Showing posts with label physiotherapy. Show all posts
Showing posts with label physiotherapy. Show all posts
Tuesday, 2 October 2012
A Good News Day
In the past this blog featured quite a lot of bad news and sadness. I wrote last night about how I had been avoiding what was once therapy for me.
I have lots and lots of good things to say. I suppose part of me has felt guilty that we have a happy ending when others with an identical start to Tiddler do not. Please don't misunderstand me, there are still differences, problems and hurdles to overcome but compared to what we had been warned to face, she is flying.
Tiddler is now 22 months. Where did that time go? She is a cheeky and mischievous toddler who likes dancing and bananas and Mr Tumble, in no particular order.
2 weeks before the arrival of her little sister she got up and walked. Literally. She had been cruising for a while, and whereas we had been warned she may not walk, it had been clear for some
months that her physical development was improving at a faster rate. She stood up unaided in the middle of our lounge on the Thursday and by the Saturday had taken her first steps. I just couldn't believe it. I couldn't believe that my little Tiddler had proved everyone wrong again. I wish I could bottle her drive and tenacity.
She has been walking for 3 months now and is increasing in confidence all the time. She is close to being signed off physiotherapy we think and with that her weekly hydrotherapy. This will be an incredible moment for me as she has been receiving physio since she was 10 weeks old!
We await our next genetics appointment with great interest. I am even saying out loud that maybe they have made a mistake and actually there isn't anything defective in her genes? Maybe there is no genetic disorder?
In the meantime we have her sensory issues, poor weight gain, ENT problems and behavioural issues so I know we have enough to keep us quiet for now!!
I have been unsure whether to write about Tiddler's progress but decided that it's only fair to document the positives as well as the more difficult times. I do feel guilty about our happy "ending" which is strange as I am sure parents of "normal" children don't feel guilty about their normality...
Wednesday, 18 January 2012
A Tiddler update 13.5 months old.
Hello Blog, it's been a very very long time.
Things have been tough, busy and stressful. At its most basic, the reason behind my lack of blogging is downright knackeredness!
Tiddler is doing really well physically, she is now very effectively commando crawling and last week finally learnt to sit up on her own from lying. She is managing to stand supported when wearing her bright pink Piedro boots. The Physio was really pleased and impressed with her progress so that's great and it's reassuring to finally see things moving in the right direction.
We have also seen the Geneticist recently, who is now testing Tiddler's DNA for a "few very common muscle problems"... I didn't ask what... I have googled (i know, I know) but not really much the wiser. We will find out the results in 3 weeks. They were originally focussing somewhat on Ehler's Danlos as we have that in our family but as I do not have EDS they have been head scratching a bit. A diagnosis would be good- good for us, good for family, good for Tiddler's dalliances with "the system". We have already encountered the negative "oh, well she doesn't have a diagnosis does she.... " to requests for more support. It may be though that the quest for a diagnosis is both fruitless and pointless. Tiddler is still Tiddler and a label doesn't change who she is. I have got my head round this now I think.
What my head is struggling with though is the isolation. We just don't fit in. Tiddler behaves differently. Mums look but rarely comment or ask about her. To those that do ask about how she's doing, well I struggle with what to say. Do they really want to hear my answer or are they looking for the polite, typically British "fine thanks". Where do I start? What would I have said in their position? Probably nothing... I am no different to them then.
The main diffiiculties right now with Tiddler are her continued feeding issues, with associated arching and hitting her head when in her feeding chair, general head banging - which I am finding very upsetting- and her extreme under responsiveness to pain. To manage all three is proving draining and very very stressful. We are in the middle of a programme of Occupational Therapy so fingers crossed that this has a quick, positive impact.
In the meantime, I need to get out of the house every day. Tiddler's constant colds, Tonsilitis etc have made this hard and I have felt it! I also need to get myself out on my own. I rarely do this, largely due to feeling so tired, but really must try...
Things have been tough, busy and stressful. At its most basic, the reason behind my lack of blogging is downright knackeredness!
Tiddler is doing really well physically, she is now very effectively commando crawling and last week finally learnt to sit up on her own from lying. She is managing to stand supported when wearing her bright pink Piedro boots. The Physio was really pleased and impressed with her progress so that's great and it's reassuring to finally see things moving in the right direction.
We have also seen the Geneticist recently, who is now testing Tiddler's DNA for a "few very common muscle problems"... I didn't ask what... I have googled (i know, I know) but not really much the wiser. We will find out the results in 3 weeks. They were originally focussing somewhat on Ehler's Danlos as we have that in our family but as I do not have EDS they have been head scratching a bit. A diagnosis would be good- good for us, good for family, good for Tiddler's dalliances with "the system". We have already encountered the negative "oh, well she doesn't have a diagnosis does she.... " to requests for more support. It may be though that the quest for a diagnosis is both fruitless and pointless. Tiddler is still Tiddler and a label doesn't change who she is. I have got my head round this now I think.
What my head is struggling with though is the isolation. We just don't fit in. Tiddler behaves differently. Mums look but rarely comment or ask about her. To those that do ask about how she's doing, well I struggle with what to say. Do they really want to hear my answer or are they looking for the polite, typically British "fine thanks". Where do I start? What would I have said in their position? Probably nothing... I am no different to them then.
The main diffiiculties right now with Tiddler are her continued feeding issues, with associated arching and hitting her head when in her feeding chair, general head banging - which I am finding very upsetting- and her extreme under responsiveness to pain. To manage all three is proving draining and very very stressful. We are in the middle of a programme of Occupational Therapy so fingers crossed that this has a quick, positive impact.
In the meantime, I need to get out of the house every day. Tiddler's constant colds, Tonsilitis etc have made this hard and I have felt it! I also need to get myself out on my own. I rarely do this, largely due to feeling so tired, but really must try...
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.
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...
Thursday, 28 July 2011
Reasons to be Cheerful , 28th July
I really enjoyed doing this last time so here goes again:
- Tiddler is still feeding! She cries for feeds, finishes her feeds AND is doing really well with solids too
- I have spent lots of time with friends and their rugrats recently- nice as we have been out of action so much with Tiddler being unwell / in hospital etc In particular I really enjoyed spending time with a couple of old school friends
- Tiddler is starting to sit! We have been told that she will be slow to sit / crawl etc as she has Hypotonia meaning low muscle tone. In effect, she is floppy. However, at physiotherapy the physio was really pleased with the progress Tiddler had made and she actually sat for the first time (propped up and at a really crazy angle!) when there. I am confident that she is well on the way to proving a lot of people wrong...
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