Developmental disorders/learning disabilities/genetic syndromes & more support group
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so sorry for the loss of bean 
bumpin2012
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Oh, Essie. I'm so sorry hun. What an awful experience. Massive 
bumpin2012
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Admitted to hospital for induction. Baby's measurements dropped off drastically, and on ultrasound she's measuring less than 5th percentile. Cervidil in at 2 pm, but she's having decelerations, and they aren't sure she's going to tolerate active labour. Hopefully baby decides to cooperate and make things ready on her mama.
JASMAK
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Awesome news about Ts therapy sequeena. He will do great
We lost our bean today and I narrowly avoided a hysterectomy. I had to have 2 units of blood and was intubated and have incisions in my abdomen from a laproscopy. DH is freaked out and says no more babies, it's too dangerous to try. For now, I agree. Hate to rain bad news on everyone but I figure you guys should know since I chat in here often. I'm pretty numb about it and just ready to heal up and focus on DD.
I am very sorry for your loss. Please rest up and take care.
JASMAK
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Good luck to you. Has she turned then? Did I miss the update? Hopefully a smooth labour for you. Thinking of you.
essie0828
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Oh no hun I hope you two are ok
Good luck hun. Let us know how things are going when you can.
sequeena
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I've posted this everywhere I can think of and of course it should go here too 
Today is May 1st. It's the first ever Global Developmental Awareness Day. Here is Thomas' story.
We always knew Thomas was a little 'different'. After a traumatic pregnancy and a less than easy start to life how could he not be? He was a beautiful baby, always full of smiles and giggles for him mum and dad. When other babies his age started sitting at 5-6 months (some even 4 months) we didn't panic. He was our first child and we knew it could take a little longer. He did it at 8 months and we were so happy. He crawled 2 weeks before his first birthday. He never commando crawled or crawled backwards. He just upped and went and we were so proud. After he turned 1 year we started noticing he was that bit more different to other children. I worried a lot but told myself that he would be fine and he would catch up when he was ready.
January 2013 at 17 months old Thomas took his first few tentative steps. Within hours he was walking the length of the living room. Within days he was outside. We were shocked that he'd done it so fast but we were ecstatic and boy was Thomas proud of himself! My health visitor completed a 18-24 month check that same month and noted significant delays so referred him to a pediatrician. We were shocked. We knew he was a little behind but surely it wasn't that bad?
At 20 months Thomas had his first Ruth Griffiths Assessment. A very in-depth developmental test. I wanted to cry during the test. He didn't understand what the pediatrician was saying. He couldn't do what she showed him. It was a long, stressful and upsetting test and she told us that Thomas had something called Global Developmental Delay. What is it? This is the definition of GDD:
A child may be described as having global developmental delay (GDD) if they have not reached two or more milestones in all areas of development (called developmental domains). These areas are:
- motor skills - either gross motor skills like sitting up or rolling over and fine motor skills, for example picking up small objects
- speech and language - which also includes babbling, imitating speech and identifying sounds, as well as understanding what other people are trying to communicate to them
- cognitive skills - the ability to learn new things, process information, organise their thoughts and remember things
- social and emotional skills - interacting with others and development of personal traits and feelings, as well as starting to understanding and respond to the needs and feelings of others.
Thomas, as it turned out was behind in every area of developmental. The developmental ages differed (as opposed to his chronological or true age) but overall he was 12 months behind. We were devastated and blamed ourselves. Did we not do enough with him? Did my pregnancy cause it? Or his start in life? His pediatrician assured us that we'd done nothing wrong. So what did this GDD mean? Would he catch up? We were told he would progress but he would never truly catch up with other children his age. That opened up so many questions and more heartache. Would he ever be able to go mainstream school, have friends, form relationships, live independently, have a family? We can't answer those questions right now but we live in hope that Thomas will be able to do all of these things and more.
GDD is not an official diagnosis. It is an umbrella term. Currently my child is a SWAN child (Syndrome Without A Name). We do not know what is causing his delays. However the RG tests have opened up a new world for us. We found out that Thomas has eye issues - long sightedness, astigmatism and a turn in the eye. He has bilateral conductive hearing loss (and is still undergoing tests to find out how bad it is). He has extreme hypermobility and hypotonia. It's not all bad news. He has some amazing therapists. Physio (and is due to start rebound therapy), a wonderful plastic surgeon and occupational therapist for his thumb (did I mention he was born with 3 thumbs?), Portage and he's just started an Action For Children pre school project where he gets to spend 2 hours every week in a nursery type setting with other children who have problems similar to him. We have just joined SWAN UK which is turning out to be a wealth of support and information and we will be meeting other SWAN children and their families this summer.
We have had tons of terrific support from our friends and family. They have been there for my horrific pregnancy, when Thomas was seriously ill, his surgeries, his other tests. They've been a shoulder to cry on when the responsibility of being a mum to a disabled child has rested heavily on my shoulders. They have sat with me at 3am and given me encouragement when Thomas refused to sleep. They continue to be a source of enouragement and inspiration - some are going through worse than us and still find it in their heart to give. We cannot thank you enough for everything you have done and know you will be there on the next leg of our journey - genetic testing. I don't need to name anyone, you know who you are. And thank you everyone for supporting GDD awareness day in your own special way. It means so much to us.
Thomas is currently 15 months behind in his development but he continues to surprise us every day. He is our beautiful soldier who has been through so much and keeps going with the biggest smile on his face. We love you little man.
https://i798.photobucket.com/albums/yy267/sequeena1/DSCF1088.jpg
Today is May 1st. It's the first ever Global Developmental Awareness Day. Here is Thomas' story.
We always knew Thomas was a little 'different'. After a traumatic pregnancy and a less than easy start to life how could he not be? He was a beautiful baby, always full of smiles and giggles for him mum and dad. When other babies his age started sitting at 5-6 months (some even 4 months) we didn't panic. He was our first child and we knew it could take a little longer. He did it at 8 months and we were so happy. He crawled 2 weeks before his first birthday. He never commando crawled or crawled backwards. He just upped and went and we were so proud. After he turned 1 year we started noticing he was that bit more different to other children. I worried a lot but told myself that he would be fine and he would catch up when he was ready.
January 2013 at 17 months old Thomas took his first few tentative steps. Within hours he was walking the length of the living room. Within days he was outside. We were shocked that he'd done it so fast but we were ecstatic and boy was Thomas proud of himself! My health visitor completed a 18-24 month check that same month and noted significant delays so referred him to a pediatrician. We were shocked. We knew he was a little behind but surely it wasn't that bad?
At 20 months Thomas had his first Ruth Griffiths Assessment. A very in-depth developmental test. I wanted to cry during the test. He didn't understand what the pediatrician was saying. He couldn't do what she showed him. It was a long, stressful and upsetting test and she told us that Thomas had something called Global Developmental Delay. What is it? This is the definition of GDD:
A child may be described as having global developmental delay (GDD) if they have not reached two or more milestones in all areas of development (called developmental domains). These areas are:
- motor skills - either gross motor skills like sitting up or rolling over and fine motor skills, for example picking up small objects
- speech and language - which also includes babbling, imitating speech and identifying sounds, as well as understanding what other people are trying to communicate to them
- cognitive skills - the ability to learn new things, process information, organise their thoughts and remember things
- social and emotional skills - interacting with others and development of personal traits and feelings, as well as starting to understanding and respond to the needs and feelings of others.
Thomas, as it turned out was behind in every area of developmental. The developmental ages differed (as opposed to his chronological or true age) but overall he was 12 months behind. We were devastated and blamed ourselves. Did we not do enough with him? Did my pregnancy cause it? Or his start in life? His pediatrician assured us that we'd done nothing wrong. So what did this GDD mean? Would he catch up? We were told he would progress but he would never truly catch up with other children his age. That opened up so many questions and more heartache. Would he ever be able to go mainstream school, have friends, form relationships, live independently, have a family? We can't answer those questions right now but we live in hope that Thomas will be able to do all of these things and more.
GDD is not an official diagnosis. It is an umbrella term. Currently my child is a SWAN child (Syndrome Without A Name). We do not know what is causing his delays. However the RG tests have opened up a new world for us. We found out that Thomas has eye issues - long sightedness, astigmatism and a turn in the eye. He has bilateral conductive hearing loss (and is still undergoing tests to find out how bad it is). He has extreme hypermobility and hypotonia. It's not all bad news. He has some amazing therapists. Physio (and is due to start rebound therapy), a wonderful plastic surgeon and occupational therapist for his thumb (did I mention he was born with 3 thumbs?), Portage and he's just started an Action For Children pre school project where he gets to spend 2 hours every week in a nursery type setting with other children who have problems similar to him. We have just joined SWAN UK which is turning out to be a wealth of support and information and we will be meeting other SWAN children and their families this summer.
We have had tons of terrific support from our friends and family. They have been there for my horrific pregnancy, when Thomas was seriously ill, his surgeries, his other tests. They've been a shoulder to cry on when the responsibility of being a mum to a disabled child has rested heavily on my shoulders. They have sat with me at 3am and given me encouragement when Thomas refused to sleep. They continue to be a source of enouragement and inspiration - some are going through worse than us and still find it in their heart to give. We cannot thank you enough for everything you have done and know you will be there on the next leg of our journey - genetic testing. I don't need to name anyone, you know who you are. And thank you everyone for supporting GDD awareness day in your own special way. It means so much to us.
Thomas is currently 15 months behind in his development but he continues to surprise us every day. He is our beautiful soldier who has been through so much and keeps going with the biggest smile on his face. We love you little man.
https://i798.photobucket.com/albums/yy267/sequeena1/DSCF1088.jpg
sequeena
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bumpin2012
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Sequeena, lovely story!
Baby girl is here! She's tiny, but healthy. Jillian Nicole, 5 lbs 14 oz. She has a FULL head of dark hair and is quite the snuggle bum
Baby girl is here! She's tiny, but healthy. Jillian Nicole, 5 lbs 14 oz. She has a FULL head of dark hair and is quite the snuggle bum
Bumpin - hope everything goes really well. Looking forward to a good update from you.
Thanks for sharing Sequeena
We've finally had Esther's next lot of speech therapy sessions through, after waiting nearly 6 months!! It's at 10.30 on a Thursday morning. This is so annoying on so many different levels. It's a preschool day and is right in the middle of the session - depending on if i have our car and how long the sessions last for then it's possible that she won't even get into preschool for any of the 6 sessions. It's also pretty much the one day a week that i actually have something that i do each week so i've had to do a load of rearranging. But i've not been able to rearrange a couple of things - mainly, i am working at a polling station for the european elections one of the weeks and it's our wedding anniversary the next week and i had plans for that. I know i shouldn't complain but i find it all so frustrating. At the end of the last block i specifically asked for the sessions not to be on a Tues or Thurs am. I tried rearranging and basically if i cancel those sessions we go back on the waiting list and by the time another block become available she may well be at school and therefore the speech therapy is different. I just wish that her ST had been much more consistent - she's been having it since she was 2 1/2 and there has been a 6 month gap between each block. I'm sure that over the course of 2 years she should of had more than what equates to 15hours of therapy.
Sorry rant over!
Thanks for sharing Sequeena
We've finally had Esther's next lot of speech therapy sessions through, after waiting nearly 6 months!! It's at 10.30 on a Thursday morning. This is so annoying on so many different levels. It's a preschool day and is right in the middle of the session - depending on if i have our car and how long the sessions last for then it's possible that she won't even get into preschool for any of the 6 sessions. It's also pretty much the one day a week that i actually have something that i do each week so i've had to do a load of rearranging. But i've not been able to rearrange a couple of things - mainly, i am working at a polling station for the european elections one of the weeks and it's our wedding anniversary the next week and i had plans for that. I know i shouldn't complain but i find it all so frustrating. At the end of the last block i specifically asked for the sessions not to be on a Tues or Thurs am. I tried rearranging and basically if i cancel those sessions we go back on the waiting list and by the time another block become available she may well be at school and therefore the speech therapy is different. I just wish that her ST had been much more consistent - she's been having it since she was 2 1/2 and there has been a 6 month gap between each block. I'm sure that over the course of 2 years she should of had more than what equates to 15hours of therapy.
Sorry rant over!
Sequeena, lovely story!
Baby girl is here! She's tiny, but healthy. Jillian Nicole, 5 lbs 14 oz. She has a FULL head of dark hair and is quite the snuggle bum
Congratulations. Glad you are both ok
essie0828
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Super congrats bumpin. I'm so glad she's here and healthy Enjoy the little darling, and I love her name. Beautiful!
Sequeena T is such a handsome lil guy, he's coming along so well. You guys have done great with him. The rebound therapy and nursery group will be great I'm sure.
DD is making progress with her walking. She doesn't need a kaye walker anymore but she still isn't walking long distances just yet. She will begin additional OT and feeding classes soon to help with her oral motor issues and hopefully with the drooling. She's getting much better with it and the drooling is down to a minimum since we have been doing the tummy strengthening exercises and kinesiotape. She's still a GDD child but she's getting much better and the therapies are the key. The more we do the better she does although it's at her pace. I'm very proud of her. to all you mamas that are raising kiddos with delays.
Enjoy the little darling, and I love her name. Beautiful! Sequeena T is such a handsome lil guy, he's coming along so well. You guys have done great with him. The rebound therapy and nursery group will be great I'm sure.
DD is making progress with her walking. She doesn't need a kaye walker anymore but she still isn't walking long distances just yet. She will begin additional OT and feeding classes soon to help with her oral motor issues and hopefully with the drooling. She's getting much better with it and the drooling is down to a minimum since we have been doing the tummy strengthening exercises and kinesiotape. She's still a GDD child but she's getting much better and the therapies are the key. The more we do the better she does although it's at her pace. I'm very proud of her.
to all you mamas that are raising kiddos with delays.Thanks.
I was quite shocked when i realised that she'll of only had 15 hours ST by the time she starts school in Sept - it really doesn't seem much. Once she's had this next 6 week block she won't be offered any more sessions before starting school. Once she's at school however there is a high possibility of us paying privately for a ST to go into school each week if we think she needs it.
She loves her preschool - in fact from what we can tell she isn't too fussed on the idea that she'll be moving to school in Sept. Although once she's started at school and has made a connection with 1 adult then she'll be fine. She kind of gets quite dependant on an adult in settings like that - she forms an attachment and they are almost like a mummy substitute when i'm not there. Thankfully she's able to move about the room and play but she likes to check in with her chosen adult every 5 - 10 min or so!
And it sounds like your DD is doing well
sequeena
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Oh congratulations bumpin I'm so happy for you!
Rach I so understand. T last had speech therapy in November/December so we're at the 5 month mark. I had to make a point of asking when his next block would be when I was in the playgroup on Monday. It'll be 'soon' apparently. Another 2 months then
Essie I'm so pleased she's doing well. It's definitely about going at their pace. Thomas was on one shape sorter for about 6 weeks but we wouldn't swap it until he managed to complete it fully.
I actually... have no hospital appointments!! aside from portage and playgroup I am hospital free for now. WOOHOO!!!
Rach I so understand. T last had speech therapy in November/December so we're at the 5 month mark. I had to make a point of asking when his next block would be when I was in the playgroup on Monday. It'll be 'soon' apparently. Another 2 months then
Essie I'm so pleased she's doing well. It's definitely about going at their pace. Thomas was on one shape sorter for about 6 weeks but we wouldn't swap it until he managed to complete it fully.
I actually... have no hospital appointments!!
aside from portage and playgroup I am hospital free for now. WOOHOO!!!
nearlythere38
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Hello ladies, Im sorry I havent been on for a while. We had a very busy few weeks caring for Ava, visiting hospices and in and out of hospital.
Sadly Ava passed away on the 30th April, peacefully in my arms at the hospice. Heartbroken
Sadly Ava passed away on the 30th April, peacefully in my arms at the hospice. Heartbroken
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