Diagnosis...Cute As A Button!!

July 14th 2010

We've been on holiday in the West of Ireland for the last two weeks and although the weather was temperamental, it's just great to get away from everything for a while...all your troubles ebb away on catching sight of the Twelve Pins Mountains, so rugged and timeless, always there even if at times you can't see them and things look so bleak and dull.  A bit like life really.  Driving through the mountains on a sunny day demands a level of self-restraint to keep your eyes on the road rather than allow them to drift to the side to take in their austere beauty.  I've seen mountains around the world..the rounded greeny peaks of the English Pennines, the  spectacular show pieces of Switzerland, the strange looking peaks of the Sahara from above and so on but even though they're not so high as other ranges there's something different about the Connemara mountains.  They're like a gnarled old man who has given his looks to a hard life to provide for his family and has been the silent and sad witness to the history of  Ireland's west coast-a story of poverty, starvation, famine and emigration.  He still bears the faint memories of families long gone in the faded potato lazy beds and roofless ruins of the abandoned tiny stone dwellings dotted at his foothills and stands with the dignity of a life lived well.

Connemara

An Evening Swim

Well anyway...we had a great time, made better by the presence of my father who joined us for ten days.  It's a great opportunity to hear stories of  his summers spent here in the homeland of his father and ancestors which we don't usually hear as being in the place and very house where they lived and where I also spent my own childhood summers  makes the stories come to life.  I'd brought a bundle of books but didn't read a single one!

Last Monday I returned home with Louise for one night to bring her to her neurologist appointment on Tuesday.  Going to sleep that night it struck me that I've never actually spent a night alone in our home before..well, alone except for Louise.  Quiet.

The appointment was straight after lunch so there wasn't anyone in front of me.  The nurse had told me before that the neurologist reminded her of  John and I agree with her.  He is the same style of doctor as John is on the odd occasion when I see him in 'doctor' mode.  John even has a pair of trousers the same as his!! I know..I know..trivial information!! First he asked me lots of questions about Louise and examined her...he diagnosed that she's a wee flirt!!  His secretary brought along the MRI films and he spent a long while peering at them on the light board, comparing one to another and thinking.  Then he turned to me and said "Well..I've seen this before-her brain is perfectly formed except for one little piece that's missing...I don't think it'll cause her much trouble" I was astonished!!  "So can that piece be done without then?" (I was thinking a bit like the appendix) " Well I wouldn't say THAT" (smiling) He went on to explain that what makes Louise's cyst different is that the piece that's missing is allowing the cerebral fluid to flow into the middle of the brain.  The area affected controls balance but there's absolutely no hydrocephalus there at all.  I could see that myself from the MRI, just a thin layer of fluid around the brain, in the cyst and interacting with deeper in the brain.  He called me to have a closer look and showed me her cute little teeth in her gums, hiding until their turn comes.  I thought her eyes looked so funny-big eyeballs like a cartoon character, and in the corner her familiar little head from the side. I'd never seen an actual MRI before and was completely intrigued, especially as the doctor was really going out of his way to explain everything, showing me diagrams and pointing out details.  He'd be a great consultant for a SHO to be under as he clearly has a desire to impart his knowledge.  I asked him did he agree this was Dandy Walker as has been previously diagnosed with all 5 characteristics showing up in Louise's last MRI and he replied it's not classic Dandy Walker but rather  Dandy Walker Varient.  I told him I couldn't believe all he was telling me as I was expecting much worse.  Now I'm not one for dramatics...well...actually..I am, but what intrigues me is this-did the brain reform itself? How can 5 malformations turn into ONE piece missing? A Malformation is something that is MAL  FORMED something that is formed wrong...interesting. ( Perchance all the prayers are kicking in? )

I asked him about the cardiology team's concerns about the operation triggering hydrocephalus.  He answered that that operation indeed CAN trigger it and he explained how that would happen, however it's no more likely to happen to Louise than any other child.  I was delighted to hear that!!  She'll also be no more prone to epilepsy than any other child.  He agreed that having so many siblings was a huge plus for Louise's development as she'll get so much stimulation and encouragement but he also thought early intervention was probably a good idea even if she's bang on track at the moment and is referring her to the Enable Ireland brand new children's services facility which is about two minutes drive from my house!!  I don't need another appointment just now as he can see Louise when she's in in a few weeks.

So all in all, I couldn't have asked for a better visit!

We headed back west, me and my little flirt!!

Yesterday we had an appointment with the cardiologist. As he was examining  Louise she was doing her now characteristic win over the doctor routine! Dr M  said she was a little charmer and cute as a button!! He did an ECHO and is still very happy with how the band is holding up.  He's pleased with the neurologist's opinion that Louise isn't at more risk of hydrocephalus than anyone else and said that's the best you can hear.  The operation will definitely be in August as he doesn't want it to go much longer and her weight is coming on very well.  I brought Miriam with me to the appointment as she wanted to put a face on the name, he'd no problem with her sitting in and kept calling her Big Sis...he always calls me Mum!!  We really are so very very lucky that ALL the doctors and nurses dealing with Louise's case are exceptionally friendly apart from their good reputations, it makes a real difference.

I'm starting to get a bit apprehensive about the surgery now but the sooner it's done the sooner it'll be over.  Please continue your prayers for our ( I mean our as in everyone's) little precious!!

Finally, Thank You, Thank You to our friend who climbed Croagh Patrick today in adverse weather and persevered to the top for Louise.  You know who you are. I'll never forget that you did that.

Louise With Inisboffin In The Background.

Cute As A Button