Tiddler had an OT appointment today. The therapist attended her playgroup that is run by the local family centre for children with additional needs.
She was really pleased as I explained how someone seems to have "flicked a switch" and so in recent days Tiddler has been responding to pain almost without fail. The OT observed it herself as Tiddler rolled off a mat and hit her head off the floor and burst into tears. A few weeks ago she wouldn't have flickered a response. Amazing.
I also reported how her head banging seems to have improved, I almost didn't want to say this out loud as I am worried now I have cursed it and she will return to headbanging with a vengeance! I explained that there seems to be a direct link between Tiddler not wearing her Piedro boots and her refraining from head banging. Weird I know. I don't get it myself, apart from perhaps that having boot-less feet is just not giving her the feedback that my sensory seeking daughter needs so she is giving up quickly.
So why, why all of a sudden are things clicking for Tiddler? The OT didn't know... she said it could be a combination of the OT therapy and exercises I have been doing as well as perhaps her development now being appropriately advanced (although still delayed by approx 6 mths).
There are still outstanding issues- she still arches a lot and bangs toys on her head. Feeding is a massive area of concern for me. More of this another time.
Other good news very recently has been the DNA results from the Geneticist. Tiddler does not have either of the (quite nasty sounding) muscular disorders that were tested for. Relief, obviously- but it still means we are without a diagnosis and still wondering what exactly the future will hold for Tiddler. As I sit here typing now though, the signs are all very positive and I make no apology for enjoying this moment.
Showing posts with label arching. Show all posts
Showing posts with label arching. Show all posts
Monday, 6 February 2012
Tuesday, 25 October 2011
Physiotherapy & the Nature of the Beast
Why do I feel so devastated?
I had thought Tiddler was doing really well- a growth spurt, almost sitting, fashioning her own crawling, mastering bite/dissolve foods.
Why then, why did I drive home from her latest Physiotherapy appointment hurting and fighting back the tears?
T’s lovely physio gave her the fab patent hot pink Piedro boots to try on. Mummy would have liked a pair in size7. Seriously, they rocked. Due to T’s Chicken Pox we are a little later than intended, and so they only just fit. Oops. Size 2 and ½!
Tiddler went ballistic. Screaming and screaming, real tears, she was NOT happy. She hates socks / bootees anything on her feet so I suppose it shouldn’t have come as a surprise. Eventually, with my holding her and the Physio battling, we got the boots on. Still the screaming ensued. She tried T standing in them, I meanwhile was desperately trying to distract/ cheer her up. In the end I had to intervene and ask for us to take them off. I couldn’t bear to hear her upset any longer. It really didn’t seem worth it.
Upset number 1: the Physio at this point said she was really wobbly and weak and would need a standing frame as well as the Piedro boots. At our last appointment she had not said this. I know it’s only temporary but it still makes her less able than her peers and makes me concerned again about her future abilities. As she has been doing so well I had thought she would be walking by 18 months. I feel a bit stupid now. Maybe this won’t be the case. I am angry with myself that I let myself believe everything was nearly "there".
Upset number 2: I mentioned in passing that although her arching behaviour has got a lot better, she has started head banging. I have assumed this is a normal phase, it seems not. Now I am concerned. As she is still without a diagnosis, I suppose if there is to be one, then little pieces of the jigsaw such as head banging help to work out what the overall condition is.
The Physio suggested it is either behavioural - which is what I have assumed it is- or otherwise sensory? Now I have googled this quickly (I know, I know….) and it seems that it may be an issue with sensory processing. She also seems to have a very high threshold for pain. Whatever it is the appointment has brought me down to earth with the bump I was waiting for. Even if this latest episode turns out to be nothing it just shows we are never that far away from hypothesising, grey, twists and turns. I guess that’s the nature of the beast.
I had thought Tiddler was doing really well- a growth spurt, almost sitting, fashioning her own crawling, mastering bite/dissolve foods.
Why then, why did I drive home from her latest Physiotherapy appointment hurting and fighting back the tears?
T’s lovely physio gave her the fab patent hot pink Piedro boots to try on. Mummy would have liked a pair in size7. Seriously, they rocked. Due to T’s Chicken Pox we are a little later than intended, and so they only just fit. Oops. Size 2 and ½!
Tiddler went ballistic. Screaming and screaming, real tears, she was NOT happy. She hates socks / bootees anything on her feet so I suppose it shouldn’t have come as a surprise. Eventually, with my holding her and the Physio battling, we got the boots on. Still the screaming ensued. She tried T standing in them, I meanwhile was desperately trying to distract/ cheer her up. In the end I had to intervene and ask for us to take them off. I couldn’t bear to hear her upset any longer. It really didn’t seem worth it.
Upset number 1: the Physio at this point said she was really wobbly and weak and would need a standing frame as well as the Piedro boots. At our last appointment she had not said this. I know it’s only temporary but it still makes her less able than her peers and makes me concerned again about her future abilities. As she has been doing so well I had thought she would be walking by 18 months. I feel a bit stupid now. Maybe this won’t be the case. I am angry with myself that I let myself believe everything was nearly "there".
Upset number 2: I mentioned in passing that although her arching behaviour has got a lot better, she has started head banging. I have assumed this is a normal phase, it seems not. Now I am concerned. As she is still without a diagnosis, I suppose if there is to be one, then little pieces of the jigsaw such as head banging help to work out what the overall condition is.
The Physio suggested it is either behavioural - which is what I have assumed it is- or otherwise sensory? Now I have googled this quickly (I know, I know….) and it seems that it may be an issue with sensory processing. She also seems to have a very high threshold for pain. Whatever it is the appointment has brought me down to earth with the bump I was waiting for. Even if this latest episode turns out to be nothing it just shows we are never that far away from hypothesising, grey, twists and turns. I guess that’s the nature of the beast.
Saturday, 15 October 2011
Cuddle
Tonight Tiddler gave me the most lovely cuddle.
Tiddler is 10.5 months old. She is physically delayed due to her Hypotonia (low muscle tone) in her upper body. She also wriggles and arches, out of frustration as much as anything else as her body won't work as she wants it to. Holding her in any position is hard work and she requires more support than a "normal" baby.
I was putting her to bed tonight, calming her down and she reached her arms up to my face and we cuddled.
Amazing amazing feeling. I am a lucky Mummy. We are getting there.
Tiddler is 10.5 months old. She is physically delayed due to her Hypotonia (low muscle tone) in her upper body. She also wriggles and arches, out of frustration as much as anything else as her body won't work as she wants it to. Holding her in any position is hard work and she requires more support than a "normal" baby.
I was putting her to bed tonight, calming her down and she reached her arms up to my face and we cuddled.
Amazing amazing feeling. I am a lucky Mummy. We are getting there.
Tuesday, 4 October 2011
Brick wall
So today I bought a Baby Bjorn chair fron Mothercare. The only reason it got the sale was it was half price due to being an ex-display model. The next time I have a purchase to make I will be using kiddicare or John Lewis as I don't take too kindly to being ignored for several minutes by 4 sales assistants and 2 managerial - looking types. Shoddy. I was going to look at pushchairs- have my eye on one in particular. There was no-one to ask. so I will be buying elsewhere. Mothercare have no unique selling point as far as I can see. Please do contradict me if your experience is different!
Anyway, I digress. As Tiddler can't sit unaided and arches I really don't have anywhere where I can leave her safely right now. We borrowed a friend's Baby Bjorn chair and were pretty impressed so fingers crossed. As it is hammock-like there are no anchor points that she can push off from and twist or arch. Its also ok for quite some time and can apparently be used as a toddler seat.
If this seat doesn't work then I am totally stumped. I genuinely don't know what I am going to do. She is still not really sleeping through the day so I just don't have any time to do chores or just sit and have 5 minutes to myself. I am feeling pretty strung out and alone. Am investigating childminders/ babysitters and nurseries now for a bit of help with Tiddler to give me a bit of time out. Fingers crossed that the figures stack up to make it possible!
Anyway, I digress. As Tiddler can't sit unaided and arches I really don't have anywhere where I can leave her safely right now. We borrowed a friend's Baby Bjorn chair and were pretty impressed so fingers crossed. As it is hammock-like there are no anchor points that she can push off from and twist or arch. Its also ok for quite some time and can apparently be used as a toddler seat.
If this seat doesn't work then I am totally stumped. I genuinely don't know what I am going to do. She is still not really sleeping through the day so I just don't have any time to do chores or just sit and have 5 minutes to myself. I am feeling pretty strung out and alone. Am investigating childminders/ babysitters and nurseries now for a bit of help with Tiddler to give me a bit of time out. Fingers crossed that the figures stack up to make it possible!
Thursday, 15 September 2011
It never rains but it pours
This week has been really really tough. I have been struggling with Tiddler as she has started arching at almost every position change. So, this makes putting her in her tumbleform (feeding chair), car seat, pushchair, etc etc very difficult. She has also started to sleep pretty badly, and yep you guessed it, she arches when you try and put her into her crib too. Now the last few days have taught me, through bitter experience, that she will relax but you have to distract/ tickle etc. This is quite hard to do on your own when dealing with a wriggling child!
I have had a bit of week healthwise too- had to have ultrasound on Monday to check that a cyst I had during pregnancy had gone- apparently it has- and yesterday I had to go to the Breast Clinic. I had noticed changes post-Tiddler's arrival and upon the 3rd GP visit I was referred. All very scary, they use the C word and you can't help but ponder the "what ifs". Although I had been reassured that a serious problem was highly unlikely it has still been a very difficult and stressful week. I have, apparently, got Periductal Mastitis. So there you go! I have to go back for an ultrasound- they are going to be on first name terms with us there (Tiddler has had 3 or 4 ultrasound scans herself!).
Childcare for things like hospital appointments is really tough without having family nearby. At the moment with the way Tiddler arches etc I wouldnt know whether a babysitter / nanny would even work with us?! Am I over-analysing and panicking again!?
I have been desperate for help with Tiddler. I have called everyone! Some have been helpful, but without a diagnosis or a label to quote it sometimes feels as though I am trying to prove entitlement. The Occupational Therapist has gone to ground again and so we are still awaiting a play seat.
However, its definitely not all bad. Tiddler has really come on with her sitting and I am hopeful that she may get there in a couple of weeks. That will make life a lot easier as at the moment I just can't leave her safely anywhere. Then I will just have to try to get her to sleep during the day... aghhhh the Holy Grail...
I have had a bit of week healthwise too- had to have ultrasound on Monday to check that a cyst I had during pregnancy had gone- apparently it has- and yesterday I had to go to the Breast Clinic. I had noticed changes post-Tiddler's arrival and upon the 3rd GP visit I was referred. All very scary, they use the C word and you can't help but ponder the "what ifs". Although I had been reassured that a serious problem was highly unlikely it has still been a very difficult and stressful week. I have, apparently, got Periductal Mastitis. So there you go! I have to go back for an ultrasound- they are going to be on first name terms with us there (Tiddler has had 3 or 4 ultrasound scans herself!).
Childcare for things like hospital appointments is really tough without having family nearby. At the moment with the way Tiddler arches etc I wouldnt know whether a babysitter / nanny would even work with us?! Am I over-analysing and panicking again!?
I have been desperate for help with Tiddler. I have called everyone! Some have been helpful, but without a diagnosis or a label to quote it sometimes feels as though I am trying to prove entitlement. The Occupational Therapist has gone to ground again and so we are still awaiting a play seat.
However, its definitely not all bad. Tiddler has really come on with her sitting and I am hopeful that she may get there in a couple of weeks. That will make life a lot easier as at the moment I just can't leave her safely anywhere. Then I will just have to try to get her to sleep during the day... aghhhh the Holy Grail...
Wednesday, 7 September 2011
The week and a wobble
It would be fair to say that the week so far is hardly a cracker.
A GP asked if Tiddler had Down's
Tiddler is full of cold
She hasn't slept well for days. We haven't slept well for days. I am knackered.
Tiddler has begun arching. This is now so entrenched I am tearing my hair out a little.
Thankfully her Paediatrician called this pm, he is really great, and gave me a bit of advice. Importantly, he reassured me she cannot cause herself harm. This has been my main worry as she goes back into a "crab" but as she can't use her arms to support her she uses her head and neck. It looks like her neck will snap. So there's half a plan now, we can be seen by a Paediatrician soon if it continues to cause concern. He did say perversely it is quite good as it shows her strength is improving. In the meantime I have to distract her to get her into her crib, tumbleform, car seat, puschair or seat. Oh Joy. It is truly draining. I need a break, and am wholeheartedly rueing that we have no family nearby to let me take a break.
A GP asked if Tiddler had Down's
Tiddler is full of cold
She hasn't slept well for days. We haven't slept well for days. I am knackered.
Tiddler has begun arching. This is now so entrenched I am tearing my hair out a little.
Thankfully her Paediatrician called this pm, he is really great, and gave me a bit of advice. Importantly, he reassured me she cannot cause herself harm. This has been my main worry as she goes back into a "crab" but as she can't use her arms to support her she uses her head and neck. It looks like her neck will snap. So there's half a plan now, we can be seen by a Paediatrician soon if it continues to cause concern. He did say perversely it is quite good as it shows her strength is improving. In the meantime I have to distract her to get her into her crib, tumbleform, car seat, puschair or seat. Oh Joy. It is truly draining. I need a break, and am wholeheartedly rueing that we have no family nearby to let me take a break.
Thursday, 1 September 2011
Lying, or rather not lying
More frustration today. Further to my bath seat rant...(we are still no further forward with that, I am waiting for the Occupational Health person to return off holiday).
Tiddler has always arched her back and neck. It looks awful, and we have put it down to reflux in the earlier days and thereafter thought it was a learnt movement. I have read elswhere recently that other children with Hypotonia also arch, so I have no idea as to the cause...
Anyway... last night she was lying on her back on her playmat and she arched her head right back- Tiddler's Daddy rushed to correct her as I can honestly say it looked like her neck was going to snap. The momentary panic and horror at how it looked literally brought tears to my eyes.
I spoke to our Physio today and she said that Tiddler would probably have self-corrected if we hadn't intervened and may not do it again, but that we should probably not leave her alone lying on the floor if we can avoid it. WTF??? She can't sit, I can't leave her in a chair as she arches and twists... she arches out of a Bumbo.... and now, now she can't be left lying on the floor???? Well how does that work then? How do I go to the loo/ prepare food/ answer the phone? I couldn't leave her for long at the best of times, but this really is like having a crawler or early walker but without the crawling and walking! The physio is lovely and normally very helpful, but I have to say this did not go down as one of our most constructive conversations.
I have all my hopes pinned on a Baby Bjorn chair- apparently they are impossible to get out of... we are borrowing one tomorrow. Fingers crossed! In the meantime, I shall also be crossing my legs as I clearly have to limit my loo breaks...
Tiddler has always arched her back and neck. It looks awful, and we have put it down to reflux in the earlier days and thereafter thought it was a learnt movement. I have read elswhere recently that other children with Hypotonia also arch, so I have no idea as to the cause...
Anyway... last night she was lying on her back on her playmat and she arched her head right back- Tiddler's Daddy rushed to correct her as I can honestly say it looked like her neck was going to snap. The momentary panic and horror at how it looked literally brought tears to my eyes.
I spoke to our Physio today and she said that Tiddler would probably have self-corrected if we hadn't intervened and may not do it again, but that we should probably not leave her alone lying on the floor if we can avoid it. WTF??? She can't sit, I can't leave her in a chair as she arches and twists... she arches out of a Bumbo.... and now, now she can't be left lying on the floor???? Well how does that work then? How do I go to the loo/ prepare food/ answer the phone? I couldn't leave her for long at the best of times, but this really is like having a crawler or early walker but without the crawling and walking! The physio is lovely and normally very helpful, but I have to say this did not go down as one of our most constructive conversations.
I have all my hopes pinned on a Baby Bjorn chair- apparently they are impossible to get out of... we are borrowing one tomorrow. Fingers crossed! In the meantime, I shall also be crossing my legs as I clearly have to limit my loo breaks...
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