It's been a while since I updated this-probably because everything has been going so smoothly with the helmet-and life is as usual hectic! We had an appointment on the 13th July at plagiocare and it all went well. Measurements were made of Thomas' head and amazingly there has been a 3mm improvement already in all of 8days. This equates to an improvement of 18%-Amazing! I was thinking visually his head looked a lot better but just couldn't believe that amount. Holes were also drilled into the helmet to allow his head to lose more heat. Although now his body temperature seems to have regulated to wearing it and he hardly sweats now. A massive relief. His hair has also got really thick through wearing it-which apparently is normal.
But we have all got used to him wearing his helmet and I have to say we don't really notice it anymore.
Thomas still goes to the chiropractor every 6 weeks or so. He was there last week, the first since wearing his helmet. She found quite a lot of tension in the front of his skull and did some cranial work with him. She feels because there is so much movement in the rest of his head through using the helmet the other plates of his skull weren't keeping up and so becoming compressed. She also found tension in his pelvis and he was visibly quite sore in that area. But she was able to release that. She now wants to see Thomas on a more regular basis while wearing his helmet just to keep things right with him.
Our next appointment at Plagiocare is not until the start of September- I really am hoping by that stage he will be finished having to wear the helmet. Fingers crossed!
Monday, 26 July 2010
Sunday, 4 July 2010
Helmet Update
The night I did the walk Thomas was supposed to start wearing his helmet through the night. However we decided to delay it by a day as I was concerned if he didn't sleep with it and how I'd be after the walk, and to be honest I don't think I could have coped with a sleepless night at that stage! Yesterday he wore it for 8 hours on, an hour break and back on for another 8 hours. We were out yesterday at Hannah's Pony Club camp watching her ride. People seem quite accepting of it and I just explain he has a flat head and it's to help cure it. Again he is still sweating profusely on his head.
Anyway last night was the first he wore it through the night....all was ok until about 1am and he woke up screaming. Poor little chap was drenched with sweat :-( I had him just in his nappy and a sleeping bag as well, but the back of the sleeping bag was soaked. I tried to settle him but he was having none of it so he came into our bed. We got through the night but he just wasn't all that happy. Then was awake crying again at 6am. I gave him his bottle and he was so thirsty-no wonder after the amount of sweat he had lost. After his bottle I was able to get him down in his own cot, and he had a good sleep until almost 10am. Last night was tough and I was really having doubts if I was doing the right thing. I just hate seeing him distressed. I think tonight I'll just keep him in a vest and no sleeping bag and will try and get a fan for his room. I looked up on the computer this morning and it is normal for them to sweat so much, and it normally takes about 2 weeks to settle down. Babies loose 40% of their body heat through their head, whereas we are 20% so no wonder he is so hot.
Well he is now down for his afternoon nap and has happily gone to sleep. I think he's exhausted. Hopefully this will all get better soon.
Anyway last night was the first he wore it through the night....all was ok until about 1am and he woke up screaming. Poor little chap was drenched with sweat :-( I had him just in his nappy and a sleeping bag as well, but the back of the sleeping bag was soaked. I tried to settle him but he was having none of it so he came into our bed. We got through the night but he just wasn't all that happy. Then was awake crying again at 6am. I gave him his bottle and he was so thirsty-no wonder after the amount of sweat he had lost. After his bottle I was able to get him down in his own cot, and he had a good sleep until almost 10am. Last night was tough and I was really having doubts if I was doing the right thing. I just hate seeing him distressed. I think tonight I'll just keep him in a vest and no sleeping bag and will try and get a fan for his room. I looked up on the computer this morning and it is normal for them to sweat so much, and it normally takes about 2 weeks to settle down. Babies loose 40% of their body heat through their head, whereas we are 20% so no wonder he is so hot.
Well he is now down for his afternoon nap and has happily gone to sleep. I think he's exhausted. Hopefully this will all get better soon.
The Finish Line!
I did it!!! 2 hours and 21minutes. It all went well, although the last mile was a bit tough with my pelvis starting to get a bit achy and sore, and then one of my calves started to cramp a bit ....but I just kept thinking it was worth it and no pain, no gain! I have to admit at one point I was thinking a skydive jump would have been easier! But parts of the walk were lovely, the weather was gorgeous with the sun shining. Walking along with Scrabo Tower majestically soring above us, and with stunning views across Strangford Lough and down to the Mourne Mountains....it was gorgeous!, and nice having a bit of 'me' time!..... and so I got through it, was in the first bunch of walkers across the line and got my medal at the end! Yesterday my muscles seemed relatively good and I wasn't too stiff.....thoughts were even drifting to a 5 mile run next month! Haaa - by last night I had totally stiffened up and at the moment am now walking around like an old woman! But it has been worth it and the amount of money I have raised has been incredible!
Friday, 2 July 2010
Countdown!
2hrs to go until the half marathon!!!!! I had a sudden panic there as had nothing suitable to wear- so a quick rush out to JB Sports to get some trousers this afternoon! I'm just looking at the sky...it's getting very dark....hope we're not in for a soaking! A feed of pasta for lunch so hopefully enough carbohydrates to keep my energy levels up! Oh dear it's lashing now :-( Hopefully it's just a passing shower.
As for Thomas, he had his helmet on for 4 hours today and had his morning nap in it. I took it off for his midday sleep and now it's been on all afternoon. He's been a little bit grizzly but I think he just wants picked up and cuddled! The helmet really doesn't seem to be bothering him though. He woke at 3.30 this morning but I think it's just a growing spurt he's going through as is always hungry at the moment. Of course Graham has that wonderful knack of sleeping through crying children at night!
Thanks again to everyone who has sponsered me, I am just staggered how generous people are and how much we have raised.
As for Thomas, he had his helmet on for 4 hours today and had his morning nap in it. I took it off for his midday sleep and now it's been on all afternoon. He's been a little bit grizzly but I think he just wants picked up and cuddled! The helmet really doesn't seem to be bothering him though. He woke at 3.30 this morning but I think it's just a growing spurt he's going through as is always hungry at the moment. Of course Graham has that wonderful knack of sleeping through crying children at night!
Thanks again to everyone who has sponsered me, I am just staggered how generous people are and how much we have raised.
Thursday, 1 July 2010
1st July
Today Thomas wore his helmet for 2hrs on and then a break for an hour, back on for another 2 hours and so on during the day. He still doesn't have to wear it during sleep time yet. He's been brilliant, never a grumble about wearing it, and has been in great form all day. We had our first outing today too wearing it- Thomas was my delivery boy delivering veg boxes! Then we had to pick his big sister Hannah up from Pony Club camp. The girls seem totally accepting of him wearing it which is a relief.
On the down side though he is so sweaty still under the helmet, his hair was soaking each time I took it off. I'm just making sure he drinks loads and am trying to keep him as cool as possible. I also noticed a few red pressure marks on his face, although apparently that is normal. We just have to make sure that they don't turn into sores.
I am totally overwhelmed by people's generousity in sponsoring me-Thank you so much everyone! It's been amazing. Especially considering a week ago I hadn't raised anything and was really beginning to panic! Tomorrow is the big day for the walk - ahhhhhhh! I am quite worried about it now although I am sure it'll be fine. So till tomorrow!
On the down side though he is so sweaty still under the helmet, his hair was soaking each time I took it off. I'm just making sure he drinks loads and am trying to keep him as cool as possible. I also noticed a few red pressure marks on his face, although apparently that is normal. We just have to make sure that they don't turn into sores.
I am totally overwhelmed by people's generousity in sponsoring me-Thank you so much everyone! It's been amazing. Especially considering a week ago I hadn't raised anything and was really beginning to panic! Tomorrow is the big day for the walk - ahhhhhhh! I am quite worried about it now although I am sure it'll be fine. So till tomorrow!
Wednesday, 30 June 2010
29th July - Our trip to Glasgow for the helmet fitting
Yesterday Thomas had his second appointment at the Plagiocare clinic in Glasgow. We got the early morning ferry over to Stranraer and were picked up by our brilliant taxi service-my mum! It's just over 3 hours to drive up to the Bothwell clinic, with a quick picnic for lunch on route. Once at the clinic there was just time for a cup of tea and for Thomas to get his bottle. We were then taken in to be be seen by Sandie the Ossur clinician.
The helmet was made according to Thomas' first 3D scan with the expected improvement added in. He currently has an assymetry of 16mm and the helmet is designed for an improvement to 4mm based on the shape of his head. The picture of the mould shows what we are hoping to achieve by the end of all this!
Thomas was amazingly so so good getting the helmet on and bar putting his hands up to his head a few times at the start he seemed totally unfazed by it all. Just his usual trying to charm everyone with his smile! The helmet was trimmed around the edges and Sandie ran through the procedure for acclimating Thomas to wearing it, cleaning it etc. It was then a quick turnabout and back down the road for the evening ferry back to Belfast. I have to say Thomas was absolutely super, never a grumble or a cry from him all day!
Today-30th July Today Thomas has to wear the helmet for 1hr on, and then a break of 1hr and then back on for an hour while he's awake. Again he has been great at accepting it and it really doesn't seem to bother him. Saying that he is being a bit grumbly today but I do think it is just tiredness after yesterdays travelling. The only thing is with the helmet is he is very sweaty on his head when the helmet comes off. We were told to expect this and he is just to be dressed in minimum clothes. It is strange seeing him wearing the helmet but I am sure very soon we will get used to it...and the result at the end will all be worth it.
The helmet was made according to Thomas' first 3D scan with the expected improvement added in. He currently has an assymetry of 16mm and the helmet is designed for an improvement to 4mm based on the shape of his head. The picture of the mould shows what we are hoping to achieve by the end of all this!
Thomas was amazingly so so good getting the helmet on and bar putting his hands up to his head a few times at the start he seemed totally unfazed by it all. Just his usual trying to charm everyone with his smile! The helmet was trimmed around the edges and Sandie ran through the procedure for acclimating Thomas to wearing it, cleaning it etc. It was then a quick turnabout and back down the road for the evening ferry back to Belfast. I have to say Thomas was absolutely super, never a grumble or a cry from him all day!
Today-30th July Today Thomas has to wear the helmet for 1hr on, and then a break of 1hr and then back on for an hour while he's awake. Again he has been great at accepting it and it really doesn't seem to bother him. Saying that he is being a bit grumbly today but I do think it is just tiredness after yesterdays travelling. The only thing is with the helmet is he is very sweaty on his head when the helmet comes off. We were told to expect this and he is just to be dressed in minimum clothes. It is strange seeing him wearing the helmet but I am sure very soon we will get used to it...and the result at the end will all be worth it.
Thomas and Plagiocephaly
Our little son Thomas who is now 9 months old has a condition called plagiocephaly or flat head syndrome. This is there is partial flattening of the back of the head which gives a slightly distorted look to the head shape and which can cause misalignment of the ears and eyes.
When Thomas was born it was noticed that his head was tilted to the side and the midwife commented to me his face was assymetrical. This was attributed to a condition called torticollis, where there is a shortened muscle on one side of his neck. I think this arose as he was quite a long baby and when inside me he didn't appear to move much during the last stage of the pregnacy; he was probably stuck in one position. Initially he just had lateral flexion of the neck and then his head also started to rotate. He was quite grotchy and irritable as a tiny baby and I do think it was because he was in quite a lot of discomfort. From him being a week old he has been visiting a chiropractor who specialises in infants and she really has done wonders with him! The rotation has been totally sorted and there is only slight lateral flexion now. Thomas also sees a physiotherapist and has daily physio exercises to do, including stretches and lots of tummy time.
As a result of the torticollis Thomas has developed this condition plagiocephaly due to the way he has been lying. Despite repositioning him when he is sleeping and using a lilla kuddis pillow at night he has developed a very obvious flattening at the back of his head. When mentioned to the NHS their view seems to be that we will learn to live with it and his hair will cover the flattening. However any misalignment of the skull may contribute to jaw and dental problems and there could be negative psychological effects from teasing and bullying. There can also be problems fitting glasses and hats; which in our case may cause quite a problem if Thomas ever decided to follow his dad's footsteps in becoming a jockey! In severe cases surgery may even be required at a latter stage.
After seeing a case of plagiocephaly on the TV show Embarrassing Bodies, Kids last month, we were made aware of how getting a helmet fitted can greatly improve the flatness in young babies. I immediately did some research and found information about a number of companies that fit these helmets and also about this great charity headstart4babies. The results are amazing. As it happens there is nowhere in Ireland that fits these helmets and the nearest clinic to us is in Glasgow. We made the decision to take Thomas over to Glasgow for an initial assessment to see how bad his plagiocephaly actually was.
Last week we made the long journey over on the ferry to Glasgow for his assessment. Initial measurements were made of his head and then a camera took a 3D scan of his head. The result of this was that Thomas indeed does have severe plagiocephaly with an assymetry of 16mm. We have decided that we would really like to go ahead with getting a helmet fitted. However the problem is the helmet is not funded by the NHS and only provided privately costing £2000.
I am therefore trying to raise money to go towards this and for the charity headstart4babies. On the 2nd July I have entered Newtownards Half Marathon Walk and if you are still reading by this stage(!) I would be so grateful if you could maybe donate towards the fitting of the helmet for Thomas and to help heighten awareness of this condition.
When Thomas was born it was noticed that his head was tilted to the side and the midwife commented to me his face was assymetrical. This was attributed to a condition called torticollis, where there is a shortened muscle on one side of his neck. I think this arose as he was quite a long baby and when inside me he didn't appear to move much during the last stage of the pregnacy; he was probably stuck in one position. Initially he just had lateral flexion of the neck and then his head also started to rotate. He was quite grotchy and irritable as a tiny baby and I do think it was because he was in quite a lot of discomfort. From him being a week old he has been visiting a chiropractor who specialises in infants and she really has done wonders with him! The rotation has been totally sorted and there is only slight lateral flexion now. Thomas also sees a physiotherapist and has daily physio exercises to do, including stretches and lots of tummy time.
As a result of the torticollis Thomas has developed this condition plagiocephaly due to the way he has been lying. Despite repositioning him when he is sleeping and using a lilla kuddis pillow at night he has developed a very obvious flattening at the back of his head. When mentioned to the NHS their view seems to be that we will learn to live with it and his hair will cover the flattening. However any misalignment of the skull may contribute to jaw and dental problems and there could be negative psychological effects from teasing and bullying. There can also be problems fitting glasses and hats; which in our case may cause quite a problem if Thomas ever decided to follow his dad's footsteps in becoming a jockey! In severe cases surgery may even be required at a latter stage.
After seeing a case of plagiocephaly on the TV show Embarrassing Bodies, Kids last month, we were made aware of how getting a helmet fitted can greatly improve the flatness in young babies. I immediately did some research and found information about a number of companies that fit these helmets and also about this great charity headstart4babies. The results are amazing. As it happens there is nowhere in Ireland that fits these helmets and the nearest clinic to us is in Glasgow. We made the decision to take Thomas over to Glasgow for an initial assessment to see how bad his plagiocephaly actually was.
Last week we made the long journey over on the ferry to Glasgow for his assessment. Initial measurements were made of his head and then a camera took a 3D scan of his head. The result of this was that Thomas indeed does have severe plagiocephaly with an assymetry of 16mm. We have decided that we would really like to go ahead with getting a helmet fitted. However the problem is the helmet is not funded by the NHS and only provided privately costing £2000.
I am therefore trying to raise money to go towards this and for the charity headstart4babies. On the 2nd July I have entered Newtownards Half Marathon Walk and if you are still reading by this stage(!) I would be so grateful if you could maybe donate towards the fitting of the helmet for Thomas and to help heighten awareness of this condition.
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