Tuesday, February 9, 2016

Lots of 'NEW'

So 2016 is well and truly here and we feel like we are just catching up with that fact as we had a lot of change.

At the end of last year we moved into a larger rental property and rented out our place =  NEW HOME.  Our home is small and especially so with a stream of miscellaneous medical people around on a regular basis.  It felt like the right time and we needed to consider the girls and their needs more.  It now means Jasmine is under our roof and not in the shed!  This meant Sam and Jasmine had the opportunity to move to NEW SCHOOLS.   Francis also got a NEW JOB, as did I (just a little one, 9 - 12 Tues - Friday) and we bought a NEW (second-hand) CARAVAN (first one was a leaky home!).  So all of the above was quite a juggling act, as there were meetings and countless emails/phone calls just to sort out Sam moving school/care options etc.  I am pleased to say that he is now in week 2 of his new school year and totally loves it and has fitted in so well.  This is not just due to the hard work of so many people at the school, but of course because his faithful carer of 6 years was kind enough to toddle off to the new school with him - Ange is truly gold!

With the end of year busy and the added busy of the list above, I crashed and haven't yet got back to full capacity.  Chest infections, Strep throat etc, and 3 lots of antibiotics and 6 weeks later and I think I'm nearly better.  The frustrating thing is I was nearly better a few times and then Sam would have a really bad night (UTI), then we'd have a hospital admission for 24/48 hours and with no reserves on top of poor sleep I would slip back.

So this weekend coming up I am staying here at home to sleep and rest whilst Francis takes the kids away for the weekend... and then next weekend I am heading off to Napier to stay with my sister Elaine and experience Art Deco weekend and also have whole nights sleeps without pumps, leaking drains or vomitting to wake up for!  2 weekends in a row with sleep - can't wait!!  Francis is amazing and always helps so much, but he seems to cope better with broken sleep than me. 

Anyway, enough boring... on to Sam!

Sam has had a fabulous summer!  He has camped in our caravan and had his first Kayak experience, first music festival (Festival One) and lots of lovely play time in the caravan and with friends. 

 Dad and Jasmine taking Sam on an adventure

Chilling on a wet day in the caravan - no TV, no DVDs, no technology...... ah... bliss
 Possibly a tad too loud, but he loved the social aspect of 3 days with people!
Sams buddy Liam won a photo competition with Sam as his 'model'.  It's such a great photo of Sam being contemplative (um, he was bribed with a new matchbox car if he sat there!)
Rocking the new school uniform - Mellons Bay School.

We are back into appointments and plans for his nutrition and care.  He continues to get UTI's and he has had some hospitalisations and meds at home, but we are working on mechanically emptying his kidney and bladder using different techniques, to help us get the residue urine out, as any left in is a source of infection.  Warmth + moisture = bacteria.

We saw the Urologist last week and it was a positive appointment.  Ultrasound scans taken when Sam was an inpatient 2 weeks ago, plus the results of a blood test and special nuclear testing in December show that his kidneys are coping remarkably well, considering they are infected so frequently and then have to cope with strong drugs.  He explained that scar tissue can be a result of infection on an immature kidney, but these risks reduce after about the age of 7 or 8.  Sam is 7 in June, so although he isn't in the clear yet, everyone was optimistic and delighted in the state of his kidneys with all the other factors involved.

Sam is now on the 20 percentile for height for his age, but has been dropping the weight and is down to 20 kgs.  We are working on trying to increase the calories in his enteral feeds, to see if we can fatten him up a bit.  This is preferable to having to increase his TPN again.

He shows signs of interest in food and positive peer pressure is such a big factor in his normal development.  His little buddy Liam (photographer extraordinaire), had him licking lollipops and kissing melon with no questions asked.... so we continue to try to encourage him with food.... but as with my other kids, he'd rather take advice from a peer than from his dinosaur outdated mother!

So I feel like we are back on the rat-race of hospital/school/deliveries etc... except we never got off and had a break.  But that's the thing with a chronic condition, there is no break - no break for the diabetic or the epileptic or the stroke victim.... life is what it is and we have to wake each day and decide how we respond to the challenge of that.  I have to confess with illness piled on top of exhaustion I didn't responded well.  

At Festival One I went to a seminar given by an inspiring man who has Cerebral Palsy (whose name escapes me right now).  He has a PhD in Theology and lectures at university level.  Listening to him from his wheelchair, constrained physically by his body, his heart and soul was ever so alive.  He was vibrant, yet real in the struggles.  He was optimistic and hopeful as He had found the reality of faith in Jesus the source of his strength to keep going each day, inspite of physical pain and trials. He was such a source of encouragement to me. May you have people around you wherever you are that can encourage you today.

I hope to be more regular with the blog... sorry, it has definitely slipped!  And I think a regular photo or two of Sam is a dose of good medicine too. 

X Shirl

Watch this space....

Phewf, what a crazy 2 months it has been.... this is just to let you know that tonight once my little cherubs are fast asleep I will update Sams blog!  Finally!

See you soon x