Just for you Alli!!!

My best pal pointed out to me the other day that I havent updated on here for sooooooooooooo long altho she does enjoy reading the blogs of all the other SK families!!

So, this is for you Alli!!!

I'm now 40wks and 5 days pregnant, no sign of this baby ever arriving. We also found out we're expecting a little girl!! Very excited about it!! Only just agreed on her name a couple of nights ago - to be announced once she decides to make an appearance............

Got an appointment with the Consultant on Thurs morning to discuss induction, which surprised my MW. Ryan was born by elective section, with no labour, due to an unstable lie at 40wks+6days so she felt that we'd be having the 'c-section' discussion instead. Not sure how I feel about it all, the planning aspect of the section is good - where, when etc - but coping afterwards will be difficult. Ryan is a big loon, 36kgs and 138cms tall, mix this with a section scar and its asking for trouble lol!!!

Induction is more scary - in my opinion. I wouldn't want to go through all that and possibly still end up with an assisted delivery. However, the recovery and the length of stay in the hospital would be much, much better in the long run.

Where's my crystal ball....................???

As for things with Ryan, we went to the appointment to see the spinal specialist. What a feckin waste of time!! They 'cant use xrays done in Aberdeen, they need to do their own, in their own special chair(?!)' so the 'watching and waiting' that we did for a year in Aberdeen to see how quickly his spine is worsening, now needs to be done again for Edinburgh!!
They repeated xrays whilst we were there, with Ryan in their 'special chair' - which is actually a chair with no supports or straps on it (really easy for a child that cannot sit unaided!!). The curve in his spine is now at 55 deg and in the letter we received from them afterwards it tells us how its 'highly likely he'll need surgery'. He also told us 'not to waste our time with a spinal jacket' and when we said Ryan had already been for his first fitting, he said 'please yourself, give it a go and see if Ryan tolerates it' - sooooooooooooo helpful NOT!!! Back to them in June(ish) for repeat xrays so its another waiting game I guess!!

So, tomorrow morning we've got another Orthotics appt, to (finally!) pick up his spinal jacket. Not looking forward to it as its an awful piece of equipment. Not sure why, but this is bothering me more than his hoist, PEG, wheelchair, splints etc! Makes no sense, but did I mention its awful??? However, I'll get over it if it helps slow the curvature down (I think...)

Oooh and his new house chair is meant to be getting delivered sometime after its 'been booked into OT system' after 1st Feb. Can't wait - really hoping it makes a huge difference to his posture. Its got a crazy looking head restraint/support thingy on it too (Grace, if you read this I haven't forgotten that I'm meant to be getting you more info on this!) but everything crossed it does what its meant to!!!

So, thats about it - I think!

Will try to update again after consultant appt on Thurs morning.............send loads of labour vibes my way if you can please...........................

Julie x

What's new with us???

Well it's been such a long time since I last blogged!! I'm now 17wks and 3 days pregnant with our second baby - 'spud'. Due date is 21st Jan - time seems to be flying by already. Wish it wouldn't tho lol!!! Bet I won't be saying that the nearer I get to 40 wks!!

Anyway, tomorrow we're taking Ryan into hospital. This time, on mon he's getting his gastrostomy done and then on tues he's getting a spinal MRI. we found out a few weeks ago that his spine has worsened by over 10deg in the last 6 months. Not good news at all, it's now at a 43 deg angle and getting worse. He's been referred to a specialist to discuss 'options'.

Worried sick about both GA's but got everything crossed he'll be fine. Hopefully he won't be in hospital for too long. 

Will update as and when I can. 

Julie x 

A little update

Well since I last blogged, things haven't really progressed that much - I don't think. Results are in from the endoscopy biopsies - it shows microscopic inflammation. We had another meeting with the gastroenterologist and a dietician. Gastro guy is quite keen to try and control reflux with medication and as Omeprazole doesnt agree with Ryan, he's on Ranitidine. His Domperidone has also been increased too. Dietician feels that Ryan is an 'ideal candidate' for the gastrostomy though - due to the length of time feeding and drinking takes as well as the amount of meds he's on now.
When he was in hospital on 12th Mar his weight was 32.2kg - 6 weeks later he was down to 29.8kg. This is what I was scared of happening - we're trying our hardest to keep him fed enough - its just so difficult!! We're due back to see them the 1st week in June (I think) and we'll see what his weight is doing then. This is something we've never had to deal with - he's always been a good eater and consistently put on weight. Nobody seems to be tracking his weight though so thats gonna be fun convincing them!! We do have copies of various discharge letters detailing his weight so we at least have those!!

Neuro also popped in during that meeting to tell us that the muscle biopsy has come back and for once - its not a 'normal' result. However, this doesn't really help any because she doesn't know what it actually means! We're waiting on another appt to see her to discuss further. One of his seizure meds has been increased again so hope it takes affect soon!!

We mentioned to her too that he's losing the ability to sit - he's never been able to sit unaided but could kinda maintain the position if held a bit KWIM?? Well for the last month or so this has gotten worse - he just falls over now. We were concerned that his spine was worsening, or he was degenerating but I think really it boils down to his weight loss - he's already severely hypotonic and I guess any weight loss will impact him quite a lot. At least, I hope to goodness that this is whats going on!!

Julie x

Gastro update

Was a really good meeting with the gastrostomy nurse!! Got a lot of information out of it, although it did raise some questions too!!

Think Craig was totally overwhelmed by it all trying his hardest to take it all in - and think of it in positive terms!!

It does look likely that, if/when we go ahead with this, Ryan will definitely need the fundoplication done at the same time. Thats the bit i'm totally dreading not so keen on. Guess thats why we still need to discuss this a lot more, especially with the gastro doc.

All in all though, a very worthwhile discussion - even if it did involve seeing a gastrostomy on a doll that wouldn't been out of place in Chuckie!!! SCARY!!!!

My fortnightly update!

Well Ryan had his endoscopy and biopsies done on Thurs. Anaesthetic went fairly smoothly although anaesthetist was flapping a bit about the sub-laxation in Ryans neck - *rolls eyes* - other than that though, was pretty straight forward.

Gastro guy came to see us afterwards, results so far show very little inflammation in his throat etc. This means that his body is dealing with the severe acidic reflux he is having but 'this is not necessarily a good thing'.............................WTF???????
Doc also witnessed the reflux happening so as you might imagine - like we did - he'd be put on medication or surgical options might've been discussed again???? Wrong..............we WAIT!!

Got to go back in 4-6 weeks to discuss results and what happens next. Its seems the medical staff doctors involved with Ryans care have the debilitating disorder of not being able to make a bloody decision without discussing it with a thousand other people who know nothing about Ryan!!!

Anyway, tonight we've got a Nutritionist Nurse coming to the house on her way home from work - hows that for service - to explain gastrostomy procedures etc to us. This should be really helpful - we're getting a bit worried that we're gonna be left with the decision regarding going ahead with this for Ryan. He aspirated last week and it was completely terrifying - I couldn't cope with that happening all the time.

Wish us luck for an informative meeting tonight!!
Julie x