Showing posts with label muscle tone. Show all posts
Showing posts with label muscle tone. Show all posts

Saturday, September 8

The Letter I've Waited For Forever

After a wonderful day out with a friend and her new baby in beautiful Richmond in north Yorkshire, I came home with the giggle-monster (also known as Wriggles) and found a nonchalant brown envelope sitting on my doormat. 

This letter I have been waiting for in some form for a long time, at least 15 months if not more. In many ways, nearly 2 years. I didn't know what it would look like, the exact words or when it would arrive but there has been some level of expectation that it would come at some point or something similar.

In bold type, amongst some other headings read the line:

"Diagnosis: Emerging central motor defect-cerebral palsy with mild asymmetry and developmental delay"

Since our recent development review when the consultant confirmed brisk reflexes and spasticity in both legs and the left arm, I have increasingly suspected that this would happen sooner or later. Both our consultants and physiotherapists have mercifully always been very open and honest with me which has lessened the blow, although I was surprised to still feel it keenly when I read the words in black and white. It is mild enough to have taken this long to diagnose, and to look at Wriggles you would be unlikely to suspect something slightly different at first, second or even third glance. By all means, as conditions go it is far from severe and because of this is very unlikely to hold her back definitively in anything. Yes, she might have to work harder and take longer to achieve physical milestones particularly involving lower limbs, but there is no reason seen now why she should not achieve anything. So given this, why do I feel so funny?

It's a label, I suppose. Bam, slapped on. Something to live with. A name. A condition. A reason. In many ways, I welcome the "answer" but in as many ways I mourn the confirmation. I've known since practically 'term' that Wriggles finds gross motor skills more difficult and that her reflexes and some core strength is not what it could be. I suppose the surprise, if could call it that, is that this isn't something which is going to disappear. This isn't our bit of prematurity that needs to just catch up. This is something that she will carry to school, to adulthood and beyond. It invites even more unknowns and fogginess to the future.

Thankfully, cerebral palsy is not degenerative. What you see, is what you get in that as it originates in the brain, it is not going to change. 

"Children with cerebral palsy have difficulties in controlling muscles and movements as they grow and develop. The nature and extent of these difficulties may change as children grow but cerebral palsy itself is not progressive: the injury or impairment in the brain does not change. However, the effects of the brain injury on the body may change over time for better or worse. Physiotherapy and other therapies can often help people with cerebral palsy reach their full potential and become more independent." Taken from Scope's website.

In cases like ours, diagnosis is not immediate because it doesn't have to be. It isn't that Wriggles has degenerated, it is just that it was not blindingly obvious before now especially given her prematurity and frequency of illness. Many 'symptoms' of cerebral palsy can also be attributed to different conditions and developmental progress that in some cases can be resolved. We have for some while now been receiving a physiotherapy programme similar to a child with a CP diagnosis because Wriggles was displaying the traits which are treated as and when they are prominent or seen to be hampering developmental progress. Her treatment will not know differ because of this letter; it doesn't need to. It just means that everyone will be aware that there are no quick fixes and she will probably remain on the books longer than expected. It's not just going to be resolved with a ta-da! Look she's walking now! as had been thought whenever she does start walking unaided. And I think that is what stings. 

I'm so glad, grateful and relieved that the linked-up health care and services in my area have enabled her so far and will continue to; I just wish we didn't have to be in that position in the first place.

Thursday, August 23

Stop Start

After a week of feeling on tenterhooks, this week draws to a close feeling a little....well I can't put my finger on it. Even without the scheduled PEG insertion, we had a full diary including a repeat video fluoroscopy and development review.

Monday afternoon, we trundled up to our favourite place (hospital) to have a review with the respiratory SHO to confirm whether or not the scheduled operation to insert a feeding tube and perform a respiratory and endoscopic review, would go ahead as planned. We had had no infections, no hiccups, and Wriggles was so full of beans since getting home she would not sit still for a minute. The consultant was delighted and flabbergasted at her immediate recovery as she tried to empty the nurses' trolley, and went off to tell the anaesthetist the good news. The anaesthetist had news of his own. And a mind of his own. He apologised but was not happy to go ahead as planned. Her chest may be (relatively) as clear as a bell and her energy levels enough for an Olympic team of athletes, but it had only been a week of no oxygen requirements and technically she could still be carrying the final dregs of infections. Sorry, but this week a PEG had to wait or he felt we would be having a reunion even if brief, with the staff on PICU on unpleasant terms. I don't regret his decision; I trust his skill and knowledge. It just felt a little deflating after mentally gearing up, packing a little hospital bag, trying to explain to Wriggles about nose-wiggly-worms and tummy-taps. 

It is now rescheduled for next week on the understanding that the whole thing may be cancelled again.

Tuesday morning, we had our first alarm-clock call since hospital for a repeat fluoroscopy. Wriggles had one last October which appeared clear, that dismantled plans laid 9 months previous for NG feeding prior to a PEG placement, that have now of course come up again and stayed. Barium, a radioactive substance, is added to fluids and food to show the swallow process in a moving X-Ray captured on film to be able to slow down and enlarge to get an accurate and in-depth picture. I packed a little tub of Quavers, a fromage frais and a bottle of milk. Wriggles had been nil by mouth for three weeks-surely this would be an exciting moment for her, albeit confusing? No. It was like the early days of her oral aversion again. She shrank away, clamped her mouth and cried in fear, confusion and revulsion. She held her arms out and shook her head. No amount of cajoling did anything. The girl was not drinking or eating. Apart from one Quaver with barely any barium on. Results: inconclusive. Apart from that everyone is now quite clear that feeding has been very complicated.

Today, was our development review that had been arranged for months. It was the appointment I was most relaxed about. As we have community and out-patient support that is ongoing and a fantastic and open team, I thought I was fairly clued up, at peace and relaxed. Important lesson: you don't know really how you feel about something until you hear it from a consultant. Much of the review was positive and complimentary. Funny how they are never the bits you take away. The bits that stay with me and linger in my mind and that will not go away are: 

Wriggles' developmental age is put at 14 months (she is 2 in three weeks, 21 months corrected).
That possible Cerebal Palsy diagnosis is becoming far more real and much more likely. It is not prevalent enough to diagnose here and now, but she is showing enough things to lead them to suspect it is present in a mild form, affecting three limbs.
Of course, both things are very black and white and there is so much in between. The development age does not take into account the various different areas and groups of skills, some of which she displays at a higher level. It doesn't take into account HER and her funny ways, her brilliant smile, her love of colouring, her new game of cuddling everything and her mad laugh which sounds like a manic sheep. It doesn't acknowledge in a breath her history, her bravery, her brilliance, her resilience...it is just a number. But it is a number that hurts, which is silly because it changes nothing and it is a snapshot of where she is now. She is not so affected that it is forever or for the next year, and even if it was, it means so little compared to the way she lights everything up.
And the CP thing. It's something that has been floating around as a possibility in varying degrees for ages; over a year. Just until recently, it could have been something that might have been a phase, something that might resolve. The muscle tone and core reflexes, which are the giveaways in our case, are showing less sign of going now. We have been working our way through things to help, some which are, but it is becoming apparent that they lessen symptoms for time periods, not resolve the central issue like was hoped initially. Partly, the issue has been partly masked by her amazing progress which has so delighted both me, family and the medical team she knows. She has achieved so much that it really is by the way. Our consultant has put us on the waiting list for an MRI and the plan for now is to press on with physio work. Both legs and her left arm have spasticity; her left leg more pronounced than her arm and right leg which are mild and unless you were a doctor with a keen eye and a tappy-stick, you would be none the wiser.

And so the waiting game goes on. Stop start stop start. Questions followed by answers, but not always the right ones. Followed by more questions. Some said out loud, many debated internally. Who knew it was possible to feel so proud yet so sad and confused.

Friday, August 17

Proud

Today, Wriggles was seen by our physio to be fitted for her new pink Piedro boots. After being very wary at first and hiding in me crying (I think the poor sausage associates people touching her feet with blood tests; they are rather pricked with tiny scars) she soon warmed up to them and was proudly kicking her feet about. As well as trying to exercises to help her cruising, our lovely physio and myself reflected on the past year that she has been working with us. She looked undoubtedly proud and told us that Wriggles was one of the children she had worked with who had made one of the biggest leaps in development; music to my ears when I know we still have further to go!

When Jemma started working with us after our previous physio went on maternity leave, Wriggles was approaching a year old and couldn't yet sit unsupported or roll over. Her lower limbs intermittently stiffened and then went very floppy, and we knew cerebral palsy (albeit, fairly mild) amongst other neurological diagnoses, was looming in their minds. It's not that this isn't the case anymore; it's just that Wriggles has surpassed the expectations of just how well she has done and now it is beside the point if in the past she has suffered a specific 'injury'. In under a year, she has learnt to sit, crawl, bear weight supported, roll over in both directions and cruise. Although I was told that there was no reason she wouldn't learn any of these things in time, we were also told that there were no promises, no guarantees and we would have to play the waiting game. Yes, it was likely she would eventually walk but by which means or in what time scale, no one knew. She still isn't walking, but she is able to pull to stand and is confident in cruising now and the physiotherapy and orthotics team are satisfied it may take as little as Piedro boots and time to get her to the next level. Everyone who has worked with her, and continues to, takes pride in how far she has come and what a comical little character she now is as opposed to a helpless jerky baby that came home with me, 21 months ago.

a year ago - "I'm really trying, honest!"
So many people think that a premature baby "just" needs to grow to term when they should have been born, leave the hospital and put on some weight and that is that. Job done, prematurity over, scars left behind. And yes, for a few babies that is the case. They can be carried out of NICU and bar a few development checks, never set foot in hospital again. And then there are those who have a very complicated journey to those who have a slightly complicated journey. Those who stay in hospital for months to come moving from NICU to paediatric care before discharge, those who go home with additional support and community care, those who the future looks rosy until something crops up, those that leave but keep coming back...so many variations. For many, prematurity doesn't end when you leave neonatal, the location just changes. The parents live with memories, labels, words, medical jargon they never understood before but do know, living with uncertainty as they wonder if something that cropped up before will rear it's head again in the future. Even as our little babies develop, we wonder like all mums, is she doing that right, is it on time, is that normal? teamed with the added knowledge of prematurity and statistical after effects.

Of course, our journey is far from over; from being resolved. But it is such a boost to hear that my little star has defied what doctors thought she might achieve. I remember the day after her birth, when one of the neonatal doctors came to speak to me. No promises, he said. The next 48 hours are critical for her immediate survival, let alone future. There is no telling what she may be able to do, or not do. And then as she grew older and the admissions started coming thick and fast, her notes tripling in size and the gulf of development inching wider. But then, slowly, she grabbed. She sat (and fell down). Then sat again. She rolled over by accident. Then rolled over on purpose. She started crouching on all fours. She started making 'bunny-hop' movements. Then she toppled over and crawled. Then one day out the blue, she heaved herself up. And I know, one day, whether in weeks or months, she will take wobbly steps. 

Oh baby girl, how far you have come!




Thursday, July 26

Piedro Boots

Today was our appointment with the Orthotics in the "Gait Lab" to assess if Wriggles needs additional support for walking and if so, what. Our physio had warned us that she was willing to take a hefty bet that she would be needing at least some support, whatever it was, so to be prepared to come away with something. She was not wrong; we have come away with an order for some pink Piedro boots.

"Piedro boots are orthotic shoes designed for children with disabilities and/or children who require extra arch or ankle support . They look similar to a normal boot but open closer to the toes so they are easier to put on children particularly if their toes curl. Piedros help to maintain a good foot position for standing (and walking) and may be tried before other orthotic devices such as AFOs are used."

I was pleasantly surprised that the styles of Piedro boots now are far from clumpy and hideous and "sensible" but are very child-friendly and practically funky. Judging by the chunky catalogue that the orthotics team possessed, they come in styles for every occasion and age range to suit the individual child. In our case, fuchsia nubuck boots.

They will be fitted in a few weeks to help the toe-clenching, ankle wobbling, wonky footedness and help control the variable muscle tone that appears to have lead to all of the above. I'm really glad we have an opportunity to try these boots before moving to anything more hardcore and I'm really really glad to have a supportive and proactive physio and a very competent community paediatrics team in my city who so far have been nothing but helpful and reassuring. Too many parents have to fight for help for their children and would trade in their right arm (and left one. And their leg) for some productive help or to get "in the system" to advantage their offspring. Having been born into the system and never having been straight forward enough to escape it, we are lucky to have always had someone to advocate for us because we've always needed some aspect of help or monitoring. And I really hope I do not sound ungrateful when I say this because I truly am anything but, but this in itself makes me a little bit sad. I love that my daughter is able to get help when she needs it, and I'm really glad that sometimes help can be bright pink and supportive, I just kind of wish we didn't need it in the first place. I will always take what is best for her, but a little bit of me that lives in the world where pre-Wriggles I dreamt of what it would be like to have children, wishes we could be in the Clarks shoes gang everyone else is in.

Tuesday, July 24

My Happy Girl

Today, I had some friends over. This isn't exactly unusual as we often meet friends either out or in, singularly and in groups. Today's friends are those I don't see every week, and the four of us adults lazily amused my adorably smiley little girl who was clearly in her element basking in the attention of quadruple what she is used to. For a bit it made me a bit sad that my family is not the "traditional" idyll it could have been if things had been different. My friends visiting have been on our journey since the beginning, and the two of them that I have known for longest were rocks in the long PICU days, often giving up time to come and sit in the claustrophobic room with my comatose baby on the brink. None of them have children yet, and as much as I love my mum-friends who save my sanity and make days of the week go quicker and more enjoyably, it is also refreshing to be with caring childless friends who don't have the worries, competitiveness or strains of child development, or the lingo that goes with it. Questions or comments were made innocently, curiously and sympathetically.

"Why isn't she walking yet?"

This is a question which normally riles me, brings my defences up and prickles at my soul. Yes, I know she is nearly 2, I know all her peers are walking, I know maybe she "should" be. But actually, today it didn't make me cross or upset. I explained about the prematurity thing and corrected age and that the repetitive illnesses have delayed development on top of any genuine delays. I explained about the muscle tone and that that was why we had multiple input (which I think baffles many people, because Wriggles looks so perfect they can't imagine why she would need it) and that we were still sort of in limbo to see if it was worthy of a diagnosis that may have more long term implications or whether it would sort itself out. That it may prove to be more positional, more muscular, more structural or more neurological or a combination of some or all of the above.


We all looked at the happy squwarker, who was troubling the book box.


It wasn't bothering her.

She didn't care.


Everywhere we go we receive compliments as melts everyones hearts and charms the socks off people. She really is the most lovely little person I could ask for, and I know our family and "urban family" of extended friends all cherish having her, us, in their lives. When you think of a medical problem, or situation, or label, a certain stereotype can spring to mind. Before this whole journey, I'll admit maybe I was biased to. But over the last 22 months, everything I ever thought has been challenged and I've drawn up a whole new set of preconceptions, of expectations and pleasures. Seeing beauty in things and people and celebrating wonderful children who might otherwise have lead very different parts. We've met those with far more severe limitations and those like ourselves who straddle the border between one camp and another. Those who may well have been in for a much-rougher journey but by miracles of fate and luck, have actually bypassed any hardship and unexpectedly followed a very expected pathway. And all of their parents feel the same way about their children as I do about Wriggles. 


It's so easy to become pre-occupied with labels and names, and sometimes they are necessary and very positive. They open doors to help, provide support for everyone and give answers. Sometimes though they can overshadow the person that has been labelled though. The smiling child.


As I explained today, I can't predict where our future will take us. Sometimes I suspect it is one thing, and sometimes I think another. I'm not sure I would be overly surprised either way as to getting answers or not getting answers, especially as our wonderful physiotherapy team have always been very gentle and honest with us. I have to put my faith into a professional which although I can grasp the basics of, have no idea of the more technical or complex aspects. I can put my faith in my little girl: that bit is easy. But strangers? Will they know how special she is, how much she deserves? That is the hard bit. I can take not knowing when things will happen because I trust they will. I just want everyone to see the best in my happy wrigglebottom whether she gets a new "name" or not.


What would you call me?





Monday, July 2

Accepting

Another appointment, another referral.

Sigh.

This time, orthotics. To be fair, it has be brewing a while and the initial referral was made a while ago, then cancelled, and now have been referred again. The physio is happily, delighted that Wriggles is pulling to stand and cruising. It is so lovely to see the professionals involved are really responsive to changes, as if they were family members or friends. The glitch is the old high muscle tone again. It has improved massively, so the hope is that with a helping hand (or foot) from orthotics we can avoid too much intervention. Her right leg which has always been the limb most affected, goes onto tip-toe and the other leg is overly flat-footed which now confusingly smacks of low muscle tone. "She always HAS liked to be confusing," our physio mused. It looks as though until this problem is sorted out, we will not be seeing any unsupported walking as essentially her legs are not strong enough to bear any weight let alone create movement.

Apparently we are likely to be looking at three options.

Option 1 (our physio's preference): supportive or modified shoes to help her feet stay in the correct places and in turn support the ankles which will align the knees and help the hips.

Option 2 (apparently likely to be orthotics preference): splints. Possibly for one leg, possibly for both.

Option 3 (a good idea but our consultant is too good at sitting on the fence for this probably): medication to control muscle tone and eliminate any spasms. I suspect because although Wriggles' problems delay her, they are really relatively mild compared to other children, that this will rule this out. Muscle relaxants seem very proactive for our chilled out medical entourage and I am not sure without a hell of a lot more information how I feel about them. 

I know when the appointment letter comes through I will feel a little bit deflated and a bit sad for Wriggles that yet again, there is something different happening for her. But on the whole, I am glad that things seem to be moving in gaining support and exploring options relatively early to hopefully ensure the older pre-school years and the future is smoother.

As time moves on, I am accepting that the magical "catch up by 2" is unlikely to be applicable to us. Wriggles is doing FANTASTICALLY and there are many areas which I have zero concerns on, but there is no way we will be getting discharged anytime soon. Her current notes record global delays and her feeding and dietary management is still very much a muddle. Ironically, when we left NICU, the consensus was she was "fine" and we would be one of the lucky families with no problems;  a clean bill of health and no developmental glitches. I know it has slightly surprised everyone who has known her since birth or the early days that she is still accumulating both referrals and needing a fair amount of input across multiple areas which will continue to be the case for the next little chunk of her life. I am not expecting to be given a specific diagnosis anytime soon or even if there is one. I suspect prematurity at least indirectly is the root of all of the discrepancies throughout development and that our recurrent admissions to hospital are also playing havoc with getting things moving (literally).

It is a bit of a shock initially to discover that what you imagined rearing a child would be like is actually going to be accompanied by lots of other things from guilt, pain, sorrow, nosiness from others, tuts, opinions, always opinions, and an endless list of appointments and professionals who have suddenly moved in as part of the family. But then again, raising any child is a bit of a foray into the unknown, whether they are a glowing picture of all that baby manuals illustrate or otherwise. The generic e-mails we get and bulletins "Your baby is now 21 months! He/she will be talking in sentences, eating five course dinners of nutritious organic fare, running around and restoring world peace in all corner of the globe" are enough to frustrate any parent who is doing their best only to realise that they are not the ones with the entire control. You cannot force any child, far less one with complications, into achieving beyond their means, beyond their time.

Would I like it if Wriggles walked? Probably, yes. Do I care that she doesn't? Not really, no. Sure, in a 100% hypothetical world where prematurity, disability and developmental setbacks don't exist, that would be super thanks. But they do, and they can affect you, or me, whether we knew or anticipated it or not. It doesn't detract from a child's perfection or innocence. It simply carves out a different path for them to walk, and as I remember all too often, that path nearly wasn't there at all.

As we head towards Wriggles' second birthday, we are slowly gathering in more professionals. At 1, we had our neonatal consultant and a physiotherapist. At nearly 2 we have traded in our neonatologist for a paediatric consultant who also doubles up in neurology, a dietician, a speech and language therapist, our beloved physiotherapist and now an orthotics personage and it is likely we will also gain a respiratory consultant. Proof that you can never plan life. I never expected to have a child with a label, either temporarily or long term. But I wouldn't swap her for the world.

Hands off: she is mine

Friday, March 2

Star Patient

A proud moment today as Wriggles crawled onto the trampoline at our rebound therapy session and her physio Jemma exclaimed she was her "star patient". This is brilliant news and such a boost, after more weeks of food refusal and a bug creeping in. Although Wriggles is the most able member of the group, it is still lovely to hear that other people are just as proud as me and see ever little change as a huge cause for celebration. The extent that the hydrotherapy lessons have helped Wriggles explore her legs and strengthen her torso and core muscles has surprised everyone.

Thursday, January 26

Hydrotherapy

Well, I have dragged out from the abyss that is my Spare Sock Drawer (a drawer full of holey, odd and threadbare socks and baggy tights and unsuitable pants For Emergencies Only-we all have one don't we....don't we????) my swimsuit, untouched for years, and laid it out ready for tomorrow. I have bought a miniature swimsuit from the Wriggly one (actually I've bought two as she is sort of between sizes and I didn't fancy the parade of getting a baby to try on a swimming costume in the changing rooms, that hates getting undressed/dressed at the best of times. Also, I don't think the Newcastle is yet ready for my tuneless rendition of Old MacDonald/Wheels on the Bus mash up, which at present is the only way to soothe said screaming not-so-infant) and even found a spare towel. Because tomorrow starts a round of hydrotherapy.

I am a bit nervous.

I suspect the last time anyone saw my legs outside encasing of jeans or woolly tights was probably slightly under two years ago. The last time someone saw me in a swimming costume, god help them, was errrrr quite a bit before that. I did go swimming* as a student and Wriggles has baths on a regular basis, but we are yet to brave the waters together. I am slightly nervous about dropping a slippy baby. I imagine it will make a very poor impression. Last night we had a "trial run" in a very deep bath. Wriggles was quite skittish at first but didn't hate it which bodes well. I am more nervous about catching the correct bus in the morning as we (well, I. It is definitely my fault) are pathologically late for everything, and also getting on said bus as the bus drivers in my area have a vendetta against pushchairs. 

Apart from that, it should be grand. Hydrotherapy is essentially a very warm swimming pool, around body temperature I think, to do exercises in and help decrease muscle tone and increase muscle strength. (Hydrotherapy is also a bit like colonic irrigation-but that is a different kind and one I definitely hope we will not be subjected too) It is said to help with a vast range of ailments and conditions and help build up physical strength. Hopefully also relax slightly stressed mummies! Wriggles has had regular physio since about 32 weeks gestation, still in an incubator in SCBU for Froggyitus**, a common prem condition, and continues to have it as her development is a bit erratic in areas. 

We are very lucky in that our community physio team is very proactive and the two physios we have seen have been utter sanity savers. Not only patient, but also very informative and willing to spend that extra bit of time explaining things and answering all of my pestering questions and deciphering doctor terminology. I like the more holistic approach they take also, rather than "Oh I'll just transfer you to so-and-so....." and they way they are willing to chase up other people!

It was a surprise, mostly pleasant, to be able to access hydrotherapy. They do a Pre-School Program which at just shy of 18 months Wriggles is now eligible for. She shows signs of high muscle tone as well as Chronic Froggyitus and still is not able to bear weight even with support for more than a millisecond. Neither I nor our physio have doubt she will get there, but given there was a place, it was deemed A Good Idea to go for early intervention and try and kickstart some mobility and increase her physical strength, which is lacking in the lower limbs.  It just feels a bit weird to have to go along to these things. We had such a relatively easy ride in SCBU that the aftermath was a rude shock and I still have a surprise every time I am reminded my baby has some delays and slowness in development that either could or could not be significant in some shape or form. Like many other things, you never expect it to happen to you. It hasn't stopped me worrying about the future, but I am grateful for the present, which I think she is doing very well at!

I may craft some medals out of left-over chocolate money to get into the Olympics vibe...




*this is a bit of an exaggeration. The swimming pool near my friend's house did a "Swim Disco" on Friday nights were they stuck on lights, music and a mirror ball and opened up the Sauna. I would do one or two lengths and then me and my friend would stick in the sauna gossiping until our skin felt fried and we escaped to the pub.
**NOT a genuine medical term, but when said prem splays limbs out like a mad frog. Premature babies lack the ability to work against gravity, meaning that they cannot move between the stretching out and curling up positions. This is why positioning is so important, especially in the early days. It recreates positions in the womb, rather than letting the baby lie in a heap which is not very comfortable and will add to muscle tone problems.