Monday, July 18, 2011

Long Time No Hear.. or see


UPDATE: Francis skyped and with his advice (re-boot the cpu) you can see the results. It was nigh impossible to get Sam to take his eyes of Bob the Builder! This walker does have a seat, but Sam is totally standing, flopping into the chair when he gets tired.

Yes the technical half of my relationship is on the back of a landrover bouncing over dirt roads for hours on end to visit villages and inspect wells in Tanzania and Malawi that have been put in, and in his absence I am really having trouble figuring out how to upload photos..... so this is a photo-less blog.

It's been a really full couple of weeks, days blurr into other days full of the constant stream of people to the home to work with Sam and I. Mondays normally see atleast 4 or 5 medical people pop in, today it was 2 registered nurses (RN) followed by a speech language therapist (SLT), plus my 'helper' and a saintly lady that cleans the toilet and does the ironing on a Monday.... all people that keep the 'Sam jugernaut' oiled. So today was typical for Sam, but not typical for me as both girls are having a holiday sleepover with Nana & Grandad, so it was amazing to be able to flop back into bed at 8.30 am (yes, am!) and sleep til 10, get up and quickly shower/dress ready for the RNs at 10.30, 11 - 12.30 was the SLT who had great ideas on how to play with Sam to stimulate his oral skills incorporating food and play. She left at the same time as the carer and cleaner and I put Sam to bed and joined him for a 3 hour nanny nap! We woke about 3.30 and after doing his cares (emptying all his bits) we went for a 1 hr 40 walk discovering the many walkways that wind around our new home, past lovely streams, through bush and saw the best rainbow and stunning kingfisher. The last 20 mins Sam was getting a bit bored, so I walked back on the main road so Sam could admire all the wheels as he inhaled exhaust fumes.....

We got home about 5.30, I started his night routine of hooking up meds, putting in drains and getting the TPN trolley ready to hook him on. The TPN delivery arrives around 6.30 (6th visitor to the home) and I hooked him up, read 'Hairy McLeary' to Sam, said our prayers (Amem) and I leave him cuddling 'bubby' - his buzzy bee. Normally he sleeps for about an hour, wakes and needs picking up as he does his first burp/vomit. About now (9.30) I will draw up his 4 meds and start giving them to him over the next 30 mins, which takes us to 10pm when our 7th visitor arrives (night sleeper) and she will leave at 6am tomorrow.

It seems insane that with this help I am still so tired. You'd think I would have hours to swan about having coffee with friends, but the reality is that it takes a lot to manage and oversee. I think 2 years on, the effects of having a chronic kid are leaving me rather tired. Add in to this that Sam can't walk, means that I am lugging a 12 kg (plus pump and stand) around, so I really have hit the wall and need these day naps to get me through. Included in this mix of helpers are the many phone calls and emails that I need to keep on top of - sometimes I joke I am running a small business without the pay.

Bizarrely I know I will sleep solidly tonight after 5 hours of sleep today. When Francis is here he has to cope with the wakeful nights and then go to work and function, which I can't imagine how he does it, plus he comes home after a busy day at work and helps out.... he's great, and I think you can tell I am rather pining for his return!

But Sam is getting so much stronger and the extra time we're putting into physio and making him be in his standing frame is really paying off. Had I managed to upload the photos you would have seen him totally weight baring and with a grin that shows he is so excited about his achievement. His speech is coming on daily and today he learnt to say, 'pink' and 'bubby' (which is buggy in context)..... of course this is to my finely trained ear and to the rest of the world he is still babbling, but he's turning into an eloquent wee champ/chump/chimp (you choose).

We hope to get out more this week as the weather is amazing at the mo', not like winter at all, but a good chance to get Sam out on playgrounds and we might even visit the local Animates petshop, which is his regular haunt, as he loves woofing and meowing at the local residents.

X S

4 comments:

Jill said...

Your observation about running a small business make me smile. I have said the same thing in the past - I thought having a baby meant just the usual things, like a bassinet and a stroller. Not a bulging filing cabinet full of medical records and paperwork :) The skills acquired in the course of being the mother of a "special" child would look good on a CV, but we're not likely to ever have the time to put them to much use outside of the day-to-day responsibilities!
Praying for you, for stamina and rest.

Jill said...

Your observation about running a small business make me smile. I have said the same thing in the past - I thought having a baby meant just the usual things, like a bassinet and a stroller. Not a bulging filing cabinet full of medical records and paperwork :) The skills acquired in the course of being the mother of a "special" child would look good on a CV, but we're not likely to ever have the time to put them to much use outside of the day-to-day responsibilities!
Praying for you, for stamina and rest.

The Doughertys said...

love you guys. fi and col x

AZ Advanced Electrix Ltd said...

Thinking about Sam today, hope all is good.

miss you all.

love Sam