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

[sequeena]

everyone says T looks like the milkybar kids. It's those glasses!

He sounds like my LO at that age. T couldn't stand alone or pull up but if you held his hands or if he held onto the sofa he could do it for small periods. Hope he starts coming along soon x

Essie how has the rest of the day been? I've been in a 'blah' mood all day. The only thing I've done really is cook.

There's a fun day on Tuesday at a local country park. It has free face painting and other things so I can't wait to take T!!

 

[essie0828]

Hi anna
DD was about the same age as your lo when I first became concerned. I had no experience with kids but still I knew she was slow hitting her milestones. Every one told me to "wait and see". Somedays I regret waiting. If you are concerned it's for good reason.

Hi sequeena! How's the T man?? Did he have fun at the fun day? Hopefully it wore him out and he let you get some sleep.

We had DDs ENT appointment this morning and they have recommended grommets/tubes. Her hearing was diminished on her right side and she has fluid built up on that side as well. Surgery is scheduled for September 18. I'm beyond anxious. I'm still unsure about it. I want so badly to help her but there's all these "what if" questions that keep popping in my head. What if it doesn't work? What if they damage her hearing. What if they open her up for worse infections. What if they work and she can walk better? Or speak better. Or God forbid something terrible. Ughh I hate trusting doctors! I absolutely HATE it.

Btw....lol. Rant aside. Who are the milky bar kids?? I gotta go Google this... I need some cuteness.

 

[annanouska]

thanks girls, I felt a bit of a fraud posting here but then its hard for others to understand how frustrating it is. I think I may get his ears checked his hearing seems ok but his ears do look funky and he can often shake his head or hold his ears.

I'm really proud today, he stood up in the bath himself! Just grabbed the side and stood it felt silly getting so excited when I saw on FB his little fried 3 weeks younger walking but its a big deal for us.

Sometimes I think there is a bigger issue and other times I thin, he's just slow/chilled/lazy. Nobody really wants to listen to my concerns so I'm going to keep a diary of anything of concern. He always has been "late" to hit milestones I find it frustrating when people with younger Los talk to you like your child is. Freak because they can't run a marathon at 10 months.

Sequeena those glasses are cool t does look really happy. Essie, I. Sure the tubes will be worth a try. It's hard to watch them go through it all tho so small eh x

 

[sequeena]

Once you google the milky bar kid you will understand

Oh no I'm sure her surgery will go fine and she'll be fine I'm amazed you got a date for the op so quick, we're still waiting for T's

Annoushka be proud! Thomas did that for the first time a week or so ago, I was amazed

The fun day was great. Really hoping for a good sleep tonight but he's not in bed yet we're going to the seaside/fair tomorrow so another busy day for us.

Some pics from today...

 

[essie0828]

Yay for your lo standing up on his own anna! It's a great feeling to see them do new things. Being aware and watching is great on your part. He's a little young still and may just surprise you Here's hoping he is one of those kiddos that just takes his time

Btw I agree. T does look like a milky bar kid! It's adorable.

I met with Hayleys First Steps service coordinator Monday. They think she is delayed across the board so GDD. Her proper evaluation is going to be scheduled soon but the consensus seems to be GDD.

 

[sequeena]

Yay for your lo standing up on his own anna! It's a great feeling to see them do new things. Being aware and watching is great on your part. He's a little young still and may just surprise you Here's hoping he is one of those kiddos that just takes his time

Btw I agree. T does look like a milky bar kid! It's adorable.

I met with Hayleys First Steps service coordinator Monday. They think she is delayed across the board so GDD. Her proper evaluation is going to be scheduled soon but the consensus seems to be GDD.

T has GDD too We will soon be starting the process of claiming DLA (a disability benefit) for him. Do you have anything like that in America?

The test they did for T was called the Ruth Griffiths test. They may do the same with Hayley. They test her in 5 different areas - speech, hand eye co-ordination etc. T ranged from 10 months old to 16 months old so quite a bit behind and overall he's 10.8 months old developmental wise (it's all very complicated I don't understand a lot of it).

 

[essie0828]

Awwww love the pics!! Is that his dad?? Because there is a resemblance He looks like he's having a blast. What a fun day! You gotta dress him like a milky bar kid for Halloween sometime. He looks just like them.

 

[sequeena]

Awwww love the pics!! Is that his dad?? Because there is a resemblance He looks like he's having a blast. What a fun day! You gotta dress him like a milky bar kid for Halloween sometime. He looks just like them.

Yeah that's my OH he's looking more and more like his dad every day!

I'm stuck between dressing him like the milkybar kid or the 11th doctor!

 

[essie0828]

I'm not sure of the name of the test but it will be a test in 5 area's just like you said. I'm thinking she is probably close developmentally to T. Mabey even a little farther behind. You know I'm not sure if there is a disability benefit for young kids over here. It would be great if there was because I have put off going back to work in order to see Hayley through this. It's putting a strain on OH to carry all the financial burden. He's really awesome about it though, he works 2 jobs and rarely complains.

Our healthcare system is pretty different. Sometimes it seems that they push surgery or other costly treatments through pretty fast. It's a little disturbing sometimes but medicine is in no way laid back over here. Aggressive treatment seems to be the norm.

 

[essie0828]

Ok Googling 11th doctor to, lol. I'm in the dark on that one as well.

 

[essie0828]

Ha! The suit and bow tie would be really cute......but I vote milky bar kid. He's got the hair, the glasses and I'm sure he will just be the cutest cowboy ever.

 

[annanouska]

He does look so happy in his pics there. I didn't realise you could get dla for things like gdd that's great will be a real help to so e families I'm sure to give the, the best Help and start

Essie your lo is very pretty too. Se looks so cute in the avatar.

Our lo has really surprised us today pulling to standing again on sofa and monkey shuffling ( sooo not cruising!) along. I'm really proud as its such a big leap he's made in 2 weeks. He's still "behind" others but I think that may be how he is

Sequeena when I had my special needs job we had a few children with gdd, I have to say in comparison ( I know we mustn't compare) seems your t is doing really well he always looks so happy I think it's easy to compare against other chi,drn but we have to remind ourselves how well our Los are doing compared to themselves a few months ago

 

[essie0828]

Anna one of our pediatricians said he never even worries about kids that aren't walking until after 15 months. You little guy has a lot of time left to learn and he is making more progress everyday. That's great!

Hayley walked up all of our stairs today with me holding her hands. That's a first for her. She couldn't pick her feet up high enough before and today she sailed up them with me helping her balance. Eeek so happy!

 

[essie0828]

Btw thank you. I need to get a pic up of her smiling. She looks so serious.

 

[sequeena]

That's awesome girls glad to know the kids are coming on

No change here but we do seem to be getting somewhere with sleep which is a relief.

 

[essie0828]

Good to hear sequeena. That not sleeping stuff is hard.

 

[essie0828]

Holy crap I just saw your signature!!!! What?! A bfp! Yay! Congrats!!!!

 

[essie0828]

You sneaky girl

 

[sequeena]

well its faint at the moment so I hope it gets darker x

 

[essie0828]

Awww, fx'd it gets darker hun