Holland can Feck Off

Lots of you will know the poem, "welcome to holland". Well at the moment I am not managing very well grappling with my Dutch phrase book and my map has a massive whole in the middle so I have no idea where I am going. Problem is, anyone I ask doesn't know either.. There's no label, no diagnosis.

"Just say Global Developmental Delay" I am told. Thats a bit like being told to pretend I am in Spain rather than Holland or the Italy I signed up for as Tiddler is doing so very well in so many ways. Squeezing her into a label for convenience just isn't on.

So we'll carry on, fighting her corner, shouting loudly.

In the meantime, it seems there are bigger gaps than we had thought between her actual abilities and those "expected" of her. This makes it all the more important for those healthcare pros to do their thing, do what they say they will do, and see past the lack of labels to the reality. My little girl has a world full of energy, talent and promise but we need help to unlock it all.

For those of you who don't know about the poem I refer to above here it is:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

********
Thanks for reading

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.

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...

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
 

 

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...

Cuddle

Tonight Tiddler gave me the most lovely cuddle.

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

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

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

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...

Blog Camp

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...

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!

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...

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...

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)

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...

Misfits or fraudsters?

Tiddler has come a long way. In our darkest days she has been tube fed, had lumbar punctures, canulas in her head, tested for all manner of chromosomal abnormalities, even checked that she had shoulder blades. She is no longer tube fed, has no chromosomal abnormalities and fundamentally is well.

Why then do I feel like I do? I have recently come down from the high of Tiddler's latest discharge from hospital, her feeding VASTLY improved and the Paediatrician being pleased with her.

I met up with some Mummy friends over the last couple of days, its the first time we have been in a group of same-aged babies for about a month. I have found it hard. I know its important to get out, to let Tiddler interact and see the other children. But at what cost? Sometimes I wonder if its worth it.

Some of the others are crawling, some are standing, some are cruising. Tiddler can't sit. Well- she can actually, she has started to fairly recently, the problem is she won't. I think its too hard for her as her hypotonia (low muscle tone)means she doesnt have the control in her trunk to sit very easily. Actually, if she could just walk she would be a lot happier as her legs are great and operate totally normally. Clearly though, you can't walk before you can sit. Thats probably the most visible difference. One of the Mums suggested a group photo of all the babies sitting, I literally felt dread as I knew Tiddler couldn't sit. I wanted the earth to shrink us up, I didn't want this difference to be so glaringly pointed out. The photo didn't happen, thankfully. I need to get over this sort of thing.

She is- of course- a Tiddler hence the irritating "Was she premature?" question referred to here. Weaning is slow due to delayed swallow, a strong gag reflex and her low muscle tone. She will be a Tiddler a while longer!

BUT, she's not poorly now, she doesn't have a life limiting condition, she is happy, on the button intellectually and a babbler bang on course. So why do I feel as I do? I feel guilty that I feel like a misfit. Tiddler has left hospital whereas others did not.

We have been offered a place for a couple of hours a week at a local childrens centre for children with additional needs. I feel like we don't fit in here either because thankfully she doesnt have a serious illness or disability. I feel like a bit of a fraud. I also feel like a fraud for tagging this blog on the "special needs" section of Netmums. Why? Is it because I haven't come to terms with Tiddler's health problems or is this just symptomatic of the no man's land grey of being without a diagnosis?

So yep, we are currently without a diagnosis. Tiddler is still under a Geneticist and the belief is that there is an overarching reason for all of her health issues but that we don't know what that is yet. Nor do we know when we will know! It may be that we never get a diagnosis for her, as I have recently learnt that this outcome is more common than you would think.

We just don't fit in. I have to get over it I know I do. I suppose the camp we fit in at the moment is the "without a diagnosis" camp! I am not good with grey....

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

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!

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.

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.

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...

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?