Friday 28 October 2011

Childminder Fail

Today I embarked on my first foray into investigating childcare. Not a huge success. I won't talk about the fact I left my headlights on and so had a flat battery. I definitely won't mention that said flat battery meant the central locking on my little car had left the building so I had to squeeze Tiddler into the drivers seat and between the two front seats to get her strapped in. And what would be the point in elaborating on our 2 HOUR WAIT TO BE RESCUED....

So where were we... Met a lovely lady found on the council list of childminders with vacancies. Before meeting was very hopeful- she is also a nurse so I reasoned to myself I won't find anyone better qualified to look after Tiddler. She was the sort of lady I could quite happily be friends with, but I have concluded not right to leave Tiddler with.

I asked what experience she had had of children with additional needs: none. I couldn't see how Tiddler could fit in to her environment easily and was as unsure as she was about how her special seating could be arranged.  So, it seems I may be looking at nurseries next. This morning has made me doubt that I will find anyone right for Tiddler. I just can't see how those caring for the child can juggle the needs of 3 children simultaneously. I know its their job but I can't help thinking Tiddler may be left sitting for example because its easier with two other toddlers crawling all over the shop

Friends have told me that when you find the right place, "you just know", so I guess I have to wait and see...

Tuesday 25 October 2011

Physiotherapy & the Nature of the Beast

Why do I feel so devastated?

I had thought Tiddler was doing really well- a growth spurt, almost sitting, fashioning her own crawling, mastering bite/dissolve foods.

Why then, why did I drive home from her latest Physiotherapy appointment hurting and fighting back the tears?

T’s lovely physio gave her the fab patent hot pink Piedro boots to try on. Mummy would have liked a pair in size7. Seriously, they rocked. Due to T’s Chicken Pox we are a little later than intended, and so they only just fit. Oops. Size 2 and ½!

Tiddler went ballistic. Screaming and screaming, real tears, she was NOT happy. She hates socks / bootees anything on her feet so I suppose it shouldn’t have come as a surprise. Eventually, with my holding her and the Physio battling, we got the boots on. Still the screaming ensued. She tried T standing in them, I meanwhile was desperately trying to distract/ cheer her up. In the end I had to intervene and ask for us to take them off. I couldn’t bear to hear her upset any longer. It really didn’t seem worth it.

Upset number 1: the Physio at this point said she was really wobbly and weak and would need a standing frame as well as the Piedro boots. At our last appointment she had not said this. I know it’s only temporary but it still makes her less able than her peers and makes me concerned again about her future abilities. As she has been doing so well I had thought she would be walking by 18 months. I feel a bit stupid now. Maybe this won’t be the case. I am angry with myself that I let myself believe everything was nearly "there".

Upset number 2: I mentioned in passing that although her arching behaviour has got a lot better, she has started head banging. I have assumed this is a normal phase, it seems not. Now I am concerned. As she is still without a diagnosis, I suppose if there is to be one, then little pieces of the jigsaw such as head banging help to work out what the overall condition is.

The Physio suggested it is either behavioural - which is what I have assumed it is- or otherwise sensory? Now I have googled this quickly (I know, I know….) and it seems that it may be an issue with sensory processing. She also seems to have a very high threshold for pain. Whatever it is the appointment has brought me down to earth with the bump I was waiting for. Even if this latest episode turns out to be nothing it just shows we are never that far away from hypothesising, grey, twists and turns. I guess that’s the nature of the beast.

Saturday 22 October 2011

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.

Saturday 15 October 2011

Cuddle

Tonight Tiddler gave me the most lovely cuddle.

Tiddler is 10.5 months old. She is physically delayed due to her Hypotonia (low muscle tone) in her upper body. She also wriggles and arches, out of frustration as much as anything else as her body won't work as she wants it to. Holding her in any position is hard work and she requires more support than a "normal" baby.

I was putting her to bed tonight, calming her down and she reached her arms up to my face and we cuddled.

Amazing amazing feeling. I am a lucky Mummy. We are getting there.

Tuesday 11 October 2011

The Pox, Chicken Pox

So Tiddler has Chicken Pox. Doesn't seem at all fair, she definitely isn't top of the list of the world's healthiest babies. I do worry a little that there is something affecting her immune system. Obviously as we are without a diagnosis still for her it's hard not to let your mind wander a little and worry about what might be...

She has what must now be hundreds of spots. Hundreds. When my husband checked her temperature on Sunday morning he actually thought the thermometer had broken. I then stripped her off and noticed 3 or 4 spots. We didn't know what it was at this point and phoned the Childrens Ward as she is known to them for advice. They told us to bring her in, predominantly I think because of her history. We were sent home quickly, having been told it was probably Chicken Pox rather than any post viral complication or chest infection.

By 4.30 pm, I was terrified. Tiddler had been dosed up on Calpol and Ibuprofen all day, had more spots, was floppy, moaning, only wanted to lie in our arms- completely out of character. She never lets us hold her, she's normally too busy doing Tigger impressions. Her temperature was 39.9 C and we couldn't get it down. Her breathing was rapid, almost panting. I rang the Ward again. I literally ran around the house grabbing bits and pieces and we set off again for the hospital. The car journey was as I imagined our labour dash would have been, had I not been induced early! Poor Tiddler in only her nappy in October. They were much busier this time and we had to wait for what seemed like an age. We were in the main waiting room and I felt awful as I knew she was proobably infectious. She was crying constantly for about 3 hours. Again, totally unheard of for Tiddler to do this.

They admitted us in the end because she had not taken enough fluids, and with her history of poor feeding, they didn't want to take any chances. By then I was calm, her temperature had by now subsided randomly on its own. We eventually got transferred to the Ward, and I was told we had to get 150 ml in her within an hour or they would put an NG tube down her and top up her fluids. I was desperate to avoid this as I knew this would certainly involve a longer stay. Using a 5ml syringe I managed to get 130ml down her which was enough to keep the tube away!

The Drs checked her throughout the night and by morning she was feeding normally again. It was abundantly clear she had Chicken Pox, she was fine to go home.

Now we are Calamining her like there is no tomorrow but she really is covered! I hope the itchiness passes quickly and without incident...

Saturday 8 October 2011

Blog Camp

Bristol - Ceramic Sign


I had the most amazing day in Bristol at Blog Camp this week. I realised only the day before that I had never left Tiddler for so long nor had ventured so far from home without her. I found it really hard, especially when I saw other mums with their babies.

It was also weird:
  • getting on a train having just left my husband with potential nappy/ car seat carnage at the station. 
  • only carrying a small handbag, not hulking great changing bag equipped for every eventuality
  • being on my own walking into a room without Tiddler to hold or hide behind!

The day was informative and inspirational and I hope to put lots into practice from the day. ( Just need a bit of time from somewhere) I am glad I had the bottle to go- I nearly cried off the night before as it was a bit out of my comfort zone.

It was great to finally put faces to names and I loved that this random collision of people from different backgrounds all got on so easily. The power of Twitter! I can't wait for the next bloggie meet up...

Tuesday 4 October 2011

Brick wall

So today I bought a Baby Bjorn chair fron Mothercare. The only reason it got the sale was it was half price due to being an ex-display model. The next time I have a purchase to make I will be using kiddicare or John Lewis as I don't take too kindly to being ignored for several minutes by 4 sales assistants and 2 managerial - looking types. Shoddy. I was going to look at pushchairs- have my eye on one in particular. There was no-one to ask. so I will be buying elsewhere. Mothercare have no unique selling point as far as I can see. Please do contradict me if your experience is different!

Anyway, I digress. As Tiddler can't sit unaided and arches I really don't have anywhere where I can leave her safely right now. We borrowed a friend's Baby Bjorn chair and were pretty impressed so fingers crossed. As it is hammock-like there are no anchor points that she can push off from and twist or arch. Its also ok for quite some time and can apparently be used as a toddler seat.

If this seat doesn't work then I am totally stumped. I genuinely don't know what I am going to do. She is still not really sleeping through the day so I just don't have any time to do chores or just sit and have 5 minutes to myself. I am feeling pretty strung out and alone. Am investigating childminders/ babysitters and nurseries now for a bit of help with Tiddler to give me a bit of time out. Fingers crossed that the figures stack up to make it possible!