers. Thankfully Esther is really good at blood tests as she's had quite a few.
 

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