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