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...

"Let Her Enjoy her Childhood"- when Specialists and Friends collide

Tiddler's Paediatrician appointment last week went ok. She is, apparently, 6 months delayed in her gross motor skills, but on course with her fine motor skills. Intellectually, he said that it's too early to tell how her development will pan out as intellectual growth kicks in from about now onwards. I know we would say this, but I am pretty sure she is doing ok intellectually.

After my wobble following Physio the other week, I asked him whether he thought a standing frame at Tiddler's age was quite (too) young? He said no- she wants to stand, she is trying to stand... she needs us to give her a helping hand. Standing will also really help build up her muscle tone as she wil have to work against gravity. Ok. Fair enough. I trust our Dr completely so thats good enough for me.

However, its not as straightforward as this. The other night, I spent a lovely evening with a couple of close friends. One of which had had a couple of shandies. They asked abut Tiddler, I partially updated them- telling them about the boots that she was to wear and how much she had hated trying them on. Cue drunken slurry rant interspersed with : "I am not being horrible..." and "Don't take this the wrong way...."

Basically, this friend told me to just let Tiddler enjoy her childhood, that the Drs were talking "bullshit", that T would walk when she was ready etc and why are they (and we) rushing her. The fact is, she is not the only person who has said similar to us. I know she wasn't exactly sober, but I wouldnt dream of saying the things to her that she said to me. I wouldn't ever volunteer my opinion on how she should bring up her child. I sincerely hope I wouldn't anyway, drunk or not.

What are we supposed to do? If Tiddler is 6 months delayed with her gross motor skills then without a leg up- excusing the pun- she is potentially faced with being a very late walker. There is no suggestion at this time that she won't be able to walk. So surely we are letting her down if we don't give her all the assistance she needs, albeit at this young age. Obviously we have to trust the medical profession. We have to have faith in them and we do, although at times it makes me sad that Tiddler is so entrenched in the "system" and sometimes I just want to scoop her up and run away from all the meddling/ exercise/ regimes etc.

Things are difficult. They will continue to be difficult. Our life would be easier without contradiction, and this includes that from well- meaning friends and family. They are not with us 24 hours a day, they do not see her abilities and frustration like we do. We must trust medical opinion. I just wish family and friends could keep their comments to themselves as voicing them puts us in an impossible position.

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....