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

[RachA]

Essie-moan away
It sounds like she's coming down with something-hope she gets over it quickly if she does.

Sequeena-hope it all goes well for your little man tomorrow

Esther starts her next block of speech therapy on Thurs. part of me is glad it's only for 6 weeks as I seem to be running here, there and everywhere anyway!!

 

[bumpin2012]

Aw, Hope everything goes well for the little man tomorrow

Hugs to mama!

 

[essie0828]

Itching for news about Ts surgery. Hope all is well sequeena.

 

[sequeena]

We were on the ward by 7am and T went for his operation at 10am. I went with him to theatre and held him. They put local anaesthetic cream on his hand then seconds later inserted a cannila and he felt everything. It was horrific he screamed so much I could barely hold onto him. Theyngave him general soon after and he was gone within seconds.

In his op they were meant to do 1. Muscle transfer 2. Stabalise his thumb 3. Lengthen the distance between his hand and thumb that bit of skin between your thumb and index finger. They didn't need to do the muscle transfer as his grip has got better so the op took 2 hours.

There is a risk he'll out grow what they've done and he'll need another operation but I hope not.

He's had 2 full beakers of squash and a slice of jam on toast. He's peed and walked.

He's asleepp now after medicine.

 

[essie0828]

Awww bless him. So glad he got to skip the muscle transfer. The general anesthetic procedure sounds horrid . God I really hope I don't have to do that with DD, but I probably will sometime in the future. Sigh. It's been a hard day mama, try and get some rest

 

[Peanut78]

That's brilliant they didn't have to do the muscle transfer!

It's horrible watching them go under - I cried my eyes out with both of mine For my two they used gas to put them under and then inserted the canulla - I'm sorry T had to experience that pain

Will T be spending the night or are you headed home later?

 

[moggymay]

Same here with the canula Peanut....Mogster was distraught when they tried to remove the plaster covering the local anaesthetic cream so after three of us holding him down to do the canula they used gas and did the canula once he was out....ask him now and despite being 5 at the time all he remembers of the experience is that they had a room full of toys and little dvd players for all the children T will soon forget what happened, you will take longer to file it away...I know I did. Saying that to see the change once they have had their op is fab. What happens next for T...is he in a cast/sling?

 

[sequeena]

He definitely remembered because when they took the cannula out he went ballistic screamed, kicked and almost caught a nurse in the genitals. My poor boy. We will be here for a few more hours for them to keep an eye on him then we're going home Thomas is still asleep as is Sean.


The occupational therapist has just been round to tell me what to do. We're back in 4 weeks to get his cast off.

 

[essie0828]

Poor little man. Cannulas hurt! I hate them. I understand why he would want to kick someone in the junk A cast for 4 weeks? Poor you and Sean someone will be getting whacked with that. . I know DD would use it as a weapon

 

[sequeena]

We still co sleep too!!

My boy

 

[moggymay]

Give it a few months and he will forget and his thumb will be strong and cast free Hope you are managing some rest...

 

[essie0828]

Awww goodness...That pic makes me wanna cuddle him so much. Poor little guy. And all that tape! I hope that comes off easier than it looks like it will Oh my! We still co-sleep to so I understand. That's gonna be a dangerous little bed fellow

 

[sequeena]

Thanks both he will need further surgery but when he's older

There's so much tape because toddler arms are cylindrical and it would fall off without the tape. The tape dissolves so we need to cling film his arm when he's in the shower.

 

[sequeena]

Also he has been diagnosed with hyper mobility syndrome

 

[essie0828]

Also he has been diagnosed with hyper mobility syndrome

What is this?? DD is hyper mobile in her ankles and feet but I've never heard of it as a syndrome.

 

[sequeena]

I've yet to research it essie but this is what the nhs website hss written
https://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Introduction.aspx

 

[essie0828]

I did a quick google. Do you have very flexible joints? Or Sean? Is it just Ts' thumb or does he have other joints involved?

DD has very flexible joints due to the hypo/ hyper tone of CP. Keeping her from getting injured is a bit of a chore.

 

[sequeena]

I have problems with my knee the joint isn't connected properly and dislocates. All of Ts joints are affected I thought he was clumsy and lazy for not walking very far.

 

[essie0828]

I found this https://www.medicinenet.com/script/main/mobileart.asp?articlekey=390

Have the docs mentioned Ehlers-Danlos syndrome?

 

[essie0828]

I have problems with my knee the joint isn't connected properly and dislocates. All of Ts joints are affected I thought he was clumsy and lazy for not walking very far.

Awww sweetie It's probably because his muscles aren't strong enough to stabilize his loose joints. PT will help him i think. The things I've read say hypermobility syndrome runs in families (genetic). If you have issues with it then he probably will to. I hope its not severe and he can grow out of it with some strengthening