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

[annanouska]

But no stressing over things as u have jellybean 2 to look after too!

 

[sequeena]

Got a this morning so maybe it was an evap. Still no af though.

 

[essie0828]

I had an evil evap on a blue dye test a couple months ago. I hate those. I hope AF stays away and it's just too early yet.

 

[RachA]

Hiya

Just wanted to come and add my story.

Esther is nearly 4 and we were told last Nov that she has a developmental delay. They haven't said its GDD but she is behind in all areas.
She was referred after her 2 year check as she wasn't really responding to the HV.

Everything about her pregnancy and birth were normal so there is nothing there (my mum did wonder if there was an issue with the birth as she remembers thinking it took a long time for Esther to cry but the hospital notes were looked into and they say it was a normal time).
I can't actually remember her ages for sitting/crawling/pulling up to stand but she was late walking-18months-and she took months to walk without looking like she was going to fall over!! Her sitting etc weren't too behind though.
She said her first word around 18/20 months but then stopped. She babbled a lot so I didn't think there was too much of a problem (my son didn't babble at all and yet at 2 walking talking well above his age).

Since 2 she has seen the SALT several times (currently waiting on her next block if sessions).
She is under review at our Child Development Centre-her first appointment out her at 18months behind in speech (the others areas are behind but not as much). He second appointment has put her at somewhere between 12 & 18 months behind so she us improving slowly. She has her next appointment in Nov and this is crucial for us as it will help decide on what school we send her to. They are saying she can go to a 'normal' school but done in our area are much better set up for special needs.
She has also just come to the top of the Portage list - in dact the portage worker is coming today for an initial meet

Esther started Playschool last Sept. she really enjoys it there. She has a SENco worker there who is amazing. She engages well with the adults there but not so well with the children. However in the last 1/2 term she really started engaging with other children

She had a blood test back in May to see if there was anything genetic and her test has shown up something but they can't say if its affecting her until OH and I have been tested.

For me personally I think that her delay can be partially attributed to a lack of food. From when she weaned she was a nighare eater. She didn't like anything apart from the Hipp jars of food but I wasn't happy her getting so dependant on them so we cut them out expecting that after a few weeks she'd start eating my food. She didn't and I'd say that at least 12 months went by when she rarely ate more than breakfast.
From being 10 months to 2 & 4 months she had a few seizures - they definitely were febrile and were looked into but they couldn't find anything wrong. I think that they were induced by the lack of food as they stopped once her diet picked up.


So currently she's saying lots and lots of words but doesn't say many sentences.
Her understanding is generally really good.
She can't ride a bike/trike or scooter.
She is really good at the little puzzles were you put the pieces in the wooden board (peg puzzles).

 

[essie0828]

RachA and welcome Hope the meeting with the portage worker goes well today. By the way, what is portage?? Lol. I've seen this term a few times. Is it a special education program? My DD was hard to feed as well. For a while every bite was a struggle, she was in the 30th percentile for weight and that was with me chasing her with food all day. Now she eats better but doesn't feed herself well. I think that's partially my fault from making her eat. I had a doctor tell me kids won't starve themselves and not to worry so much about her eating. I said "You don't know Hayley." Finally she's in the 50th percentile for weight but she still eats like a bird.

Sequeena any news from AF or a BFP yet?? I got my fingers crossed for you dear. Hows
T doing?

Hayley is back to waking up a lot. And she's waking up very upset . Just crying and crying until me or OH picks her up and rocks her back to sleep. I can't figure it out. She's still taking antibiotics and ibuprofen for the ear infection so I was hoping pain wasn't the issue. I miss seeing my girl wake up smiling

 

[essie0828]

Anna hows your little man doing??

 

[RachA]

Hi Essie and thanks

Portage meeting went well. Not really sure how to describe Portage. I'm assuming its done the same from county to county but not sure. For us it's basically going to be this lady coming to our house once every 2 weeks. She will play with Esther and then leave little games with us to play with her until the next appointment. All the games are to encourage her to put words with items or put words together to make sentences. Most of it is pretty basic stuff to be honest but for us any help is gratefully received.

Just looked to see where Esther is on the centile lines and she's just under the 9th! When she was born she was on the 75th but quickly went down to 25th. Then when she wouldn't wean properly she went down so she was hovering between the 9th and 25th. Being under the 9th is the lowest she ever been but she goes actually eat now so I'm assuming she is just burning all the calories off. Both my children are skinny-my son has just turned 6 and us the height of an 8yo so although he's heavier than he should be he is actually very skinny. The both take after my OH who us skinny (I'm not!) and I'm not particularly worried about their weight as long as they are eating!

 

[sequeena]

Hi Rach good to see you here, hope we can all support each other

T is fine thanks! Being naughty tonight and won't sleep!! Thought I had a proper earlier but the dye ran!

 

[essie0828]

Hmmm. And still no AF? Mabey you ovulated later than you thought. Hope you get a good dark bfp soon.

RachA my OH is skinny as well. Most of his family is tall and thin. I'm tall and not thin at all So DD will be on the skinny side to. It's easier now that she can pick things up and feed herself. She seems to be keeping steady with her weight and eats healthy.

Ahh portage sounds like what we have here in our early intervention programs. I will be a bit more familiar with it as DD gets more involved in First Steps. That's our early intervention program.

 

[sequeena]

T is another skinny minny. On my dad's side they're thin and over 6ft

 

[essie0828]

My family are giants lol. I have some great aunts that are closer to 7' than 6' and some male cousins that are 7'. Some of my female cousins are 6'5" and my brother is 6' 5". I'm a shorty in the family at a mere 6' DH went to a family reunion with me and said he's never seen so many huge people in one spot. He's the same height as me but we are still dwarfed by most of my extended family.

 

[sequeena]

I'm 5'8" and OH is 5'9" so we're titchy compared to your family! My dad is about 6'4"

 

[essie0828]

Lol. Honestly when were all in one place people stare. It's kinda funny My great aunt who is in her 60's is about 6'7 and very light skinned. My mom said she was Gorgeous when she was young and the attention she got was horrible. Like causing a scene everywhere she went. Mom said when she was in hospital in labor with my brother, that she had to walk for hours to help her labor progress. Keep in mind this is almost 40 yrs ago Well she was walking with my great aunt to the cafeteria. Mom said it was really loud in there but within a minute of them walking in the entire place was quiet. Mom said that my great aunt dropped to her knees and said something snarky about if a tall woman makes you that uncomfortable then here! And she shuffled through the entire cafeteria line on her knees! My mom said between the contractions and the embarrassment she was sure she would die.

Ok totally off topic but that's one of my childhood favorite stories about my great aunt, bless her. She's a character. Btw I was reminded by her with a firm grasp that it's rude to ask a lady her age, her weight, or her height. I almost peed my pants. I was about 10

 

[Feathers]

Hi ladies sorry to vanish off, I've been a bit under the weather myself and getting bigger now so been taking it easy

Hope all is young well with your LOs! I'm enjoying the slight break from all the appointments we've had of late! Next major appointment for her is early September which is a nice break from going to clinics and assessments! Because LO is off nursery right now she gets a little break too, but it all kicks back in come September!

We're working on makaton signing with her still that has been emailed to us, and she seems to be picking up a few more words as well which is fantastic! However being off work we've seen lots of her friends and it's a little disheartening to hear them chattering away in ways that she can't. Not that anyone judges her for it but still...everyone wants their child to be normal don't they XD And it's far more apparent when we are with her peers that she has some problems.

Good luck to you with your hopeful BFP Sequeena! And welcome to the new Mums who popped in here also. RachA- you sound as though you are in a similar place to us with what's going on for LO! We're waiting on portage but have been told it wouldn't be long. Anyway enough waffle, just thought I'd pop in and update

 

[RachA]

Wow all your family are tall Essie.
I'm only 5ft 1! And OH is 6ft 1-gives me a good excuse to wear heels! Our eldest just turned 6 and he's already up to my boob level so he's definitely going to be tall. Esther is short though but don't think she'll be as short as me.


Talking about appointments-it is nice having a bit of a break from appointments during the holidays. I do still have a few to attend-mainly ones at our Child Development Centre where a play specialist is working with Esther. They have been really good at working on her concentration.

 

[essie0828]

RachA my sis in law is 5'1" I love seeing her and my brother dance, their height difference becomes very apparent She's a 4th grade teacher and I like hearing her talk about trying to be stern with kids bigger than her

Hi feathers Congrats on the blue bundle! One of each! You lucky girl And yay for new words! Go Olivia! I got to Google this makaton signing. DD is starting to use gestures more and this may be a way to get her to express more words. Thanks! Hope you feel better

Sequeena any BFP news?????

Hayleys neurology appointment is Monday. I'm a nervous wreck about it. I go from being wound up about it and wanting answers to just wanting to run and hide from it I think they will want to send her to get a MRI. She will have to be sedated for that and I don't like it I hope I don't break down into a blubbering mess in there. I hate crying in front of doctors but when it comes to my baby girl I just can't hold it in.

 

[sequeena]

Great news Feathers

And I agree, yes it is lovely to have a break from appointments! I for sure know he needs to go back to ENT in November and he'll see his paediatrician around then but I'm not sure when his op will be or when he'll get his new hv, portage etc.

Essie it's hard. She will be ok though. It'll be over before you know it.

Thomas said mummy!! I am so happy!

 

[annanouska]

bet you are so chuffed with being called mummy

Appointments are fun here I still have weekly physio from my broken pelvis and nerve damage in labour with nobody to watch lo so its just a nightmare he gets so agitated. Then add n his appointments too

Hope the neurology appointment goes ok xxx

 

[RachA]

Essie-hope the appointment goes ok.
Re the MRI-yes you'll cry but it is over fairly quickly and lo won't remember anything about it.
Esther had one last year and it was awful-for me that it. I was with her when the put the mask over her mouth and she looked so confused, then she just went to sleep and I burst out crying!! The lady said that pretty much every parent cries.
After that the worst thing was that it took ages for her to decide to wee (they like them to wee before they let them out of hospital). We were waiting for hours!!

 

[Feathers]

Did she go fully to sleep for the MRI or just sedated? Her consultant told us she would just be sedated? I suppose...it needs to be done though.