The Boys Home Alone

Shirley, Jasmine and Candace hopped on a plane down to Dunedin last Monday to spend a week with Shirley's family down south. Communication has been spasmodic due to lack of cellphone coverage and/or charged battery, but last I heard they were all having a fantastic time being treated to Macdonalds by Aunties, seeing penguins, feeding goats, pigs, dogs, chickens etc.. on their cousin's farm. Suffice to say it seems that the Davy boys are not being greatly missed by any of the Davy girls who are having far too much fun to think of poor old Dad and Sam left at home.

But things are good here too. We've had mum down for the last few nights which has given me two unbroken night's sleeps, and yesterday my cousin Bruce and his family Sue, Ben and Stephanie Davy parked their campervan in our drive for the night and we enjoyed a great evening looking at 75-year old photos of our dads playing together as young boys and barbequing on our front lawn/park. Monday - Friday we now have care workers Mary, Sue or Angela come in to help us look after Samuel and do his physio exercises, washing, and other related chores, which makes a huge difference and means I can start looking for work now that we have some regular support at home.

The summer is still going strong here and Samuel is getting out for his dose of Vitamin D in the late afternoon sun. We've been supplied with a great chair with sufficient back/side support for him to sit up for extended periods which is strengthening his back/neck muscles. Day by day he's becoming more animated and active as he has daily physio, he's reaching out for his toys and playing with them and I don't think it will be too long before he's rolling over. We sit the chair up on the kitchen table and he loves being at the centre of the action and watching everyone come and go. He doesn't have a visit to the hospital this week, so we won't have any updated test results but his complexion is still looking great i.e. no yellow eyes/skin and his urine is clear again now that he's been put on another antibiotic for the latest urinary tract infection (he consistently gets different bugs in his urine due to his plumbing problems).

We're now busy looking for a new house since we are due to vacate this place in March. So if anyone knows of a 3 - 4 bedroom house up for rent in the Eastern suburbs of Auckland let us know. We're not expecting to find something we can afford in this suburb (Kohimarama) as it's incredibly expensive but as long as we can still keep the girls in the same school without too long a commute each day.

Other news is that I'm heading back to Thailand and Laos for one final visit to assist with the handover to my successor who has recently been appointed. So the girls return next Monday and I leave on Tuesday for almost two weeks. It will be the longest Shirley's looked after Samuel and the girls without me but with support from our family and the care workers we're confident all will go well. I must admit I'm really looking forward to getting back to Asia, I've really missed everything about our past lives - friends, colleagues, work, food, culture, language.....and as the last trip in October was so busy for me having to pack up the house, I don't feel I really had any proper closure myself. So this is my opportunity to close bank accounts, catch up with my former Lao colleagues, enjoy friends' company without the stress of packing, and savour the local cuisine washed down with ice-cold Beer Lao!

So you may not hear from me for a few weeks (unless you're in Bangkok or Vientiane in which case I hope we can get together), but I'm sure Shirley will update you next week on their holiday down south and how Samuel's doing after his next check-up.

Kor prajao euay porn (Lao for 'God bless you')

Francis

Holiday and a bath!

Well we have returned from our first family holiday with Sam. It was a good experiment and we are glad that we only went 40 minutes away to Red Beach - meant we didn't get the 'are we there yet?' questions! We took both cars as one was laden with Sam's gear - oxygen concentrator, oxygen tanks and boxes and boxes of other supplies, and one laden with 3 females itching to get their togs on! The campsite/unit we stayed in was 5 mins walk from the calm sandy Red Beach and 5 minutes walk the other way, down 'Jacob's ladder', to a rocky inlet and cove, great for getting crabs and adventures.

It was lovely to be in a different setting and to have uninterrupted time with the girls. In saying that, I had moments of realising that I perhaps wasn't that well adjusted to being in 'Holland!' I missed that Francis & I hardly got to do things together with the girls. We alternated mornings at the beach with the girls and then we'd meet up for lunch, wait for Sam's hook off and then head away together to the beach... again alternating who would be playing with the girls in the water and one with Sam on the beach or back at the camp. I know this is a normal scenario for any family with a young baby, but I guess it's just that I miss having Francis around whilst 'tag' parenting.

On holiday (and now that his PICC is in his arm), we thought it was time Sam had his first bath - previously only ever sponge bathed in bed. So we dutifully clingfilmed his arm, then wrapped it in a bag and sealed it with tape and popped him in a nice warm soapy tub.... and he reacted with a look of terror and screamed for the duration - which was all of about 2 minutes as was all I could cope with. So we will keep trying to get him used to different sensations gradually. Still it was good to try and now we know it is do-able.

This week our home-help started in full. And all I can say after 4 days of their help is we are so grateful for them! They are lovely ladies that we are training up to help out with Sam and also just help out with household things whilst I'm tied up with Sam. It is really going to make a difference to our routine especially once the girls go back to school. I already can tell I will feel confident enough to leave Sam in their care whilst walking the girls to school or attending something with them.

Sam had a hospital visit yesterday where the Dr/dietician decided to increase the vitamins and lipids in Sam's TPN to compensate for growth and vitamin deficiencies, but also to decrease the time from 18 hours to 17 hours. We also are to increase his milk to 12 ml/hr - we tried this about 6 weeks ago but Sam didn't tolerate it, so we went back to 11, but are re-visiting 12 ml. Physio work has really paid off as is limbs are much more active and we continue to work about 5 times a day with him - 5 short bursts of physio rather than a long session.

Next week I'm taking the girls down to Southland to hang out with Grandma and cousins etc...and we're really looking forward to it! Francis will stay up here with Sam, the carers and Anne whilst I will be having fun with the girls catching up with their cousins which they haven't seen in 2 years. I know I will miss Francis & Sam, but it will be lovely to have quality time with the girls. So any blogs next week will be up to Francis ... if he has the inclination!

X Shirley

More 'FIRSTS'

On Saturday we walked the 5 minutes it takes to get to the beach from our house.... was great to see Sam loving the feeling of sand on his feet for the first time. We're off on holiday today to Red Beach and are so grateful to the KIDS Foundation which has holiday homes available for families with sick kids. Check this out: http://www.idfnz.org.nz/pub/cms/services__holiday/files/REdbeach.pdf to see where we will be, and to see the great organisation that has taken us under their wing. Again this is a 'first' for us - our first family holiday and we are looking forward to quiet; books; sand, sea & sun; bbq's, jigsaw puzzles; sewing (am taking my sewing machine as the girls are keen to make clothes for their toys!) and stocking up our memory banks!

I can't quite believe we're going - ALL of us.... it's wonderful and amazing and we are so grateful to God that Sam is well enough and also such a content and happy little boy. I know I am biased, but he is just so happy and responsive and a real joy to have around, which makes it pure joy for all of us and special to see the girls with him.

Am off to pack..... oh now where did I put that bar of chocolate I wanted to sneak in....hmmmm....

7, 14 & 50!

Well Sam turned 7 months old on 6th Jan.... the same day Francis & I celebrated our 14th wedding anniversary, which was the same day Sam had his outpatients appointment and his blood results came back with his biliruben at 50! That is an all time low and we are thrilled! Anything under 50 is considered 'normal', so this is great news and means his liver is gradually improving. The whites of his eyes are actually white for the first time ever, without their characteristic yellow-tinge. All the other blood results are stable, with the exception of a few of his electrolyte levels needing to improve.... Sam is on some vitamin supplements so hopefully these will show themselves when he next has bloods taken on the 20th. Sam is now on prophylatic antibiotics, for re-occuring UTI's, but generally we're very encouraged by how well he's doing. We have also been doing much more physio work with him and being aware of how we hold/position him on his bed etc, to help his very under-used muscles develop. It takes a lot more time, but the results seem to be quite quick and he is looking like he might be interested in thinking about rolling over!

It's been a busy 2 weeks for Francis & Anne (Nana) as they've held the fort whilst I've been sick. We couldn't have gotten through without Anne staying and doing her magic with Sam and the housework. Francis did a brilliant job of caring for Sam and is as confident and capable as I am, so it's great to be able to rely on each other, but it did show us that there isn't much slack should one of us be sick, or indeed when Francis gets work and I get sick. So we're thinking and praying for who would be the right person to train up as a back-up for his TPN. This is a full sterile technique - it's not actually that hard (clearly - we've both learnt it!), but just has to be thorough and methodical.

We've had a great week catching up with friends (it's summer holidays), bbq's and picnics. I actually find the holidays harder than normal term time, as the girls are keen to get out and do stuff, but it's just really hard to have quality time to do that, virtually impossible with both Francis and I as Sam needs attention. I have felt a bit down as I'm feeling torn between wanting to just hang out with the girls, but being distracted and with short windows of time. Any given day this week we have had 3 different visitors to see Sam, as well as phone calls. Yesterday it was the social worker, followed by the Stoma Nurse, followed by the weekly HCN (Home Care Nurse). The day before that it was the oxygen delivery guy, followed by the occupational therapist, followed by the TPN delivery guy..... it's all necessary and important, but some days I just want to be a hermit and scream, 'go away and leave us alone' and just be us.... but I realise that achieves nothing and are having to learn to re-prioritize life for us. 'Normally' I used to think it was so important the girls made there beds, had a clean and tidy house, laundry on the line etc... then when all that was done we could go out and do something. That doesn't really work for us anymore, as the free time we used to have may be when health visitors are here and the girls end up being at home all day and missing out on any time with us.... so we are learning to look at the clock, factor in when people will be here and demands put on us by Sam's needs and then forcing ourselves to ignore the dishes and mess and be engaged with the girls. It doesn't sound that major, but it's an adjustment for us all.

Another major event on our radar is looking for a new home for us to re-locate to in March, as our wonderful refuge will be being renovated. So we are putting feelers out for a 3/4 bedroomed home to rent, hopefully in one of the suburbs around here so the girls can stay settled in school.

We are SO looking forward to our holiday next week - a week at the beach about 40 minutes from here... without hospital appointments or medical visitors.... just US! Hooray.

Ok - novel over, we're happy and well, encouraged and thankful to God for His looking after us and looking forward to the beach!