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...

Pain and OT

Tiddler had an OT appointment today. The therapist attended her playgroup that is run by the local family centre for children with additional needs.

She was really pleased as I explained how someone seems to have "flicked a switch" and so in recent days Tiddler has been responding to pain almost without fail. The OT observed it herself as Tiddler rolled off a mat and hit her head off the floor and burst into tears. A few weeks ago she wouldn't have flickered a response. Amazing.

I also reported how her head banging seems to have improved, I almost didn't want to say this out loud as I am worried now I have cursed it and she will return to headbanging with a vengeance! I explained that there seems to be a direct link between Tiddler not wearing her Piedro boots and her refraining from head banging. Weird I know. I don't get it myself, apart from perhaps that having boot-less feet is just not giving her the feedback that my sensory seeking daughter needs so she is giving up quickly.

So why, why all of a sudden are things clicking for Tiddler? The OT didn't know... she said it could be a combination of the OT therapy and exercises I have been doing as well as perhaps her development now being appropriately advanced (although still delayed by approx 6 mths).

There are still outstanding issues- she still arches a lot and bangs toys on her head. Feeding is a massive area of concern for me. More of this another time.

Other good news very recently has been the DNA results from the Geneticist. Tiddler does not have either of the (quite nasty sounding) muscular disorders that were tested for. Relief, obviously- but it still means we are without a diagnosis and still wondering what exactly the future will hold for Tiddler. As I sit here typing now though, the signs are all very positive and I make no apology for enjoying this moment.

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...

Misfits or fraudsters?

Tiddler has come a long way. In our darkest days she has been tube fed, had lumbar punctures, canulas in her head, tested for all manner of chromosomal abnormalities, even checked that she had shoulder blades. She is no longer tube fed, has no chromosomal abnormalities and fundamentally is well.

Why then do I feel like I do? I have recently come down from the high of Tiddler's latest discharge from hospital, her feeding VASTLY improved and the Paediatrician being pleased with her.

I met up with some Mummy friends over the last couple of days, its the first time we have been in a group of same-aged babies for about a month. I have found it hard. I know its important to get out, to let Tiddler interact and see the other children. But at what cost? Sometimes I wonder if its worth it.

Some of the others are crawling, some are standing, some are cruising. Tiddler can't sit. Well- she can actually, she has started to fairly recently, the problem is she won't. I think its too hard for her as her hypotonia (low muscle tone)means she doesnt have the control in her trunk to sit very easily. Actually, if she could just walk she would be a lot happier as her legs are great and operate totally normally. Clearly though, you can't walk before you can sit. Thats probably the most visible difference. One of the Mums suggested a group photo of all the babies sitting, I literally felt dread as I knew Tiddler couldn't sit. I wanted the earth to shrink us up, I didn't want this difference to be so glaringly pointed out. The photo didn't happen, thankfully. I need to get over this sort of thing.

She is- of course- a Tiddler hence the irritating "Was she premature?" question referred to here. Weaning is slow due to delayed swallow, a strong gag reflex and her low muscle tone. She will be a Tiddler a while longer!

BUT, she's not poorly now, she doesn't have a life limiting condition, she is happy, on the button intellectually and a babbler bang on course. So why do I feel as I do? I feel guilty that I feel like a misfit. Tiddler has left hospital whereas others did not.

We have been offered a place for a couple of hours a week at a local childrens centre for children with additional needs. I feel like we don't fit in here either because thankfully she doesnt have a serious illness or disability. I feel like a bit of a fraud. I also feel like a fraud for tagging this blog on the "special needs" section of Netmums. Why? Is it because I haven't come to terms with Tiddler's health problems or is this just symptomatic of the no man's land grey of being without a diagnosis?

So yep, we are currently without a diagnosis. Tiddler is still under a Geneticist and the belief is that there is an overarching reason for all of her health issues but that we don't know what that is yet. Nor do we know when we will know! It may be that we never get a diagnosis for her, as I have recently learnt that this outcome is more common than you would think.

We just don't fit in. I have to get over it I know I do. I suppose the camp we fit in at the moment is the "without a diagnosis" camp! I am not good with grey....