The long silence since last blog is due to so many things, but can all be summed up in a nutshell as, 'LIFE'. We all have times out of our control and we just have to roll with the punches and see what the next day holds. So the last 3 weeks have seen Francis in the UK for 2 weeks for work, both girls off school for between 3 & 5 days with various bugs, Sam with a severe urinary tract infection again, relatives to stay.... and the list could go on. Suffice to say we are all relieved to have Daddy back home and hopefully a bug free quiet last week of the school term.
Sam is still on meds for his UTI but seems to be doing well. His urine is now clear again and he is passing urine without groaning and pushing - poor wee guy. They come on quickly but thankfully he seems to be still reacting well to the antibiotics.
On the sleepless nights front we are seeing some progress! After searching various online groups, 6 different testimonies of teenagers/adults on TPN were found stating how nauseus they were when on TPN. So with this, plus our experience of Sam not vomitting when off TPN, this week sees us trialling 4 nights on TPN without lipids/fats and the other 3 nights on a reduced lipid regimen. AND the results are staggering! The nights he is not having fats in his TPN he is only waking 2 or 3 times to cough/burp but no vomits...and the other nights he is having minimal vomits. I am so 101% sure that we have found the culprit.... we are all looking forward to getting life/sleep back.
Tomorrow Sam has the occupational therapist coming at 8.30 to work with him, then he has Mainly Music. Wednesday will see us back at Starship for his gastro consultation. At this review his monthly bloods will be taken and we are looking at increasing the calories in his milk that goes into his gut. Again this is all progress and we are delighted!
On a slightly humourous albeit bizarre note, I thought I'd finish with a 'strange but true' story about my half marathon training! On Saturday I met my running partner at One Tree Hill at 6.30am for a run - 14 kms and 1.5 hours later we finished. Knowing we were aiming for a longer run I came complete with drinks and jelly beans - a tip given to me by a marathon running friend. Unfortunately my running gear didn't have pockets and I didn't want to wear a back pack, so with drink in hand, where to put the jelly beans? I had the genius to stick them in a ziplock bag and pop them inside my bra... left cup to be precise! So every couple of kms, we would indulge in a jellybean.... well I get home and my running partner texts me with her running woes - blisters on her feet. Feeling quite pleased with myself, I texted back that I was ok. Then an hour later I hit the shower and discover a blister on my left mammary gland (boob sounds so crass don't you think?)... then it dawned on me the ziplock bag of jellybeans was the culprit! Most runners tell stories of their aching archilles, knee strain or torn ligaments.... not me! This rookie runners first injury is a blister where it shouldn't be! Next week we are aiming for a 20k run, which will require more jelly beans I dare say, but I will be choosing my running gear wisely - the ones with pockets!
I am so grateful and humbled and motivated by all the kind people that have donated to Kids Foundation - over $1600 so far! Having met families displaced in Auckland for months at a time, this new home is going to make such a difference to struggling families in desperate times, so it's with total admiration and heartfelt appreciation that I thank you for your sacrifice of funds and generosity.
Sam has been receiving monthly parcels from the Early Childhood Education unit and he's been loving getting into painting and reading.... so it's great to have access to other stuff for him. I will try to post some photos for you.