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Thursday, 15 December 2011

Sensory Processing Disorder

I haven't blogged for ages, and almost can't bring myself to now.

In the period since my last entry, things had been going quite well. Tiddler had started to eat foods such as toast, strawberries and tomatoes from my hand. She was discharged from the Neurologist last week... She has fabulous bright pink Piedro boots and doesn't mind wearing them.... and she can stand for short periods when wearing them!

A few weeks ago Tiddler had an appointment with the Occupational Therapist. The OT asked us to come back to see her more senior colleague as she was unsure of a diagnosis - Tiddler has always thrown the health professionals that treat her!

On Tuesday, we went back to see this senior colleague. She observed Tiddler playing and moving and concluded fairly quickly that she has a Sensory Processing Disorder. Specifically, she is Hypo- responsive in 3 different areas.  In particular, she is under responsive when it comes to the pain sensation. Apparently, this is "extreme". Obviously this is pretty serious. The concern is that she may harm herself and we will not know. She stressed on me the importance of keeping her safe. The cushions on the floor have to stay!

As she uttered these words I could feel the tears coming, I couldn't suppress them. It really feels like one step forward two steps back. I worry that she may have already harmed herself and we didn't know, I worry I have neglected her, I worry I have let her go hungry, I worry that my poor little girl has been living in a black world for the first 12 months of her life and we didn't know.

Part of the problem is we don't fully understand what it all means: both for now and the future. I have started reading a book that was recommended but I will admit we are in complete shock and struggling a little to accept this latest development.

Tuesday, 8 November 2011

"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.

Monday, 7 November 2011

Orange, customer service and a lonely router...

A little over 2 months ago, I spent 2 hours in an Orange shop. 2 hours I will never get back. I signed up to their broadband and phone service, was given a router there and then and was informed I need do nothing else.

We waited.

And waited.

No communication from Orange, no shiny new landline no internet connection.

Fast forward 2 months to late last week, and it seems that Orange customer services practice telepathy. When I tweeted that I was having a problem with their call centre, the @orangehelpers stepped in on their white chargers. They didnt ask me what the problem was though.... and they didnt actually talk to me.... then, after I supplied the answers to their brief questions, they came back with a "we cant find your account" No? Correct. I could have told you that and saved us all a bit of time. It seems the store never actioned my order, but gave me the router anyway... (for a small fee)

I had originally called the call centre, and was told that as I had placed an order in store, the call centre couldnt help me. Neither could they supply me with a phone number for the store.
"Can't you look at the receipt?"
Well, yes love I could but why should I ransack my belongings for a receipt from 2 months ago... isnt this Orange reneging on the deal? Shouldn't they be doing the rummaging? Isn't 2 hours of my life enough? Is there literally nothing that customer services can do to complete this deal?

It seems not, it seems that the Orange stores are separate boats cast adrift from the mother ship. A and B don't talk to each other. Craziness. A highly inefficient business model if true but surely not, surely I have been at the rough end of lazy customer disservice...

So, does anyone have any ideas for what to do with the brand new router in my hands?

Sunday, 6 November 2011

Thank you, thank you- Liebster Award

Wowsers, thank you! Where do I start? So I have been awarded the Liebster Award by the ever so kind hearted Cheetahs in my Shoes. This is an award to those blogs with under 200 followers with "good content" that warrant more support. Well Mrs Cheetah, thank you very much. I had kind of lost my blogging mojo, so this award gave me a much needed boost. Thank you!

  1. Show your thanks to those who gave you the award by linking back to them. – Hello Jenny!
  2. Reveal 5 of your top picks and let them know by leaving a comment on their blog. Keep reading....
  3. Post the award on your blog. Check.  
  4. Enjoy the love and support of some wonderful people on the www! Well I have definitely been doing that and I look forward to meeting more of you... don't be shy introduce yourself if you stop by!
Its now my turn to choose 5 other blogs to receive the Liebster Blog Award: 
The Secret Life of an Unknown Housewife Sarah blogs about family life with candour and come across a very compassionate caring person.  She is a truly interactive blogger and I urge you to go along and say 
Thea and Nates Mam  - This blog written by Mum of 2, chronicles life as a family with a child with additional needs and the interaction between both siblings in this situation. 
Not The Tiger Mum - Ok so I have no idea about followers, its possible there are more than 200 followers but sod it I am including it. This blog is humourous and touching all at the same time. As a "Running Mummy" there are also plenty of references to fitness and running and how this can be juggled with a family life and work commitments. 
Cats Yellow Days   These are the days when Cat does something beyond the "eat/wash/feed/sleep cycle". Cat blogs about family, current affairs and a smattering of current affairs. A really good read!

Mum2babyinsomniac Great blog from a new mum, written with both honesty and humour. This blog is well designed and I really like the writing style.

There! Enjoy!

Wednesday, 2 November 2011

Paediatrician Tomorrow

Tomorrow Tiddler has her appointment with the Consultant Paediatrician.

This time we have had the longest gap ever since her last appointment- 3 months. She has changed a lot and I know he will be blown away. As I type "I know he will be blown away" there is a voice telling me to "shut up, when will I learn" etc. Each time I build us up the fall when we are knocked down is greater and it hurts a damn sight more too. We were super positive but the Physio appointment last week pissed on my parade somewhat.

I am worried about her head banging, this is new and with her history I wonder whether we will be asked to reconsider an MRI scan. She has already had one, but she wriggled through it. Any future scan would have to be done with a general anaesthetic, hence we asked them to hold off when it was arranged back in May.

I wonder what her weight gain will be? Her feeding is still patchy, and she is still small although at the last weigh in she had jumped a centile!

It will be interesting to see what he thinks about her physical development... is she still delayed by the same number of months? As of last night, her unique travelling movement has morphed into commando crawling. We are totally blown away by this- we were told she probably wouldn't be able to crawl.

Both myself and OH really respect and like Tiddler's consultant and I am looking forward to it as I know he will give us a bit more black and white in our world of grey and unknown.

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


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!

Sunday, 25 September 2011

In the big bed

We are doing it, we are finally doing it,... Tiddler is in her own room. We had a shocker of a night last night and although she is poorly, this was not the sole reason we were all up for 2 hours from 2am til 4. The coughs and cries were interspersed with giggles and grins... "isnt this great! We are all here- lets play even though its dark and clearly the middle of the night.."

She is almost 10 months old. I know... knocking on a bit to still be in our room. We have our reasons as I have blogged here, she stopped breathing several times when tiny and we have, until about 1 month ago, been using an apnoea alarm each night fixed to her tummy. We haven't forced the issue, things are just naturally about right now for her to move into her room.

Doesn't make it easy though. I cried tonight. I cried due to terror- what if she does stop breathing? I know that she won't intellectually. I cried as I can't believe we have actually got to this stage! Wow! At times I never thought she would leave the hospital let alone be in her own room. And I cried because, like a normal mummy I am sad that my baby is a little more grown up now! She looks so tiny in her cotbed. Well she is tiny in her cotbed... its going to last her for years and years at this rate...

Saturday, 24 September 2011

The leaves are turning

The leaves are turning, its almost Autum. The nights are getting darker. Spooks is on the telly, as is X Factor, Strictly etc etc etc

It was this time last year I was getting bigger. The anticipation was palpable, I was terrified, excited, disgustingly happy, my world was simple. I was about to have a baby. The most natural thing in the world. I was terrified about the birth- ridiculously so... but obviously very excited. I was to have my baby in early December.

Now the darker evenings, the colder weather, the Winter TV schedule have all delivered an unwelcome reminder of last year. I didn't see this coming. I don't like it. I am remembering the blissful ignorance of last Autumn and the expectation of a happy ever after - once I had got the birth over with of course!

Things like "that" -I mean when things go wrong- well they don't really happen do they? Not to people like us.... you just read about it in weekly mags... thats not real though is it...

Tuesday, 20 September 2011

#Healthworkers - Save the Children

It's been said elsewhere this week, but I make no apology for repeating...

I thank whoever looms above EVERY SINGLE DAY that we have Tiddler today with us. I am indescribably grateful to the NHS that we have in the UK. Yep, it has its detractors but we have an inalienable entitlement to first rate healthcare in the UK. This is for emergencies, scheduled ops and even elective healthcare with everything in between.

Tiddler has been in hospital for roughly 1/3 of her life. The talented, hard working and dilligent healthworkers that have saved her life as well as improved her health are literally too numerous to name but they range from a Consultant Paediatrician to Physiotherapist to Student Nurse to Radiographers....

She most certainly wouldn't have got beyond day 1 of her life if she lived in some of the lesser developed nations without good access to healthworkers. I have luck and geography to thank for Tiddler's good health today. This isn't fair. This isn't right. We can stop this by improving the provision of health workers in the developing world.

At home, you and I can help stop this by signing the petition here to urge David Cameron to stand up and be counted and push for the provision that all children deserve...

Thursday, 15 September 2011

The A-Z of ME meme

Thanks to Motherventing for tagging me on this A-Z meme... here goes

ANORAK…Do you have a sad side? Yep, I am well into Family History. Geek alert. Am pretty young to do this - by about 40 yrs I would guess. Love it though!

BODY…What physical attribute would you most like to change? Jaw line. Odd, yep.

CELEBRITY…Which one would you most like to date and why? Robbie Williams but I wouldn't let him touch me... been around the block a couple too many times for me...

DEBUT …Tell us about your first ever blog post. What made you start blogging? First ever blog post was only about 2 mths ago. Started to help me come to terms with what happened immediately after Tiddler's birth.

ERROR …What’s been your biggest regret? Career. Start to finish.

FUNNY – who’s making you laugh? OH. He is hilarious. I am also hilarious so we are a bloody good match.

GRAND…If we gave you one right now what would you spend it on? I would hoard it.

HOLIDAY… What’s your favourite destination? NYC. That or Moray Coast of Scotland.

IRRITATE… What’s your most annoying habit? Interrupting. I always want to get out whats in my head!

JOKER…Whats your favourite joke {the one that makes you laugh everytime you hear it}? Whats brown and sticky? A stick.

KENNEL… Do you have any pets? Nope.

LOVE…Are you single, married, engaged, living with a long term partner? Married.

MEAL… Whats your ultimate starter, main and dessert? Hmmm Prawn Cocktail (retrofoodchic) Shepherds Pie and a stodge-fest of a sponge pudding. Yumbags.

NOW…If you could be anywhere right now where would you be and who with? Here.

OFF DUTY…What do you do in your spare time? Blogging, Sleeping. Moaning about how little spare time I have. Ha.

PROUD MOMENTS …What are you most proud of? Giving birth to my daughter, getting married. Academic qualifications. Not having had any handouts on the way.

QUEASY …What turns your stomach? Violence.

RELAX…How do you relax? Wine. Bath.

SONG…Whats your favourite song of all time? ??

TIME …If you could go back in time and relive it again, when would you choose? 16

UNKNOWN…Tell us something about yourself that no one else knows?

VOCAL…. Who is your favourite artist? ??

WORK….. What is your dream job, and are you doing it now? Who knows, the age old question. Happy being Mummy for now.

XRAY…Any broken bones? Finger.

YIKES…What’s been your most embarrassing moment? My car being recovered after being flooded and the recovery man giving me back a pair of knickers that were found and I quote, "floating" in it. They were new and unused. Thanks for asking. They were actually a gift from my hen night. Ok, the story sounds worse now...

ZOO…. If you were an animal, which one would you be? Panda. They rock

Now to tag..... its your turn:


For the template and original post see: Real Housewife of Suffolk County: A-Z of Me Blank Form

It never rains but it pours

This week has been really really tough. I have been struggling with Tiddler as she has started arching at almost every position change. So, this makes putting her in her tumbleform (feeding chair), car seat, pushchair, etc etc very difficult. She has also started to sleep pretty badly, and yep you guessed it, she arches when you try and put her into her crib too. Now the last few days have taught me, through bitter experience, that she will relax but you have to distract/ tickle etc. This is quite hard to do on your own when dealing with a wriggling child!

I have had a bit of week healthwise too- had to have ultrasound on Monday to check that a cyst I had during pregnancy had gone- apparently it has- and yesterday I had to go to the Breast Clinic. I had noticed changes post-Tiddler's arrival and upon the 3rd GP visit I was referred. All very scary, they use the C word and you can't help but ponder the "what ifs". Although I had been reassured that a serious problem was highly unlikely it has still been a very difficult and stressful week. I have, apparently, got Periductal Mastitis. So there you go! I have to go back for an ultrasound- they are going to be on first name terms with us there (Tiddler has had 3 or 4 ultrasound scans herself!).

Childcare for things like hospital appointments is really tough without having family nearby. At the moment with the way Tiddler arches etc I wouldnt know whether a babysitter / nanny would even work with us?! Am I over-analysing and panicking again!?

I have been desperate for help with Tiddler. I have called everyone! Some have been helpful, but without a diagnosis or a label to quote it sometimes feels as though I am trying to prove entitlement. The Occupational Therapist has gone to ground again and so we are still awaiting a play seat.

However, its definitely not all bad. Tiddler has really come on with her sitting and I am hopeful that she may get there in a couple of weeks. That will make life a lot easier as at the moment I just can't leave her safely anywhere. Then I will just have to try to get her to sleep during the day... aghhhh the Holy Grail...

Friday, 9 September 2011

Dear Santa...

Dear Santa/ any other kindly- faced benefactor...

Santa's Spreadsheet, after Haddon Sundblom

I am getting in early, needs must. I have a few needs right now and I am hoping you can oblige.... I know I am not a child but my wish list is all on behalf of Tiddler, and she is 9 mths so I am defo ticking the box there.
  1. Family nearby (that are arsed about anyone but themselves)
  2. A member or two of said family that would spare me an hour of childcare now and then
  3. A bath seat that Tiddler can safely sit in
  4. A chair that Tiddler can sit in to eat which is at the table with us and where she can reach a table or tray so she can interact with food more readily
  5. A playseat so as to encourage her to sit
  6. A miracle solution to stop Tiddler arching so we can actually get her into numbers 3, 4 and 5
While I've got you, I'd also like a toblerone, Ipad and a new pair of jeans. You can keep the socks though and obligatory smellies on a 3 for 2....

That is all

Tiddler and her Mummy xx

Wednesday, 7 September 2011

The week and a wobble

It would be fair to say that the week so far is hardly a cracker.

A GP asked if Tiddler had Down's
Tiddler is full of cold
She hasn't slept well for days. We haven't slept well for days. I am knackered.
Tiddler has begun arching. This is now so entrenched I am tearing my hair out a little.

Thankfully her Paediatrician called this pm, he is really great, and gave me a bit of advice. Importantly, he reassured me she cannot cause herself harm. This has been my main worry as she goes back into a "crab" but as she can't use her arms to support her she uses her head and neck. It looks like her neck will snap. So there's half a plan now, we can be seen by a Paediatrician soon if it continues to cause concern. He did say perversely it is quite good as it shows her strength is improving. In the meantime I have to distract her to get her into her crib, tumbleform, car seat, puschair or seat. Oh Joy. It is truly draining. I need a break, and am wholeheartedly rueing that we have no family nearby to let me take a break.

Tuesday, 6 September 2011

Does she have Down's?

We have not had a lot of sleep recently from Miss Tiddler. I hate to moan about that, you see we were blessed from about week 2 of her life to very good sleep, interrupted only by us waking her to feed. It seems she shouldn't really have been this sleepy but we didn't realise this at the time.

Anyway, after a few particularly sleep deprived nights, I decided to take Tiddler to the GP yesterday as I know one of the reasons behind her being disturbed is constipation. Sorry Tiddler, yes I am discussing your bowel habits on the internet. I wanted to check out the medication she was already on. My surgery were great at squeezing her in to be seen same day, I think this is a common baby policy... However this meant that we saw a new Doctor, never seen before.

Medication all okayed, and a brief chat ref. Tiddler's diet - "Do you give her fruit and veg?" Errr... no shit Sherlock- I was at this point inwardly rolling my eyes but reminding myself that she probably does have to tell some people this...

I then asked whether her Hypotonia could be the reason she is plagued by constipation? She said that yes, in her opinion it could and that low muscle tone in the bowel could definitely occur in someone like Tiddler. She then looked at Tiddler who was wriggling all over me at this point and asked "Does she have Down's Syndrome?"

My world went funny, I went dizzy, I couldn't breathe, I burst into tears. Looking back, did she say that or did she say "She doesn't have Down's Syndrome...does she?" I don't think it matters. I couldn't believe she was asking me this. Why was she asking me this? I could not stop the tears. Dr realised at this point all was not rosy and changed her tack. "OOooo yes, things can be hard when you have a child with health problems..." I was steeling myself for the "Have you got much support?" question when I blurted out how insensitive her question had been, how it had been asked before, how did she think that question made a parent feel? And in any case why did she say that as Tiddler didnt look like she had Down's, did she???

To give her credit, she backed down fairly swiftly, explained she hadn't meant to be insensitive, said no Tiddler didn't "look" like she had Down's but that sometimes you can't tell visually in any case. I more or less held it together till I left the surgery, and then bawled my eyes out.

You see, when Tiddler was born and transferred to SCBU on Day 1 of her life, people started to comment on her appearance. They used the word "dysmorphic" a lot. She had a battery of chromosomal tests or "karyotyping". A midwife came to SCBU to do a post natal check on me. Chatted for a few minutes, walked round to look at Tiddler, look at me and then said "you had the nuchal test, didn't you?" The only conclusion I could draw from that question being that she too thought Tiddler looked different and possibly had Down's.

Also, for months we had been receiving hospital reports that duplicated the last known diagnoses/ issues in bold at the top. Imagine reading a report that drops on your mat telling you again that your baby has "dysmorphic features". Its a horrid, cruel term. I flagged this up in the end and it was agreed that it was no longer the case and so removed.

That is just like the insensitive GP yesterday. Sometimes, healthcare professionals forget what words and labels actually mean and what it feels like to hear them, if you are a Mummy. The GP yesterday, given that she didn't know us, could have asked me to run through Tiddler's history quickly, or to ask if we had a diagnosis etc. Surely her NHS patient database flags up any diseases / conditions that each patient suffers from? If she had read even one entry in Tiddler's notes she would probably have gleaned enough information. If Tiddler did have Down's - it was still an insensitive sledgehammer approach that would have caused upset.

So yes I am angry, it still hurts to think about it but I am very pleased I managed to challenge her. I wouldn't have been able to do that before.

Thursday, 1 September 2011

Lying, or rather not lying

More frustration today. Further to my bath seat rant...(we are still no further forward with that, I am waiting for the Occupational Health person to return off holiday).

Tiddler has always arched her back and neck. It looks awful, and we have put it down to reflux in the earlier days and thereafter thought it was a learnt movement. I have read elswhere recently that other children with Hypotonia also arch, so I have no idea as to the cause...

Anyway... last night she was lying on her back on her playmat and she arched her head right back- Tiddler's Daddy rushed to correct her as I can honestly say it looked like her neck was going to snap. The momentary panic and horror at how it looked literally brought tears to my eyes.

I spoke to our Physio today and she said that Tiddler would probably have self-corrected if we hadn't intervened and may not do it again, but that we should probably not leave her alone lying on the floor if we can avoid it. WTF??? She can't sit, I can't leave her in a chair as she arches and twists... she arches out of a Bumbo.... and now, now she can't be left lying on the floor???? Well how does that work then? How do I go to the loo/ prepare food/ answer the phone? I couldn't leave her for long at the best of times, but this really is like having a crawler or early walker but without the crawling and walking! The physio is lovely and normally very helpful, but I have to say this did not go down as one of our most constructive conversations.

Blanket/quilt/Play mat I sewed for Theo

I have all my hopes pinned on a Baby Bjorn chair- apparently they are impossible to get out of... we are borrowing one tomorrow. Fingers crossed! In the meantime, I shall also be crossing my legs as I clearly have to limit my loo breaks...

Tuesday, 30 August 2011

After Birth Story Part 1

The birth itself was fine. This irony was not lost on me- the girl who had spent 10 months (they all lie about the 9 mths) in abject terror. More about that another time.

I was induced a little early, again for reasons I shall not go into here. I had a fabulous midwife, hitch free delivery, no stitches. Hell, I didn’t even get any pregnancy induced stretch marks. Smug? A little.

Tiddler passed the Apgar 9 and then 10, she was put on my chest and all was well. No-one told me, and if they had I would have told them where to stick it, but if you batter the old gas and air like your life depends on it you will be a space cadet for several hours. I did, and I was.

I cannot remember much of the hours after Tiddler’s arrival. We were kept in the delivery suite for HOURS though, as initially Tiddler’s temperature was too low and then there was no bed for us on the main ward. We had a surreal picnic of Brie and prawns eaten off a clinical metal trolley. I had been one of those stupendously paranoid pregnant women and avoided all foods that had the merest hint of controversy.

Six or eight hours later, thinking about it I actually don’t know when , but while still in the delivery suite, Tiddler jerked in her crib and went purple. I mean purple. Ribena berry purple. I will never forget what it looked like. I immediately said to her Dad that this was not right, something was wrong, he initially thought she was fine and tried to reassure me not to panic. She was making a weird rasping noise. She wasn’t breathing. I panicked. It’s funny but in these situations you just don’t think straight sometimes. I went outside to get someone, couldn’t see anyone... went back in the room, I think I called the “normal” bell… no answer. It took a good few seconds for me to really shout and get help. Isn’t that stupid? Tiddler is our first child, we didn’t know what was going on, but still – stupid.

I can’t remember at which point help arrived, they used suction and got her breathing again. I don’t remember much of a hullabaloo. God knows if anything is even in the notes (must remember to look into that). As quickly as she had got into difficulty she was fine again, my baby was back. I was terrified but no-one else seemed to be making a big deal about it.

At some point after, we were transferred to the main ward. I remember the feeling of pride as onlookers cooed at Tiddler in my arms. This was to be the only time I held Tiddler in normal surroundings in “public” for weeks. It was something I looked back on and wished for again and again, to be able to show off my new baby.

After a major meltdown upon arrival in the main ward precipitated by 4 days of very little sleep, chemical craziness from gas and air and the small fact of your baby stopping breathing, we were quietly moved to a side room. However, within minutes it happened again. Tiddler went purple, the same horrific hue, the same noises. This time I didn’t fuck about. Straight to the emergency bell. FYI, they work pretty bloody quickly and effectively too. Within 20 seconds we had a room full of medical staff. Same thing as before, suction, obstruction cleared, Tiddler breathing again. This time though I really lost it. I hadn’t got over the meltdown on the main ward and I was beside myself, really frantic, terrified that Tiddler was going to die.
Luckily, the Supervisor of Midwives was one of the army of staff that had rushed to our room. Upon examination of Tiddler on the resuscitaire, she expressed concern that Tiddler was “floppy” a term we would hear again and again and called SCBU to come down and look at her.

Within minutes Tiddler had been taken away from me into the “hot room” of SCBU. The nonchalance we had encountered before had disappeared and things suddenly turned a lot more serious. We were told by the Supervisor of Midwives that my husband could stay the night in the hospital –in the ward. This was much to the consternation of the ward midwife, so we made a friend there…  

(to be continued)

Monday, 29 August 2011

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.

Wednesday, 24 August 2011

Holiday - an escape from those baby groups...

As I have blogged here, we are on holiday this week. Nothing flash, staying in the UK. Very lucky with the weather etc. Thats the small talk over with then.

It is lovely to have help with Tiddler during the day from Tiddler's Daddy, and of course its lovely to all be together as a family. It isn't too dramatic to say that we are gratefully enjoying the family holiday we feared we may never have. Its not exactly relaxing, well it wouldn't be would it, its normal life just transported to a different location- mummies don't get days off. (If you do, can I speak to your boss please?)

It is a lovely break though as its nice to really enjoy Tiddler for who she is, to enjoy the moment. I realised today how much I enjoyed that we hadn't been with other babies. There was no-one for her to be compared to- whether by myself or others, implicitly or via an "in- your- face" comment from someone that should know better.

This is my holiday then, a break from crying inside when people compare their baby to mine or ask a question I do not want to answer about her development. Thats fine. Its not exactly rolling in at 3 am carrying my heels in my hand and the taste of holiday Malibu and coke on my lips but it will do nicely thank you.

Now.... to find a babysitter for a future 3 am stumble...

Monday, 22 August 2011

Seven Words

Seven Words

Linky from the All for Aleyna blog, you sum up your week in 7 words. Its pretty hard, gets me thinking... always a challenge.

Finally the impact of past is understood.

Chester Zoo- A list animals

We are currently on our first family holiday since the arrival of Tiddler. We are staying in Cheshire and decided to go to Chester Zoo today.

Now, my other half is odd. He subscribes to the "Zoo-keepers Digest" or some such newsletter. On Facebook he belongs to a group that tells him when its "World Elephant Day" or "Tiger Keeper Week". He isn't a Zoo Keeper, the closest he has come has been owning a cat and a dog.  However, even an armchair Zoo Keeper like Tiddler's Daddy was most impressed by the calibre of animal at Chester Zoo.

They are often much of a muchness, and on paper Chester's directory of inhabitants didn't leap out and smack us as being anything unusual, although we were still very much looking forward to going of course. In fact, the Zoo was oozing with proper A- list animals at every turn!

Upon arrival, literally from the entrance, we could see elephants, then a rhino. Over the bridge and we saw 4 more elephants, then giraffes, a generous helping of apes, various big cats etc etc. In the past when I have visited zoos the animals have either been AWOL (clearly not really without leave though as that would be terrifying for everyone...) asleep or very forlorn looking and cramped.

untitled (Cyril Blazy) / CC BY 3.0

Now I am no Zoo Keeper (remember, neither are you Tiddler's Dad) but at Chester the enclosures seemed spacious, well planned out and the animals therein content. All the animals we saw were awake and seemed engaged. The Park was beautiful, well landscaped and although very busy it was still a pleasure to explore and we could see everything we wanted to without being jostled by over zealous children/ grandparents or being assaulted at the ankle by a rogue pushchair.

Although we didn't try them, you can hire buggies to escape overtired legs which are more like little cars and looked like great fun. Cafes and kiosks were well dotted about and weren't a rip off (also unusual) although there were also loads of picnic areas including some inside.

I had to blog about Chester Zoo as we really were so impressed, I don't work for the Chester tourist board or anything! A great attraction, very well organised, clean and lots of fun. Better than its southern competitors in our opinion...

Thursday, 18 August 2011

Misfits or fraudsters?

Odd one out

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....

Tuesday, 16 August 2011

Reasons to be Cheerful, 16th August

Ok, bit late with this this week but here goes anyway...

1) Had Paediatrician appointment for Tiddler last Wednesday. Dr was really pleased with her and it was probably the most positive appointment we had ever had. I could have cried as the Dr gave us a big grin. Tiddler made great progress in one of the reflex tests she normally fails hands down. You can really see the changes in her. It is still early days for her but I left happy. I never leave there happy!

2) Yesterday, I was told I have PTSD (Post Traumatic Stress Disorder) Crazy. And probably not a reason to be cheerful for most but for me it's validation, the culmination of a long period of struggling and everything is now falling into place. I feel like this is a real turning point and feel heartened and positive about the changes I can make in the future.

3) We are going on holiday on Saturday. Yay! Our first ever family holiday. I am beyond excited and definitely have reason to be cheerful

OCD and handwashing - what's normal

A Soap Dispenser

So this is a bit of a weird one- writing about myself rather than Tiddler today... I wanted to pick your brains.

I have OCD. No big deal, had it for years. Anyway, I have been attending CBT sessions because of the difficulty I was having coming to terms with Tiddler's health issues and start in life. They are now hoping to address my OCD. I am a handwasher and checker. I can't believe I am writing this!

I was asked what "normal" was for handwashing- I honestly don't know- especially with a baby. (Tiddler is 8 1/2 mths old) I was asked if I would ask my friends- survey opinion among my contemporaries. Well there's no way I am doing that- you see I hide things pretty well. Proud of that, whether that is wise or not is another debate for another day... So I thought I would ask readers of my blog. So- what IS normal?

Once I have a "normal" level thats what the exposure therapy for CBT will use as a target.

Thank you- all answers would be really appreciated! I know this is random, but to get rid of OCD in my life would be AMAZING!

Monday, 15 August 2011

Flashing lights


So, Saturday we had a trip to IKEA. We travelled to a store we don't normally go to as we had been advised it was easier to get to. Mistake number 1.

We spent an inordinate amount of time shopping as per usual. Mistake number 2. Tiddler was pretty patient, although was on an anti- milk day.

I managed to make time for meatballs and a hotdog so could sustain myself throughout the day- this was the major positive of our trip in my eyes.

We bought what we went for, and then doubled the value with a trolley full of stuff we fell for. Varying degrees of regret the next day. Anyway... on the way home, Other Half reversed out of the parking space anD hit a post, just a little tap at 1 or 2 mph. The result was pretty shocking damage to the front wing. There were a group of skaters who sniggered but thankfully Other Half was oblivious to this- I feared for an altercation/ Other Half majorly losing the plot if he had noticed them! I managed to suppress a nervous giggle- you know the one you used to get at school when in trouble... no? only me then.. and luckily this also went unnoticed.

I have to say- if it had been me, I would have burst into a fit of hormonal tears and / or kicked the car and probably hurt my foot considerably.

What then ensued was a 2 hour wait for our car to be recovered- yes the 1 mph smash had rendered our (2 week old car) undriveable. Eventually the yellow flashing lights heralded the arrival of the flat bed truck and our ride home. I had a minor meltdown when I realised how precariously the baby seat had to be strapped into the truck cab- also as it stank to high heaven of stale Golden Virginia. I know, I used to smoke it in my headier days.

Recovery vehicles don't go very fast, they are noisy and bumpy and the ride home wasn't a whole lot of fun although Tiddler did eventually drop off. Recovery vehicles do like to flash their lights a lot though. A flash for "hello",a flash for "you are a recovery vehicle too" a flash for "yep, come in my lane", a flash for "Oooh this is where you live, I will now wake up your neighbours" etc etc etc...

Our quick dash to Ikea turned into an epic day trip. We got back at 10pm. As I had been saying all evening the only important thing was that we were all ok. By Sunday evening Other Half was starting to see the funny side...

Tuesday, 9 August 2011

London riots

So, other half and I were glued to the TV last night. I am embarrassed to admit this, but maybe it is part of the rubber necking, car crash watching mentality that is so encouraged by 24 hr media and the content they trawl for to fill all this air time.

Notwithstanding the reasons, we were transfixed, transfixed in horror. Tottenham, Hackney, Lewisham... all horrific, I was embarrassed to be British. For me, the realisation that this was really plunging to depths not seen before came when watching Croydon in flames. I used to work there, my Mum was born there, went to school there. Its a town I know and a town where my family lived in the 40s and 50s. To see what we now know is Reeves Furniture store burning for minutes and minutes, the huge inferno left with media helicopters filming it was sobering beyond belief. There were no fire engines, there were no police. They couldn't get there. They were spread too thin and were attending elsewhere.

I dont know the rights and wrong of this, I am not in the emergency services, I acknowledge what an incredibly difficult job they must do. But this image for me is the one I shall remember.

I tweeted this morning that I felt disturbed and fearful about tomnorrow more so than at any time since 9/11. I really do. Its scary to see what humans can do to each other. We have been worrying all this time about terrorism... have we been forgetting to look over our shoulder?

And what has created this culture whereby kids/ young people have to have the latest trainers / plasma screens... seriously, where has this come from? Creates a currency by which you are judged how worthy you are, by your possessions, really??

I am ashamed that I live in a society that has somehow allowed young people to grow up to not give a shit, not the tiniest bit, about their neighbours, their streets, their city. And family? What is family about in 2011?

Sadly, these young people have literally nothing to aspire to, no dreams, no hopes to work towards, to steer them off the streets and away from trouble. There is no fear of the repercussions if they get caught as they have absolutely nothing to lose and sadly, probably kudos and the odd plasma tv to gain.

I am disgusted, disgusted by our Government, disgusted by the individuals. But this rot started a long time ago, before this Government, and the last.

Monday, 8 August 2011

Videofluoroscopy, not a computer game- Tiddler's test

Today Tiddler had a Videofluoroscopy. She has had problems with her swallow for some time, I had to stop breast feeding due to her poor co-ordination of breathe and swallow (another story, and another blog post).

The latest concern that our Speech and Language Therapist had was that she was "pooling", my understanding of this is liquid / food gathering in her throat. They needed to check that her swallow was safe, and so the best way to do this is by using the Videofluoroscopy test. I have to say that for some time I have thought something was up as after feeding she sounds "gurgly" and like as if you opened her mouth you would see a pool of milk gathered at the back of her throat. Apparently, in the trade, this is called "pooling".

The test is a collaboration between Radiology and Speech Therapy, a fast succession of pictures are taken as fluid / food is swallowed. Tiddler had to feed/ eat her milk, water and purees as normal while seated in a special seat. All 3 had Barium in them - to show contrast in the pictures. Tiddler wasnt bothered about the taste of the Barium, apparently its rather inoffensive which was a blessing. The puree in particular turned into what looked like polyfilla! Tiddler managed though and fed obligingly.

The pictures were fascinating, really interesting. Although I was concentrating on feeding her so could really watch as much as I would have liked, you could see a cross section of her face, throat and neck and what looked like black liquid moving down her throat and neck.

The test itself only lasted 5 mins, it took longer to mix her milk and food with the polyfilla! Tiddler was absolutely fine, a non-intrusive test so she was non the wiser. They could see straight away that she wasn't pooling so thats great and means her swallow is safe. This is great and means I am less scared about T having more lumpy food. They could see though that she has a "delayed swallow" - she swallows too late? Don't quite understand this.... the Speech Therapist is calling on Thursday to discuss. They said to be careful after she eats, to not lay her down too quickly in case she hasn't swallowed. With her reflux, we keep her upright anyway so that's fine. Will wait to see what this "late swallow" means.

I am relieved. All systems go on solids again I hope.

It was a bit upsetting in the waiting room as I had waited there 8 months ago when Tiddler was 3 days old. I vividly remember sitting in this horrid, clinical cubby hole and I remember praying over and over again that she would be ok. She had been transported by a Dr from SCBU to radiology in her incubator, a tiny tiny baby- MY tiny tiny baby in a plastic box having one test then the next and the next. That time, at 3 days old she was having a Barium Swallow to check that she didnt have an obstruction in her stomach.

We are a bit too familiar with the hospital, I hate that we know our way round so well, we recognise lots of people and they us, and that poor Tiddler has been tested by nearly every department now, and a couple more than once! Happily however, the tests - the serious ones at least- have all given us a big fat negative, and we are very thankful for that and the fantastic care and resources that they have bestowed upon us.

Saturday, 6 August 2011

Nursery Rhymes... What Were They Thinking??

What is it with nursery rhymes?!
3 Blind Mice - not only is it ripping the piss out of the visually impaired, its condoning violence

Jack and Jill Went up the Hill. The classic personal injury tale of woe, where theres blame theres a claim etc

Ladybird, Ladybird. I remember even as a child being distressed about this one, "Your house is on fire and your children are gone" Nice. That one makes the audience feel warm and fuzzy inside (!)

Grand Old Duke of York. Pointless. Utterly pointless, all that up and down business.

Humpty Dumpty. For contemporary tweeters a definite #fail, they couldn't put him together again could they.

Humpty Dumpty

Hickory Dickory Dock ok fairly innocuous... I think?

Wind The Bobbin innocuous but circular. All that winding it up and winding it back malarkey...

Twinkle Twinkle, everbody "agghhhhh", a nice gentle lullaby

Anymore? There are loads... I wonder whether other languages have similarly inappropriate nursery rhymes?!

Friday, 5 August 2011

Breakthrough in diagnosis for Congenital Heart Defects

knitted heart

In the news today it has been reported that a currently little used test on newborns could help discover congenital heart defects. The test measures the oxygen levels in the blood and is easy, quick and non-intrusive. Got to be good. The study looked at 20,000 babies and it detected 75% of all critical cases (those that result in death or surgery within 28 days of birth) and 49% of major congenital heart defects (causing death without surgery within 12 months).

At present, ultrasound scans examine the heart antenatally and newborns also have basic cardio/ respiratory tests. Some of the stats above account for babies whose heart defects were uncovered via these existing methods, but the total number of cases discovered still represents an impressive increase.

However, what is personally interesting is that the oxygen testing wrongly identified some babies as having congenital heart defects, although I haven't been able to find exact figures for this.

When in SCBU, Tiddler was diagnosed as having PDA, VSD, and something else- memory hazy- I can hardly remember this- we had so much else to worry about I remember saying out loud that we would deal with the heart stuff later. Crazy really to think I said that but we really did feel as though we were taking an hour at a time sometimes.

On discharge from SCBU, we asked our consulant whether Tiddler's could be a self-resolving issue and he said most probably not. Happily, and to cut a long story short this is not the case and Tiddler has no heart problems- a Cardiac Echo when she was a month old confirmed this.

I sometimes wonder whether with advances in medicine we get a bit too clever for ourselves, in our case ignorance would have been harmless... we would never have known about Tiddler's heart problems as they self resolved. In pregnancy I also had scares as a result of ultrasound scans and all was fine. Don't get me wrong, I am no Luddite. I love the NHS, I am thankful every day for the medical advancements that have kept Tiddler safe and obviously I see how fantastic any improvement in the diagnosis of heart defects is. I just worry that people think its a panacea. I suppose though the benefits clearly outweigh the risks of mis-diagnosis. It is better to diagnose too many children including some incorrectly than miss a diagnosis altogether I suppose? We are fortunate that Tiddler's cardiac issues resolved and we know it.

Thursday, 4 August 2011

Reasons to be Cheerful, 4th August

Reasons to be Cheerful

Ok, so all my Reasons to be Cheerful are Tiddler related- of course!
  1. Almost a year after it was bought, we put Tiddler's cotbed up! YAY! It is almost time for her to be in her own room. This is a really positive sign as we honestly NEVER thought that we would feel confident enough for this.
  2. On a sort of related note, and blogged about elsewhere this week, we have had 3 periods without the Apnoea alarm on overnight. She was fine, of course, and we took one more step towards normality.
  3. Completely independently and totally randomly, Tiddler pushed up on her arms from being on her tummy. This is a massive development- her upper trunk is weak and her arms very floppy. Ha! She's on her way to crawling and will definitely surprise people I think. :)
... actually I will add 2 more

  1. I am getting my haircut on Saturday!!! Ony second time since Tiddler's arrival. Looking forward to this a lot.
  2. Its husb's birthday this weekend and we are going on a family trip to Chessington.

Wednesday, 3 August 2011

Seven Words

The "Seven Words" linky  to describe this week

Very happy, now need to forget past

Tuesday, 2 August 2011

Reflux and Weaning

After several intrusive tests and intravenous antibiotics, Tiddler's "dusky episodes" during the first 8 days of life were put down to Reflux. I remember the first time a Paediatrician said this I was very cynical and I will admit highly irritated. My newborn baby had stopped breathing for God's sake- how can that be Reflux? She had nothing in her tummy the first time it happened, how can that be Reflux? Anyway I was of course thankful it was nothing more sinister. We were "finally"* discharged with a diagnosis of "Silent Reflux" and a very daunting cocktail of medication at a user-unfriendly every 4 hours, 4 hours, 6 hours and 6 times a day.

We have always kept Tiddler's crib tilted (waste of a bloody good John Lewis glider crib, that!) and until very recently always kept her upright for an hour after every feed. I dont jig her about. She misses out on a lot of silly Mummy / Tiddler dancing :( Her medication has been tinkered with over time and she is now on a fairly strong medication once a day. (Omeprazole)

The thing about reflux is that its a condition that varies wildly but does seem to be exacerbated by teething / colds etc. Frustratingly it can seem that you are turning a corner and things are getting better and then you can be brought down to earth with a bang and whole lot of vomit!

Our Paediatrician had said originally we should wean at 4 months but due to Tiddler's low tone and inability to sit, as well as suspected Cows Milk Protein allergy we were then advised against this. Tiddler has had a rough couple of months health wise and so weaning has taken a back seat until now.

Home Made Baby Food

She has been doing really well with purees in the last couple of weeks, certainly enjoying an unprecedented hunger and desire to eat. However, she does seem to have a very strong gag reflex. This emerged in the first few days of weaning a while back and she gagged and vomited on a very thin puree of carrot. Since then, she has mainly coped with puree and we never gave her milk just before solids so as to make sure she keeps the milk in her! I am now attempting to introduce lumps and am finding that reflux is rearing its nasty head again :( This evening I gave her 1/4 of a tiny tiny Annabel Karmel pasta shell... she managed three quarters but the 4th made her gag and she threw her entire feed up. Now the saving grace is that Tiddler hardly seems bothered by this- its a silent evacuation rather than lots of tears and retching- just realised this is quite graphic, hope there are no vomit phobics/ people eating while reading this ! It is hard for me though- I spent quite a while preparing her dinner and then feeding it. To then see it all come back up again is dispiriting, feels like Reflux is back. I dont know how much slower we can wean her though as the lumps were tiny. Puzzled. Bloody Reflux.

* we had a lot of "final" discharges...

Sunday, 31 July 2011

Sixties /Seventies/ Eighties Mum...

My Mum has four children, and has the unenviable boast that she has given birth to children in three different decades.

Tiddler is her second grandchild, but the first one via one of her daughters. So, inevitably she has passed on a bit of guidance/ advice from time to time- probably more to me than to her daugter-in-law. Most of this advice is sage, welcomed and respected. Of course it is- shes been there, done that times by 4.

Mum has mentioned some of the things they did in "their" day... more by way of anecdote as topics have come up rather than cast iron "gospel" advice from her to me. Some is hilarious- its priceless stuff, some is darn scary. Wondered who else could share some of their mother's gems of wisdom/ tales of parenthood 60s/70s/80s style...

  1. Wean at 3 months
  2. Give raw egg as one of first foods
  3. Put brown sugar in your baby's bottle if they are constipated
  4. Give Marmite on toast as one of the first foods
  5. Put the pram "down the bottom of the garden"
Any others?

A student ''mother-of-that-week'' living in one of the homemaking apartments prepares the day's food ...

Silent Sunday - 31st July 2011

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Silent Sunday

Saturday, 30 July 2011

First Step Away From Apnoea Alarm

We were very brave last night.

6 hours after Tiddler was born, she went purple and had what the medics call a "dusky episode". It was terrifying and was to happen again several times in her 1st 8 days.

The second time we were discharged from hospital, we were given an Apnoea alarm for Tiddler to wear.

At first she wore it all the time- in particular I remember one of our only trips out in the early days to Tesco... there we were terrified, totally unprepared in snow, trying to make some vague effort towards Christmas and in the pram was Tiddler, our ticking baby! Tick, tick, tick... After a while when things had calmed down a bit we made the conscious decision to take it off during the day so we all had a bit of normality. We have however always, put it on her at night. Its gone off periodically, most probably due to false alarms although we won't ever know for sure I suppose.

Anyway, last night at 2 am it went off again. The alarm is incredibly shrill and urgent as you would expect and I am too used to it waking me up! I instinctively reach out to touch Tiddler's tummy- this always makes her breathe in and so stop the alarm. You see its incredibly common for babies to hold their breath and its not normally a problem. It is probable that the times the alarm has gone off at home has been because of this. Anyway, last night the alarm wouldnt stop. Tiddler was fine though, she was breathing, asleep, and her colour was normal. The sensor pad had come off her tummy. Phew! As she was still asleep, we decided that rather than to risk waking her and creating a far larger problem (an incredibly angry baby), we would sleep without the alarm on. This was such a brave move, probably a bit too bold, but we were clearly both influenced by 2 am logic!

I woke quite a few times overnight but of course everything was fine. I felt we had really achieved something by not using the alarm all night. The last thing we want to do is medicalise our daughter- we have fought tooth and nail in the recent past to avoid tube feeding etc- and so its good that we the parents were able to go "cold turkey" like this.

Tonight the alarm is back on... I don't feel as brave somehow! She is still in a crib next to our bed and we are currently contemplating a move to her own room. I dont think I will be able to do this without the apnoea alarm. Thats such a terrifying prospect still. One step at a time eh?

Friday, 29 July 2011

Can You Get Vomit Out Of Velcro

What a great day! A friend and her two children came round this morning which was lovely - I especially loved telling her all our good news and she said she could see the difference in me and how less stressed I seemed.

This afternoon we had Hydrotherapy at the local hospital. As usual, an intense nursery rhyme fuelled session! She is doing really well but splashes so much, to the great irritation of the other (older) children around her! She splashes and then doesn't seem to understand why her face is soaked- the cause and effect thing hasn't quite kicked in there...

Further to my post yesterday about Tiddler's feeding, I have been trying to encourage her to chew a little and move on one step from purees. I tried her tonight with soft carrot, totally uninterested. Then for pudding I gave her mashed plums and unfortunately she gagged and threw all of her meal back up :( This was really gutting. My husband and I had just been discussing how much better her reflux seemed to be as well :( So... I dont know how to play this now. I don't want to go too quickly for her, and I certainly dont want her to throw up her meals and so slow down any weight gain. Crucially- I dont want to put her off her solid feeds (she previously had a very strong milk aversion). The Speech Therapist has said that babies with reflux often have a very strong gag reflex so its no surprise and did also happen earlier on when we had just started to wean. So, I am a bit unsure- and nervous about what to try next! So yeah, she threw up all over herself and the lovely feeding chair loaned by our Council. So, can you get vomit out of velcro?

Thursday, 28 July 2011

Reasons to be Cheerful , 28th July

I really enjoyed doing this last time so here goes again:

  1. Tiddler is still feeding! She cries for feeds, finishes her feeds AND is doing really well with solids too
  2. I have spent lots of time with friends and their rugrats recently- nice as we have been out of action so much with Tiddler being unwell / in hospital etc In particular I really enjoyed spending time with a couple of old school friends
  3. Tiddler is starting to sit! We have been told that she will be slow to sit / crawl etc as she has Hypotonia meaning low muscle tone. In effect, she is floppy. However, at physiotherapy the physio was really pleased with the progress Tiddler had made and she actually sat for the first time (propped up and at a really crazy angle!) when there. I am confident that she is well on the way to proving a lot of people wrong...

2am Shenanigans with Tiddler mark 2

Ho ho ho how I laughed to be woken up at 2 am for milk by Tiddler. Hilarious! The bizarre thing is that she has literally only ever done this once or twice when tiny tiny... now I know thats not normal, and indeed due to her size we were having to wake her in the night for feeds untill she was 4 or 5 mths old.

Its so funny, I keep saying it but I swear someone has swapped my baby! She has this voracious hunger (note to self- probably normal hunger) and its just so lovely to see. I don't really mind the 2 am thing, course I don't. Until you have had a baby who refuses milk to the extremes of dangerously low blood sugar or has been tube fed as the only means of getting milk down them, I don't think you can fully appreciate how bloody fantastic it is to have a baby that feeds!

This whole new baby malarkey (you know, the one that has been swapped) is confusing though. Solids are now also going really well, thanks to a special tumbleform chair being delivered by our Local Authority - very very swiftly I might add. Tiddler has Hypotonia (low muscle tone) and some breathing/ swallowing co-ordination problems and we struggled to get her to feed in her normal high chair as she slouched and was just plain not interested. This chair on the other hand has changed everything. She opens her mouth like a little bird and gulps her food down.

I am really enjoying cooking for her and watching her experiment with different flavours. I am trying to get the balance right though between solids and milk as I think at times she is filling up with purees to the detriment of her milk, hence the 2 am wake up call!! I am also anxious that we are behind a little in terms of food types- I am trying to encourage chewing but I will admit this is not going too well and I am terrified she is going to choke! Today I tried a bit of very ripe pear. Didn't go down too well it has to be said.

We are learning, but thats fine and thats normal. Normal is good. I have missed normal.

Wednesday, 27 July 2011

Time and hamster wheels...

A question for you all: how on earth do you fit things into your day? Especially those of you juggling paid work and more than one child? It is impossible I swear.... I know they say that if you want something done to ask a busy person and I do believe there is truth in this, maybe this is my problem. I am struggling to fit the essentials into my day let alone the luxuries such as blogging/calling family/non-urgent laundry/ eating cake etc

Tiddler has begun a new regime of "sleep is for the weak, sleep is for the weak, sleep is for the weak" and so baby free time where I can rush around the house like a whirling dervish are over, my activities are curtailed and the house looks like a bomb has hit it. Joy.

So, will this change? How do people get all they need done? I NEED TIPS! In particular I am finding the preparation of purees for Tiddler to be particularly time consuming but really do want to home cook her food if at all possible. Now she is eating what must be half her bodyweight she's getting through what I prepare pretty quickly and so its a bit of a neverending  hamster wheel. Oh hang on- is that the deal, maybe I am missing something... is riding the hamster wheel an essential feature of motherhood?