Happy Fathers Day 2014

Note;
JUNE 2016: Just re read this draft... It didn't make the light of day 2 years ago.  Maybe it was all too raw still.
Today I am able to share this. 

                                   
Note;
JUNE 2014
Not sure if this blog entry will make the actual blog, but as it is Fathers Day today it got me thinking and that led to writing. The problem is this post is more about my husband Alex, when he found out I was writing about him he wasn't keen on me posting it. I told him I would finish writing it, then I would read it to him and he could decide whether I should post or not. So if you are reading this the answer was YES I could.



                           Father's Day 2014



I always knew Alex would be a Great Dad, But we both underestimated the lengths a great dad would have to go to become an Amazing Dad.

Looking back at when we first became parents its like looking back at two very different people.
Obviously we were younger. We were first time parents. We made some mistakes and worried too much over things that didn't need worrying over.
 But we always did and continue to have the same views on parenting. We are nearly always on the same page and always deal with things together.

We recently both spoke about how we have changed or 
evolved and both agree we can pin point a particular time when that change took place.
 Finding out we were having Twins was the start of it. The memory of that day still makes me laugh.
 Alex was wearing a Superman top,  Alex went so pale and quiet with just plain panic in his eyes. Despite the massive shock we were happy.
 A week later at second scan that feeling changed, we had some news that made us look at things a different way and we had to make some really most serious decisions.


 After the shock of delivering the twins at 28 weeks, as well as dealing with fears for the twins life, Alex then had to deal with his fears about myself as I became poorly. He must of felt so split and so alone.

When I was finally able to see our babies, I was surprised  how well Alex was coping. How he had made such a personal link with the Doctors and Nurses. This was immensely important and it set the tone for the rest of our stay. Alex tried to understand every bit of medical jargon they threw at him. If he didn't understand something he would question it until it was made clear.

During this same time I have to admit I felt a mess. I felt poorly, weak and in pain. I felt useless.
When we was able to do the babies cares Alex stepped up first. I was so frighten of hurting the babies.  The alarms put me of even undoing a nappy change, as even a small movement could set them off. 

 Alex was confident. Alex supported me so much on my first visits, With Alex's gentle guidance we both soon became pros. With his help I found my way back to some sort of myself. I finally felt I had regained my role as a Mother.

We then worked together as a team.
We knew when each other had a moment when words were too hard too find and wanted peace.
We knew when the other was on the edge of breaking and we found the strength to hold it together for the both of us, We knew if the other wanted time out and would suggest going for a "walk" which often meant doing a couple laps of the car park till we could pull ourselves together again.

Our experience changed us, it may not be noticeable to others but we notice each others changes.. it has made us better parents and people for sure. It and has given us the strength to deal with whatever the future may have for us... one day at a time  .

Family life can be busy, stressful and tiring due to lack of sleep for two years and generally not having enough hours in the day. Most nights when Alex comes in from work our house is full of craziness... either happy hyper crazy or babies crying kids arguing crazy, whatever it may be Alex gets in grabs a baby from my arms and mucks in. 

So really all I wanted to say is HAPPY FATHERS DAY ALEX xxx

Reflection And The Need Of Change

Reflection And The Need Of Change

I don't think it is a coincidence that when I look back through my Facebook post from earlier this year I find my 'Owen starting school' post running parallel with my first 'Changing Places' posts.

As Owen started his very first term of afternoons at his Special Needs School, I wasn't really expecting the rush of feelings of loss and redundancy that I got.

For 3 1/2 years not only had I been his Mother, I had been his Carer and his Advocate.  Now I was handing over part of that responsibility to complete strangers for the first time. 
Having given up work to be Owen's full time carer. I felt that a part of my heart and of myself was being ripped away. I also felt unsure of how I was to fill the void.

Now do not get me wrong, I had plenty of things to do. Florence was at Morning Nursery,  so in the afternoons spending one on one time with her has been fantastic. But even that had it's limits, Florence loved her afternoon naps so no matter what ideas I had for us to do together, most of them were left undone.

I also still had a barrage of appointments to attend. Always things to do at home. It was just that housework and daytime TV were just not fulfilling enough.

With Owen starting school it really hit home that Owen was growing up. What became blatantly obvious was having a growing disabled child, opened up a completely new range of problems from a accessibility point of view. This was most evident on family days out during the festive period.


One of the major problems we have encountered is toileting. Owen can not use a standard disabled toilet, he still needs his pad to be changed. 
The trouble is he is getting too big for the typical baby changing units. Especially the small fold down ones. On these Owen legs go off the end. Not surprisingly as they are just meant for babies. 

What makes nappy changing even harder than just his size is the nature of the disability. Due to his type of Cerebral Palsy he has high tone in all his limbs, meaning they are tight and rigid. Adding to this the fold down tables wobble, this frightens him. When Owen gets upset he arches his back, uncontrollable arms flying everywhere. I have to hold him down in one hand, trying to calm him, while changing his nappy in the other. It is a nightmare.
If you really unlucky amongst all the drama you will accidently set off one of those Automatic Hand dryers.

The thing is there is a solution. The solution are call Changing Places or Spaces to Change for small areas. Both consist of Bench and Hoists facilities.
Great you think problem solved.
But no wait... no one wants to install these facilities there is just bout only 850 in the whole of the UK.
The more I looked into it the more I realised what a major problem this was.  I just did not understand why people were not jumping on this idea to install them where ever they were needed.

The more settled Owen became at school, the redundant feelings slowly faded away.
My need to do something positive was still at the fore front of my mind.
I needed to be pro-active in my want of change. 
 I have learnt as a special needs parent, you have to be willing to put up a fight for things you want for your child.

I read locally they were building new changing blocks as part of the local Cassiobury Park £6million restoration project.
I thought I would send a little tweet asking whether they were including Changing Places Facilities into the project.
to the right was my answer. 
I shared it on social media. The reaction was crazy. I was inundated with personal stories, pleas for help from other parents and offered support from a 14 year old boy who had just successfully campaign for a wheelchair swing in his local park who said he too needed these facilities.

Fuelled by a mix of Coffee, Anger, Frustration and  just wanting to do something positive for others this is where I would start.



http://www.mychangingplace.co.uk/

 

 

 

 

 

 

So that's Owen's first week (3 afternoons) at Nursery. Apparently he has settled in well & starting to enjoy himself.
He still got alot to get familiar with.

I finding the "letting go" & letting someone else take care of his needs hard. But like Owen I'm sure I will get there in time.
...
Having twins in two different nurseries at two different times was never going to be easy... It is at times physically & emotionally straining, With appointments for both coming up, makes me feel like I need a clone.

Florence also is finding the new routine hard to get her head around.

But all in all we are really proud of how well our brave determined by has settled in and can't wait to see what happens next. X

Flourishing Warriors Year In Review

 

 I know we could say this about a few years but 2015 has been particularly tough.
Here is a little review of what 2015 had in store for us. I have purposefully missed of all Owens routine appointments and therapies, but even so it will be a long read.

Jan - Settling into our new home, Lilly started new school. Owen spent most of January with chest infection after chest infection. Owen was measured for splints

 Feb - Owen received his leg splints.
Owen was diagnosed with Cortical Visual Impairment (CVI) and therefore registered as severely visually impaired.

 March - We started visiting Special needs schools and started the whole EHCP process.
Owen had a videofluoroscopy (swallow test) as was shown to have an unsafe swallow.

 April - Florence started Pre-School, which didn't go to well she had real separation anxiety. We did enjoy a fun Easter with family.

 May - It was agreed with Owens Community Paediatrician for Owen to have a Gastrostomony, so was put on the waiting list.
Owens Auntie Zoe did a Parachute Jump to raise money for Nascot Lawn Children's Respite Unit. She raised more than £500 which they brought a new squiggles mat with as that was one of Owens Favourite things.

 June - We had a EHCP meeting where all of Owens team came together to discuss his needs.
We attending a Neuro-Vision clinic at GOSH which was very helpful.

 July - Owen & Florence sadly said goodbye to EYSDC (Opportunity class) & Florence said goodbye to Pre-School.
Owen & Florence turned 3 and celebrating with a Superheroes and Princesses Party with their Gorgeous cousin Amelia who also turned 3.
Owen received his Snappi Wheelchair.

 August - Owen had a radiology Investigation in preparation for his Gastrostomy insertion the following month.

 Sept - At Owens pre-assessment for his operation we were told they found following his radiology investigation that he had Malrotation of the bowel, which is something he was born with, which was a ticking time bomb in case it developed into volvulus which is life threatening. At the already booked surgery date a procedure (Ladds Procedure) was performed to correct this as well as his feeding tube insertion.
Unfortunately a day after home Owen developed complications which lead him to be re-admitted for nearly 2 weeks more.
Amongst all this Florence also started Nursery, and when we were all home she settled in well.

 Oct - Was a lot of new visits from Community Nurses and dieticians. 

 November - A hearing test, eye test & we found out Owen got our first choice school.

 December - Admission meeting at Owens new school. Owen received weekly input from the Herts Visual Impairment team which will carry on at school. Lots of handovers from Owens old Therapists to his new School Therapists.
We sadly said goodbye to Nascot Lawn day services.

So what a year!!!
Would it be hard to believe it was also a very enjoyable year too. Here's to 2016 and many new adventures it may bring.. hopefully with a little less stress and more cheeky smiles.
Happy New Year From Us ALL xxxx

Merry Christmas 2015

We spent most of Christmas on the road travelling between families

Cutie Lil Florence on Christmas Day

Auntie Laura & Owen wearing their Christmas PJs



Merry Christmas

Florence was a brave but timid snowflake in her first Christmas Play

December 2015 - A sad Goodbye to Nascot lawn

Today was Owen's last ever day session at Nascot Lawn, it was really sad to say goodbye as they have been amazing.

Nascot Lawn came a little while into my special needs journey,
It was suggested to me while at Opportunity Class by a visiting Physiotherapist.
    
Nascot Lawns is a Children's Respite Unit. We had an opportunity to apply to attend a day care session one day a week.
 I decided it was a good idea not because I needed a break or because I was struggling, but because I thought I would be good for my very clingy boy to get used to being in others company, especially as in the near future was school. Another reason why I agreed was for Florence, it would be nice for me to spend some quality time together in a more mainstream settings. That's exactly what we did. We had great fun at soft play, trips to the café and girlie shopping trips.

Our referral went to panel and after Owen was accepted. 
On our first visit I was amazed by the place, they had all the equipment. They also had an incredible sensory room. Elaine the person in charge of day sessions was very proud to say was fundraised by themselves, she then showed me what looked like a cupboard old one was. Most of the all the staff were amazing. They were so caring and knowledgeable. I knew Owen was in more than safe hands.


Nascot lawn was my first experience of Owen being left alone somewhere with all & all his care & therapy taken care of by someone else. It took a bit of getting use to. The first time I left him I cried all the way home. I called my husband he said its a great place Owen will be ok. I knew this so I answered "But what about me?" that's when it hit me,  without Owen I felt lost.

It took time for my guilt of leaving him to fade, My pride and my acceptance that sometimes I am allowed to have a break.
 

This picture shows his Christmas decoration he made while there.





 

 Happy Halloweeeeen from the Skel'e'ton family

 

 

 

 

 

 

Spooky goings on in the park

 

 

 

Halloween feast at home

 

 

 

October has been a month full of resuming regular appointments & establishing new ones.

 On October 22nd Owen's malecot gastrostomy tube was sucessfully changed over to a Mic-key button (lower profile feeding tube) at Great Ormond Street. It was lovely to have a quick, problem free appointment without any surprises. It was nice to say hello to Owens Stoma Nurse again but even nicer to say goodbye. As the appointment was so short we decided to visit the café ( I don't know maybe we missed it) Bad idea as when we wanted to leave we ended up spending more time trying to get Florence away from the play therapists doing arts & crafts then we did in the whole of Owens appointment. The Play therapists  were packing up so managed to persuade Florence it was time to go by giving her a little bag of arts and craft materials to do at home.

 

We were particularly keen to make a quick get away as it was Lilly's 8th Birthday. 

 

 We have had a few niggles mainly concerning the site around the button, But nothing major.
We do think Owen has put on weight, he is losing his skinny ribs & re-gaining his scumptous squishable cheeks. 

 Nearly, nearly have news on a school place just awaiting final confirmation... Fingers crossed!!!

 On Friday we took excited delivery of Owen's new bed!!!! We are looking at moving Owen into his own room very soon...Eeek!!!!

 So that's October in a nutshell...
Of course it is the 31st so watch this space for some upcoming Spooooky. pictures

Major Operation and a rough recovery - September 2015

Owen was already booked in for the 9th September for an operation to insert a gastronomy feeding tube into his stomach to enable full tube feeds. The week before the operation at our pre op assessment we were told some shocking and heartbreaking news. During the tests they do it was found that Owen in fact had a condition called Malrotation of the bowel.  Owen would now need a major operation called ladds procedure to fix his very newly diagnosed condition.

 So on the 9th September in the very early morning, with our bags packed we made our way to Great Ormond Street. We was surprised to find out that they were also still going to go ahead with inserting a gastronomy feeding tube into his stomach at the same time.

The week in hospital was horrible, Owen was in a lot of pain and we all wanted for him to get better and to come home.
Owen grew stronger the operation to fix his bowels had worked and we were beginning to start feeds through the tube. The following Monday Owen came home.

Our relief was short lived,  Later that day his tube site started leaking a little at first, but over the coming days it leaked more and more causing the stomach acids to make a hole next to the site, which then caused even more severe leaking & bleeding. We battled to seek medical help. Great Ormond Street has no beds for us to come back to, we felt alone scared and rather angry that no one was helping us. 2 x A&E trips and a 3 day stay a watford children's unit ended with us finally being re-admitted to Great Ormond street. Where Owen & myself have been staying for a further week.

We were again discharged. 
We now have to build up his feeds through his Gastrostomy at a slower pace to make sure the wound is fully healed & to avoid further problems. But we are so glad to be going home.

We want thank everyone for all their well wishes. And particularly want to thank my sister Zoe, my mum and my auntie dee dee for looking after the girls while we have been away. X
 

August 2015 - More apointments, More worries

AUGUST

Reflecting on the week as it's Sunday evening.

 This week Owen had his routine eye appointments at Watford General Hospital all went well, but it was decided he was to be discharged from Watford and have all further Eye appointments at Great Ormond Street where he is also seen.

 Afterward we met with a dietician to discuss his plan for after his Gastrostomy Operation. Which is less than a few weeks away. I am really nervous/worried/stressed about the whole thing, about the actual Gastrostomy, any complications, the operation, his hospital stay, our hospital stay in the fact I will be away from the girls & how thats going to work there after? 


 We met with his Physio who is pleased with him overall, but gave us extra exercises to help his hips.

 We  met Florence's new speech therapists who will have a more in depth assessment with her next week & then set new targets which will be shared with her nursery.
Here are are a few pics of the twins enjoying fun & relaxation time in between a busy week xxxx

Happy 3rd Birthday O & Flo

Owen & Florence would love to thank everyone who helped make their Super Twin-Tastic 3rd Birthday so Special xxx

The Busy month of July

 

 July is the month where we say goodbye to Florence's Pre School, and a very sad goodbye to EYSDC (Opportunity class).

While looking through there learning journals it is funny to see how big a part EYSDC has played in our journey.
We started when the twins were 9 months old (6 months corrective) apart from SCBU and Physiotherapy it was my first step onto a different path, where few parents experience. The first steps on the special needs journey. It has helped us all, as a family tremendously

 
 .








The hot weather has been a worry for me regarding Owen. Owen has poor temperature control. He also has been banned from taking any forms of liquid, so we are pushing the boundaries with lots of thickened smoothies and juices. It is such a battle to keep him hydrated

Lastly today was a stressful day!!!!

 We had a busy morning with an appointment to Wheelchair services to finally pick up Owen's brand new Snappi Chair. I say finally as it has taken a long time to get to this point as we were referred in January was on a waiting list and then assessed in early May. So picking it up July seems a age to wait, especially as Owen had grown out of the tandem buggy and was very uncomfortable in it. Owen instantly loved it though.

As the Wheelchair Services appointment over  ran we were running so late,  we had to miss Owen's  Physio appointment we were just  beaten by traffic.
 While sitting in a traffic jam I received a phone call from Owen's SEND Co-Ordinator. She was calling to let us know that the SEND Panel had failed to come to a decision on what school Owen should attend. This means that Owen won't be starting Sept. He will hopefully start in October.

 

 

 

 

EHCP's and all that Jazz

April
Physiotherapy for Owen went well. Has slightly tighter hamstrings than normal much not so much that needs extra intervention (sigh of relief)
Talked lots about Owen's EHCP & what she is going to write in her report. The physio will detail what she thinks he needs. All sounds really good. 

 Looking around another SN school Wednesday.

 But that's all the appointments done for this week.
Just got to fill in a mountain of paperwork over the weekend...

 Florence starts pre school next week. That's going to be a tough one.

MAY
Educational pscychologist has came & went as part of Owen's "Education Health & Care Plan" - Think it went well, hard to say??? I tried to let her see the "real" Owen instead of his medical notes, but didn't help that Owen had wored himself out being grumpy all morning so wasn't at his best

July
Yesterday afternoon was Owen's Education, Health and Care Plan (EHCP ) 2 hour meeting. Was nervous beforehand at the thought of going in front of a Panel, But speaking out about Owen's Needs, his abilities and what we want for Owen came easily. Think the meeting went well & was happy with my Input.
Final draft needs to be written up and approved. My preference of which school I would like him to attend was made, which will need to go before another panel and approved (or not) sometime in July.
Still can't believe Owen & Florence will be starting Nursery this September. (Or just after for Owen depending on timescales of above)

Pictures from May 2015 to swoon at

After a day sitting in the sunny garden, Owen had floor time to have a stretch & wiggle... BUT Owen decided to ROLL OVER for the 1st time (back to front) & Get himself in this position :-) xxx very proud xxx :-)

This weeks TwinTastic pics xxx
*Note top left - 2 extra reasons to smile
♡Flo fell asleep cuddling Mr O (swoon)
♡Owen rolled over himself to lay like that (double swoon)

That time Owen's Crazy Auntie Zoe did a Skydive For Nascot Lawn - May 2015

Super Auntie Zoe did it!!!!!!
Was a fantastic day, very proud.
Thank you for everyone's support & donations.

Please sponsor my crazy Auntie Zoes Sky Dive... she is doing it for a good cause. Lots of love Owen xxx

Skydive 4 Children's Respite Unit

 

 

Owen's Auntie Zoe visted him at Nascot Lawns yesterday to give them all the donations from her Skydive - Well done again Super Zoe!!! & thank you to everyone who donated. Xxx

Coming to terms - The Months before Owens Gastrostomy.

April 2015

Feeling raw & in a midst of a storm after receiving Owen's Videofluoroscopy (swallow x-ray) full report & talking through it with Owen's SALT. Worse than first thought, Looks like some sort of tube feeding is on the cards in the near future. Trying to sort a joint appointment with Owen's SALT and Community Paediatrician to discuss next steps & long term feeding plan. Will keep you all updated.

July 2015

 

After what we thought was a quick morning appointment... turned out to be an all day affair going to all different department's on preparation for Owen's Gastrostomy Operation which all going well is booked for 9th September.
Didn't want to get to this point, but hopefully this is the best decision for him