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

[annanouska]

I got him some "cruisers" today, not that inthinkntheynwill help his feet but I'm fd up of the cuts and muck when at the park! He actually kept them on and can still crawl and stand. Tbh I think it is what you say he needs to learn where to put his feet...he can do it but doesn't always. It looks far worse in shoes tho seems to make it stand out!

Essie I think it's going to be a wait and see journey and watching her blossom along the way. There's not much age difference between our Los and she is dpi g so very well.

Sorry to bring this up but I read on the news here today about a family in Canada who got a letter being abusive over their autistic child and he should live in the wild etc couldn't actually believe that!! Drunken weirdos can go live in the wild for me

Hope nobody minds me popping in here? I feel a bit bad as lo is quite lucky compared to the other children in that I'm sure it's not a major problem but still its nice to talk with people who understand the delay frustrations xxx

 

[essie0828]

Anna I'm sure no one minds

 

[bumpin2012]

Anna, I feel a bit the same. I am hopeful that he will continue to progress, and that his delays wont impact him later on in life. I do feel though, that you ladies can understand the worry and frustration that comes along with waiting.

We had some of G's "friends" )really, my mommy friends with boys close in age to G) and he is officially the only non walker of the group. The youngest of the group, who just had his birthday has been walking for a few weeks now... sigh. I know having him walk wont magically change anything, but it just saddens me to see.

 

[sequeena]

Hi ladies, sorry I'm not replying, I'm exhausted at the moment!

Anyone is welcome here

 

[sequeena]

I just realised I don't know where Thomas' glasses are... annoying.

 

[Feathers]

Any delay problems are worrying though aren't they.

We had a drop in visit from the woman overseeing Olivia's multidisciplinary care today along with a doctor to drop us off reports and her play plan that has been written for her at nursery. It's basically a play IEP with small targets and what she needs to do to achieve them to help her in her areas of weakness.
Signed the paperwork today to refer her to Inclusion properly for nursery support and they were talking about various training and courses they are going to run for her key workers as well as her one to one support.
Apparently portage is a 3 month wait which will put me right on top of baby #2's birth XD typical. At least I'll be at home LOL.
Anyway its all very supportive and positive and they were talking about baby #2 and how hopefully with a planned c-section we will avoid the problems Olivia has which her consultants strongly suspect were caused by the traumatic birth we had. Have to admit I'm nervous just because...well I love her to bits and I wouldn't change her for the world, but I don't want to go through it a second time really.

Enough waffle. Hello to the new ladies in here! We're busy preparing for her second birthday! Cannot believe my little baby is going to be 2! She's learnt two new words Shoe and juice. (although she doesnt say them properly yet but still...progress!)

 

[bumpin2012]

Progress is wonderful!

Gabriel continues to confuse me. He can't look at us when we say his name, or look at the appropriate person when we say "where is mama/dada" but he can point to his nose if you ask him to. not 100% consistently, but consistent enough.

Sequeena, did you find T's glasses?

 

[Jencocoa]

Hugs.

My son was/is delayed and he has been getting early intervention services since just past 1 year old. They have helped a ton! We also made dietary and lifestyle changes which has helped. He was diagnosed with Pervasive Developmental Disorder at 2 and we were told he meets the criteria for mild to moderate autism. He is mostly non-verbal. He has caught up physically and tested as no cognitive delays a year later. We are still working on some motor skills, social skills, and of course language.

 

[sequeena]

Hey everyone, seems we're all moving forward slowly. Progress is a great thing!

Bumpin yes I found them they were on one of T's bedroom shelves

So things are good here too. T still says uh oh quite a lot and his understanding is really coming on. He can follow more commands which is great and he's babbling a lot. Hoping for an explosion in speech soon.

He spent today with my aunt and cousin's. They took him to a soft play and he had lots of fun!

 

[essie0828]

Hi ladies

Feathers that's wonderful progress Olivia is making. You will be a very busy lady in 3 months. Lol, portage may become a welcome break. I understand what you mean about not going through it a second time Im really nervous about even committing to ttc #2 because of Hayleys birth. My mom tried to watch the video of my c-section again and couldn't. At the time I didn't realize it was that bad. I was in shock or something. But I suppose there is a reason I haven't watched it since a week or so after her birth

Anna how's your LO doing in the cruisers?? My LO took a little while to get used to hers. It was like the weight of them threw her off. She would drag the toe a lot. After a few days of lots of activity in them she was able to bring them up way higher. Still did the toe walking every step though I was SO hoping high tops would stop that.

Bumpin how's your LO doing? The nose pointing is a good thing. Hayley has only done that for few weeks now.

Jencocoa My SIL is a Hoosier! Crimson and cream through and through and she married a true blue Wildcat. Let me tell you that house is divided during basketball season My DD is starting First Steps next week. Is that the same early intervention program your LO uses?

sequeena. Loving the pics of Thomas He's adorable! I show Hayley his pics and she smiles. I'm working on getting her to say boy but so far she just smiles at him and occasionally tries to lick the phone I think the more babbling the better. Hayleys doc actually said that today! He will probably pick up some new words soon.

So things are going warp speed for us. Hayley had her checkup today with her regular pediatricians and I had to inform them of her CP diagnosis. They were really great about it. Let me ask some questions and were very candid. It was nice but made me sad some. Her chances of becoming ******* are high. Depending on the severity of that she may have lots of muscle pain and problems with tight ligaments. I just don't want her to hurt We got her referred to the plastic surgeon for a helmet, her doc thinks her plagio case is mild but thinks she may still need a little time in a helmet.
First Steps evaluation next week. Tubes in on the 18th and then we start all over with the ophthalmologist, and the orthopaedic specialist. Whew. Im tired just from typing it.

 

[essie0828]

Wow I have no idea why it blocked that word. S*p*astic Cerebral palsy is a dirty word??

 

[bumpin2012]

Wow, Essie, you have been busy! that all sounds so overwhelming. ( and I don't get how sp@stic is a bad word either, bnb is weird somedays)

We are ttcing #2, despite Gabriel's issues. I know they are not the extent that Haley has, but I figure being home with a newborn won't be half as busy as we are now, I work full time, and I also take in my friends 18 month old on my days off ( we are both shift workers on opposite schedules, she takes Gabriel when I'm working.) newborns are tiring, but nothing like 2 tornado toddlers... Lol. the idea of 2 scares me, wondering if the second will have constant issues like Gabriel had (not just developmental). I've always felt 2 was the magic number, shoo we are jumping in and hoping for the best.

 

[essie0828]

Awesome news bumpin! I think almost everyone here is ttc or pregnant Well ready or not I'm in the tww

 

[bumpin2012]

I don't think anyone can be truly ready for another baby, so here we go. Af due in 6 days...

 

[essie0828]

Lol. Bumpin, that's very true. Good luck dear.

 

[sequeena]

We're all nuts

 

[essie0828]

We're all nuts

Absolutely!

 

[annanouska]

I'm not ttc jus yet but only as dh isn't on board yet!!!

I wrote a huge post the other day and iPad ate it

Bumpin, Marcus can't point to his nose or actually anything u ask hi to and wouldn't point to mum or dad etc either

There is a 3 month wait for physion but they got a cancellation today so he's going to be assessed atleast. He's good at standing now but his left foot is very wonky. Will see what happens later

 

[sequeena]

Hope they see him quickly annanoushka. For what it's worth Thomas has only just learned where his belly button is. He doesn't know any other body parts.

I am getting frustrated with Thomas' lack of sleep again. He didn't sleep until gone midnight then woke crying at 5am. I am just so exhausted he doesn't seem to notice that he's not getting enough sleep!!

 

[essie0828]

Aww poor T and poor mum DD's sleep is just now getting better. It's hard when they won't sleep. Do you have any idea what is waking him? Think mabey he's having dreams or nightmares waking him? Or mabey something uncomfortable? Hope you find out why he's waking and can get him to sleep more.

Anna its good marcus is standing better. My kiddo is just starting to point as well. She can point to some things you ask her to but not reliably yet. He may pick it up soon. I got to speak with DDs orthopaedic specialist yesterday and he said that they don't like to do braces or supports for the really young kiddos because they need to build their strength and balance without help. Will he walk if you support him? Will he try to do stairs with help? Going up stairs helped DD a lot with building strength and stamina. She still needs me for balance but she bares all her weight. Hope your DH gets on board with the ttc thing. It's my DH that's ready and me that's saying wait But honestly DD was a nightmare as a newborn. God love her it was probably from the CP but she never settled on her own. Wouldn't sleep and if she did it was on me or dh for 3 months! I thought sure she would break me but we made it through baby bootcamp I'm just afraid of round 2
,
Bumpin your closing in on testing time. eeek exciting!