I am feeling very optimistic after my special lil boys physio assessment. It went really well, lil boy played and did everything the PT wanted him to do. She agrees that he appears to have hemiplegia affecting his right side, but says in her opinion it is very mild and she thinks he will have little difficulty with most tasks.
She says his muscle tone is on the mild end of high, and explained it by saying his brain is sending too many signals to the muscles on his right side, which is why his right arm often tightens up close to his body, as all the muscles contract. His leg seems less affected than his arm, though she did notice he limps a bit and walks more on his toes with his right leg. She confirmed all the symptoms we have seem over the course of his life point towards congenital hemiplegia.
She also gave us some exercises to do with him, and said that the activities/stretches we have been doing on our own are good. We just need to keep encouraging him to use his right side as much as possible, through play and activities.
I am really hopeful now. She wants to wait and discuss his treatment after we get the results of the MRI, so we wont be seeing her again until February or so.
Monday 13 December 2010
Friday 3 December 2010
The ball is finally rolling!
This has been a big week, finally things are starting to happen.
First, I got a letter with lil boys MRI date, 26th January, 2011. He has a pre-anaesthetic appointment on the 17th, since they have to put him under to do the MRI. I am not looking forward to that. I still remember the way he screamed when they did the anaesthetic for his surgery. Maybe big daddy will go in to hold him this time, I don't know if I can do it again.
Second, I got a phone call from physio! Lil boy has his first appointment next Friday, 10th December. I hope it is up to my expectations. They sent me a stupid questionnaire, questions like "How long do you expect your child to need physio?" Ummmm, how should I know, I'm not a doctor. *sigh* I'm sure the questions have their purpose, but I don't know what that is.
Anyway, I am just excited that this are finally happening, and a bit nervous. Its like we are embarking on a new "normal" if that makes sense.
First, I got a letter with lil boys MRI date, 26th January, 2011. He has a pre-anaesthetic appointment on the 17th, since they have to put him under to do the MRI. I am not looking forward to that. I still remember the way he screamed when they did the anaesthetic for his surgery. Maybe big daddy will go in to hold him this time, I don't know if I can do it again.
Second, I got a phone call from physio! Lil boy has his first appointment next Friday, 10th December. I hope it is up to my expectations. They sent me a stupid questionnaire, questions like "How long do you expect your child to need physio?" Ummmm, how should I know, I'm not a doctor. *sigh* I'm sure the questions have their purpose, but I don't know what that is.
Anyway, I am just excited that this are finally happening, and a bit nervous. Its like we are embarking on a new "normal" if that makes sense.
Wednesday 24 November 2010
My Special Lil Boy is 2 now!
And we are one step closer to getting an appointment.
Last week we got a phone call from the paediatric consultant we had been referred to at the hospital clinic. She basically said she was happy with the other paediatricians assessment, and if it was OK with us, instead of having an appointment with her which would have the same outcome, she would just go ahead and refer us for an MRI and then refer us to the community paediatrician so we can get physical therapy going quicker.
So I guess that is as close as we are getting to an "official" diagnosis right now. I hope we get to see the community paediatrician soon, I want to see what they have to say. And I want physical therapy for my lil boy ASAP. From talking to other parents, he really should have been diagnosed at his 8 month check-up, so it feels like we are a year behind on his therapy. But I am also hopeful, because other parents have such good things to say about how much physical therapy has helped.
I continue to encourage him to use his right hand, and I get rewarded with occasional examples of improvement. I know with the right help, he will do very well.
Last week we got a phone call from the paediatric consultant we had been referred to at the hospital clinic. She basically said she was happy with the other paediatricians assessment, and if it was OK with us, instead of having an appointment with her which would have the same outcome, she would just go ahead and refer us for an MRI and then refer us to the community paediatrician so we can get physical therapy going quicker.
So I guess that is as close as we are getting to an "official" diagnosis right now. I hope we get to see the community paediatrician soon, I want to see what they have to say. And I want physical therapy for my lil boy ASAP. From talking to other parents, he really should have been diagnosed at his 8 month check-up, so it feels like we are a year behind on his therapy. But I am also hopeful, because other parents have such good things to say about how much physical therapy has helped.
I continue to encourage him to use his right hand, and I get rewarded with occasional examples of improvement. I know with the right help, he will do very well.
Wednesday 3 November 2010
And here we wait...
Yes, still waiting for a referral. Still. Waiting. Grr.
I did finally receive a copy of the letter that the Paediatric consultant sent to our GP though. So I have his opinion in black and white.
As for the hydrocele surgery, he seems to be completely recovered. He has a small scar to remind me of his ordeal every time I change his nappy, but I think it was worth it. His lil boy bits finally look normal, and he shouldn't have to worry about any pain or complications in the future.
I just hope we get a referral soon. I know there will still be plenty of waiting to come even after we have an official diagnosis.
I did finally receive a copy of the letter that the Paediatric consultant sent to our GP though. So I have his opinion in black and white.
"Lil Boy seems to have slight weakness of the right arm and leg and probably leg length discrepancy with shortening of the leg on the right side and some muscle wasting. With his clinical history and neurological findings, it is very likely that Lil Boy has congenital hemiplegia. As it will affect his long term motor function and limb growth, he will need further investigations. He will also need long term physiotherapy and occupational therapy."It is stark, those words in black and white, down in writing, permanent. I get tears in my eyes every time I read it. I am still coming to terms with what this means for our future, hopeful that my special lil boy with astound everyone with his resilience.
As for the hydrocele surgery, he seems to be completely recovered. He has a small scar to remind me of his ordeal every time I change his nappy, but I think it was worth it. His lil boy bits finally look normal, and he shouldn't have to worry about any pain or complications in the future.
I just hope we get a referral soon. I know there will still be plenty of waiting to come even after we have an official diagnosis.
Wednesday 20 October 2010
Did someone have surgery?
Yesterday dawned bright and early. We got up at 6, boiled some eggs, woke up the lil boy and tried to get him to eat boiled egg and toast. He was having none of it. He looked at me as if to say "Why on earth did you wake me up so early and start shoving food in my face?" By 7 he had only eaten about half an egg yolk and one bite of toast, so we got him a bottle of milk, which he finished by 7:20, with just 10 minutes to spare.
By 10 lil boy was finally realizing he couldn't have any food, so he had some watered down apple juice to keep him going. We got going by 11, and got to the Children's ward at 11:30, just on time. Well, just in time to start waiting. I told you before I hate waiting, but yesterday was especially bad.
Lil boy was checked over, weighed, etc... he was given a hospital gown that was way too big, and we put it on him with his robe and slippers. We were told that our lil boy was first on the list since he was so young, and we expected to go up to the operating theatre by about 1:00, but that didn't happen. We found out that the morning session of surgeries had run over so we had to wait on that, plus lil boy had been bumped down to second on the list by a 4 month old baby. So lil boy had a good time playing with his bed and television for a while, as well as walking around the ward getting to know the place.
Finally at around 3:30 we were called up to the theatre floor. After a bit more waiting up there, it was time. That is when the real torture began. I had to hold my special lil boy tightly as they put his IV into his hand. It was heart wrenching. He screamed and tried to pull away. I kept him still and tried to reassure him as best I could. Luckily he had a good vein and they got in in the first try. He calmed down a bit after it was in, then thy gave him the sedative, and he slumped almost instantly. They had me quickly lay him on the bed and then I was rushed out of the room. I started crying then. It was the hardest part of the day.
The surgery went very quickly, no complications, and he was out in recovery by quarter past 4. He was very uncomfortable, and was a bit upset with me for about half an hour, but he soon got over it. About an hour after his surgery he ate his dinner, and by 6:30 he was up walking around, back to his normal cheerful self. I was amazed and grateful that he coped so well.
I am so glad it is over, my lil boy is healing well and playing like nothing happened. He occasionally seems a bit uncomfortable, but it is barely noticeable. We have been giving him pain killers every six hours for the first 24 hours just in case. I don't think he will need it at all after that. I think this whole ordeal has left me more exhausted than him!
By 10 lil boy was finally realizing he couldn't have any food, so he had some watered down apple juice to keep him going. We got going by 11, and got to the Children's ward at 11:30, just on time. Well, just in time to start waiting. I told you before I hate waiting, but yesterday was especially bad.
Lil boy was checked over, weighed, etc... he was given a hospital gown that was way too big, and we put it on him with his robe and slippers. We were told that our lil boy was first on the list since he was so young, and we expected to go up to the operating theatre by about 1:00, but that didn't happen. We found out that the morning session of surgeries had run over so we had to wait on that, plus lil boy had been bumped down to second on the list by a 4 month old baby. So lil boy had a good time playing with his bed and television for a while, as well as walking around the ward getting to know the place.
Finally at around 3:30 we were called up to the theatre floor. After a bit more waiting up there, it was time. That is when the real torture began. I had to hold my special lil boy tightly as they put his IV into his hand. It was heart wrenching. He screamed and tried to pull away. I kept him still and tried to reassure him as best I could. Luckily he had a good vein and they got in in the first try. He calmed down a bit after it was in, then thy gave him the sedative, and he slumped almost instantly. They had me quickly lay him on the bed and then I was rushed out of the room. I started crying then. It was the hardest part of the day.
The surgery went very quickly, no complications, and he was out in recovery by quarter past 4. He was very uncomfortable, and was a bit upset with me for about half an hour, but he soon got over it. About an hour after his surgery he ate his dinner, and by 6:30 he was up walking around, back to his normal cheerful self. I was amazed and grateful that he coped so well.
I am so glad it is over, my lil boy is healing well and playing like nothing happened. He occasionally seems a bit uncomfortable, but it is barely noticeable. We have been giving him pain killers every six hours for the first 24 hours just in case. I don't think he will need it at all after that. I think this whole ordeal has left me more exhausted than him!
Sunday 17 October 2010
The night before...
Surgery! I am packing my special lil boys bag... pajamas, robe, slippers, teddy... snacks for after surgery... plus all the usual baby gear. I'm so nervous. He doesn't even know what is going on.
Early morning, poor lil boy has to be woken up to eat his brekkie at 6:30, which is very early for him, considering he normally eats at about 10. He can only have a light breakfast, and no solid food after 7:30.
Lil boy can have clear liquids from 7:30 until 11:30 when he gets admitted to hospital. His surgery will be in the afternoon, and he should be able to come home about 4 or 5 hours later.
I don't know if I will be able to sleep at all tonight.
Early morning, poor lil boy has to be woken up to eat his brekkie at 6:30, which is very early for him, considering he normally eats at about 10. He can only have a light breakfast, and no solid food after 7:30.
Lil boy can have clear liquids from 7:30 until 11:30 when he gets admitted to hospital. His surgery will be in the afternoon, and he should be able to come home about 4 or 5 hours later.
I don't know if I will be able to sleep at all tonight.
Thursday 14 October 2010
23 months!
Today my special lil boy is 23 months old. I can't believe in just one month he will be two years old. The time has gone by so fast, I can remember the joy of finding out I was pregnant with him like it was yesterday. Every day with him is a joy, he is such a happy baby.
This week has been rough, lil boy is spending most of his time with Grandma, since hubby and I are sick. We are limiting our exposure to him pre-surgery, in the hopes he stays well. So far he has had a few sniffles and sneezes, but I am hopeful it doesn't develop further. I do not want his surgery to be postponed, I just want to get it done and over with so he can start healing.
Hubby was home sick yesterday, and today it was my turn. I stayed in bed til nearly noon, I am now sat huddled in a blanket. I may have a nap in a bit, after my next dose of cold meds. I want to be well so I can spend some quality time with lil boy this weekend.
This week has been rough, lil boy is spending most of his time with Grandma, since hubby and I are sick. We are limiting our exposure to him pre-surgery, in the hopes he stays well. So far he has had a few sniffles and sneezes, but I am hopeful it doesn't develop further. I do not want his surgery to be postponed, I just want to get it done and over with so he can start healing.
Hubby was home sick yesterday, and today it was my turn. I stayed in bed til nearly noon, I am now sat huddled in a blanket. I may have a nap in a bit, after my next dose of cold meds. I want to be well so I can spend some quality time with lil boy this weekend.
Wednesday 13 October 2010
Waiting...
I hate waiting... waiting for my special lil boys surgery, waiting for a referral... waiting to find out if he definitely has mild cerebral palsy. Waiting is awful.
Right now I have a cold, hubby has a cold, and we are desperate to keep our special lil boy from getting a cold too. If he gets a cold, we might have to postpone the surgery, which would mean even more waiting.
Please, no cold!
Right now I have a cold, hubby has a cold, and we are desperate to keep our special lil boy from getting a cold too. If he gets a cold, we might have to postpone the surgery, which would mean even more waiting.
Please, no cold!
Tuesday 12 October 2010
Step One...
My special lil boy is scheduled for surgery on the 18th, to correct a hydrocele testis. Don't know if you have heard of it, but it is basically a sac of fluid around his right testicle. Sometimes when the testes drop from the abdomen the channel remains open and the fluid flows between his testicle and abdomen, so they have to surgically close the hole. It is a short outpatient surgery.
Anyway, Thursday was his pre-op check. As part of the talk, they ask if he has other health problems or areas of concern. Of course I have concerns, I have had concerns since he was about 6 weeks old.
So I went over all the things I have told my GP about many times, the little things I mentioned to the Health Visitor, the things I was told were nothing. At about 6 weeks, we noticed his head tilted to the left, the right side of his neck seemed stiff. As the months went by we noticed he leaned to the left when he was sat reclined in his seat or swing. When he was learning to sit up, he had trouble because he leaned and fell over. His whole right side seemed stiffer than the left. I told all these concerns to my GP, and they said it was nothing, every child goes at their own rate. When I expressed concern to the HV that he was already left handed at 8-months, she said it ran in families, and was normal since I have a left handed child already. But I read it was rare to show a preference before one year old, so I didn't quite believe her.
As he got older we noticed more... he holds his right hand clenched in a fist, has always been left handed, doesnt use his right hand much at all... when he crawled, he did a funny one-legged crawl... when he learned to walk he walks awkward, swinging his left arm but keeping the right curled up at his side. He walks more on his tippy toes on his right foot, I can tell a difference by how his right shoe is always scuffed, but the left is fine... I went over all the little things my GP has said are nothing.
I even mentioned that I was concerned about mild cerebral palsy, which my GP had said it wasn't, but I had looked it up, and it seemed to fit all those little things. I think deep down I didn't push it further with the GP because I was afraid to find out.
So we discussed and she listened, finally I was taken seriously. She asked if I would mind waiting a minute while she went and checked something, and when she came back she said she had gotten us an unofficial visit with the head paediatric consultant, who she said is the best of the best. We were so lucky he had a few minutes to spare, under the guise that we were checking to make sure he was fit for surgery.
He examined my little guy as thouroghly as the unoffical 10 minutes would allow, and said I was right to be concerned. He thinks it is mostly likely congenital hemiplegia. In case you need an explanation, congenital hemiplegia is the most common form of cerebral palsy in children born at term, and perinatal stroke is the number one cause. The prevalence of congenital hemiplegia is estimated to be about 1 in 1000 live births. It usually affects the right side, and two thirds of those diagnosed are boys.
They are writing to my GP so I can have an official referral, we need to have him tested officially, he needs an MRI and everything. We found out as we left that the nurse caring for us has a son with motor difficulties, so she recognised some of the concerns I had and knew they were valid. She said if the consultant had been busy, she would have phoned my GP herself, she couldn't let us walk out of there without doing something. She is a true heroine, I am so grateful the NHS still has people like her.
I am half relieved that I was finally validated, and half shocked by the reality that there is really something wrong with my baby. I want to cry, but I need to be strong. I remind myself nothing has changed, but now he will be able to get the help he needs. Its so tough.
So I went over all the things I have told my GP about many times, the little things I mentioned to the Health Visitor, the things I was told were nothing. At about 6 weeks, we noticed his head tilted to the left, the right side of his neck seemed stiff. As the months went by we noticed he leaned to the left when he was sat reclined in his seat or swing. When he was learning to sit up, he had trouble because he leaned and fell over. His whole right side seemed stiffer than the left. I told all these concerns to my GP, and they said it was nothing, every child goes at their own rate. When I expressed concern to the HV that he was already left handed at 8-months, she said it ran in families, and was normal since I have a left handed child already. But I read it was rare to show a preference before one year old, so I didn't quite believe her.
As he got older we noticed more... he holds his right hand clenched in a fist, has always been left handed, doesnt use his right hand much at all... when he crawled, he did a funny one-legged crawl... when he learned to walk he walks awkward, swinging his left arm but keeping the right curled up at his side. He walks more on his tippy toes on his right foot, I can tell a difference by how his right shoe is always scuffed, but the left is fine... I went over all the little things my GP has said are nothing.
I even mentioned that I was concerned about mild cerebral palsy, which my GP had said it wasn't, but I had looked it up, and it seemed to fit all those little things. I think deep down I didn't push it further with the GP because I was afraid to find out.
So we discussed and she listened, finally I was taken seriously. She asked if I would mind waiting a minute while she went and checked something, and when she came back she said she had gotten us an unofficial visit with the head paediatric consultant, who she said is the best of the best. We were so lucky he had a few minutes to spare, under the guise that we were checking to make sure he was fit for surgery.
He examined my little guy as thouroghly as the unoffical 10 minutes would allow, and said I was right to be concerned. He thinks it is mostly likely congenital hemiplegia. In case you need an explanation, congenital hemiplegia is the most common form of cerebral palsy in children born at term, and perinatal stroke is the number one cause. The prevalence of congenital hemiplegia is estimated to be about 1 in 1000 live births. It usually affects the right side, and two thirds of those diagnosed are boys.
They are writing to my GP so I can have an official referral, we need to have him tested officially, he needs an MRI and everything. We found out as we left that the nurse caring for us has a son with motor difficulties, so she recognised some of the concerns I had and knew they were valid. She said if the consultant had been busy, she would have phoned my GP herself, she couldn't let us walk out of there without doing something. She is a true heroine, I am so grateful the NHS still has people like her.
I am half relieved that I was finally validated, and half shocked by the reality that there is really something wrong with my baby. I want to cry, but I need to be strong. I remind myself nothing has changed, but now he will be able to get the help he needs. Its so tough.
The Beginning
Welcome to Holland by Emily Perl Kingsley, a mom with a special needs child
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:
When you are going to have a baby, it's like planning a fabulous vacation to Italy. You buy a bunch of guide books and make all your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland ?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there has been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you go out and buy new guide books. And you learn a whole new language. And you meet a whole group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there awhile and you catch your breath, you look around and begin to notice Holland has windmills- and Holland has tulips. Holland even has Rembrandts.
But everyone one you know is busy coming and going from Italy...and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, and very lovely things about Holland.
Right now, I feel like I am on that plane. I was supposed to be going to Italy, but I had a feeling all flight long that something wasn't quite right. I already know we will be arriving in Holland soon, but I'm not quite sure when, and I am still hoping for Italy.
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:
When you are going to have a baby, it's like planning a fabulous vacation to Italy. You buy a bunch of guide books and make all your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland ?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there has been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you go out and buy new guide books. And you learn a whole new language. And you meet a whole group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there awhile and you catch your breath, you look around and begin to notice Holland has windmills- and Holland has tulips. Holland even has Rembrandts.
But everyone one you know is busy coming and going from Italy...and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, and very lovely things about Holland.
Right now, I feel like I am on that plane. I was supposed to be going to Italy, but I had a feeling all flight long that something wasn't quite right. I already know we will be arriving in Holland soon, but I'm not quite sure when, and I am still hoping for Italy.
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