Friday, January 8, 2010

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!

7 comments:

Anonymous said...

Hi guys, happy anniversary! We celebrated our 20th on the 6th also. Glad to hear you're feeling better Shirley, hope your week away is a wonderful holiday. Love Bronwyn & John

Anonymous said...

Wow how wonderful to see the photo of Samuel without any tubes. He sure is growing up :)
Happy Anniversary and enjoy enjoy enjoy your time at the beach.
Our 19th anniversary is coming up in Feb. Wow how time flys!
Love Margo

Anonymous said...

OH my goodness Samuel looks so gorgeous , how lovely to see him with no tubes . what an incredible blessing you have in your hands .Hoping all the wonderful milestones are thoroughly enjoyed..
lots of love and you are all very much missed,
Spragues

Anonymous said...

Hi guys,
Happy anniversary! Sorry - missed that one while we were in te Anau.Hope you managed something special - or else will get to do it at a later date. xx to you all.
Jude and co

Anonymous said...

YAY! he so big and so cute!! Congrats on the little time you have spent in this home. Missing all your smiling faces. It is so quiet here at the moment, you wouldn't recognise it!

peace :)
one of those yellow gowned ladies.

bronheslop said...

It was so lovely to come and visit last week; thank you for sharing your precious time with us. Thank you for sharing ALL of this with us - as Francis said, there hasn't been much in this journey you haven't shared here, and we appreciate the insight into your world. It was lovely to see the girls, too - James and Ollie loved playing with them. Big hugs from us. The Heslops xxoo

Susana Asin - Verrier said...

Samuel looks so happy... and lots of improvements... Thanks to our Lord.
Many blessings to you all as you celebrate more anniversaries!!!
Saludos, Susana & Gui & Joaquin