Relief!

Well it's all over and done with. Bee's first morning at school has been and gone. I was very grateful that Foz's work allowed him some time to come with me in the morning. I felt it was important for Bee to have both parents there but also important for Foz. Having to work all day means he misses out on so much so I was very glad he got to share this moment.

We got up extra early to make sure that we had time for photographs. I'd got Bee a special breakfast of a chocolate croissant but she wasn't impressed. Ah well. We spent the morning talking about school, about all the new toys to play with, the fun things to do, the friends she would make. By the time we were ready to leave the house she was very excited. 

I was the one that got her dressed, Foz was upstairs getting himself ready. I'll never forget his face as he walked into the living room and saw her. She looked so grown up but at the same time like a baby playing dress up in clothes too big for her!

All too soon it was time to head over to school. We spent some time taking photos on the doorstep then all got in the car to make the 10 minute journey.

Outside school was very busy with kids and parents everywhere so we had to park down the road. It felt strange, walking to school amongst so many bigger kids. Bee looked so tiny and delicate. On arriving at school all the children have to line up in their classes before being escorted inside by their teacher. We'd been notified during one of our previous visits that Bee's class would line up at the far end of the playground but yesterday morning was a little like organised chaos at the 'new starters' end of the playground. We had no idea who was in Bee's class and didn't want to line up in the wrong one so we just hovered near the edge of the playground and waited to spot a teacher we recognised. 

Of course Bee did not want to stand still. There were lots of other children to nosey at and playground equipment to explore. I kept explaining that we had to stand still and wait for her teacher but Bee doesn't really do well with waiting, she seems to expect everything to happen immediately as it's mentioned. She kept asking "where is? Where is?". Thankfully it was only a few minutes before the teacher appeared and Bee was thrilled to see her. We got an "ooohhhh here is" with a big scrunchy face. Success. Then there was just time for a few kisses and cuddles and she was away, happily holding her teacher's hand and not even glancing back. 

I'll be honest, I cried.

I was so thrilled that she had no fear and was secure in the company of her new teacher. I want her to be happy and confident at school, to enjoy and get the best out of it. But there was this tiny little part of me that was desperate for her to cling, to cry... to just need me.

We were one of the last out of the playground. I couldn't bear to just walk away. I'm glad Foz was able to be with me as it made things a little easier. He gave me a hug then did his best to distract me with other things as we made our way back to the car. I took him into town for work then spent some time browsing the retro games shop to cheer myself up!

For pick-up my mum and dad came along. Bee was thrilled to see us all. Her teacher told us she'd had a great morning but towards the end of her session she'd been asking for mama and daddy. A good start though!

She'd also been chewing on her tie. A lot. She'd almost chewed off the name label I had painstakingly sewn on and had been chewing on the sleeve of her cardigan. Oh dear. I asked her teacher about Bee wearing some kind of sensory chew product through the day to prevent her from destructively chewing her clothing. The children aren't supposed to wear jewellery or anything non-uniform but in this instance we really do feel it's necessary for her needs.

After school it was off to McDonalds for Bee's favourite treat of chips, then to soft play with grandma!

By the end of the session Bee was so tired she was falling asleep on her feet. It was definitely time for home and a relax on the sofa!



Her first morning at school couldn't have gone better and we're thrilled that she seems to be settling so nicely. I'm a little concerned that as her days there get longer and she begins to realise that she has to go all day, every day, I'll have a problem. But for now I'm just grateful she's enjoying it and happy to go in!

Proud of you baby girl! xx

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

Back to B11

It's been an interesting and eventful few days for us as a family. Wednesday brought Foz's day off and the afternoon found us at home having some dinner before a planned trip to the park. We left Bee watching CBeebies as Foz brought the washing in off the line and I nipped upstairs. We'd recently got Bee some new George Pig bedding and Bee was very excited as Daddy was bringing it in off the line.

I started downstairs a few minutes later to find Bee halfway up, unattended dragging her George Pig duvet cover behind her saying "me bed, me bed". She wanted to put it on her bed. I said her name and asked her to wait there, stay there, panicked even though I knew she was capable of climbing the stairs. It was the bedding that worried me. 

As I shouted her her feet got tangled and she lost her balance, falling face-first down the stairs. I screamed and dashed down after her, nowhere near able to make it in time and she hit the bottom with her shoulder and the side of her face. I was horrified and screamed for Foz, who came running out of the garden. I picked her up and thankfully she was hysterical (and not unconscious) but her nose was bleeding and a lump was forming on her temple. I was concerned about broken bones and we agreed a trip to A&E was necessary.

Foz held her on his knee, trying to calm her down as I dashed about packing a bag with all the essentials. Within 10 minutes we were in the car and making the 10 minute drive to the hospital, feeling like the worst parents that ever were or will be.

A&E booked us in and we went sent down to Children's A&E to wait for the doctor. Of course once we got there and Bee saw all the toys all she wanted to do was play. Typical. I've lost count of how many times I've said to a doctor "she is ill...honest!"

 After a couple of hours of waiting we were sent home with a head injury advice sheet and a warning to keep an eye on her, like we wouldn't! As she hadn't been knocked unconscious they weren't too worried about concussion and she had brightened up during the wait, even though she was still a little quiet. We took her home and kept her up for the required 2 hours before Foz put her to bed.

The following morning, Thursday,  Bee woke, seemingly o.k but as the day wore on I could tell she wasn't herself. She was quiet and wobbly on her feet, had a very snotty nose with a cough and kept stumbling. Her temperature was on the rise too. Still, there was nothing concrete to justify taking her back to see a doctor so she had some medicine and went to bed at the usual time. 

Just past Midnight I went up to bed and popped my head in to check on her. She was surprisingly already awake and so I went in, sitting with her a while and stroking her hand. She was very hot and snuffly, letting out the odd little cough. After 10 minutes or so she started making the sound that I know means imminent vomit so I sat her up and shouted Foz, who came up with wipes and other necessities. She was sick everywhere and as I stroked her back for comfort she suddenly went rigid and almost flung herself back onto the bed, her eyes bulging and not focused, her arms and legs jerking with spasms shaking her whole little body. She wasn't drawing breath. Foz and I panicked, him trying to hold her to stop her hurting herself on the metal frame of her bed and me screaming her name. I ended up clapping as loud as I could in her face, it was all I could think of to stop her. The whole thing lasted about 10-15 seconds but it felt like a lifetime, those moments where my daughter wasn't breathing and I had no idea what to do, I was helpless. 

After she snapped out of it she was hysterical. Foz and I didn't even have to say anything to each other, he started to comfort her and get her changed from the sick-covered pyjamas and I rushed around packing another bag for A&E. We were on the road by 12:40am, making the 10 minute trip. All kinds were going through my mind, my main concern was that the bump to her head had caused some kind of brain damage. Looking back it was probably a silly fear but I'd never seen her like that, never seen anything so terrifying. 

We were seen fairly quickly at the hospital, although the main A&E was busy there aren't many children need emergency care at that time in the morning. Thankfully it was the same doctor as the day before so we didn't have to try and explain everything, just what had happened that evening. He was concerned and after giving us some Calpol to put down her tube to bring her temperature down he arranged a bed on the ward.

We made the long trek up the corridor to the Children's Ward where we were lucky enough to have a whole 6-bed bay to ourselves. I'd been worried about sharing the space, as mentioned in previous posts, Bee doesn't really understand appropiate behaviour in certain situations and we would have found it very difficult (virtually impossible) to keep her quiet in respect of children & parents around her sleeping. As far as we're aware Bee doesn't know how to whisper. 

By the time the on-call doctor had been round and Bee was able to sleep without being poked and prodded it was getting on for 3:30am. We were all shattered and I left Bee sleeping to take Foz home, he was supposed to be at work in just over 5 hours! We hit McDonalds on the way home, both starving and I stayed at home long enough to eat it with him before heading back to my sleeping Bee on the ward. By this time it was getting on for 5am and as they were due to wake her then anyway (every 2 hours is standard precaution for a head injury) I paced the ward trying to stay awake. Once the check was done, she woke quickly and was alert, both she and I were able to sleep. I curled up in the uncomfortable chair next to her bed, padded it out with pillows and tried to get some sleep.

Home comforts can make all the difference

I was up again by 7am, when the shift change came in. Nurses don;t make any allowances for people sleeping and the ward gets noisy very early. Thankfully Bee slept on, the poor kid was exhausted, so I sat and quietly read my Kindle, waiting for breakfast to come round. My girl must have the nose of a bloodhound as she started to stir just as the breakfast trolley made it to the bay next to ours.

Two plates of toast, a cup of tea for Mama and some CBeebies later and Bee was looking a little brighter. Her raging temperature was gone and she was more alert.



Of course Bee wasn't happy to watch CBeebies in her cot for long so it was off to the play room, which has had a revamp since we were last in-patients. It's very hard to convince a doctor that your child is ill when she's doing this....

Around 10am the doctor came and had a chat with me. The diagnosis: Bee had a febrile seizure brought on her by very high temperature. It was nothing to do with her fall from the day before, it was simply a coincidence.

As heart complications are common in children with Kabuki Syndrome and seizures can be related to that the doctor ordered an ECG for Bee, just to be on the safe side. It came back perfectly clear and we were allowed to go home. 

Having her ECG

We are aware though that seizures can suddenly manifest in older children with Kabuki Syndrome and it's something that we need to keep an eye on. Should she have another one and there's no high temperature we'll have to go back for further tests. As it is we're on the waiting list for another EEG due to her little 'absences', moments of tuning-out.

Overall it's been a very stressful and worrying few days but Bee has come through it all fine, just a graze on her nose, a bump on her head and a bit of a cough & cold. Thankfully she'll be ready for the start of school on Tuesday, she's such a little soldier.

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I want to add here that our NHS is a very important institution in this country. We've needed a lot of support for Bee since her birth and it's always been there for us, without charge. We've always received the best of care and have met some wonderful medical professionals along the way. Sometimes, when headlines like 'hospital lets patients die in corridor' etc hit the news it's easy to forget that these are isolated incidents in a huge network of healthcare that supports our entire nation using world class training, techniques and equipment FOR FREE.

It doesn't seem to really be penetrating the public consciousness yet but the current Conservative government is attempting the sly, secretive dismantling of the NHS and it's very important that every UK citizen who cherishes what we have gets behind the campaign to save it from privatisation.

This is something that is very important to me.
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