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