Tiddler's Development Spurt and Operation Baby-Proof

In the last 10 days or so there have been some truly amazing changes. Tiddler has had a physical development spurt...

Tiddler has been ill for about a month, give or take a couple of days and I think the enforced time at home (chicken pox) has done her the world of good. She has been quietly biding her time.

In the last 4 or so days her sitting is coming on really well. She still needs some support but she is able to sit really straight now for quite a while. It makes her look so grown up! She is turning into a little girl...

She is beginning to see the benefits of sitting, she is enjoying the enhanced interaction with her toys. Its an absolute joy to see.

She has also begun to master her own little "crawl" technique. Her shoulders are too weak for her to be able to crawl, and her arms too weak to commando crawl but somehow she is travelling  I think the strength of her legs caterpillars her trunk forward. Its very hard to describe, but seemingly effective. We had been told she wouldn't be able to crawl and so I had assumed this would also mean she wouldn't be able to travel either. Bit naive of me really- but in any case it now means I have to baby-proof our lounge!!

Her feeding has also improved vastly. She is still not the world's greatest eater- to be honest when it comes to food she can take it or leave it. She has only cried in hunger a handful of times in her life. Literally. (This is also something the Drs believe is highly unusual and potentially an indicator of other problems). In the last few days she has started to eat bite / dissolve foods- you know the sort- they look like crisps for babies! This is fantastic- I have been trying these intermittently for nearly 5 months and until last week she would react as if I was feeding her glass. I am so excited by this as it means she will be able to graduate on to lumpier food.

We are due to receive a feeding chair from Occupational Health on Monday so the timing is great. I am hopeful that with a large tray and ideal seating position Tiddler will now turn into an eating monster baby! The chair we have at the moment does not have a tray and we cannot get it near a table.

Onwards and upwards- it is incredible the difference a week or 2 can make. Will keep holding myself back a little though, just in case. I know that it is often a case of 1 step forward, 2 steps back. In the meantime, we need to embark on Operation Baby-Proof.

Ranting re bath seats

I have a dilemma.

Tiddler has sat, she can as I have written elsewhere... but she won't. Its too hard for her as the Hypotonia she has means she is like jelly- very wobbly in her trunk and shoulders.

We have been using a bath support shaped a bit like a shoe...anyway, we have had to stop using this tonight as she isn't at all safe in it. She wriggles over the middle pommel part as her legs are so strong, and into the bath.

That's fine I say to myself I shall buy one online tonight. Bob shall be my uncle etc etc. Clicked onto Kiddicare, nope...Boots, nope... Mamas and Papas... John Lewis.... nope and nope. So how do I find a bath seat for Tiddler? I think the only way we can safely bathe her is if there is a seat she is fastened into somehow. But it must be one that is very well supported as otherwise she can't remain upright. It seems that my requirements are too unusual for the vast market that is babycare products.

She has a feeding chair from the council and is getting a better play seat / feeding seat soon. I am so flipping irritated with myself that I didn't think about bathtime- why didnt I ask about this? Shouldn't they have thought of it? Am I just being unnecessarily angry?!

So- in the meantime, we will have to bathe together as holding her without a seat really isn't safe. Very annoying. What seems so simple just isn't possible to achieve.

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....