Hi there,

I registered last year and posted a little, but since the birth of my daughter last July, my time has been almost zero.

Anyway, Jack is now 2.5 years old and he is trouble, lol!! Nah, seriously, he has made progress in lots of areas, he can now sit himself up from lying down, he can pivot while sitting, in the past two weeks he is making lovely advances in copying and pointing to his hair if I ask where it is, his nose...he has two Makaton signs. Unfortunately, he also hasn't made progress at the same time. He doesn't have any words, isn't mobile, no crawling, standing, not on his hands and knees, anything like that. He also remains 100% g-tube fed for food (well, pediasure) and drinks (um, water). We're meeting his specialist this afternoon to discuss fundoplication as his reflux is still very bad. His tone remains extremely low and I think the combination of DS and CP makes things very difficult for him.

We are also having major behavior problems for around the past 6 months. He's not so bad at home, but take him ANYWHERE outdoors - for a walk, to the shops, doctors, on the bus, he screams and screams and cries and he will act like this the entire time until you leave. This means we have next to none family time as it is so stressful. He had a CT scan recently as we were unsure if it was shunt issue and he had increased pressure. he has plagiocephaly and they weren't sure about craniosyntosis, but this came back ok. His hearing is underdermined (my next thought is it is a sensory issue), I know he can hear as he responds to sound and does his signs on verbal command, but I don't know as to what range/frequency he can hear. From a couple of years ago really, he's had fluid in his ears. They're tried two times to fit tubes, but they cannot get even the tiniest ones in, so it could be that all the sounds are amplified and it's upsetting him. Or, he may just be being two!

Anyway, it's quite difficult to care for him. He brings me so much joy and I love him to death, but he is not a physical child. He doesn't give me hugs and kisses and I get a bit down sometimes that he lights up when DH comes home and seems annoyed with me half the time. I know it's because I'm always here, but still. We're looking to start him at nursery in September, part time, which I think he will love. It is at a special needs school so he will be able to have all his therapies there (I sometimes have appts 4 times a week with one thing or another, totally hectic). He is so lovely though. We go to a Makaton communication group and a hydrotherapy group and a local toy library and he is such a social chap. His all time favorite thing to do is to sit infront of a mirror, he is unbelievably cute. He's wave and make all kinds of hand movements and babble to himself non-stop!

His little sister is one next month! I cannot believe where the time goes. He was frightened of her at first, but they love each other. Just the other day (very new thing), Katie was eating a baby biscuit (cookie), he was sitting next to her and he took it off her (lol), but then, he gave her it back! He tried to pick up the bits she was dropping and give her those too, it was so sweet. Since normally, he teases her with toys and doesn't like her taking his things. She is a little angel too, although she is also a bit behind. She is 11 months old next week and all she can do is sit (if I sit her), she *barely* rolls, she can't stand even if I support under her arms, no scooting, pulling up, crawling, blah, blah, so it's like I have twins. I'm constantly asked if they're twins . She can eat though! She drinks her own bottles, cups and finger foods. She is 100% opposite to him, he wants nothing to do with food (cries and chokes) and she cries when her food is gone or she sees someone eating and she's not.

Sorry this is so long, lots have happened! I'm really going to try to keep up. I'll post some new pictures shortly.

Just noticed my signature - yep, they have DEFINITELY changed since then!!

I remember you! Welcome back! The kids are adorable!!! Sounds like you really have a full plate. I think the nursery school is a good idea... it's hard not to ever do family time... Still, it sounds like Jack is a sweetie and you are doing a fantastic job!!! Please stick around, I can't wait to hear how he likes school!

Yep, the kids have certainly changed!! and OMG they are so cute, I can never get cute pictures of both my kids together.

With my 2nd I was expecting all the milestones to be hit right when the book said it should happen, but every baby is on it's own schedule. Kieran sat right at 9 months (like his brother), didn't crawl 'till 11 months and didn't walk 'till 16 months. I was starting to think that I'd be taking them both to PT.

The behaviour stuff sounds like it could be sensory or could just be an I'm 2 and don't know how to communicate my needs thing as well.

Good luck with school, you'll have to let us know how it goes.

Well gosh - i have no idea why you don't have more time to post on here lol! Wow - you must have quite a schedule. Jack's smile is just gorgeous and Katie is a sweetie.

It sounds like the nursery for Jack is a great idea - you really do need free time - it makes a big difference in your own emotional health. Take care and big hugs to your family.

Wow those are some fantastic pics. What excellent smiles your kids have got.

Welcome back to downsyn. Jack sounds like he is definitely a 2 year old. They don't call it the terrible two's for nothing.

Hope you can get some time for yourself in the near future.

They are both just precious. Glad to see you back. I do remember you as I had just had my son when you 1st started posting. Thanks for updating us. They are adorable!

Welcome back and Your kids are just beautiful.

Jack and Katie are SO adorable! i love the bath picture - what a smile! glad you found time to update us on your angel. sounds like Jack is doing well. i bet he'll enjoy going to nursery in the Fall. aj

Kelly

Welcome back!

Have to say your kids are something else....just adorable!
Looking at them brings a smile to my face!
Hope Jack likes his new school.
Be sure and tell us all about his first day.

Thanks for posting the pictures of Jack and Katie....they are wonderful!

Your kids are beautiful!!!! Welcome back.

Welcome back. I remember you because your daughter has my name. LOL. Anyway glad your back and let us know how Jack does with nursery school.

Aarh your babes are so gorgeous and cutesy! Welcome

Hi my name is Gloria and mom to Sammy 8 months. You'r kids are soo cute. I love their smile.

sorry Kelly I just went back and realised I missed this (I've PM'd you )

didn't realise you were from the UK either

welcome back and love the pictures

Jack is a real cutie

Welcome back! Your children are so cute!!

I always miss this section of the forum! Jack is adorable. I have a daughter who also has a g-tube. She's started eating, but refuses to drink. Darah is 22 months old and will have a baby brother this November.

Welcome back!!

Hi kelly~ Must have missed you, Jack is really growing up so fast!! what an adorable little boy and Katie, what a princess.
I do hope to hear more about them both, I am going to try to PM you later....

ava

Hello and welcome back. Your kids are absolutely adorable. I am sure school will be a great thing for both of you. What a great way for both of you to spread your wings. Can't wait to hear all about both of your journey.

They are both absolutely beautiful. They sure have changed. It does sound like you have a full plate, but it sounds to me like you are the best mommy for the job. School will be a great step I am sure.

Welcome back - the new photos are great - such big smiles. My son goes to daycare part time - and I feel that it has really helped him to be social and learn new things. We are also booked with therapy - but he's my only child so it is manageable for now. Take care and post when you can.

loved the update...your kiddos are soooo cute!!!!! my son's name is jack too. he is 3 months old and the joy of our lives...hope to hear more from you!