Monday, September 24, 2012

Crazy Busy Three Weeks

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!

Thursday will be a big day with a Ministry of Education person visiting, along with our social worker to figure out a plan for Sam around education.  Currently his care is provided through Ministry of Health....finally when we are nearly figuring out the painfully slow bureacracy that that is we are now having to switch to a new ministry....and we start all over again!  For way of helping you understand how painfully frustrating dealing with the admin is, the Ministry of Health agreed that our funding would change on May 11 - this was after 2 years of negotiations and getting our M.P involved..... last week our MP's office phoned again to see how things were progressing..... um, I was able to tell him from where I sit, nothing had changed at all - nearly 5 months later! I am aware there are many meetings and policies etc et al that are being held in the background, but it is a demoralising exhausting place to be, being a carer trying to care for your loved one with supports that are so slow and only seem to crawl at a snails pace should you have the energy and nouse to keep pushing...... thankfully for Sam he has a determined mother, but I do feel  for kids with parents whose education, language or culture limit their ability to ensure their child is getting the best care possible.  So for these kids too, I plod on, whilst I try to not get too cynical and remain positive - with limited success depending on how much sleep I have had!

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.



Todd said...

Glad that Francis is back and that the girls are better and Samuel is on the mend.

I think you may have stumbled on new product - padded ziplocks for mammary-glanded runners.

Lot of love from the Bruce's

Keeping you in our prayers.

Todd, Analynn, Teresa and Angela

Clare said...

Hi guys, thanks for lending Francis to us; while your life at home has been so full on. Enjoyed this window onto your life - the good, the funny, the tough battles too. heaps of love to you all, Clare n co xxx

Janice said...

Heres hoping for a quiet bug free last week of term!!
I look forward to sharing blister stories next week xx

G Downes said...

Well where would I start being the Glen I am..... At least you tucked the jelly beans in your bra and not in ya knickers....... Ok that out of my system....

I understand the strength it takes to hold courage when dealing with large departments. I am sorry to say that the path seems to not get any easier as you travel your journey through this battle.

Our last battle was ACC as you know.

Just know that because you love your child you are the best ambassador and that you are only fighting for what should be rightfully Sams already.

Know that this journey has been fought before and that others have survived and achieved great things for their loved child. In the end of each battle know that you won due to the power of a mothers love.

I am sorry I cannot make things flow easier for you having experienced these pressures but to promise so would be a lie. I will however say that as a friend I am here for you and your family and only a call away.

Stay strong when you fight, rest when you can and be supported whenever possible my friend.

Kate Manson said...

Am so pleased to read that you have almost 'cracked' Sam's sleeping issues! Yay to an uninterrupted night's sleep! Will be praying you get many many many nights like that xox