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Thursday, 18 October 2012

Supermarket Rage

When I am Prime Minister, I will be introducing stiff penalties for all those lazy inconsiderate people that park in parent and baby bays at supermarkets.

It really gets my goat. When they have circled a car park for 10 minutes, while singing desperately to a screaming baby and trying to placate a toddler with the promise of snacks, well *maybe* then we can talk.

Until then, if these selfish drivers, both men and women, could try and park in one of the HUNDREDS of other spaces available and use one of the HUNDREDS of shopping trollies available, that would be grand. Maybe then I can park in one of the 15 parent and baby spaces, you know the ones near the ONLY trollies I can use with a baby and a toddler.

"Online shop!" I hear you say, I do when I can, but we all need to top up now and then.
I could use my pushchair, but that would mean I could only use a basket, that's if I could get the children out of the car in the first place.

So, the next time you dash to Asda - yes it was Asda- for a pint of milk please spare a thought for the frazzled mother cajoling her children into the trolley. It could be me, and I could really do with that parking space.

Sunday, 14 October 2012

The Frustrations of being a Stay at Home Mum

When I was growing up I wanted to be an Air hostess, Prime Minister, Lady Diana, an RSPCA worker feeding lions (I know, I know).

When older I was going to be a solicitor or barrister, possibly work in government policy. I had high hopes for myself, others had high hopes for me. Life did life's thing. I was thrown a couple of curved balls, dodged some and were clipped by others and thrown off course. I was floored by one or two experiences, too painful to blog about. The nature of my life experiences meant I have spent a lot of my adulthood running, hiding and avoiding -a pattern of behaviour that has shoehorned me down a narrow and undemanding career path and at times imprisoned me on a progressively eroding island where I'm scared of my own shadow. The island I live on is at times tiny, a very safe existence with no risks or danger. It's not a very happy place though and I still sometimes suffer from anxiety attacks. I am a great disappointment to my teenage self, the one who could conquer all, who would be a high flyer, who was unstoppably determined.

So why all this navel gazing? It was never in my plan to be a stay at home mum. That's what I am: a SAHM, homemaker, housewife. I love being a Mum, of course I do, but what else do I do? What else can I be proud of? How do I use my brain, or rather remind myself and the outside world that I have one! I don't want my daughters to grow up thinking that Mum is "just" a mum. As I have two children under 2 years old any serious career is a little way off, but in the meantime I need to address the small issue of my self esteem that is currently scraping the floor. I am fiercely proud of Tiddler and how much she has overcome. I need to borrow a little bit of her fight. I want to be happy about who I am and what I am. I think I would have reached this point even if I hadn't been blessed with children, but being a Mum within four walls for what seems to be so much of the time has brought my lack of self-belief into sharp focus.

Where do I start? Someone on Twitter told me about 101 things in 1001 days, this seems like a good beginning. Who's with me?

Undiagnosed or No Diagnosis to make?


So baby is 12 weeks old. At 12 weeks with Tiddler we had only just about left hospital, she was behind in development already and things were very uncertain.

This time round, Baby is developing normally we think, although I will admit to a niggling worry about her tone. her arms, particularly the left, is very rigid- the exact opposite to Tiddler, she sometimes lets out a cry when we lift her out of a chair. Also, she still has head lag from being lifted from the floor. It took Tiddler about 12 months to lose this, and it was always commented upon as being unusual. That baby also seems to have this is worrying me. Does this suggest a link, a genetic problem they share?

This may appear hysterical or disproportionate but just as with an undiagnosed child you spend the whole time wondering if *that* symptom or quirk is *the* missing piece to the Tiddler jigsaw, so I find myself wondering if similar physical attributes or features point to a genetic wobble that the siblings share.

Despite everyone telling me, and me believing most of the time, that things are different with Tiddlers little sister, I can't quite believe that this is the case. How can two children be different like this? Of course, this is a stupid thing to say, you can have very different siblings, but I suppose because there is no explanation for the way Tiddlers start in life went, I cannot rationalise that the two are so different as to not share the same problems. If there is no genetic issue, then why has it all happened to Tiddler in isolation??

I suppose it all goes back to our need to explain and find a reason for everything. Scientific advances have encouraged us to believe that nearly all questions have answers, so when one finds a question without an answer we struggle. We no longer attribute things we don't understand to fate or God, we want reasoned answers for everything. Of course, not everyone finds their answers and so are left lacking and searching rather than living in the moment.

Tuesday, 2 October 2012

A Good News Day



In the past this blog featured quite a lot of bad news and sadness. I wrote last night about how I had been avoiding what was once therapy for me.

I have lots and lots of good things to say. I suppose part of me has felt guilty that we have a happy ending when others with an identical start to Tiddler do not. Please don't misunderstand me, there are still differences, problems and hurdles to overcome but compared to what we had been warned to face, she is flying.

Tiddler is now 22 months. Where did that time go? She is a cheeky and mischievous toddler who likes dancing and bananas and Mr Tumble, in no particular order.

2 weeks before the arrival of her little sister she got up and walked. Literally. She had been cruising for a while, and whereas we had been warned she may not walk, it had been clear for some
months that her physical development was improving at a faster rate. She stood up unaided in the middle of our lounge on the Thursday and by the Saturday had taken her first steps. I just couldn't believe it. I couldn't believe that my little Tiddler had proved everyone wrong again. I wish I could bottle her drive and tenacity.

She has been walking for 3 months now and is increasing in confidence all the time. She is close to being signed off physiotherapy we think and with that her weekly hydrotherapy. This will be an incredible moment for me as she has been receiving physio since she was 10 weeks old!

We await our next genetics appointment with great interest. I am even saying out loud that maybe they have made a mistake and actually there isn't anything defective in her genes? Maybe there is no genetic disorder?

In the meantime we have her sensory issues, poor weight gain, ENT problems and behavioural issues so I know we have enough to keep us quiet for now!!

I have been unsure whether to write about Tiddler's progress but decided that it's only fair to document the positives as well as the more difficult times. I do feel guilty about our happy "ending" which is strange as I am sure parents of "normal" children don't feel guilty about their normality...

Sunday, 30 September 2012

Birth Story, Flowers and Balloons

I have been deliberately avoiding this Blog. Especially a few months back when I was so scared about the impending birth and how my second pregnancy would continue. It was a superstition, as if I wrote my fears down they may happen. Blogging was no longer a therapy, it was as if it was a means to trick me, to catastrophise to actually make an unhappy ending more likely.

Latterly I have been too darn busy to blog, and too shattered at night certainly. I am grabbing a rare moment of peace to update and I sincerely hope I shall be able to keep it up again!

BIRTH STORY

As Tiddler was induced at 38 weeks, I was convinced that this baby would also come early, whether naturally or not. In fact, this time round I also had a couple of scares resulting in an overnighter and increased monitoring as there were fears that I was losing amniotic fluid, as happened at the end of my first pregnancy.

In the end, I was booked in for an induction after a "stretch and sweep"
- as glamorous as it sounds... And managed to get this booked in at 40 weeks which was down to a combination of my anxiety, what happened to Tiddler shortly after birth, stress over childcare for Tiddler if my baby arrived too late, being Strep B positive and just having a very understanding Consultant.

So, the date was set for Saturday- my actual due date. As soon as the date was decided I was terrified. Terrified of the what ifs, but obviously knew we had to get the baby out!

It's funny, this time round I was less scared (I had been terrified first time round) but almost more so in some ways as I knew what to expect!

The hospital was full to bursting that weekend and I was told I could not come in yet but to call in another 4 hours when they would be confident that the situation would be different.
It wasn't and it took 2 further days for me to get the "ok" and get admitted. When I asked later why this was, I was told that it was down to sheer numbers of women in labour, that there is no longer a quiet time, that every day is a busy one.

Eventually, I got the call and was asked to go down immediately-luckily we live very close to the hospital!

As soon as I was shown to my room and met the Midwife it was clear that they thought they had a "right one" on their hands. I couldn't stop shaking, was asking probably very annoying questions and was shall we say "high maintenance".

The anaesthetist was asked to come and see me, they were anticipating me needing an epidural/spinal block, for no other reason than I was coming across as a high maintenance whinge-bag (think the nightmare woman on One Born Every Minute)

After anti-biotics were administered via a drip because I had recently been found to be Group B Strep positive, the Midwife broke my waters.

I had practised and used Natal Hypnotherapy for my first labour, I found it brilliant, and this time round I had been practising with my CD every day too. The CD was put on a loop, hormone drip was in, TENS stuck on my back.

Pretty quickly the pain was intense. INTENSE. I had to try very hard to remember the principles of natal hypnotherapy but I did manage to "zone out" for a while. After what felt like really not very long at all I was questioning my ability to carry on. This was of course probably the transition stage but you never think that at the time, do you?!

The midwife was also obviously doubting my abilities as she scurried off to find aromatherapy oils to calm me down. Nice of her, but I didn't really need calming down, I needed the pain to stop! It was at this point that I started to panic... Why wasn't the hypnotherapy I had practiced so dilligently cutting it this time? I was now thinking epidural and was really really struggling. I remember saying several times that I was never doing this again... So much so that at one point the Midwife finished the sentence for me ".. We know. You are never doing this again..."

I don't remember what I measured at this point but at 7pm a new Midwife came in and the handover began. At about this time there was some concern as the baby's heartbeat kept dipping when I was contracting. A clip was placed on the baby's head to monitor the heartbeat more reliably. Still, the heartbeat dipped and it was decided that this was because the baby was dropping during contractions and moving down. I got pretty scared at this point. The midwife seemed concerned and I remember thinking just give me a caesarean quickly and get the baby out! At about this time, the pain in my pelvis was excruciating and the newer Midwife changed my position to lie on my side which really helped. The clip on the baby's head helped them to ascertain that the baby was safe.

It was about this time that I was offered gas and air. After the first inhalation of this I was hit with a pleasurable giddy feeling. In retrospect I was offered this really quite late in the day! When I had been measured before the handover was taking place I was told I would have the baby at about 9.45pm. Not at all long after this I was measured and told I could push now if I wanted!!

This panicked me- I couldn't push- they were doing their handover... I had to hold on till they were ready (!) According to my husband I did feel ready to push pretty quickly. The actual pushing took longer I think this time round.

I had 2 Midwives for the actual delivery as it was still handover time. The big push lasted about 15 minutes I think with an hilarious moment when the head only was out and my half -born baby started crying. I remember commenting that I thought that was weird!

The baby was delivered actually pretty easily, no stitches, no problems. The entire labour took 3hrs 33 mins. I was very proud to have done this without stronger pain relief than TENS and Entonox. In retrospect, the natal hypnotherapy must have helped me cope with such a fast and intense labour. I am certain that without the visualisation techniques I learnt from the CDs and my tutor, the pain would have been completely unmanageable and i would have resorted to an epidural.

My brand new little girl was laid on me straight away for skin to skin contact which was fabulous and I instantly fell in love. Cliche but true. Her colour was very grey which worried me especially given our history with Tiddler but I was assured this was ok and probably down to the speed of delivery. Indeed she had little pin prick dots over her forehead and head for some days afterwards, again due to the speed of delivery.

Because of our previous problems we were supposed to be held on the labour ward for 12 hours after delivery. It was clear this couldn't happen because they were just so desperate for space. We were fine with being moved onto a ward with the proviso that she would still get a full paediatric check that night as had been requested by Tiddler's paediatrician.

Whilst waiting to be buzzed into the ward I had the most horrific feeling of dread and panic. Obviously it was a place we hadn't been to since everything went wrong with Tiddler and I had not anticipated it to bring back the memories that it did.

When in the ward we settled in to wait for the Dr. The baby is part of the CONI programme - Care of Next Infant - as Tiddler had life threatening apnoeas and so we had an apnoea monitor to use from birth. This was however defective and so I felt I couldn't sleep in case she stopped breathing.

SCBU was really busy as well as the delivery suite and so we had to wait until 5am for a Dr to come and check baby. All of this time I was alone, blissfully gazing at my baby, but too scared to sleep. Too scared that if I slept the same thing that happened to Tiddler would happen again only this time I wouldn't be awake to get help. So I stayed awake. Luckily it was peaceful in the ward and baby was content.

The initial paediatric check was completed and there were no initial concerns. This was a massive relief. In the first few hours after birth I had been told several times that every baby is different, that there is no reason to believe there would be a repetition of events. Every child is different of course as is every pregnancy and labour but while the causes of Tiddler's health problems and shaky start remain unknown and probably genetic it was and is still hard for me to believe this mantra.

At the start of visiting hours the next morning my Husband arrived and shortly after there was a delivery of flowers and balloons. This was wonderful and hugely symbolic for me as the first time round there was no period of newborn bliss and celebration. There were no visitors. There were few cards and there certainly weren't any flowers. We just didn't know whether Tiddler was going to make it and so people were unsure how to react.

This time, we could do the normal newborn things and allow ourselves the euphoria that things were ok and we had brought a beautiful little life into the world.

During day 1, baby had a more comprehensive paediatric check and again was given the all clear,as far as one ever can of course.

In the meantime, I cannot deny that I was very jittery. Panicking about her new and strange breathing noises, being terrified about her bubbling at the mouth, staring and staring at her chest to ensure she was breathing. I just couldn't "stand down" to sleep, it felt like I was on alert the whole time.

After 2 nights in hospital we got discharged. This time I was twitchy but not terrified as we had been the first time round. We walked out normally. We had the balloons, the flowers, my baby was healthy and I was blissfully happy. This is what it is supposed to be like. Because it wasn't like this the first time round I am so grateful for how things have turned out this time and we both truly appreciate how blessed we are.

So here it is. My birth story. The happy ending. Or so we hope. My husband has just remarked how ironic it is that this mega blog post has actually taken me longer to write than it actually took to give birth! Probably says more about my writing than the birth...




Tuesday, 15 May 2012

Developmental Paediatrician

Today Tiddler had an appointment with the Developmental Paediatrician. I went on my own with T, unsure of what it would entail but reckoning on a 15mins with possible immediate discharge.

2 hours, several Braxton Hicks and a few more grey hairs later, we emerged from the appointment with T beyond tired and me fighting back the tears.

Ironically, the appointment went quite well...it was very detailed, with the Paediatrician taking a lot of history and then observing her accomplish various tasks: drawing, identifying objects, building block towers etc etc

She more or less hits the spots that she should, finding herself in the 15-18mth bracket for most aspects apart from communication which she was a bit more advanced, and cognitive and personal care or something like that which she is more like 12 mth level. It was a very interesting process to observe, she casted objects like a trooper, totally refused to build a brick tower.. It was reassuringly typical behaviour...

They did express concern as to her attention span... Which is woeful and incredibly incredibly exhausting so I was glad that this was picked up on as I felt validated. I have been trying to tell people how difficult it is to manage her as she will not stay on a task for more than 2 minutes, if you are lucky!

Her head banging and casting behaviour was also picked up on again and the basic upshot is she is getting referred to our Local Authority Educational Psuchologist to be assigned a pre school teacher. I have been trying to get T into this system and had been told before that because she was without a diagnosis this was unlikely. Thankfully, now she has been seen by the Paediatrician they have a Statutory duty to notify the local authority.

So a positive appointment all in all but there is no way I am flying solo with appointments like that again. It's impossible to manage bump, bags and very wriggly non walking toddler without a pushchair... Again... Not allowed in the building... We have heard that somewhere before...

Tuesday, 24 April 2012

My Local Children's Centre- inclusive?? UPDATE

Today was one of those days you really dread. Having to have a public confrontation with Officialdom *

(* term used Loosely)

I was already very worried about my Midwife appointment today. I have no child care and so Tiddler has to accompany me to all of my antenatal appointments. This is far from ideal and incredibly stressful for both of us. She screams and cries as soon as anyone so much as puts the blood pressure band around my arm, let alone tries to take blood or if I have to lie down.


So anyway, apparently, "Every Child Matters"... It didn't feel like that today.

My complaint email is copied below. I will update with any response I get.

I visited your .... Centre today, 24th April and wish to draw your attention to the experience I had.


I had a booked Midwife appointment and, having used your centre before and being aware of your pushchair policy, I called ahead. I called on 18th April to seek reassurance that I would be able to bring my pushchair into the Children's Centre. I was told that this would be absolutely fine, Midwife appointments were different, but that you couldn't take a pushchair in to the Play and Learn sessions. Understandable, and I have indeed left my pushchair in the buggy park when I have attended Play and Learn sessions.


Upon arrival at the Centre today, I was told straight away that I could not take the pushchair in. I explained that I had called ahead and had been assured it would be ok. I was immediately challenged and asked who exactly I had spoken to. Unsurprisingly, I had not taken the name of the lady I spoke to (although looking at my phone records I have established it was 18th April at 08.48) I explained that my child has additional needs and so she had to be seated in the pushchair.


The first employee then went to get a colleague who came into the reception area. This colleague was clearly more empathetic than the first but was still adamant that I could not push the pushchair into the Centre. I explained that My daughter cannot stand unaided, cannot walk yet, has additional needs and that I have no child care meaning she must attend with me. I asked how else was I supposed to attend my Midwife appointment when the clinic is held here? The whole experience was made all the more frustrating as I had called ahead to establish that there would not be a problem. 


I was told that having the pushchair there posed a danger in that routes to fire exits could be blocked. I wonder then how a wheelchair user would have been greeted? Are they also guilty of blocking fire exits? How is this policy inclusive? I cannot believe I am the only Mum with a non-walker attending the Midwife, let alone a Mum of a child with additional needs. As the Midwifery clinic is held in the Children's Centre I cannot believe it is acceptable to attempt to bar access to services in this way.


The whole incident was upsetting, frustrating and embarrassing as the conversation was held in reception in earshot of one other mum.  Eventually, it was suggested that my daughter sit in a Tumbleform chair, or the worker would speak to the Midwife to see if she was happy if I took a pushchair into the appointment. The Midwife was busy and so was not disturbed, I assured the Centre worker that there was enough room in there for a pushchair- it seems that she did not know the room. In the end, I was told I could use the pushchair today, as a one off. 


At the very least, I believe the access policy should be reviewed. If not all patients can attend the Midwife clinic because of the Children's Centre policies, I don't see how it can be held there. this is not inclusive, in effect I am being denied a service because of my daughter's health problems. I understand that you cannot allow every pushchair in the building but at the same time I also think there needs to be some flexibility, especially when I had called ahead to check the position. This was a humiliating and stressful experience and I look forward to your response.



As promised, here is the response to my complaint:



"Dear ******
I was very concerned to hear that you did not have a happy experience at ******* Children’s Centre this week.  I cannot imagine how difficult it must be for you at the moment.
 
I have spoken to the administrator who was your first contact on Tuesday, and our family worker who was the second member of staff.  Both are extremely sorry that you went away feeling upset and angry.  I gather that you were finally given access to meet the midwife so did not miss your appointment. 
 
We are having some issues at ******* at the moment as you have probably noticed, with a leaky roof.  With all this rain that has not been made easier and the repairs are taking longer because of it.  This has made the corridors and fire exits rather difficult to access which would not normally be the case and I believe the staff were being very concerned around the health and safety of all people accessing and exiting the building.
 
I also wondered if you would like to join a group of parents who could advise us on how they feel Children’s Centres could be more inclusive.  ... we run a group for children who have been diagnosed with autism and the parents are vital in informing us about the service we deliver.
 
I do hope this email has made you feel more reassured but should you feel you need to discuss the matter further, please do contact me on the mobile number or email me on the contacts below...."




And in response my reply... There is still no confirmation that I can take a pushchair into the building. I appreciate the time taken to reply but feel that this reply did little to address my complaint.


"Hi ****

Thanks for your response to my complaint. I appreciate the time you took to look into this, thank you. However, I am unsure from your response whether next time I will be allowed to bring the pushchair in to the building?  Can you please confirm that this will be the case? 

While I know that there are building works at the moment, certainly when we were at the Centre there were none inside and no obstructions of fire exits. As I asked in my earlier email, what am I and others like me supposed to do ? Would the policy be the same for wheelchair users? 

Finally, I would be interested in joining a Parents Forum, certainly-great idea!

I look forward to hearing from you"

Will post any response to the Blog. Anxious to get this resolved though otherwise pretty concerned as to how I will attend any further Midwife appointments... Especially if I don't have notice to ask the Midwife if she can meet me elsewhere
 

 

Sunday, 22 April 2012

I find different difficult.

Tiddler had her OT follow up on Friday. In the main, the appointment went ok. her headbanging is still the major concern... I had managed to video episodes of her headbanging in the car which was useful I think.

They have no idea why she is doing this, my theory is that it is Tiddler trying to get a "buzz" or any sort of sensory feedback. It isn't linked to mood but is much more prevalent in the car. Unfortunately, Tiddler is still too small for the next size car seat which is frustrating nd means there is little we can do about her seating for now really unless we buy an entirely different car seat to the one we already have for her to move onto. We have found that she stops headbanging in the car when we turn music up very loud- this has prompted the Therapist to recommend we get her hearing checked out but she has also suggested we try T with headphones playing soothing music. I have no idea how small they make headphones but it's nothing a good Google won't solve! We are waiting for a helmet for T as they cannot be sure she isn't causing damage with the banging.

This is heartbreaking for me but I don't feel we have an option right now. I just don't want her to look different I suppose... This is clearly my issue. I need to get my head round it. I don't want people to make judgements about her. I don't want the looks. Or the questions. There is of course nothing wrong with being different. My little girl is fantastic and beautiful in every way but although I can write the words I can't quite live the words as well. I still find different difficult.

Monday, 16 April 2012

27 weeks pregnant

So this might be cheating a but... Not quite talking about Tiddler... More me and bump.

Am now 27 weeks pregnant- didn't know this, had to google it, just find it so hard to keep track as Tiddler consumes almost every ounce of energy I have!

It has been a very different pregnancy so far- I suppose they always are but I have been surprised how different I have felt. I am certainly more tired than I was during my first pregnancy as this time round I don't ever have the option to take it easy or not carry Tiddler. I find her unpredictable movements difficult to cope with, she arches back quite violently and suddenly and I think because she is so bendy this poses more of a problem to the person holding her. This person most often being me. Nappy changes are also a complete nightmare... Any tips very much welcomed! She is too small for the "pull ups" style so we have a fight to get her to lie down and not thrash around, arch or crawl away.

The combination of Tiddler being Tiddler and that this pregnancy has occurred so soon after the last has meant that my joints are struggling. I am suffering from some Pelvic Girdle Pain, previously known as SPD, and have also hurt my lower back from carrying Tiddler. After pushing, I have been referred for physiotherapy, I have had my first session and I can assure you that its not a good idea to take your 16 month old to such appointments. In fact its bloody madness, but that's another story. I have also started Pilates which I hope will help as I still have 12 weeks T go!

The other thing that I hope will help will be if Tiddler can stand unaided to help me out a little when lifting... She is doing well and surpassing all expectations so you never know!

I just can't help myself can I, still written about Super Tiddler!!

Monday, 26 March 2012

What if it all happens again?

So last night, in a rare moment of time, clarity of thought and space to breathe I crapped myself again.

What if the baby is really poorly? What if she ends up in SCBU? What if she is much worse than Tiddler? Tiddler's Paediatrician said that he would like the baby and I to be kept in for a few days to ensure everything is ok and that feeding is established. Great, absolutely fine with that (although the Antenatal Consultant is still pretty non-plussed).

However, I am terrified at the prospect of my immediate post-natal haze... I will need to sleep of course I will. I know that no matter how scared I am the need for sleep will take over... what if she stops breathing when I am asleep? We still have an apnoea alarm from Tiddler - maybe I could take it to the hospital? I know everyone will think I am crackers but their first baby probably didn't go purple once let alone the number of times Tiddler did.

However much I flap and get myself into a blind panic about this, one fact remains. I can do nothing more than I am doing. Nobody knows whether the suspected genetic kink will repeat itself or indeed how much of Tiddlers newborn problems are attributable to genes. I can't wait to meet my baby though and Tiddler is going to be a great big sister.

Wednesday, 21 March 2012

Weight

AS I have harped on before... Tiddler's weight has always been an issue. She wasn't born the biggest baby but many aren't. She lost quite a bit straightaway, again- nothing special.

The problems became evident very swiftly though and it took her some weeks to get back to her birth weight and then quite a few months to cross the magical 0.4 centile. These early problems were down to illness and her inability to co-ordinate breathing and swallowing meaning she tired very quickly when breastfeeding.

Ever since then, Tiddler's weight gain has been slow, patchy and at times tortuous! Apart from just after birth, she has not lost weight but a 20g (less than one ounce) gain in a month is one of her lowlights!

I could probably write a thesis on the causes of her poor weight gain, we may never know what they or it is conclusively. The combined forces of her Paediatrician, ENT Consultant, Dietician, Speech and Language Therapist, Health Visitors etc etc aren't confident of the cause but have suggested reflux, sensory under-responsiveness (meaning she can't feel hunger) breathing difficulties and her poor tone.

Whatever the cause is, I am going to have to chase the Dietician for advice I think, to check she has enough nutrients etc going in at the very least. The whole weight thing though I find very frustrating. We are all bound by the rules of the "Red Book". Your child must weigh X kg and follow that little red line hence they are overweight "What do you feed them?" or underweight "what do you feed them?"- actually, that makes me think the whole process could be automated like the self service tills at Asda as you are asked the same questions and then invariably told that its fine (even when you know its not and have a team of specialists trying to find answers). As an aside, I was told that the weights used in the red book are taken from American data, so why they are treated by some as the be all and end all I do not know.

What is it about weight of people's children though that makes them turn into strange inverted competitive mums? There was a conversation at toddler group this morning about how awful their offspring's weight gain was - incidentally it wasn't- 4 oz in 1 mth, I would love that to be a bad month for Tiddler. Mum no.2, not to be outdone by this announced that her baby had only put on ... wait for it... 500g in 2 months. 2 Months! Shock horror. What do these people think? Why announce to a room full of people in this way? I don't get it... but anyway it wasn't the best conversation for me to walk into this morning.

Monday, 19 March 2012

Finding answers

It's been a strange day where I haven't known whether I was coming or going.

I met with another prospective childminder and was confronted by the inherent differences between her child and mine, (they are a month apart). Difficult in itself. It is, I find, very difficult to know how much to say to childminders and at what point. I briefly mentioned Tiddler’s head banging and throwing of objects but hated to do so although I knew I must.

I don’t think I am ever going to feel comfortable leaving her with a childminder. I just feel that T has been through so much and been so poorly I can’t leave anything to chance and need to be 100% confident about all aspects of the prospective childcare. It seems this is too ambitious.

Next we went to the local Children’s Centre and although there were several mums there that I knew, I could not relax and chat to them as they were amongst each other, because Tiddler was throwing toys and there were some really tiny babies close to her. She really doesn’t understand “no” yet and in any case I don’t believe that she is doing the “casting” deliberately. She cannot grade her movements, particularly with her arms. I think this is partly due to her weak muscle tone as she didn’t have the opportunity to develop her movement skills gradually as a baby normally would.

This afternoon Tiddler went to her playgroup for children with additional needs and upon picking her up I was told how well she has progressed in the last few months. She has done really well I know. Although she is not talking / saying any words yet she is signing really well to several nursery rhymes (Twinkle Twinkle Little Star being a particular favourite) which surely demonstrates how sparky she is. I cant help but wonder / worry why she is not saying words yet but hopefully this worry is just due to my status as the world’s worst worrier rather than anything else.

Drop in a couple of hardcore incidents of head banging, particularly in the car, and we have a stressful day with high highs where I was bursting with pride and desperate lows where I wonder how I will cope as things are consistently difficult and very very lonely. Let alone wondering how I will cope when the baby arrives…

Wednesday, 14 March 2012

Defining Normal

Thought it would be great to join in with Renata's blog hop "defining normal". For more info see over here:



Normal is the multitude of toys I keep near every seat to try to stop the arching and fighting when I put her in

Normal is the food diary I keep, noting daily Tiddler’s food and drink consumption

Normal is that Tiddler never shows any hunger, has never cried for milk

Normal is that her clothes last for AGES- she is 15 mths old and is still wearing clothes that fit her 3 months ago (!?) 6-9 months

Normal is when feeding Tiddler her bottles we have to pause regularly for her to breathe as she cannot co-ordinate breathing and swallowing on her own

Normal is me being an all singing all dancing buffet every most meal times to entice her to eat

Normal is there not being a flicker of reaction when Tiddler hurts herself. And us to know the sound of her head banging at fifty paces

Normal is an appointment at the hospital at least once a week

And when we are there- knowing the best places to park and how to only pay for an hours parking

Knowing our way round the hospital like the back of our hand

Knowing when the Hospital canteen is open and how there isn’t a lot open on a Sunday

Normal is knowing not to get our hopes up at any glimmer of help / referral to ANOTHER specialist/ impending Geneticist appointment. In fact we start with cynicism and get more positive from there!

Normal is always fearing something bad is around the corner

Whats normal in your family?

Define Normal Badge

Thursday, 8 March 2012

An operation

Went to see the ENT consultant yesterday. He was an hour late. Our appointment was 9 am. There was no apology from him, his poor nurse got that job in the corridor.I didn't hugely enjoy entertaining a boisterous toddler for over an hour in a waiting room with 2 toys and a toilet I could barely get the buggy and my  pregnant belly in. Hey ho- I digress and it is very rare in all my recent experience of hospitals.

The Dr said the noise when Tiddler breathes is not predominantly caused by the Laryngomalacia, but her Adenoids. Who knew?? Of all the GPs and Paediatricians that have examined her, no-one has ever suggested that. He said she has to have both her Tonsils and Adenoids out. Eeek. And because she is so light, this can not be done at my local hospital but must be done at a Children's hospital. Double eek. I am having a baby in July. How do we do that then?? I am just going to cross that bridge when we come to it.

In the meantime, we have drops to try in case an operation can be avoided. He also wanted to wait a while to see if she gains more weight. Tiddler has never been great at weight gain, its not a Tiddler Speciality. I have no idea whether this is down to her breathing problem, neither does anyone else. I found being told to wait frustrating as she is not even 8 kg and so there is no way she will be the 14/ 15 kg he said she must be in a few weeks! Even if I stuffed her full of northern pies. So all a bit frustrating but obviously if an operation can be avoided then I am all for it.

Tuesday, 6 March 2012

Ear Nose and Throat

Tiddler has an ENT appointment tomorrow- FINALLY! She has Laryngomalacia which basically sounds worse than it is and means a “floppy larynx” . Her breathing is very noisy, especially when relaxed and asleep. She has a “stridor”  sometimes when breathing and sometimes a "tracheal tug". If we go to a GP who hasn’t read her notes they tend to do a double take as it’s a classic sign of respiratory distress, although not with Tiddler, its normal.

True, it means she has to work harder to breathe but we were told early on it was not dangerous. That said, we think it has had an impact on her weight gain as it takes a lot more effort for her to breathe and feed. She still doesn’t seem to breathe through her nose ever… I don’t know whether that will be mentioned tomorrow but it has had an impact on her feeding.

Our GP said she should probably have her tonsils out but I do not believe this will happen as she hasn’t had tonsillitis enough times. Only perhaps if somebody finally decides her weight gain is insufficient. Who knows.

Whatever they do or say tomorrow I hope they don't shove a camera down her nose/ throat again as she is a lot older now and much more aware. As I often seem to say, fingers crossed.

Monday, 20 February 2012

The results

Today I had the Anomaly Scan. I was very nervous, although the tears only came as soon as I lay on the bed in the Sonographer's room. Tiddler had had me running around all day prior to this so I had no time to worry-probably a good thing.

All was fine. All is fine. Very relieved. Another very wriggly baby by the looks of it!

Sunday, 19 February 2012

Anomaly Scan and Fears

Tomorrow, I have my anomaly scan.

When pregnant with Tiddler, no problems were discovered. With her, it was a totally different pregnancy to this one. With Tiddler I had bleeds, a very large cyst and was measuring small the whole way along.

I have been thinking that this pregnancy is different and so the baby will not be born with any of the problems that beset Tiddler from birth. Is this naive? Premature? Stupid?

I am now wondering if I spoke too soon. People are commenting that my bump is small. This is making me panic. I am concerned that this baby will be born with health problems too.

With my anomaly or 20 week scan when pregnant with Tiddler, I honestly can't remember worrying that the sonographer would find any problems. In fact they didn't. Not a sausage. Well they never do find anything do they? Of course everything is fine...

This time around, our world is very different. Babies with health problems don't just happen to someone else, you don't just see them on Children in Need. This is real life, it affects real Mums and Dads and real children. Although Tiddler is a lot better now, she is not as my OH says "out of the woods" yet and I feel very much as though we have "touched" that life of a family with a very poorly child. I fear that this time we may not touch it but live it. We already have a life with- at the time of writing: 4 Consultants, Physiotherapy, Occupational Therapy, Speech and Language therapy and the support is fantastic but to do it again with the new baby as well as Tiddler? Someone somewhere would have to inject me with oodles of energy and optimism that I don't think could be naturally achieved. How on earth would we cope? I suppose it would be less scary if it happened a second time as we would understand more of what was going on and be able to tell the signs of potentially much more serious problems.

As no-one yet knows exactly what the genetic issue is with Tiddler, they cannot tell us it won't happen again, although they have explained that they don't expect our baby to be any more severely affected than Tiddler. So by this time tomorrow we will know whether there are any major problems with the baby. Or will we? As nothing was picked up with Tiddler, I suppose you never know but at least we will know all we possibly can at this stage. One thing - we will hopefully know if baby number 2 will be a boy or a girl!

Monday, 6 February 2012

Pain and OT

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

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

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

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

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

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

Monday, 23 January 2012

Pregnant!

I have some news. I am pregnant. 15 weeks or 16 weeks. Already losing count which is probably a bad sign!

We have been pretty shocked, but now am getting excited about expanding our little family. There are obviously fears and concerns that what happened to Tiddler will happen again, and no-one can tell me it won't.

You see, they don't know why Tiddler stopped breathing or has had the feeding, muscular etc etc issues that she has had. They don't know for sure it is genetic, although they think it is, and neither do they know what pattern any inheritance of this gene may take.

We have no reason to believe this baby will be worse affected and no-one has ever told us not to have another child. We are awaiting the results of some DNA testing on Tiddler but apart from that will muddle along as normal.

Everyone has been pleased to hear our news. A couple of people thought we were lying- yes that's right it's all an hilarious ruse??!!  I had one very odd encounter where it became obvious that the woman thought we were having another baby to get a healthy one this time... " I'm not being horrible but...." Errrr yes, quite. I genuinely believe that she wasn't being horrible but it says a lot to me about her ignorance. Not exactly embracing difference is it? Sadly I am sure she is not the only one that thinks like this...

Wednesday, 18 January 2012

A Tiddler update 13.5 months old.

Hello Blog, it's been a very very long time.

Things have been tough, busy and stressful. At its most basic, the reason behind my lack of blogging is downright knackeredness!

Tiddler is doing really well physically, she is now very effectively commando crawling and last week finally learnt to sit up on her own from lying. She is managing to stand supported when wearing her bright pink Piedro boots. The Physio was really pleased and impressed with her progress so that's great and it's reassuring to finally see things moving in the right direction.

We have also seen the Geneticist recently, who is now testing Tiddler's DNA for a "few very common muscle problems"... I didn't ask what... I have googled (i know, I know) but not really much the wiser. We will find out the results in 3 weeks. They were originally focussing somewhat on Ehler's Danlos as we have that in our family but as I do not have EDS they have been head scratching a bit. A diagnosis would be good- good for us, good for family, good for Tiddler's dalliances with "the system". We have already encountered the negative "oh, well she doesn't have a diagnosis does she.... " to requests for more support. It may be though that the quest for a diagnosis is both fruitless and pointless. Tiddler is still Tiddler and a label doesn't change who she is. I have got my head round this now I think.

What my head is struggling with though is the isolation. We just don't fit in. Tiddler behaves differently. Mums look but rarely comment or ask about her. To those that do ask about how she's doing, well I struggle with what to say. Do they really want to hear my answer or are they looking for the polite, typically British "fine thanks".  Where do I start? What would I have said in their position? Probably nothing... I am no different to them then.

The main diffiiculties right now with Tiddler are her continued feeding issues, with associated arching and hitting her head when in her feeding chair, general head banging - which I am finding very upsetting- and her extreme under responsiveness to pain. To manage all three is proving draining and very very stressful. We are in the middle of a programme of Occupational Therapy so fingers crossed that this has a quick, positive impact.

In the meantime, I need to get out of the house every day. Tiddler's constant colds, Tonsilitis etc have made this hard and I have felt it! I also need to get myself out on my own. I rarely do this, largely due to feeling so tired, but really must try...