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

[sun]

Sun have you found out the sex #3 yet??? .

RachA there's no way I could wait to find out. I am too impatient. I knew with DD at 14weeks!

Yes we found out it's a boy! Thanks for asking xo
My son is soooooooo excited about a little brother

 

[sequeena]

Thomas has been awarded DLA what a weight off my shoulders! !

 

[Feathers]

Hi ladies! Might be the last time I check in for a few weeks as baby is due next week! We have our c-section a week Friday!

Awaiting the results of the MRI! Scan day was a nightmare. We went in just fine at lunch after fasting, Olivia was given her sedative and...fought it. Cue two and a half hours of screaming! She missed her scan slow and was literally in the last ten minutes before no scan that she finally dropped off to sleep. And...woke up as soon as she was placed in the scanner! Luckily she laid still and her Dad held her hand (couldn't go in there as pregnant) and they managed to get the scan done! Anyway I'm glad it's over and they said by the time we see the consultant next the report will be in!

I'm currently in the process of changing her nursery to one where they are more equipped to deal with development delays and speech issues. She was so excited when we visited and didn't want to leave so I'm hoping this will be for the best for her so she gets the best support she can on her nursery days. Portage has been going...variably. She's so up and down that the twice daily homework is sometimes such hard going! But the portage targets themselves are fantastic and she enjoys it lots. I've seen some improvements too! She can now do a form board jigsaw on her own and is beginning to match a couple of colours! Any progress is good progress! We seem to be having a little speech plateau though, she's not trying to talk as much at the minute which is a shame.

Congratulations to the other expectant Mums and Sequeena that's great news! I'll catch you all post baby #2! Fingers crossed for a smoother delivery and start this time!

 

[bumpin2012]

Sun: congrats on a boy!

Sequeena: Yay!!! (PS - whats DLA?)

Feathers: glad you got the scan done! and good luck with your section next week. Post some pics for us when you get a chance


We just got home from a VERY long afternoon at the childrens hospital. We saw a pediatrician today for a complete history and exam. While she is happy to see that there has been some progression in his development over the past few months, she still wants us to go for a complete developmental assessment, and also to be assessed by a geneticist. She had some concerns over his "overly friendly personality, lack of stranger awareness, and that his forehead is wider than his face." Which is fine, I don't mind going for the assessments, but we are moving in 7 months, and the wait list for those services is more like 9-12 months. Hoping that they will be able to squeeze us in before we move, and if they feel that G needs to be followed they can facilitate a referral to someone in Regina.

So little man missed his nap, then had to have some bloodwork done, and on our way out, the elevator got stuck and we were stuck in there for half an hour. Have I mentioned that hubby is claustrophobic? Or that my toddler was EXTREMELY cranky?

Mama needs a drink! (which I wont be having...sigh)

 

[sequeena]

Feather good luck with the MRI and c section!! Can't wait to see baby pics on facebook

Bumpin DLA is Disability Living Allowance, a disability benefit in the UK. It's so silly but now he has this I feel like he's finally been recognised as disabled. It's stupid really.

Ah what a nightmare with the lift I'm claustrophobic too. I've got better since having Thomas as you have to get in lifts more often but man I am always anxious until the door opens.

Good luck with the assessment and geneticist. Your LO is similar to mine. He is way over friendly with no stranger danger - something his OT (for his thumb, we've been referred to another OT too) pointed out could be a sensory issue. It's like he's not getting enough sensory output or satisfaction so he goes way overboard to feel things you know? Same as with his violence. T also has abnormal facial features and a large forehead. I do believe he has a genetic condition because of family history but I'm hoping for the all clear!

 

[bananabump]

Hi Sarah! I came on here today for a read and this thread was the first on the list so I've had a good read! Really happy for you that your DLA claim was accepted. I don't really know where to start with describing Leo! I'm feeling so overwhelmed by everything at the moment that being able to pop on here for support would be great. To cut a long story short he is 27 months old and was born with something called Symbrachydactyly which means the fingers on his right hand didn't develop properly and the palm of his hand aswell as his arm are shorter than his left. We weren't aware of this during pregnancy so it was a big shock and we have had a LOT of hospital appts in the last couple of years. First of all we had genetics testing which came back clear. Then he had two operations to help his hand function better. Then he was referred to the craniofacial team because he had a big head and plagiocephaly. At 10 months old he developed a skin infection called staphylococcus scalded skin which was horrific and he was in hospital for 8 days (not including the week before that we were in and out of a+e because they kept saying it was just a virus until it got to the point where he looked sunburnt all over his body and his skin was sliding off in sheets!). While he was in hospital they picked up a heart murmur so we were then referred to have his heart checked out. They found an abnormality in the way his heart was beating and said it would either correct itself or he would need an operation. Thankfully when he had his check up 9 months later his heart was absolutely fine! He's also had two febrile convulsions so had to see a paed at the childrens hospital in case it was linked to an underlying condition which they don't think it is. We had a few months where everything seemed 'normal' but we've recently found out he's got to have another operation in his hand in Jan because there's a bit of bone where there shouldn't be and it could be causing him pain! And after our two year review a couple of weeks ago with the HV, Leo has now been referred for a hearing test and developmental assesement with early intervention because he's not talking, can only say a handful of words and is showing autistic traits and signs of verbal apraxia! Ok so I may have rambled on and not cut a long story short but it feels good getting it all off my chest lol We've been on such an emotional rollercoaster in a short amount time that I feel totally drained but I know one thing for sure... I would NO WAY change my gorgeous little Leo cub. He's the best thing that's ever happened to me and if people want to stare, make nasty comments and judge him/me/my husband then I pity them and feel sorry for then.. not Leo!

I hope everyone is well. Apologies for the lack of paragraphs lol xx

 

[sequeena]

Hello Emma!! Leo is a gorgeous boy!!

Me and Emma actually met up at the end of September with a few other mums at Thomas Land. It was a great day and our boys got on so well. It was so nice to meet someone who is going through similar (Thomas had polydactyly that wasn't picked up).

I hope you get lots of support here hun I have. Are you able to go down the DLA route with Leo? x

 

[essie0828]

Feathers Good luck next week hun! Looking forward to seeing a few pics of the new addition . It's so crazy that it's time already!

Sun that's so sweet that your kiddo is excited about a little brother. I bet they will be best friends.

Sequeena Yay for DLA! I still haven't submitted Hayleys' paperwork I'm so glad to see that he's getting extra OT. It's awesome! I love how much it's helping DD and I think T will keep surprising you as he works out his sensory issues. Smart boy for taking keys to unlock the door! He will be locking you out soon Hayley opened a bedroom door at my moms today. That's a first for us

Hayleys braces are here!!! She's having to go slow at getting used to them but I am so very hopeful she will walk. They are SMO/AFO combination and they are really multi purpose. Finding shoes to fit over them is a hassle though. We've ordered Hatchbacks but they are on back order for Hayleys size Also I've read that Hatchbacks are quite heavy and clunky. I'm afraid DD isn't strong enough to move well with all that extra weight. Going to some shops later to try and find a good fit, any of you ladies have some suggestions for a good shoe to go over AFOs?

 

[essie0828]

Hi bananabump Leo is a doll!

 

[essie0828]

Hi ladies! Might be the last time I check in for a few weeks as baby is due next week! We have our c-section a week Friday!

Awaiting the results of the MRI! Scan day was a nightmare. We went in just fine at lunch after fasting, Olivia was given her sedative and...fought it. Cue two and a half hours of screaming! She missed her scan slow and was literally in the last ten minutes before no scan that she finally dropped off to sleep. And...woke up as soon as she was placed in the scanner! Luckily she laid still and her Dad held her hand (couldn't go in there as pregnant) and they managed to get the scan done! Anyway I'm glad it's over and they said by the time we see the consultant next the report will be in!

I'm currently in the process of changing her nursery to one where they are more equipped to deal with development delays and speech issues. She was so excited when we visited and didn't want to leave so I'm hoping this will be for the best for her so she gets the best support she can on her nursery days. Portage has been going...variably. She's so up and down that the twice daily homework is sometimes such hard going! But the portage targets themselves are fantastic and she enjoys it lots. I've seen some improvements too! She can now do a form board jigsaw on her own and is beginning to match a couple of colours! Any progress is good progress! We seem to be having a little speech plateau though, she's not trying to talk as much at the minute which is a shame.

Congratulations to the other expectant Mums and Sequeena that's great news! I'll catch you all post baby #2! Fingers crossed for a smoother delivery and start this time!

Sorry she had a rough time with the MRI I'm afraid DDs reaction will be similar. After getting tubes in her ears she cried hysterically for what seemed like forever. I'm almost sure she wasn't in pain(had been given pain meds), so I think that was just her reaction to the sedative. That's still months away for us though.

Yay for puzzle solving! That's great! I hope she loves her new nursery and learns tons of new things Btw Hayley will stall out with her speech at times that she is progressing in motor skills. Like now she is really concentrating on getting around and she's been quiet for a few days. Mabey your DD is just honing those fine motor and problem solving skills And oooh, oooh not to mention there will be a new squishy little man hanging out with you guys! What's the princesses take on getting a baby bro so soon?

 

[essie0828]

7 days!

 

[24/7]

Thought I would dip in here, so :wave:

Sam my 2yo is very behind with his speech although making progress now. He has been assessed by a developmental paed following a request from SALT as he showed some ASD markers, and they have discharged him for now, but sometimes I still wonder if they made the right choice...

Sun, Sam is exactly the same with Abigail and in the last six months has never willingly touched Abigail. I sense life will get much harder once she is on the move as she adores him, and although up to now he has ignored her, he wont be able to when she is following him around!

 

[RachA]

Wow such a lot goes on in here in such a short amount of time lol

 

[essie0828]

Ladies

Cold and flu season has found us DD and I have been sick for almost a week now. Blah. I spent the night in the bathroom throwing up and DD barely slept. Rough night! Cancelled therapy, fully intend to watch movies, eat chicken soup, and cuddle with the sweetest baby girl in the world.

 

[essie0828]

Wow such a lot goes on in here in such a short amount of time lol

It has been quiet.

 

[essie0828]

Thought I would dip in here, so :wave:

Sam my 2yo is very behind with his speech although making progress now. He has been assessed by a developmental paed following a request from SALT as he showed some ASD markers, and they have discharged him for now, but sometimes I still wonder if they made the right choice...

Sun, Sam is exactly the same with Abigail and in the last six months has never willingly touched Abigail. I sense life will get much harder once she is on the move as she adores him, and although up to now he has ignored her, he wont be able to when she is following him around!

Hello dear Welcome

 

[sun]

Thought I would dip in here, so :wave:

Sam my 2yo is very behind with his speech although making progress now. He has been assessed by a developmental paed following a request from SALT as he showed some ASD markers, and they have discharged him for now, but sometimes I still wonder if they made the right choice...

Sun, Sam is exactly the same with Abigail and in the last six months has never willingly touched Abigail. I sense life will get much harder once she is on the move as she adores him, and although up to now he has ignored her, he wont be able to when she is following him around!

Hello!
Yes I have had lots of issues with him and his sister, but things are better now than they have been. He doesn't like her too close (especially touching or hugs which she loves), but they actually play together almost daily for short periods. Their shared interest is running around the house pushing something and yelling 1-2-3-go! Race! We hit a tough period when she became mobile and got into his stuff (which he organizes very carefully). Then it got better for a bit. Then it got worse again when she hit a tantrum age and would get mad at him for not sharing and hit at him or yell or try and grab at what he's playing with. Or she likes to make him mad by chasing him trying to give him a hug lol. It is still like this, but they also play together which makes me so so happy!

So happy to hear Sam is making progress with the speech! We still see our dev.ped. every 9mo to check in and reassess possible ASD, but we don't have any formal diagnosis other than the initial GDD. I think for us that's good, as 50% of the time I'm not sure that he isn't just a quirky kid. I'm sure that 30 years ago he wouldn't have been flagged for anything but the initial delay. But then we have those ongoing meltdown/totally irrational behaviour days that have me rethinking everything. Hugs to you!

 

[sun]

Wow such a lot goes on in here in such a short amount of time lol

I feel the same way! If I'm gone 3 or 4 days I feel like I can't catch up at all!

 

[24/7]

Sam and bun sound virtually identical! When we have good days I feel sure he is fine, then on a bad day I worry a lot. His pre school have no real concerns at the moment though, aside from his speech, so that's positive. He is very quirky, and plays just like bun. xx

 

[bumpin2012]

welcome 24/7

Essie: hope you feel better soon... I'm the sickie in my house, and G won't cuddle! he's too darn busy

we have our initial appointment with the geneticist tomorrow... more bloodwork and I'm hoping nothing shows up. or at least if there is something, it's really minor. it's strange, but I feel very uneasy about all this testing.