It's Finally Here

Well tomorrow is the big day, Bee is starting school. It's the ultimate cliche but I can't believe the time has passed so quickly. It seems only yesterday we had the summer stretched out in front of us and now school has crept up to surprise us and I'm not ready. I'm not ready to let her go.

For nearly 5 years it's been just me and her, while her Daddy works I've been the one at home. She's my kid, my star, my monster, my Bee, my everything. I've seen every moment of development, every achievement she's made from the small to the huge. She's my constant companion and my best friend. Spending these precious years with my Bee has meant everything to me.

Tomorrow everything will change. Things will never be the same once morning dawns and school beckons. Tomorrow marks the day Bee will start making large strides away from the security of my side to the uncertainty of the wide world. We'll have weekends and holidays but no longer will we have our little daytime world of two. From tomorrow a complete stranger will have care of Bee for more hours a week than I will.

The house is going to seem so empty without her little voice. I'll miss the constant "mama, mama, mama, mama, why, why, why, me too, what you do?"

Foz tries his best to be supportive but I think it's harder for him to understand as not much will change on his end. Bee will be here as he gets home from work as always and they'll have their weekends together.

I'm worried about how she'll cope. I'm worried the days will be too long for her, I'm worried she'll get knocked over and picked on, I'm worried she won't cope with the lessons, I'm worried she won't sit at mealtimes, I'm worried, I'm worried, I'm worried... 

Aside from the worry (and the self-pity) I'm very excited about the challenges that lie ahead for Bee. I know that no matter how difficult or prolonged the 'settling in' period is that eventually Bee will loved school as she loved nursery. I'm excited about some of the things Bee's new teachers have planned for her and I'm very confident in all of them and their ability to help Bee thrive. 

 

The first day of school marks another milestone in my Bee's life and already she has achieved so much more than we could have dreamed. She makes me proud every day.

I love you Bethany May and wish you so much joy and happiness in your new adventure xx

Sad Goodbyes

Well it's finally happened. Bee has left nursery.

Bee started at Sandy Lane two years ago, still a baby and overwhelmed by everything about such a new environment. It took her a long time to settle and not cry at every drop-off. Yet despite the inauspicious beginning, she thrived there. The facilities and staff were incredible, as proved by there repeated 'outstanding' OFSTED reports. By the time her second year rolled around I couldn't drag her away. We've had so many wonderful times there, from farm trips to Sandy Lane's very own Forest School...

 

Sadly Foz had to work on Bee's last morning so my Mum and I collected her at the end of the nursery session. We'd prepared handmade gifts for all 11 of her teachers and it was an emotional goodbye with more than a few tears from all of us. Nursery gave us a lovely folder with lots of pictures and text about all the things Bee had done over the last two years, it's very special as parents don't get to see what their children get up to otherwise.

After leaving nursery my Mum and I took Bee to McDonalds for her favourite treat of chips! She's so spoilt!

I can't speak highly enough about Bee's nursery. The difference her from the baby she was to the little girl she is now is in large part down to their wonderful care and support for us a family.

Thank you Sandy Lane, we are eternally grateful. You have done a incredible job preparing my girl for the next stage in her life. We'll miss you and Bee misses you. Every time we drive past she says "mine" and signs 'nursery'.

Monkey Forest

On Wednesday we were lucky enough to have Foz's day off coincide with Bee's last day of Easter holidays freedom. We decided to do something nice together as (for various reasons) it would be our last trip out for a few months.

Somewhere I love to go is Monkey Forest in Stoke-on-Trent, a 60-acre forest where Barbary Macaques roam free in as natural environment as possible. There are no cages and 140 monkeys live in safety and freedom. The only fences are small, wooden ones that keep the visitors on the paths, the monkeys don't respect them! Monkey Forest also work towards the conservation of the species and have released over 600 Barbary Macaques back into the wild. I really, really like this place!

On arrival at Monkey Forest Bee immediately started with "pam, pam" as we parked. This isn't unusual, in unfamiliar places she craves the security of the pram and will absolutely refuse to walk. If we try she just crumples into a ball on the floor and won't move. So into the pram she goes.

We queued a little to get in, it's Easter holidays after all but we'd been talking to Bee the whole time about the monkeys we were going to see and she seemed very excited. At the ticket booth there were Monkey Forest leaflets so I grabbed one for Bee to look at before we entered. She spotted a baby monkey and that immediately captured her imagination, "baba oo oo mama!" with frantic pointing, clearly she loves baby anything, not just dolls!

We had to pass through the restaurant, gift shop, picnic area section of the park first before heading through the double gates and into the monkey's domain! We walked down the path through the start of the forest, watching all the trees and looking for monkeys but it wasn't until the trees opened out into a large grassed area that we saw them. Monkeys! Lots of them!

I parked the pram up next to a conveniently-placed bench and tried to interest Bee in them but as soon as she saw her first monkey she buried her face in the side of the pram saying "no, no" over and over. Oh dear. It appears Bee likes fake, cartoon or cuddly monkeys but not so much the real thing.

Despite this worrying start Bee wasn't crying, which was hopeful, so we ploughed on. It's a long, winding walk around the 60 acre forest, with the monkeys living in two troops, so there's plenty to see and even without them as an attraction it's a lovely stroll. We made our way around, stopping frequently to try and interest Bee, watch the monkeys or to take pictures. As the walk progressed Bee was more willing to watch the monkeys but still refused to get out of the pram. We unsurprisingly had more success with the baby monkeys, they went down relatively well.

We made a full circuit of the forest and then back out of the double-gate for a visit to the restaurant, gift shop and park.After a plate of chips for Bee (blame the dietician!) we had a mooch around the gift shop. It was very small and very busy. Bee picked a monkey cup and a monkey travel cup and we moved to the till. Bee managed to get herself stranded behind a line of other customers after moving away to look at some monkey teddies and promptly melted down when we tried to encourage her to walk amongst them back towards us. This involved tears and collapsing in a puddle of immovable flop on the floor. Once outside in the open space and away from all the people and chatter she was absolutely fine, meltdown over and done with, forgotten about.

The park went very well despite the gazillions of other (much larger) children charging around and the almost deafening amount of screaming and shouting going on. Bee needed support to play as the bark surface was very difficult for her to walk on and she couldn't walk without holding my hand. The equipment all had ladders instead of steps so I had to lift Bee on to allow her to use the slide, bridge or tunnel. She's getting mighty heavy too.
After a couple of turns on the slide and a stampy walk across the bridge Bee started asking for Peppa Pig. So we trotted back over to daddy, who was minding the pram with all our bags, picked up Peppa and made our way back. Bee was very eager to give Peppa a turn on the little rocking animals, we tried all three. One happened to be taken at first and Bee decided the best way to move the little girl's turn along was to stand right next to her and stare until she moved. Deary me. Still, Peppa got her turn and the little girl went to play on the slide. Everyone wins.

 










Of course then Peppa had to have a turn on everything!

It became obviously after half an hour or so that Bee was beginning to tire, she plonked herself in the center of the tunnel leading to the slide and refused to budge. No matter how many children pushed past, or clambered over and around her she wouldn't move. Plus the more that did so the more upset she became. I had to clamber up the ladder and half into the tunnel myself before she would make any effort towards getting herself out!

I wanted another trip around the monkey enclosure but Bee had spotted something far more fun.... a pay-to-jump trampoline! She does what she always does when she wants to show you something: grabs your hand and pulls you right up to the thing she wants or is trying to show you. The 6-bed trampoline had a large net around it and four other children already jumping away. We umm'ed and ahh'ed for a few minutes as, despite Bee's insistence that she wanted a go, we were unsure if she'd cope with the other children leaping so noisily around her. We'd of course already had the first meltdown in the giftshop and then the tired movement refusal on the park. But still, at £2 for 5 minutes we decided it was worth the chance. The lady supervising allowed me to hop on with her and this is how it went:

Winning!

I had a little trouble during our 5 minutes as Bee couldn't understand why she had to stick to her own trampoline and wasn't free to climb across them all as she chose. Still in the main she loved it. She recently even began leaving the floor ever so slightly when she jumps, rather than just going up on to her toes, a brilliant achievement. Our 5 minutes were up all too soon and we had to get off. Bee was not impressed and asked for another turn but time was marching on, we had about an hour until the park closed and we wanted another walk around the monkey enclosure.

So, shoes on for the walk across to the forest. We hadn't taken 10 steps when Bee stumbled and fell. That's when we knew it was time for the pram. Bee generally is clumsier than others due to her delayed gross motor skills but when she starts to fall a lot we know her little legs are giving up for the day and it's time for a rest.

Daddy gets a kiss from Peppa

Back in the forest we decided to hover around the first grassy area rather than trek all around the forest. There was a large group of monkeys to admire and it was near to the exit for when Bee was ready to leave. I parked the pram up next to the fence and got my camera out to take some photos. It was at this point I was very lucky that a monkey decided to walk across the path right in front of me. Wow!

Only a few minutes had passed when Bee piped up with "me out mama", really Bee?? I was thrilled. It was the first inclination she'd shown to want to leave the security of the pram while we were anywhere near the monkeys. I lifted her straight out and plonked her on the path beside me. She stood at the fence for a few minutes watching the monkeys before I decided to push my luck. Moving father along the fence I shouted "come on Bee, come and see the baby monkeys" and to my complete surprise, she very happily followed me! 

We watched the baby monkeys playing for a while, they were very cute gamboling around the grass together. All was going swimmingly until Bee said something to me that I didn't hear. I leaned down to ask "pardon baby?" and my big DSLR camera, which I'd so cleverly hung around my neck so I could hold her hand, smacked her full in the face. Well that was it. There was no more co-operating, no more happy monkey-watching, she just collapsed into a big ball of screaming tears.

And that was the end of our day at Monkey Forest. Well done mama. Epic. Fail.

We made our way back to the car. Bee wasn't really hurt, it was more the shock that had made her cry, but she was too tired to want to interact anymore so we decided it was time to leave. The park was shutting in a little over 30 minutes anyway.

It was nearly teatime by this point and we had a 45 minute drive back to Warrington in front of us so we decided to eat out before we got on the motorway. I asked Bee if she wanted to and her answer was "nye num nums ow" (nice food out) in a very excited voice. So that was that.

I'll have this one Mama

We ate a carvery I know of in Stoke (where I went to university) which is by a small marina used by narrow(canal)boats. It's a nice view out of the windows for the middle of industrial Stoke, plus Foz and I love a carvery. Bee had a little plate of her own filled with carrots and green beans, which she shoveled in and still asked for more!





 
When we'd finished we had a lovely 10-minutes by the water, blowing bubbles for Bee then chasing them as the wind took them. Despite her tiredness she did a lot of happy-screeching and giggling, even running, in her own unique way!

Evening was setting in and it's still very cold here so our tired Bee hitched a ride back to the car with daddy. We find these days that despite how tired she is, or how long a day she's had she will never sleep unless she's in bed. She won't sleep in the pram or in the car. Mainly this is a good thing as it means she is always keen for bedtime but every so often Bee gets so tired that she makes a constant drone noise that doesn't end. It's purely how she deals with tiredness but it can be a little frustrating when we know all she needs is to just let herself drop off. On this day there was no tired drone, just contented quiet while she listened to her Peppa Pig CD.

All in all it was a very successful day out, Bee maybe didn't show as much interaction with the monkeys as we'd have liked and we had a couple of meltdowns but she coped admirably with the scores of children, all the textures and sounds and even did some walking around the forest to boot. I'd call that a win :)

Happy girl!

Bee's Dictionary Updated

Bee has a handful of new words, our favourite being 'knee'. She likes to come over, point at your lap and say "mama knee". Who can resist!?

Our word total is now up to 38, a massive achievement! 

*NEW*

Knee                                Knee

Nappy                              Da-pee

Shoes                              Sues

Boots                               Booo

Word                                Sounds Like

Yes                                  Yeah

No                                    Naow

Ta                                    Gaa

Thank you                         Guy-or / Guy-oo

Car                                  Bum bum

Ball                                  A-bawl

Monkey                             Ooo ooo

All gone                            Uh gnnn

Baby                                Ba ba / Baby

Hello                                Hey-yo / Hiya

Bye bye                           A-bye / Be bye

Dog                                 Uff uff
Food                                Num nums
More                                Moh

Bubbles                            Bu-bull

Door                                Dior

Up                                   Up

Keys                                Daa

Bag                                 Ba

Play-Doh                          Bawl

Bed                                 Ba

Chair                               Ka

Book                               Booo

Outside                           A-hide

Boat                               Ba

Me                                 Me

Pram                              Bam

People                             Sounds Like

Mummy                            Mama

Daddy                              Da-de / de-de

Grandma                          Gam-ma / Gram

Great-Grandma                  Noo noo
Great-Grandad                  Dee Dee
Clare                               A-Ka
Gem                                Dem


Makaton Signs
Yes
No
More
Book
Finished
Bubbles
Bed
Please
Thank you
Mr Tumble 

Who've also had another wonderful language development: Bee has gone from saying 'baba' to 'baby'! We're so thrilled with that as it's a real progression for her. Well done Bee!

Victories and Viruses

So Warrington Wolves made it to Wembley. You could have floored me with a feather when the final hooter went in our semi-final against Wigan Warriors and we were the victors. We'd actually made the Challenge Cup Final! The Wire were going to Wembley! But that left us in a huge dilemma: we'd never left Bethany for more than a couple of hours and even then we'd only done it 3 times. But Warrington were in a cup final for the first time in 19 years and as lifelong supporters how could we not be there to see it? Of course opinion was divided. I wanted to take Bee with us and Foz thought it was best if she stayed at home. We live a long way from London and would be gone from very early in the morning until very late at night. Foz's common sense won over my emotional irrationality and it was agreed Bee would stay at home. I would only be happy with one person doing the babysitting: my Mum. After myself and Foz she knows Bee best and nobody could do a better job than she can. Plans were made and my Mum was really looking forward to it. So, minibus booked and costumes organised I looked forward to Wembley with a mix of pure excitement and icy dread. I knew leaving Bee was not going to be easy.


The morning of the Final was bright and warm, surely a good sign, and my Mum and Ken arrived early in the minibus. Myself, Foz and our friend Thecko, costumed up, decorated it with blue and yellow flags, bunting and a sign reading 'this way to Wembley' for the back window. In all the commotion Bee had awoke so her Dad went to collect her from the cot and bring her downstairs. Once in my arms I couldn't let her go. It was so hard to leave knowing I wouldn't see her again for at least another 15 hours. But leave we did. Wembley was calling and we had another 13 fanatical Wire fans to collect on the way. My Mum and Bee waved us off, or rather my Mum waved and Bee attempted to pull her hair, and I shed a few tears as they disappeared from view. Still I knew I was leaving Bee in the best possible hands, I'd just miss her terribly. My Mum was planning on getting Bee bathed, dressed then taking her out for the day with her NannyGranny Jan.


And so, we were off to London! We stopped at the Wire stadium first, our pick-up point for the rest of the travellers on the bus. What a sight! 50+ club-organised coaches on top of the random fan-run coaches like ours, it was wonderful chaos. Vestas, one of Wire's sponsors, had brought lots of free merchandise so we made sure we had stocked up on flags and inflatable banging sticks before finally boarding the minibus and hitting the motorway. On the way down it was almost as if everyone on the motorway was heading for Wembley, decked out in primrose and blue. We waved at the passing cars, coaches and minibuses and received enthusiastic waves back. Everyone was so excited. We'd never been to Wembley and never seen Warrington in a cup final so you can imagine how excited we were. Mine was twinged with worry though. I missed Bee terribly already and we were not even in London. My Mum had texted a couple of times so I knew everything was ok, I just wish we'd brought her with us. On arrival at our booked parking spot, a pub 5 minutes from the ground, I set up my impromptu face painting booth on the floor of the minibus and proceeded to coat my fellow travellers in blue and yellow face paint. Once finished, although conveniently parked at a pub we decided to forgo partaking of the produce and head over for Wembley's over-priced and watered-down beer. I just couldn't wait to get into the stadium and see it filled with Wire fans. The walk up to Wembley was fantastic. To see all the primrose and blue-adorned people gave me such a sense of camaraderie. Plus, as guilty as I felt, it was nice to be having a break.


Inside the stadium was immense, there were Wire fans everywhere and the atmosphere was so excitable. We hung around in the concourse for a while, getting beers, hot dogs and programmes and then took our seats, about half way up the lower tier and right behind the sticks in the Warrington end. Amazing. We'd missed the pre-match entertainment but had made it in plenty of time for the pre-game staples: 'Abide With Me' and the National Anthem. There had been a lot of talk and laughing between us before the game about Abide With Me making even the toughest men cry but it just didn't get me. The National Anthem did though. I'm not particularly patriotic, it was more the knowledge that Warrington were playing in a game big enough to warrant the National Anthem being sung. I was a blubbering wreck. The fans roared as the song finished and the players lined up for kick off. I won't bore you with the blow-by-blow details of the game, Rugby League is not to everyone's taste, I'll just say it was a fantastic and nail-biting game. Towards the end of 80 minutes Wire were in the lead and I allowed a small glimmer of belief that we could win it enter my consciousness. As the minutes ticked past Huddersfield were fast running out of time to score the points they needed. You could feel the atmosphere begin to change from tension to celebration we approached the dying minute of the game. Elation swept through us as we counted down the final minute. Warrington had done it. Challenge Cup Champions. We jumped around and danced and cheered as the team did similar on the pitch. I felt my phone vibrate in my pocket and fished it out, looking forward to the inevitable 'congratulations' text messages. It was from my Mum. "Don't panic". My stomach dropped. "Bee is in hospital". The fear that had lurked at the back of my mind all day was there in front of me in black and white. y baby was in hospital and I wasn't there. The text went on to say they were waiting for a doctor and she would let me know as soon as there was any news. I told Foz straightaway and we worried over the possible causes. The most obvious (and likely) was another virus but the possibilities we endless and very scary.


Of course the stadium around us was still vibrating with the roar of celebrating Warrington fans, all oblivious in the drama unfolding in our two seats. Being on a minibus meant we didn't have the luxury of dashing home to Warrington so we had a decision to make. What would we do? Obviously we wanted to get home as soon as possible but there were 14 other people with us who wanted to enjoy this historic occasion. We decided to wait until Warrington had lifted the cup and everyone was ready to start leaving the stadium to break the news. It wasn't long before the team ascended the steps and one-by-one accepted their winner's medals. I had such mixed emotions: elation at my team's victory and despair at every passing minute I wasn't at Bee's side. I couldn't stop the tears although thankfully I wasn't the only one crying, I defy any Warrington fan to claim they didn't shed a tear that day. After lifting the cup the team posed for photos and paraded around the pitch. It seemed to go on forever, I just wanted it all to end. When it was finally all over and the last player had left the pitch we joined the crush of fans all exiting the stadium and gathered together with our minibus group in the concourse. It was chaos. The Wire fans milling about were crying & hugging strangers, cheering and waving flags and banners. We decided to tell only our closest friends Frilly & Nita so they could help us shepherd everyone back to the bus as quickly as possible. They were very understanding. Whilst trying to gather everyone together from various toilet trips, conversations and celebrations I was still frantically trying to phone my Mum to find out what was happening. Eventually I got through and she told me Bee had been grumpy all morning, throwing up and had developed a sky-high temp of 39.8. My Mum had taken her to A&E at dinnertime and by the time I spoke to her at tea time they had been moved to the ward but were still waiting to see a doctor. So, major panic over. Bee wasn't at death's door and there hadn't been an accident but we were still terribly concerned as illness for Bee is always tough and that was one of the highest temps she'd had. We were so anxious to get back to her.


Finally, the gang together, we headed for the minibus. The pub we'd parked at had put on a BBQ and everyone was starving. Of course we hadn't told most people about Bee so they started disappearing towards the food and beer. I headed after them and explained the situation. Everyone was supportive and after a quick pint & bite and a short petrol stop we started the long trip back to Warrington. The journey, although traffic-free, just seemed to drag. With every passing minute I worried about how Bee was. Foz and I had agreed that I would be dropped at the hospital first, then everyone else and lastly he would go home to sort through the bags and pack some things for me in case Bee was in longer than overnight.


We finally arrived at the hospital. I must have looked a sight walking the long corridors with my blue and yellow tutu and face paint. The nurses all had a good giggle when I arrived at the ward, no mistaking where I'd been. The ward had been decorated in yellow and blue streamers and pictures of the Warrington Wolves badge, a lovely touch for the children who were too ill to be at the game. Bee was asleep. It was about 11pm but I'd hoped she'd be awake so I could have a cuddle, I was dying to hold her. My Mu, bless her heart, was sat quietly in the comfy chair, the lights dimmed, watching Bee sleep. I was so glad to see her. She told me that the doctor had still not been round even though they'd been on the ward since teatime. She went on to update me about the events of her day: Bee had taken ill mid-morning, coughing and vomiting and had developed a temp of 39.8, at which point she'd taken the decision to take Bee to A&E. After a few hours they had been transferred to the ward, where they were still waiting. By the time we'd swapped war stories & had a cuppa from the nurses it was nearing midnight. Ken had returned from dropping off the minibus passengers and was ready to take my Mum home, which just left me and a sleeping Bee. With this time to myself I was able to set up my camp bed on the floor and sneak a feed down Bee's gastrostomy tube. It wasn't long before the doctor appeared, finally. I reflected that it was a good job Bee wasn't at death's door. After an examination that woke her and made her cry the conclusion was just another viral infection, keep her dosed up on Calpol. How frustrating! We'd waited, or at least my Mum had, nearly 8 hours to see a doctor on the ward and the conclusion was nothing we couldn't have done at home. If we'd have been seen sooner we may well have been able to take Bee home, but as it was past midnight we were stuck. After the doctor had left I settled my tired girl back to sleep and attempted to get some myself. It was about 1am and it had been such an emotional day, from one extreme to the other. By this point I had been awake for approximately 20 hours and I was exhausted. I sent a quick text to Foz and my Mum to update them and was out like a light.


The following day started early, as it always does on the ward. The ward staff make no allowances for people sleeping and it gets noisy very early. Bee was already awake and waving her legs in the air. I got her up, fed and dressed then we sat and played while waiting for the doctor to come on rounds. Rounds are always variable, anything from first thing to after dinnertime. Normally I'm happy to wait, me and Bee just pass the time playing, singing songs and visiting the playroom but today, after 5 hours sleep, I was desperate to get home. Not to mention I was still stuck in my tutu and heels from the day before and getting some very strange looks off other parents on the ward. Finally, after what seemed like an age, the doctor arrived. We exchanged pleasantries, I explained my attire and talked her through the previous day and evening. The conclusion was exactly what I'd expected; just another virus. Take her home, keep her topped up with Calpol and bring her back should she deteriorate. As soon as the doctor left I sneaked a text to Foz to tell him the good news and started to gather together Bethany's belongings. I dressed her in her warmest clothes to keep the chilly air off, good old British summer, and strapped her in the pram. All loaded up we were ready to leave. I collected Bee's medicine, said goodbye to the nurses and we headed towards the back entrance to the hospital to phone a taxi. After a long and exhausting weekend me and my girl were finally going home to a warm house and a cup of tea! Bee was still poorly and this lasted a couple of days but she recovered nicely, as she always does and came back fighting.

These Boots Were Made For Walking...

We've been having some progress of late. We thrill in every tiny victory of Bethany's and this one, although small, is a step (excuse the pun) in the right direction. Bethany has never wanted to place her feet on the floor. Whereas other babies, even from a very young age, will push down with their legs when placed in a standing position, Bethany never will. She draws her legs up and won't put her feet on the floor, much less bear weight on them.


Whilst reading about Kabuki Syndrome I discovered this is fairly normal for KS kids and is known as sensory integration dysfunction. To combat it we've tried to ensure that Bethany constantly has socks and shoes on and spends a good amount of time each day in her Jumperoo bouncer.


Finally, after 8 months of persevering, Bethany is starting to push down for anything up to a minute or so at a time when you hold her standing. That is such progress for her and we're thrilled. Not that I needed an excuse to go and buy more shoes...

Money, Money, Money

While pregnant we bought a lovely reclining bath chair for Bethany as bathing a slippery newborn is a challenge to say the least. Just recently she has begun to grow out of it. Although weight-wise she fits just fine, in length she is within the normal range so her legs have been sticking off the end and her head sits above the cushion. We needed something new. Of course as Bee has gotten bigger she’s also gotten wrigglier and trying to bath her one handed whilst holding her still with the other is just impossible so a chair of some kind is necessary. Her hypotonia means Bee can’t sit up yet so many bath chairs designed for older children just aren’t suitable for her. We tried the Aqua pod at Mothercare and she just tipped to the side as the support is only at the front and back. The foam support was not conductive to encouraging Bee to splash and enjoy the water. The Comfort Bath Support was too small. We tried the expensive-sounding, ergonomically-shaped bath chair – too small, which is such a shame as a larger size would have been the exact thing we were looking for. Feeling disheartened I started searching on the internet for something more specialised. Not knowing exactly how to phrase my request on Google I settled for ‘special needs bath chair’ hoping it would bring me some useful hits. Now certain things in life are inevitably expensive. You add the words ‘wedding’ or ‘baby’ in front of anything and it’s a certainty that the price will jump far beyond what the product or service is actually worth. I was shocked when I realised this rule of thumb also seems to apply anything with ‘special needs’ in the title. How are regular families supposed to adequately provide for their special needs child when everything is way beyond the budget of most regular families? I was shocked by the prices companies were charging, even for the simplest of acrylic-shaped chairs. I wasn’t looking for anything spectacular like a lift system, just a simple seat that would allow Bee to sit in the bath comfortably and be able to splash and play like normal children whilst be safe and allow Foz and myself to use both hands to bath her. Talk about gap in the market. There is just no middle ground. It’s either newborn support or full-on special needs equipment, starting at £225. We desperately needed a solution. I went through the Mothercare and Babies’r’Us websites again, this time looking for a chair that I could possibly adapt to be suitable. The only thing I found was a swivel bath chair. Possibly too big for Bee and designed for babies who can sit up but it was the closest thing to suitable that we had found under £200! Plus it was only a tenner. Bargain!

So. A trip to Babies’r’us beckoned. We had a bath seat to buy, the new highchair we’d picked and, if Bee was lucky, maybe a new toy! I’d already decided on picking up a new tummy time mat to try and help Bethany as she still does not like being on her tummy and won’t roll, although she has done it a handful of times. Uncle Stu took us down, where we met up with Bee’s Grandma (my Mum) and her NannyGranny Jan, my Mum’s best friend. That’s the lovely thing about the supportive network we have around us. Everyone loves Bethany so much and I couldn’t ask for better family and friends. We’re very lucky that people want to be involved in her life so much. So after a play in the swing and a look at the toys we headed to the checkouts, bath seat and new play mat in the trolley and highchair ticket in hand. I paid the cashier, waited for the highchair at the collection point and then we headed home. I couldn’t wait to try out Bee’s new chair, both bath and high! Unfortunately I had to wait for Foz to come home to try out either thing! The minute he walked through the door I ambushed him to watch Bee while I played with the new highchair. Out of the box, instructions discarded, I managed to knock it together. Who says men are the only ones who don’t like instructions??

It wasn’t long before we had Bethany sat in it. What a difference! We’d been very specific about a highchair: it had to recline as Bethany can’t sit up and we wanted it height adjustable as we don’t have a dining room table to sit so we needed it sofa height! It’s perfect, perfect, perfect. In all honesty Bethany doesn’t even need the recliner as she sits up very well without needing to be propped, all I use it for is if she falls asleep. Apart from making feeding time so much easier it also assists Bethany with play. Being able to sit to play is a real bonus and she’s now making strides and achieving goals. She bangs on the tray and interacts with the toys in front of her, something she struggles with when lay on the floor. So all-in-all a great buy! Worth every penny of the £90 it cost.

And so to the bath chair: Foz’s normally bathes Bee in the evenings, that his one-on-one time with her and they both really enjoy it. He took Bethany upstairs to get her ready and I followed with the chair to run the bath, camera in hand. We sat her in it and at first all seemed well. I was really pleased with the chair, it seemed to be exactly what we’d needed. I took some pictures and headed downstairs to let Foz finish off

Once Bee was washed, dried and in bed he came down to join me. As it turns out the bath chair isn't so suitable after all. As she can't sit unaided Bee slips forward in it and her lady bits are squashed uncomfortably against the leg bar. Not the ideal situation. But how to fix it? It was the only chair we'd found that even remotely fit her needs that wasn't upwards of £200.

My Mum had the answer: lagging. Honestly, lagging. The foam stuff you put around pipes. When all else fails see what you can knock together. my Mum brought us some lagging, about 2m of the stuff. B&Q don't sell it in any smaller lengths! I fashioned some smaller lengths to fit around the leg bar in the center and the top bar on either side so she didn't hurt her knees when kicking. It worked. Although it was a constant battle to keep the lagging on as it has a tendancy to float away when Bee knocked it off, it did the job.

Just recently, when on a Cheshire Oaks shopping trip with Bee's uncle Stu we headed into Mamas and Papas. I've never been in one before, we don't have one locally and I know they are really overpriced, the Waitrose of baby shops if you like, but I wanted a cosytoes as the weather is starting to turn and our pram is a Mamas and Papas one. Whilst having a browse I spotted some bath chairs that looked exactly like the expensive-sounding, ergonomically-shaped bath chair I'd originally seen in Mothercare, that would have been perfect except for the small size. This one, however, looked bigger. I got Bee out of the pram and placed her in one. Perfect! It won't fit her for long but it certainly fits her now and was only £18. Bargain to boot! I took it straight to the till. So our bathing dilemma is solved for now. Hopefully Bee will be sitting unaided soon so we won't need to struggle for a bath chair any longer.

Hello Again B11 Cubicles!

After being discharge from hospital 2 months passed fairly uneventfully. We still struggled with Bethany's feeding, she would cry and choke on the milk, and we were always told she was fine and it was normal. We were once told she was a 'fussy' baby if you can believe it. Still we struggled on with the feeding and Bee struggled on with the weight gain. She cried most of the time and life got very stressful. By the time our second hospital stay rolled around in May Bee still only weighed 12lbs at 7 months old.

Bethany started with a cough, high temperature and vomiting which meant she was getting down very little food. For a baby of Bethany's weight that was worrying so I made an emergency appointment at the GP's surgery. I took her down and she was examined. After listening to her chest the Doctor made a few notes on the records in front of him. Out of concern of looking like a paranoid parent, which was how I'd so often been treated, I broke the silence with: "I just wanted to get her checked out, I was worried about the cough and her throwing up. She's so little to begin with. Last time this happened we spent a week in hospital". To my relief the Doctor replied: "that's where I'm sending you now." Bethany's chest had sounded 'crackly' and with the constant vomiting and her low weight it was his opinion that she should be admitted to the children's ward for possible Bronchiolitis. As worried as I was I was also really pleased that the Doctor had taken me seriously and we were being seen immediately. Luckily the hospital is only a 5 minute walk from my GP's surgery.

And so we were admitted back on to B11 Cubicles for the second time on Thursday 7th May 2009. For the first few days Bethany was extremely poorly. Her temperature was sky high and she couldn't keep any food down. She coughed so much and so severely that her throat was hoarse and when she cried hardly any sound came out. She needed quite a bit of oxygen during the course of the illness as her breathing was very laboured and she would desaturate, meaning the percentage of oxygen in her blood would drop. It was heartbreaking. A chest x-ray had confirmed bronchiolitis but unfortunately the only treatment was to wait it out. We fell back into the old routine. I would stay there 24/7, sleeping on a camp bed on the floor and Foz would visit in the evenings and on his days off. Thankfully the bronchiolitis eased after 4 days, although Bethany's cough remained. Unfortunately she lost a lot of weight, 8ozs in total, which is a lot for such a tiny baby. She went from 12lbs 4oz to 11lbs 8oz.

After 6 days we were transferred to a larger room with a cot for Bee and a bed for me! Joy! Normally Bee would probably have been allowed home once her bronchiolitis symptoms has eased. But with her weight loss and reluctance to feed normally again we had to stay. Of course being in-patients had it benefits: we were seen every day by a Doctor, sometimes more than one. Bethany had more blood tests and examinations, trying to diagnose a cause for her failure to thrive. Bethany has also always had a rattle when she breathes. It sounds like she needs a really good cough and it's been there since she was born. One doctor once told us that it was milk in her throat. What 24 hours a day, 7 days a week?? I don't think so. After complaining to the umpteenth doctor about Bethany's difficulties with feeding and her rattle one finally suggested that Bee be checked out by ENT, or the Ears, Nose and Throat department. Hooray! Progress! Someone who listens!

So I wrapped Bethany in a blanket, the Children's Ward is always stifling but the corridors off the ward are cold, and headed off to the ENT department. We were accompanied by a nurse, as if I couldn't be trust not to run away with her. She dropped us in the waiting room, informed the receptionist that we were there and told me she'd be back to collect us. I tried to reassure her I was very familiar with the hospital by that point and the hospital wasn't that big to begin with but she insisted. So there we sat, waiting, amongst the eldery men and women. Eventually Bethany's name was called and we followed the nurse into the room. This was mine and Bethany's first experience of a throat examination and I was quite prepared for how unpleasant it would be. I had to sit Bee on my knee, facing me, then lie her down so her head was resting upside down on the Doctor's knee. He then used a large wooden stick, like a giant lollipop stick, to push down Bethany's tongue and see right down her throat. My poor girl gagged and retched and I honestly thought she was going to throw up but she was a trooper and persevered. It only took 20 seconds and it was all over. I lifted her up and she sat on my knee, blinking and taking us all in. I murmured some reassuring words to her and she gave me a big smile. That's my girl. I turned to the Doctor for the verdict and it was here we got our first clue on the way to getting Bethany's final diagnosis. Our little Bee has a bifid uvula. My first reaction was probably pretty much what yours is: "A what??". Well, according to Wikipedia a uvula is "a conic projection from the posterior edge of the middle of the soft palate." In laymans terms it's a piece of tissue that hangs down like the tonsils. Bifid means split. So a bifid uvula means it is split. I asked about the ramifications of that and was told that although it can cause trouble swallowing, it's not a huge problem in and of itself and many people live with them with no effects whatsoever. He referred us to the ENT department at Alder Hey Children's Hospital with the recommendation Bethany have an endoscopy (camera) down her throat. Of course it's never pleasing that a Doctor does find a problem with your child but if there is something to be found we are always relieved when a Doctor does finally find it. We were pleased with the Alder Hey referral. They have a great reputation and are the nearest children's hospital to our home. It is also a regional centre for so many specialist units we knew we'd be in safe hands.

As a result of the ENT diagnosis and because of Bethany's feeding difficulty we also had a Speech and Language Therapist come and see us. We were pretty confused when we were told this as Bethany wasn't yet old enough to be speaking and she'd only just started baby babbling. When Claire the Speech Therapist arrived we felt immediately at ease with her. She was one of the nicest and approachable health professionals we'd met with so far and explained everything very clearly, instead of just assuming we understood the long medical terms. She explained that a speech therapist didn't just do the obvious of encouraging and developing speech. It was her job to look at the function of the mouth and throat, see how the mechanics were working and if there were any problems. We'd had to starve Bethany before the appointment to make sure she would eat while Claire was examining her. Consequently she was irritable and moaning so we started with the examination pretty quickly. Whilst Bethany had some solid food and then her bottle Claire listened to her neck with a stethoscope. She let Bethany finish eating then had a quick examination of her throat as the ENT Doctor had done, I then settled her in the cot with some toys so we could have a chat. She asked me lots of questions about Bethany's feeding, breathing and general health and finally gave me the verdict. Claire confirmed what the ENT Doctor had told us about the bifid uvula and gave us some rather bigger news. She suspected Bethany had a sub-mucous cleft of the soft palate. A cleft palate?? But she was fine, there was no split in her lip or the roof of her mouth. How could she have a cleft palate? I just didn't understand. Claire explained that the mucousal layer is the layer of skin and tissue that forms the roof of your mouth and cleft means split. So basically the sub (underneath) of Bethany's mucousal layer is split. That's why we couldn't see a split, it's underneath the roof of the mouth. The physical evidence was a high arch and a faint silver line running down the center of her roof. What this means is the muscles haven't come together and fused after the tongue descended during development. When a regular person swallows those muscles lift up the soft palate at the back of the mouth, to close off the passageway to the nose. As this hasn't happened in Bee's mouth it means when she swallows she gets fluid coming back up into her nose. This means effectively she has to swallow twice for each mouthful of food, doing twice the work, and she's got a constant amount of liquid sitting in the back of her nose, making her rattle as it doesn't drain properly. The second major effect that a sub-mucous cleft can have is difficulty sucking. To get a decent suck a baby needs to create a vacuum with it's mouth. If the soft palate isn't closing off the nose passage then air can still circulate and sucking becomes difficult. Suddenly all those hours struggling to breastfeed popped into my head and things started falling into place. Of course the little we knew about cleft palates involved surgery, speech therapy and all kinds of drastic procedures. Claire reassured us that in a lot of instances no surgery was required. As long as special bottles were used and weaning encouraged Bethany shouldn't have a problem. Usually surgery was only performed if the child developed nasal-sounding speech as they got older. That was reassuring. Bethany just seemed to tiny to go through surgery and it was the last thing we wanted to put her through. Claire gave us some special squeezy bottles so Bethany wouldn't have to struggle sucking, we could help push the milk into her mouth and promised to inform Alder Hey Cleft Palate department, who would send a specialist nurse to come and see us.

Trish, the Cleft Palate Nurse Specialist, came the following day. She confirmed everything Claire had told us and referred us on to the Cleft Palate Surgeon, Mr. Van Eden for a surgical consultation. Trish expressed concern during her examination of Bethany that her fontanelle (soft spot on her skull) appeared to have closed. We already knew Bee's was small but it having closed so early in life was a cause for concern. Trish explained that normally, as babies brains grow their skulls grow with it, closing the gap between the skull plates, known as the fontanelle. As Bethany's has closed so early their was concern that whilst her brain would continue to grow, the skull would not be able to accommodate the growth. This would result in the skull essentially squashing the growing brain and causing inter-cranial pressure leading to brain damage and an abnormally shaped skull. The correct term for this is Craniosynostosis. She told us she'd put a referral through to the Cranio-Facial Unit at Alder Hey and they would contact us in due course. Of course when she left I panicked. I imagined every minute going by was causing more and more brain damage to my beautiful little girl. As you can imagine we were completely freaked.

Bethany was finally discharged, after gaining 6 of the 8ozs she'd lost, on the 13th day. It was the day before my 26th birthday and the best present I could have hoped for, as cliched as that is. This time round we felt like we'd made progress. We had an answer as to why Bethany struggled to feed and I had the comfort of knowing the difficulty with breastfeeding wasn't my fault. But the up-shot of all this was it becoming increasingly obvious the Geneticists had something to find when they started testing. Now not only did Bethany have failure to thrive, developmental delay and hypotonia, she also had a cleft palate and bifid uvula to contend with as well as possible craniosynostosis. Trish actually asked us if we'd be surprised by a genetic diagnosis of something and we told her we wouldn't be. Her reaction was "if I'm brutally honest I wouldn't be surprised either". That just said it all.

We again couldn't have got through this period without the support of some very wonderful people: my Mum and Ken, Foz's parents and our good friends Lynne and Mike, even when it was just a pint of milk for a cuppa in the parent's room! :)