Bright as a Button

Yesterday we had an excellent and slightly rare meeting.

Before Christmas we had a review with SALT (speech and language therapist) who ended it with "I'm not really concerned but....*trots out not one but two further referrals concerning lack of speech*". I was left thinking, jesus woman, just SAY IT-it's alright, I had actually noticed that most two and bit years olds have more than about 10 words on a really good day and thus things weren't running as smoothly as they could! It really frustrates me when people try and sugar coat things before ramming another thing through that just highlights you're in a pickle. I know they do it not to scare you silly and set off  the presence of the almighty (and frequently wrong) Dr Google, but then what actually happens is that you just get a bigger unpleasant shock when surprise, surprise, the next blunt-er professional you see says, "Do you know your child is delayed ...*insert delay shocker here* months?".

So anyway, we were referred to one speech parent & child group and also to the Early Years Support team, who are similar to portage. We are still waiting to the former as there is a waiting list and we had the latter meeting yesterday. It went better than I had hoped. Essentially, it was a play assessment to judge Wriggles' maturity through play and catch a glimpse of what amounts to her learning abilities and to get an idea of her intellectual capacity. Although speech does come into it, it helps to know if you're looking at a child with delay in all areas e.g. immature speech and some cognitive delay or immature speech on it's own. I was fairly confident that Wriggles is more or less on track cognitively and definitely for corrected age; then again I think the sun shines out of her arse so am probably not the best objective judge. 

The meeting was off to a good start when H, the EYS (Early Years Support) worker said Wriggles' reputation had preceded her and she has heard for months from her colleagues who know Wriggles through physio and Splish, Splash, Bounce that Wriggles is simply a sunny delight encased in a mad toddler. Cue first proud mum moment. Together with our SALT, we sat and watched and interacted with Wriggles playing around the room as well as vaguely discussing her history, what else is going on health-wise for her, future plans for nurseries and her communication boundaries. Pretty quickly, H said she felt that there was very little they could do from a referral point of view right now. Wriggles was clearly "as bright as a button" (second proud mum moment) and was demonstrating a good overview of play, both independent and social and seemed to have a good grasp of concepts, problem solving and memory. She did discuss with our SALT, C, about possibly referring us to a group of children with language delay just on single words (definitely us. I will fall over with surprise when Wriggles strings words together) but after the pair of them talked about it, it was decided that although that fits Wriggles' language needs, unlike the rest of the children currently in the group she doesn't have the cognitive delay also, so H felt the group would not push her enough as she needs appropriate input to facilitate speech. 

What this all essentially means, and the main thing that came out the meeting, is that when we come to looking at playgroups, nurseries and school we are looking at going into mainstream establishments. We will stay on EYS books so that when the time comes they can help us pick the most appropriate places and broker any meetings, alongside physio and the community nursing team. Depending on progress, it will need to be liaised to ensure it is a setting compliant with Wriggles' physical needs (which physio would mange, maybe by providing a walker or other mobility aid and possibly some assistance at times) and also a place supportive of Makaton and BSL signing as this still plays a big part in our lives and routine. I had worried that the physical and language delay might hold her back, and in one way it does. I have noticed, in her correct peer group, Wriggles does get left out physically because she hasn't the ability to run off, jump, move around in great strides-she is reliant on someone or something to move her. In a slightly younger group, it is still an issue but less so as slightly younger children don't bat an eyelid about crawling around or having a mum-walker whereas already I have seen 2- and almost 3 year olds 'baby' Wriggles in group situations because she seems at first glance, slightly more babyish in her movements or exchange of communication. But in another way, this meeting affirmed what I hoped to be true, that despite having some extra hurdles to overcome, Wriggles, possibly with some extra support and the right setting, should be able to settle nicely in her peer group and not just cope but thrive. H noted that through play, even though she doesn't have the speech currently, Wriggles demonstrated enough understanding and interest to be more than able to "join in" even in a less vocal capacity. Of course this is very early days, we haven't tried an educational setting yet and there is the whole other issue of needing feeding and a few sensory quirks Wriggles has. But one step at a time.

Because right now, I'm doing a jig on the moon and no-one can spoil it!*

This is possibly the first time we have had a meeting and not come out with another referral or after having another issue flagged up.

This is a great step when professionals note down Wriggles positives as well as problems.

This is one of the first times, if not the first time, I have come out thinking maybe, I am doing something right after all. Maybe I haven't buggered things up for her by either prematurity (thanks a bunch, womb), my own struggles with my mental health or by not being super mum with a play date here, an award winning toddler group there, French lessons, baby yoga, yadda yadda yadda. 

This is a moment I will savour and remember next time some ignoramus says "So, isn't she walking or talking yet? Why?". 

We might not have left behind prematurity or medical needs, but it is so nice to celebrate something for a change with those who oversee her development. And by the way, "nice" doesn't even do it justice. It is EPIC.




*don't you dare. Let me have my minute!

Fake Snow

It snowed A LOT up here. It has been frankly a nightmare to get anywhere; five minute walks lasted over 25 minutes getting repeatedly stuck in the snow and ice and I became thoroughly disenchanted with the white stuff. Being in a block of flats, we are without back garden to make exciting amounts of mess and I have felt too tired  and grumpy  all week to make wildly creative things inside. I read Mummypinkwellies posts about snow painting and bringing snow indoors and Edspire's snow play-dough and felt really I should make some effort. Not wanting to see any real snow again until the tail end of the year, we went with a decidedly fake option. I dragged Wriggles to the playground yesterday and she understandably got fed up pretty quickly. I don't blame her, it was cold, wet and there was no one else around (possibly because they had the sense to acknowledge the former two reasons). So today I some things in the messy play table and let the small child loose. 

Not fun anymore

We used value cheap-as-chips plain flour (that was slightly out of date anyway and needed using up before I mistakenly poisoned myself via baking) and some icing sugar which smells nicer and is slightly whiter to give it a good snowy appearance! Then, the poor Playmobil figures got very messy. 

I helped it "snow" with the aid of a sieve...

And that was some peace for all of fifteen minutes or so!

Toddler activities do sometimes put me off because the time spent preparing and cleaning up normally is vastly more than the time spent doing. Wriggles has a very low attention span unless it is something familiar or that she can get obsessed with. This one we spent about fifteen minutes playing with and then came back later intermittently through the day. And when it comes to cleaning up, it can go in the bin and the remains get attacked by the Hoover. Hooray! 

Splish, Splash Bouce

We've all had our grievances and gripes about the NHS. It can get things wrong, from a hopeless lack of GP appointments to a waiting list longer than your arm, my arm and so-and-so-over-there's arm put together for any appointment not deemed urgent. And as Beadzoid wrote this week, it can get things badly wrong. But today, I just wanted to have a little rave because it also can get things right. And when it works, it works really well and makes a difference to the life of normal people. 

This morning, we went to a group arranged by NHS community paediatrics in our area called 'Splish, Splash, Bounce'. I am lucky to live near a big teaching hospital with a huge and greatly respected paediatric department that coordinates community outreach exceptionally well. Today we started an 8-week course of hydrotherapy and rebound treatment (physio on a trampoline). It also has some other umbrella services that run alongside this group and if nothing else, is a brilliant resource of meeting parents in a similar situation. The group is especially for babies and pre-schoolers with additional needs, particularly those with physical disabilities from the milder end of the scale like us to the much more severe end. 

We went last year, and whilst I enjoyed it and Wriggles loved being in the water, I always felt out of place. We hadn't come that near a diagnosis yet and as she was only a year old I had a horrible feeling that maybe I was imaging things and making a drama out of everything, using her prematurity as a shield. Last year other group members all seemed to have "proper" diagnoses and recognised conditions under the belt. They were all more of a toddler age and their parents seemed so more savvy-in hindsight because they had been dealing with this longer. This year, we are in that position and in the year that has elapsed we did get our diagnosis which in part has made things a little easier in that I don't just feel like a mad moaning woman with "a feeling in my bones" that something is amiss. We have found that secret world of multiple therapies, medical assistance and untangled some of the whats, whys and hows. In many ways, I am still very new and naive to this all. I am still at time struggling to accept, to find where we fit in. But this year, I felt much more comfortable and also more aware of things and in turn, more grateful services like this were on offer to us. Last year, a niggling part of paranoid-me thought they think I'm making it up, they're calling my bluff inviting us to special needs groups to see if I crack and suddenly decide nothing is wrong. Now I have researched more thoroughly, read up more, tried to access more things with varying degrees of success and accepted that my child needs some extra help, and I know all too well that services are greatly strained and really, you don't get offers of things that will not be beneficial! The group is number-controlled so the children don't get overwhelmed and so the physiotherapists can pay due attention to each child. As well as the physios present (in water and on trampoline) there are early years workers whom are like portage workers and people trained in speech & language and occupational therapy. This means that using signing as Wriggles does, does not stand out but is accepted and encouraged and there are people on hand to teach new signs. And some of the group leaders even have an idea what she might be going on about, rather than just waving her arms wildly whilst gabbling! Between the hydrotherapy and the rebound, there is a snack time which for us doubles up as feeding "therapy". All the adults know and understand oral aversion and quietly encourage and support, rather than shoving biscuits in her face and shouting "corrrrr bet you're glad she doesn't eat a million chocolate buttons to rot her teeth like my one!". They offer a mix of snacks to try and explore different sensory reactions rather than trying to be the most organic/healthy/cheapest/trendy buffet as so many of the children have feeding issues. They don't bat an eyelid at giving Wriggles an empty beaker so she can be like the children who can drink. I don't have to explain a thing. It is simply, bliss. Last year I feared I was just a bad parent holding my daughter back. This year, I know I am trying until I am blue in the face but that our road is a bit jumbled up.

I would be happy paying to access a group, so to have it on the NHS is icing on the proverbial cake. It is such a relief to know that there are services to help both child and parents. There are so many stories of children being failed by lack of access to things that when you have a positive experience, like this, it makes you very grateful. We have had our own share of care that ranged from scornful to downright unhelpful and so opportunities like these make up for it a bit. It is also a reminder that the NHS should not just be viewed as a luxury. It is the National Health Service, not an add-on. Without it, millions of people would be left to flounder in both development and health. The NHS is not just about hospital procedures or primary care trusts, it is about making the lives of people more comfortable and facilitating Independence. It is about support as much as treatment. And today, it got things just right.




....and in true NHS fashion, I just recieved a letter through the post for our next respiratory follow up. Despite our consultant wanting to see us in under three months time, we cannot have a slot until June and even then they can't gurantee us seeing our resignated consultant. You win some, you loose some...sigh.

Aftermath

After Monday's letter about the MRI results, I felt hit by a ton a bricks. I don't know why exactly and to be honest a belligerent part of me thinks, look does there HAVE to be a reason? I think it is though because largely I don't have to daily face up to Wriggles having cerebral palsy. I really hesitate calling it a disability or special needs, but have been doing some thinking recently and I guess, like it or lump, that is what it is. At the mild end of the spectrum, but definitely something additional to your average cardboard box menacing child. Of course, we have the daily development delays and tube feedings and pretty frequent contact with medical professionals, but it isn't very often that the words 'cerebral palsy' are mentioned or an in depth discussion is called for. Alluded to certainly, and in many ways her treatment is plotted around it, but the words and discussion of the causes are often dodged largely because it's really not necessary to have a klaxon screaming SHE'S DELAYED! SOMETHING WENT WRONG IN HER BRAIN! I know she has it, doctors know she has it, nurses know she has it...why keep dropping it in conversation if you don't have to and it isn't going to help? The most frequent contact we have is with NHS physiotherapy for children who treat things holistically and symptomatically. So really, they are the ones who deal with it most closely yet because of their approach, it is beside the point what the diagnosis is because they concentrate on making things more comfortable and facilitating development and independence.

 So when we directly deal with it, it feels a bit weird.

It also brings back wave after wave of guilt. We don't know why she has it, but you can bet anything it is to do with her birth/prematurity. I know, in that rational world,I can't change the past and blame is futile. It doesn't stop the emotional sphere of the brain running wild though and slashing the bridges of sanity and reason you have built up. And normal parenting-guilt goes overboard. Am I being proactive enough? Too much? Should I be asking more questions? Looking outside the NHS package? Researching more? Forgetting more? When you start looking there is just so much information and like many things much of it is subjective and conflicting. So do you turn off and trust those caring for you whom you see every few months? Or do you try to forge your own path and hope you get it right? What is the middle ground and how do you stop going mad thinking?

I do my best not to dwell too much on the causes most of the time, the wording, the terminology. There is no point, it is irreversible and like so much of life, it is about what happens now that counts. The young developing brain holds so much plasticity that making an effort now can make a difference. It can't magically create strength where there is none or suddenly whip up a new skill out of nowhere, it can't cure but it can help forge new connections and slowly build up bit by bit to make things just a little easier. So that is what I'm trying to look towards; to focus on. The future. That scary unknown future. But that scary unknown future I could influence. It is just the past has a nasty habit of coming up and biting you in the metaphorical arse when you aren't looking. And that is what I find tough. That and continually accepting our world is not the world other parents dream of. It is like having a secret key to a new world and balancing on wall between the two, moonlighting. It's not a worse place, just different. And after all this is pretty good compensation...

 

Monday blues

I don't like Mondays. If Monday sets the tone of the week, frankly I am done with this week already. 

Today we had our appointment with the respiratory paed. We missed our own paed, but got the other senior consultant who is also pretty good and on the same page largely as our doctor. The appointment was by and large, productive. Wriggles had a lovely time playing with the toy truck (future mechanic?) and all hell only broke loose when she needed to be weighed. Unfortunately she must associate side rooms with nurses as synonymous with blood tests and fear, as in seconds, my chirpy little bean was a screaming, rigid, limpet who needed peeling off me. She was so distressed she was stiff as a board and still crying to be measured, so the nurse wrote down "uncooperative with height". I bit my tongue. FFS, she's fucking terrified, not being naughty! She is 2 and has been through more procedures than many do in a lifetime! I know she only meant it in a jokey way but it really made me bristle.

The actual appointment was very thorough. The immune results are not back but will be chased with a letter to the GP confirming if they request a booster vaccine and if so which one, the feeding they are happy for me to manage with help of the dietitians ("and keep hoping"), her tonsil size was checked and we went over her list of medications and checked dosages. We discussed her sleep study and went over sleep history and patterns and they notes even static in the daytime, Wriggles is a noisy breather. This had got a lot better during the autumn but has slowly crept back more and more. The consultant confirmed he thought it would be beneficial to removed tonsils and adenoids. The tonsils are a moderate size and the adenoids are quite large, and we are not yet at 'peak growth' period. He added it may possibly help the night refluxing, as she sucks in her stomach muscles to help breathe when the adenoids narrow her nasal passages, and the extra abdominal work put pressure on the stomach which combined with a lax stomach valve and tummy full of night feeds can aggravate reflux happening. So whilst it is far from a guarantee, it is a bit of hope. I have also read other parents with food aversive children relating that tonsils being removed helped with food consumption and swallowing difficulties. Again, a sliver but hope but sometimes a sliver is all you need to keep going. I have all the usual concerns about having a general anaesthetic and surgery, but a tonsillectomy/adenoidectomy is a pretty common and standard op and aside from GA the only real risks are infection which in our case is heightened as she will not be allowed oral fluids to help the healing site. But as the consultant said, "I have only regretted not sending some children for a T&A, in 15 years I have never made a referral for one I have regretted or has had negative results." That sells it for me.

The thing which did deflate me was another mention of fundoplication; surgery to essentially wind the stomach top around itself to form a wrap to keep contents from refluxing up. This surgery has been discussed on and off since the summer when aspiration was really taken seriously and the feeding tube placed. If the surgery was simple, I would happily sign on the dotted line yesterday. Control reflux? Eliminate vomiting? Be my guest! However, unlike the T&A this is not so simple. It is more major surgery and there is a higher risk attached. Side effects are far more common and the recovery period can be fraught. It is one I have read up on over and over, and whilst I do see the positives and know it has improved things for many, it is not one that sits comfortably with me. That said, we are running out of things to control it. This decision is one that does not have to be made imminently; the doctors are still undecided on whether it would suit us so we have so time to hope either the T&A, diet, maturity or something magical help to control or better still improve things. We had a chest X-Ray to check for aspiration during the latest reflux flare-up so need to to wait the results now in the post. Letterbox, you will become my new friend.

Talking of letterboxes, one letter plopped through this afternoon. A surprise letter about the previous MRI-which had been a disaster and one I was told there were no results from that would be any use and would need repeating. So to receive some results, was a shock. There must have been an image generated that the neurodisability paediatrician could read. It did cross my mind that there was a mix up, but we have not had an MRI before, only the two cranial ultrasounds performed in NICU. The letter read "surprisingly, there are no structural abnormalities. We will discuss further in clinic". It makes me a little nervous that even our development consultant was "surprised". He was clearly expecting something, I was expecting something, pretty much all the doctors we have seen over the last nearly 18 months have expected that something would show up. So I should, in theory, be dancing on the ceiling. No bleeds, no PVL, no lesions. All in all, pretty excellent. But all I can think is, so what the bleeding hell is causing/caused cerebral palsy? Where, are my promised answers? So many things have been chalked up to something we will never know, is this yet, another? Her history frankly suggests that at some point there has been brain trauma. It doesn't help there is no existing antenatal records, but birth and subsequent events are a hotbed for being able to pick things and say, maybe that. An MRI was going to tell me. To pinpoint. To flag up. To answer my questions. It has just generated more. For CP and spasticity there is something somewhere. But not on this MRI. 10-16% of children with CP have normal MRI findings. Maybe I just have to accept that this is us. An MRI reflects the structure of the brain, not function. I just can't help feeling a bit cheated and full of questions to ask. Does this affect the prognosis, the treatment, the diagnosis? Does this warrant extra tests? Do we need to look at genetics, blood tests, anything else? I have a month until clinic. By NHS standards, a month is not too bad. But it is going to be a long month.

So tonight I feel exhausted. It feels a full on day. I am fed up with dealing with things on my own. Sometimes, just sometimes, I wish someone would make me a cup of  wine  coffee and hold me while I toss and turn all night and tell me it will all be ok. 

I am really fed up of seeing my beautiful mischievous daughter love life with all open arms and for life to not always love her back but deal card after card of yet another thing. It seems relentless. 

Less than two hours until Tuesday. Let it be a more uplifting day.

This week, next week

This week has been a funny old week. Not funny ha-ha, just a funny week of little bits and pieces, too much coughing for my liking and lots of thinking. We have an appointment with our respiratory paed who I really like on Monday; however much I like a doctor, I always get so nervous before appointments because pretty much anything can happen in them. Sometimes everyone is happy and that is it for months, sometimes they chuck in a surprise blood test (horrific, just horrific. The last two appointments came with surprise blood tests. Unfortunately they were very close together. I genuinely could not get Wriggles to put her coat on without a massive struggle and tears for weeks afterwards, the child was terrified of leaving the house), sometimes they review meds and sometimes they accidentally-on-purpose spring things on you. The respiratory paed has so far been very good. He has taken much better care of her reflux and (non) eating habits than previous paeds and his senior dietitian is an angel in disguise. Actually, the previous dietitian was also wonderful, unfortunately the paed she reported to didn't listen to her. This new-ish one though has her name on the consultant's letters which means she Is Important which is good. We haven't seen the paed for a little while now so will have some things to discuss.

1. Reflux. Bane of my life. Admittedly we are fighting off a virus now and cutting incisors which never helps, but since we last saw him we had one enormous flare-up before Christmas which very much affected her respitory system as well as playing havoc with her motility as well as a vomiting bug which left us with elevated reflux for weeks after it went. We are having a flare up again; not as bad as the end of last year but we are having problems tolerating the night feed which unfortunately contributes to half of her daily calorie intake as well as lots of coughing and some gagging and fountains of stomach contents. Every day for the last week and a bit, she coughs when I turn the night feed on at about 10pm and somewhere between 5am-7am near the end of the feed will wake up screaming and retching until she is sick everywhere. I've reduced the feed, tried watering it down as it is quite heavy (1.5 calories per ml, double a standard formula) and reduced the rate. Some nights she has been sick throughout the night too or woken fussing and in pain. The blue inhaler has never been far from her side as it makes her breathing go funny. For want of a better word, she starts sounding like a very angry choked up cat and has mild recession and tracheal tug present. Our community nurse is in the loop and was concerned about her aspirating on the reflux pre-Christmas. We sat it out and it eventually subsided. Hopefully this one will too....soon! We are on max meds and she sleeps on an elevated slope, so we are slightly running out of ideas of how to help it. I suspect that an entirely liquid diet does not help!

2. Results from blood tests at immunity. Last time, some bloods revealed despite being up to date with her vaccinations, her immune system was showing weaknesses for tetanus and pneumoccocus antibodies. They drew further bloods to determine which particular strains of pneumoccocus she was most vulnerable against to see if she would benefit from an early booster. There are two boosters you can get; Prevenar 13 and Pneumovax II. It may be that the antibodies she lacks are in neither vaccine, in which case I just need to pray she doesn't meet that virus anytime soon. It was a strain of this virus that landed her very poorly in hospital last August, so I know even at 2 it can do a fair whack of damage.

3. Sleep study. This we had done in November after several botched attempts. It went pretty well, nothing major happened and I had almost forgotten about it. The letter came through this week with the results in brief. Whilst nothing severe happened, there was evidence of upper airway obstruction and clusters of oxygen desaturation linked to 'central moments' which means apnoeas, where her brain forgets to tell her body to breath. I already know from the bronchoscopy that Wriggles has a hypotonic pharynx which won't help as well as large adenoids and tonsils, plus reflux is commonly linked to apnoea. The report recommended discussing sleep history and a good look at her tonsils and palate in clinic. I genuinely have no idea what the paeds will want to do with this study; file it away for now, request a repeat in a while, sit tight, ignore it, think about treatment... I wasn't gigantically shocked by the confirmation she does have some sleep issues, albeit minor. I know from sleeping in with her that she is a noisy, snoring, restless sleeper who sometimes holds her breath. It is not unknown for me to be up in the middle of the light with a torch, frantically checking her colour. Partly, I accept I am over anxious. Partly, I know she has a tendency to deviate from normal boundaries.

4. Oral vs Tube feedings. Unfortunately, this is one area that has really lapsed. At the last appointment, we were in a 'curious' cycle. Wriggles was maybe trying up to almost 10% of her intake from eating; mainly fromage frais and Quavers. Since then, we have moved back into a state of being really aversive again and what she will even put to her mouth has dramatically reduced (mainly Ritz crackers and cheese flavour rice cakes). If we are lucky, we get maybe a few nibbles a day-teeth marks really. She will still handle food, and sometimes will look enthusiastic...up until the point it goes to her mouth. Then it is abruptly dropped like a switch has been turned off. The only time she will try things is generally if a LOT of distraction is offered and she ignores the fact there is food. Incentives only last so long and there is no consistency. I suspect he is keen to think about dropping a feed soon to try and stimulate hunger. Since we last saw him, I have played around with volumes and reducing intake by a little and stretching the time between feeds, all with no results so I am a bit more nervous about this. 

5. The physio has mentioned she would be curious to try a trial of Baclofen, a drug aimed at reducing spasticity in cerebral palsy patients. It is essentially a muscle relaxant. Our other paed has been informed and would be the one to prescribe it. Allegedly he has been going to give me a ring for the last few weeks about it. I would however prefer to run it past our respiratory paed, as I respect his opinion slightly more and he seems more in tune with Wriggles. After reading up on Baclofen, I would rather not go down this route at all. It should be simple enough to say that to a medical professional and have them say back, yup you mum know best, fine by us. They don't. They argue. A LOT.

And whatever else he wants to check off! So far he has always been very supportive and I hope he continues to be. It has taken such a long time to find someone who seemed to genuinely care and make an effort. Back when we met him, when Wriggles was very poorly in the summer, he stayed far beyond his hours talking to us and supporting us which meant such a lot. Every time we meet someone I trust, I get nervous that they will let us down. I don't know what is best, I am not a medic. My job is to fight for the best care. I know I will not stop trying because I love Wriggles. Professionals don't have that incentive, we are names, numbers, files, cases, patients. They can easily forget things, get things wrong and not be there to pick up the pieces. So many times we've been sent off on the wrong tangents and spent months trying to get back to the right place or track down the right doctor. Let's hope that is behind us now.

Please keep me well, I have lots of menacing planned!

Let it snow, let it snow, let it snow....

It snowed, it snowed and then it snowed some more....

 

...so we had to get out to the playground! 

 

Blended Diet

Wriggles gets near enough 100% of her nutrition and calories from formula; always has done. With a very slight window of exception, most of her life this has been formula carefully considered by paediatricians and medical professionals and one picked to carefully meet specific needs. We have been through a fair few in our time, found some we liked (as much as you can like commercially produced milk derived 'food') and some we really didn't. Picking a good formula was important with the tube. In some ways, it opened things up as dietitians will readily admit some taste vile so there is little help of children taking them and having a tube eliminates taste as an issue. In some ways though it highlights how important getting it right it. There is so little room for error with children, especially those in fragile health. We have been having a year-long dalliance with high calorie formula to meet Wriggles' weight needs and after having worked through much of the Paediasure range, seem to have it right. 

Recently though, I have been reading about blended diet which is much as it says on the tin. Real food, blended to go down the tube. Mostly, I am pretty at peace with Wriggles having formula albeit through a tube sticking out of her tummy-needs must and all that. She grows on formula. She develops on formula. She digests formula. A large part of me is apprehensive to rock the boat. Why change what works? I haven't yet spoken with a dietitian about it, but I suspect they will say the same. Formula comes with statistics. Formula has studies about it. Medical reports, numbers, averages, facts. Formula is easily measured, it is tailored down to the last 0.1ml. It has a neat little box on the label telling you all the information. I just have two little niggles that I want to at least experiment with or really look into:

1. Although medication seems to largely control Wriggles' reflux, it is far from going away and lying dormant for long, and when we do have flare ups they wreak absolute havoc. There are no formal studies about blended diet and reflux, but huge numbers of parent (and increasingly health professional) anecdotes are testimony to the fact that switching to a blended diet instead of formula can really improve on, if not eliminate the worst of reflux. This won't be true for all children and all diagnoses, but it is something I am very curious about. When we are in a good period, things are ok. When we are in a bad period, there is all manner of projectile vomiting, crying, coughing, gagging and there are still fears about aspirating on reflux. A very good reason for wanting it controlled a little more than it is now. I'd say it is about 70% controlled now. Not bad at all, but 30% is still too much for me especially when it involves dragging the respiratory system into review again and frankly, why would any child be motivated to eat when they are being sick?

2. That eating thing. Sometimes I feel it can be all I go on about, but really it is SUCH a big thing. So far, Wriggles shows no motivation for scoffing. None. What if, even partially, feeding her actual food down the tube stimulated something somewhere into encouraging her body to at least try? I'm not talking whole meals, just curiosity, tastes, most importantly a want to eat for herself. Not because I'm trying to bribe her by letting her holding my keys in exchange for licking a spoon but a desire to satiate the tastes, the smells, the textures. A number of parents have reported very favourable turn around in their children's attitudes to food since trying the blended diet. I know at one point, we will have to look at tube weaning. I have spent hours reading up on this to the wee small hours and am so torn by procedures and philosophies on it. Little of it sits entirely comfortably with me, yet. So what if something helped her there by her own accord first? Sometimes I think, well we've nothing to loose. If it doesn't work, it doesn't work. But you don't know without trying.

Really, blended diet should seem the most natural thing in the world. Humans are made to eat food by whatever means, yes? But the opposition towards blended diet is surprising. Few professionals recommend it, fewer support it. Our community nurse recently remarked another patient she sees has tried it; she did say that it was brilliant for reflux but that the parents did it out on a limb without positive backing. Pages could be written for or against. Feeding is such an emotive issue, from a personal, parental or professional point of view. Nutrition is the essentially the building blocks of life for a healthy future, simply put it must be gotten right. But it is also so easy to medicalise and forget the pleasure it brings to the giver and receiver. 

So I have been experimenting. Just a bit. Nothing radical.

I feel so naughty.

I keep expecting a dietitian or doctor to pop up screaming "PUT THAT SYRINGE DOOOOOWN!".

I knew I had become a bit institutionalised by our hospital history but was slightly taken aback.

I have my defence ready. "It's just a bit of porridge, guv." No. "For chrissakes it's just food." "She's my child!!!" "If she ate this with her mouth, you and I would be dancing a jig on the ceiling!" I think I might have over-thought this.

So far, I have only experimented with swapping one daytime bolus feed. I have kept the same calories and as near to the same volume. I haven't tried anything I wouldn't give her orally or any complex flavours. I just want to see how she responds to digesting anything but milk and the odd Quaver. We've only been doing it a week and I'm so far sitting on the fence as to if we carry this on or if we might be some of the lucky ones to reap results. But one thing, I can't begin to tell you the joy, the excitement of mixing porridge, of smelling real fruit, of looking at flavour, colours and smells. It excites me, putting it down the tube. It really makes me happy that it is real. 

It makes me hope that one day I will be making these concoctions not just for a tube and syringe. Maybe I need to get out more, maybe I need to stop looking so far ahead, maybe I need to stop caring about food...but for now, I'm just enjoying feeding my daughter a little more.

A little bit of this and a little bit of that

It's been a little quiet on the blog front for the last few months.

Sometimes, life feels a little like groundhog day. We get up, I try to feed Wriggles, Wriggles refuses to be fed, we do toddler stuff, there are stamped feet, we go to bed. It is TIRING. I have just felt so tired out and beyond Wriggles, lacking in any motivation, control or interest. I can't switch off very well and take a long time to go to sleep. This has resulted in going to bed later, and later. And still staring at the ceiling. Wriggles is sleeping very well at present (aside from waking at dawn to gag and vomit all over her bed; thanks a bunch, reflux) which means she is waking later than normal. Because I feel so lethargic, I am also waking later than normal. Most days. Whilst here and there, this is a blissful treat, it is now throwing my intended day(s) out of kilter and by the time we are both dressed, cleaned and fed it is continually pushing 11am. Not great at all. Plans disintegrate, confidence and sense of accomplishment takes a nosedive and suddenly a circle forms quickly, leaving feeling trapped and paralysed to do anything about it. It is so simple: go to bed earlier, adhere to alarm clock, get up, eat properly. I've even got a pack of Sertaline lying in the fruit bowl. Before Christmas, I went and argued with my GP that I needed something to give me a kick start again, that although I was coping, I didn't feel too far off from not coping.

Christmas was a welcome break. A new environment, some commercial and warm fuzzy hearted glow, some spare pairs of hands and some mince pie. It ended, and suddenly normality loomed large again and everything was back to how it was before. I know now more than ever, I need to be firm with myself or I will loose days, days and more days to these feelings. So a belated resolution starts now. 

In other news, following not one but two referrals from speech therapy, Wriggles has slowly started to attempt to accumulate some words. We have nearly 10 words (some needing serious translation) which is a good 6 more from when we last saw SALT. I don't think this will excuse us from any therapy referrals but it does fill me with enormous pride and as little bit of relief that we are getting somewhere! It also gives Wriggles and excellent new game of 'hiding' in the kitchen cupboards waving "buh-ba-buh-ba" (bye-bye. Obviously) then flinging the door open shouting "BOOOOOOOOOOOOOOOOO!" giggling like a loon. I think she definitely appreciates her new vocal addition to this game.

I have also been doing some reading on blended diet, which I will definitely blog more about. I don't have many grievances about formula. Heaven knows, Wriggles has done phenomenally well on it. It has provided all her nutrients and energy to grow whether by bottle or tube so I am quite happy with it. It's just the eating thing. I would so love to make progress this year, so have been looking at different things and hearing other tubie-parents testimonies. 

The beginning of this makes me sound very mopey. I haven't been solely wandering aimlessly wringing my hands. Here is some proof we have also had some fun:

Playing in the dollhouse

Playing ducks

Is it a boat, is it a bed...? Answers on a postcard!

52/52

So, it's a bit late but here are the remnants of my attempt to taking a picture every week last year. Of course, I took tons more than are here but so many are blurry, so many are mundane to look at but so special to me and sometimes it is nice to keep a little to yourself. I love pictures, as charting a journey. They are so evocative of memory and emotion. When we were in NICU, I hardly took any photographs; something I really regret now. Now, I might have over 20 photographs taken on any one day yet I don't think I even have 20 photographs of a very important yet vulnerable two whole months of Wriggles' little life. 

2012 was an eventful year. It was a year that saw Wriggles crawl then cruise. It was a year we got some medical answers and a whole heap more equipment. It was a year I made a bit of a breakdown and was made redundant. It was a year we had our first birthday party invites and really made some good mum-friends. It was a year that was really scary but also really incredible. There is a lot of me which thinks "2012: the year we got the feeding tube." After all, that is SUCH a big thing. It has made a difference to our lives, from health to routine, not to mention feeding. It is something that I still have very mixed feelings over but I know was the right decision and ultimately one I don't regret and I hope an older Wriggles won't either. I don't want to remember 2012 as the year of the tube though. It was the year Wriggles grew up in spades. We are a whole 2 clothes sizes bigger, two kilogrammes heavier (ish) and so much more of a baby than a little girl. During the summer months, it was becoming increasingly obvious the developmental gap between Wriggles and her peers and those younger. Although she hasn't gained any monumental new skills or milestones since she turned two, she seems more grown up and while in some ways there are big gaps, in other ways her play and social nature seems more sophisticated making it impossible to mistake her for not being a toddler. She might be doing things at her own pace, but by heck she's doing them.

a belated 51/52

Christmas Morning

New Year

I cannot believe it, but we are fresh into a new year.

I must admit, although part of me is delighted for the feeling of a new start, part of me is also nervous about the year ahead. I have made no resolutions as such, apart from to be a bit more organised and have more patience, but there are several things I would like for 2013:

* to not hear the word "intubate (meaning to insert a tube to ventilate)" in any tense other than past. Likewise, as nice as some of the consultants are, I do not want to have a conversation with any of the doctors from PICU. Although we didn't actually make it through the doors this year, we had a very narrow squeak this summer and had our lovely experienced consultant not been on call, would definitely have ended up there particularly as PICU had stated three days in a row they were keen to admit Wriggles and spent much of the early hours of the mornings by her bedside drawing blood gases and frowning.

*to gain some confidence and loose some anxiety. I will always worry, but would like to do so with it being a little less rehabilitating and wreaking havoc on other areas of life and health. 

*to actually go on a summer holiday rather than spend it in hospital

*to overall, spend less time in hospital! (please, Wriggles)

*this one there is no time limit on, but I'm hopeful this is the year Wriggles will take her first independent steps. With the cerebral palsy and love of doing things at her own pace, I've come to accept that things happen within Wriggles' time-frame not anyone else's, but it doesn't stop me hoping. Less for me, more for her. She will be 3 this September and it is already becoming increasingly apparent that this gap in her development is affecting playing with her peers although to her credit this doesn't stop her from trying her best!

2013 also holds some changes we have to make, like moving as our contract on our little flat comes to an end. This makes me sad, as largely it has suited us down to the ground and has become our happy little sanctuary. Wriggles gets excited and starts flapping as we come down the road to it, and it just feels like home. Alas, the contract cannot be renewed so we had been start looking! Sometimes I feel ambivalent about our city, not least with the distance from family and impending cuts and then realise how much I have come to love and depend on it. It may all yet change, but I would like to think we are here for the long haul especially as we have made friends, both little and grown up. We might not see them every week, but the thought of starting afresh and abject loneliness fills me with dread. 
2013 is also potentially the year Wriggles can/will start pre-school in some capacity. I know we have at least 9 months until this, but I feel very mixed about it. There are so many worries I have, both about her development, if she will flounder, and also regret on my part that I couldn't bring her on alone. It is like an internal battle. Rational-me accepts that there are wider, medical problems which complicate everything as well as appreciating that many, many children flourish in varied surroundings and within the company of their peers. Irrational-me feels a failure that so far I haven't made her eat, I haven't made her walk, I haven't made her speech beyond the handful of words and so it is being looked to that pre-school will bring these things on. 
One of my biggest apprehensions is that this is likely to also be the year that our consultant is determined to try and make some progress with weaning off tube feeds and increasing oral feeds. Or should that be, actually instating any consistent oral feeds. At our last appointment, they acknowledged it would take years to sort out but that they would be disappointed if we couldn't crack on with some progress this year. Pessimistic as it sounds, but I suspect it will not be as simple as they think, ie. cutting tube feeds in the hope that hunger drives Wriggles to eat. If it was that simple, personally I doubt we would have the tube in the first place or use it to the capacity we do. 

But enough gloom for now. Right now, I have a very funny, inquisitive, loony toddler who is madly keen on climbing things, shutting Hedgehog's nose in the drawer and programming my washing machine. Every second I am with her, I don't have time for regrets or fear. Happy new year!