Ophthalmology Appointment (eyes)

Before we are thrown full throttle in amongst the middle of the season to be jolly,  I thought I would write a quick post to give a quick catch up on one of Owens most recent appointments we have had.

It was Owens quarterly Ophthalmology Appointment, or Eye appointment.

(please read previous blog post "Baby Blue Eyes" for an background about concerns with his eyes)

Well this appointment was a quick one. We saw a consultant pretty much straight away.  The Consultant said that as we already ready discussed Owen appears to be long sighted, But apart from that The Consultant said there isn't anything he can see physically wrong with his actual eyes.

 Although Owen still does not fix on a light routinely and his eyes tends to deviate consistently to the left. Owen does not appear to have a squint. I told the consultant I have seen a great improvement in what I think he can see and that Owen has begun to follow movements much more. I also said I was still worried about the consistency of his sight as at times he appears vacate.

 Owens Consultant then said he would refer for an appointment at Great Ormond Street where they would carry out an Electrodiagnostic Test. This would be a more in depth eye test looking at his optic nerve and retina. They would use electrodes to find out how much Owens Eyes sees and how much his brain registers what he sees. This test will be really helpful to give us greater knowledge about Owens sight. 

We haven't had an referral through the post yet, but will be sometime in the New year.
After this test, we have an appointment back with Owens Watford Eye Consultant to discuss findings. This isn't till March.

I will obviously keep you updated.

World Prematurity Day - Thank you for the memories

Today is World prematurity Day so I thought it was the perfect chance to share a few of our moments and memories of our days spent in Watford Special Care Baby Unit.

Watford Special Care  Baby Unit is a secret world away from reality, It is  located on the top floor of the Maternity Block through a barrage of security doors.

Meeting my babies for the first time

Straight after the birth I only managed to get a quick glance at each of my babies as the staff from SCBU paused with there incubators giving me just the quickest of introductions before whisking off with each of them to the Special Care Unit. I remember two things with fondness from that experience; my total shock of hearing them cry at delivery and even more shock that when I saw them for those few precious seconds they both had there eyes wide open and seemed to be staring right at me.  Not long after they left I was about to be wheeled to recovery but took a turn for the worse, next thing I remember is having an oxygen mask thrust upon me. Because I was poorly they were hesitate to let me go and see my babies, After much pleading I was finally able to visit my babies for the first time the next day later in the afternoon.... As long as I was pushed in a wheelchair with a cylinder of oxygen attached in case I became unwell again.


Here are a few more pictures of some of our time spent In Special Care

Changing Florence's Nappy 

Thinking of you x

I am so glad to see the back of October. It wasn't particularly horrible or anything but it was so so manic. October was truly a month of appointments... places to go and people to see....

 

My poor calendar was chokka block... and that's not even showing the appointments on my phone that never made the main calendar.

 

I am hoping November will be slightly less busy. Which is a hard task being a mum of four, But im already bracing myself for the festive month of December.

 

I just wanted to add that at times I do feel a great sense of guilt that Im not able to spend as much time with Family and Friends as I would like, But believe me I do think and care about you a lot.

Opportunity Class

I have mentioned taking Owen to Opportunity Class a few times, But I don't think I have ever explained what it is.



"Opportunity Class is an educational provision for pre-school children with special educational needs."

"Opportunity class offers play-based Learning. Each child has an Individual Educational Plan (IEP) which are targets which are aimed to be met and are regularly reviewed."

The best thing about it is that Florence has been made an unofficial member of the class.
 As it is focused on sensory and educational play based learning it will do nothing but further help her to flourish. Florence loves it and has grown in confidence while attending. Although she and Owen are the smallest and youngest members, Florence is the one of the most adventurous and cheeky.

During each session a full programme of play experiences is set up, which is then tailored to each child attending.

         For example they started with some messy play, one week this was shaving foam. Owen enjoyed this and seemed to love the feeling of the foam in his hands allowing his fingers to relax for a while. Florence too loved this, But she was more interested in eating it and when I tried to move her hands from her mouth decided to just go face down with mouth wide on to a plate full of it open into it.. yum???
 we quickly moved to the crayon where she tried again to eat them. But did sit and play with a shape sorter for a while before wanting to escape.
the following week it was Jelly which she much preferred.

Owen meanwhile did some work with some switches (big buzzer type buttons which either themselves make a noise or light up or are pressed to activate a toy) He is almost getting the idea of pressing the button to make a reaction. (cause and effect)

After all that hard work Owen likes to go and chill in the sensory den, which has lovely colour changing fibre optic lights which are safe enough to pull about and even chew.

After play it is snack time, then free play, song time then home time.


Outside professionals also come along, for instance a physiotherapist may come and work with a child or children or do a group session or speech therapist may come and work. Opportunity Class is also linked to the advisory teacher service.


Each class is run by a qualified teacher and a nursery nurse who have undergone specialised training and have had experience of working with children with special educational needs.
In our case our class is run by two highly professional but so so lovely and caring ladies Lynne and Jo. Lynne started out as a primary school teacher and Jo as a children's nurse.

I find in going to Opportunity class a great sense of support. Not only are you given information on local services and support groups but it is nice to meet other parents and carers who truly understand your unique situation.

Dear Owen - A year after coming home

Dear Owen,
                       Today we celebrate your one year Anniversary of your "Homecoming" The day when you finally graduated from special care. After 12 weeks and 5 days it was certainly a long time coming. At times during those "dark days" It seemed like a unreachable dream, But each time my hope started to fade you would fight harder and surprise us with your determination and turn that corner that needed turning and my hope would reappear.

I have learnt so much from you and from being your Mummy. You "Rocked My World".  When I walked with you down that narrow path between life and death, it couldn't help but to change me. It is hard sometimes when you feel your own personal world has changed so much to understand how the wider world has stayed the same. I admit I do, at times, find it hard to feel compassion for people with problems that are so easily solvable, if only given a little bit of time an effort. I just wish more people could understand  what you have taught me that "life is  a gift."  so don't waste it. Don't get me wrong I am a willing sympathetic ear to those who choose to confide in me. Another thing this whole experience has taught me is the true meaning of Empathy. 

I am amazed at your strength my little warrior, you inspire me to keep strong.
I am not saying to you that every day will be a battle, But I am afraid to tell you, but it is true you will have to work harder to do things that others take for granted.

When I think of how far you have come during this  first year  home, I am immensely proud. This time last year you seemed so fragile, coming home on oxygen at the start of the cold and flu season. I remember feeling so protective over you (.. and rightly so) Doctors, consultants and nurse all warning me, even if you caught so much of a sniffle it would most likely bring you back in hospital and could have severe consequences.  With hand gel at the ready, minimal public outings, visitors told to stay away if even a hint of feeling unwell and a rain cover acting as a shield. we spent as much of the winter in hibernation as possible.
Spring finally sprung, and we said our final goodbyes to the oxygen cylinders that filled our house.

It frightens me that Mummy won't always be able to protect you. Sometimes I worry people will find it hard to look past your disabilities and focus so much on what you can't do. They will miss the joy that you bring and not care about all that you have accomplished.
They will focus solely on your differences.
Maybe not always directly, Some people may hurt you with words. An inappropriate comment, Jokes told at your expense or cruel words muttered. Either way these words will hurt.

Yes My Owey, mummy is always pushing you to try harder, she is always dragging you to appointments and to therapies and opps class.. but if you want to know a secret.. my favourite thing in the world that we do together, is to snuggle!!! I especially love our little chats and that smile of yours.... What can I say about your smile.. Its the most beautiful, magical thing.. And I know for sure that your smile will always make others smile.

So my Owen, what  a busy year we have had. I can't wait to see what adventures are we going to get up to next?

Love You Lots Always
  Mummy
xxxx

Busy, Busy, Busy!!!

Wow... I sit here at the laptop, glass of wine to the right of me... I last posted here over a month ago!!!

What a crazy, sometimes stressful but mostly insanely busy month that has been.  This has truly been the first time and the first chance I have had to sit down and write.

 It feels like Owen has had zillions of appointments this month.

• Physiotherapy and Occupational Therapy has been stepped up to a block of weekly  intensive sessions for a month.
• Opportunity Class has now become twice weekly.
• Owen has had a initial community paediatrician appointment.
• Owens equipment has arrived and a rep from the company has visited to fine tune it.
• Owen has been assessed for further equipment, which will be again mainly positional. A squiggles set with is a padded support system with lots of Velcro, cushions, wedges. foam tubes to help Owen get in and maintain healthy positions  during floor time.
• Owen is being assessed for a sleep system again to help maintain healthy positions while sleeping.

All that while doing all Owens normal routine of massages, stretches and play therapy. Don't get me wrong, I am not complaining.
I will go into more detail of a few of the above as and when I can, bear with me on this one.

Also the rest of the family have kept me very busy.
Bethany has been looking around all of the local secondary schools as we are in the process of applying. This has been very stressful. Bethany particularly has been feeling the pressure.
 
Work has been particularly busy and stressful for Alex during the past month.

On a lighter note I have also been busy planning Lillys' 6th birthday and her birthday party this coming Sunday.


So as you can imagine, yes I have been very busy... so I apologize for my absent and will try harder to keep this blog updated.

Thank you for your patience.

xxxx

Flourishing Florence

A lot of my blog post are centred around Owen, but today I wanted to write a post focusing on his twin sister, my strawberry blonde haired little cutie Florence.


Today as I write this, we are celebrating yet a another milestone, A year ago today Florence left Watford SCBU and came home.

I remember saying at the time it was a bittersweet day for us as a family. We were so so pleased and overjoyed to be welcoming Florence home where she belonged, But also very sad as we had to leave her twin brother Owen behind, who was still very much under the care of Watford SCBU.
During our time in special care we saw many twins come and go, some shared the same cots, some also were in separate parts of the unit for a time, but all the twins we saw go home, all went home together.

Florence wasn't as sick as her brother Owen, but she did have her fair share of ups and downs.  Sometimes as she got older and stronger, we took her growth and comparatively easier journey for granted, She was the well one. We soon felt the crushing pain as she took a turn for the worse or had a setback. I remember feeling so guilty when a blood transfusion was needed that we didn't see it coming. On the first day Alex dared to go back to work, Florence became unwell with an infection. That meant Florence was on minimal handling, I would miss out on my favourite time of day skin to skin or cuddles. All I could do was watch her. Without being able to do her cares or hold her I  felt useless that day, useless and so alone. I was so thankful my friend Marie came for a visit that day, I don't think she knew how much I needed that (until reading it now no doubt)
Luckily later in the day, One of the nurses decided that a small cuddle wouldn't hurt as long as Florence was wrapped up well. I was so thankful for that hug it was very much needed.

I know in my first blog post I explain her name meaning of  Florence was"to Flourish", But we actually didn't pick her name for its meaning, Florence was one of the few names that we Both liked. Same goes for the name Owen. 
Moments after we found out at my 18 week scan that we were having a boy and a girl we agreed on names. We sat back in the waiting room at London University Hospital staring at our newly printed out scan pictures, "So that's Owen and Florence then?" exclaimed Alex. Later instead of twin a and twin b we nicknamed them "O and Flo".. and we never did question or change our minds, it just felt right. But we did keep it a secret.

The twin's middle name's were a different story, we were stuck. We had a long list but could not decide. The day of my emergency C-section we still hadn't decided. I was in my hospital gown awaiting to go up to theatre, the girls still by my bedside awaiting my mum to pick them up. I pulled out my list.. "Come on guy's we need to pick names" I was determined that if they were going to be born early and whisked away from me the least I could do was give them names from the start. The thought of them being up there, away from me nameless was too much to bear. We picked "Harvey" as a middle name for Owen as it meant "Battle worthy" we knew he was about to fight a real life or death battle. Bethany picked the middle name Ella meaning "Ray of Light". I wrote their whole names down "Owen Harvey Skelton and Florence Ella Skelton" and told Alex to keep it on him and pass it on to the neonatal staff before both babies went across to SCBU.

 Florence is my "Ray of Light" in the most darkest moments

When Owen was at his sickest, sometimes the noise of his vent going up and down and the noise of the alarms constantly ringing was just too much too bear. The magnitude of just be able to sit and stare, saying silent prayers would just get too much. At times like this I would go and sit with Florence.  As Florence wasn't as sick as Owen I was able to do more for her. I could do her "cares" I could hold her, I could "Mother" her. Those moments were precious. Florence gave me extra feelings of hope and strength, I would then go back to Owen passing on to him her hope and strength.

Even when she did come home, Florence never did escape from SCBU for long. Florence became a daily visitor to SCBU. The Nurses arranged for a cot to be set up in Owen's side room next to his cot.
For 6 more manic weeks Florence and I would make the crazy journey of dropping off the girls at school, hurrying back to the hospital ,to be on time for Owen's morning feed and "cares". We would stay until it was time to pick up the girls back up from school, sometimes we would all then come back again to visit Owen. Sometimes I could stay longer if the girls were being picked up by someone else.
 It was a strange and hard situation. All the staff did the most they could to make it work, as they knew it was the only way we as a family could cope.
 I remember one day as I pushed Florence our of the special care unit in a single pushchair kindly lent to us at about 7 o clock, I was stopped by a nurse from a different department who I had never met before, questioning why I was leaving the special care unit with a baby, until then I didn't really realise how strange I must of looked coming and going casually bring a baby in and out of a highly secure unit.


               








 I often joke that Florence doesn't think she is a ex prem baby, she likes to smash through her milestones. Florence amazes me everyday,she has come so, so far.  Florence is such a determined little character and cheeky beyond belief.
Over the year Florence has remained true to her name and "Flourished"