MRI results (for now)

Emily was really her true brilliant self and had her MRI like a champion.  She was groggy and confused afterwards because of the anaesthetic, but as soon as it had worn off she was her normal cheerful self. 

The Doc is very surprised by what she saw on the MRI.  She was expecting one thing, and Emily (in her normal style) has the complete opposite going on.  Basically, Emily has a surplus of connective tissue between the left and right sides of her brain, and between the various areas of her brain.  What that means, right now, we are not sure of. But the Doc is letting other experts have a look, and will hopefully have some answers for us soonest.  I am just so relieved that it doesn't mean more operations!

Emily's year to date

So far, this year has been anything but dull. Emily had her palate-closing op in February, and promptly came home from hospital with a cold... It felt like a lot longer, but once her 14 day healing period was up, we started her on 'normal' bottles - very exciting. She still has a small hole in her palate just behind the gap in her top jaw so she still can't suck on a bottle teat properly and I have had to cut the holes in the teats bigger so that she can drink enough without getting too frustrated or tired.  It is very funny when she tries to hold her own bottle, pulls it out of her mouth, spills milk all over her face and then looks at me like I am mad, like it was all my fault...

Emily also had her first birthday party a week after her op, and she was spoilt rotten! A big thank you to all who make my darling one feel as loved and as special as she is!

In June she had to have another set of grommets inserted as the first pair had already worked their way out and her ears were filling with fluid again.  This will probably not be her last pair either as the muscles that control the 'valves' at the end of the tubes that drain into the back of her throat from her ear might take a while to learn what they need to do, and then do it properly - it all works with the palate muscle, so the fact that they don't work as they should makes sense.

We have also being going for neuro-physio to help the Bean to learn the correct way to sit, move and to teach her brain to talk to her body in the correct way.  She is not a big fan (gets very angry and shouts at us the whole time), but her progress is amazing.  We put the physio on hold just before her grommet op as we were worried that the fluid build up in her ears could be causing unnecessary discomfort during physio and our next class is this coming Wednesday - wish us luck for a less angry Bean!

We have also had to put Emily back on Losec as she still seems to be struggling with reflux, hopefully my darling child will catch a break soon.

We have also taken Emily to see a Paediatric Neurologist, because just about every medical person that saw her commented on the shape/size of her head - I cannot tell you the frustration and heart ache that finally lead us to this doctor, let me rather just say that we are glad we have found her.  It was on her recommendation that we took Emily to the neuro physiotherapist and it is on her recommendation that we are taking Emily for an MRI on the 10th of August.  While we now feel that Emily has a familial big head (that damned gene lottery), there are still too many unanswered questions that need answering while Emily is still young enough that should we need to (and, lets hold thumbs that we don't) we can act on now before it is too late.  As she will be under anaesthetic for the MRI, they will also draw blood to do genetic screening and to check her thyroid function.  My petite bebe still only weighs 7.5kg, so we need to get to the bottom of that too. So, lots in the month ahead, and I will blog all the results.

On a completely different note, Emily's 'Miles for Smiles' cycling team rode the Argus this year, and needless to say (but I am going to say it anyway), Emily and I were endlessly proud of all who took part and rode for this amazing charity.  Her Dad, Grandpa and Uncle Ronald all finished the race!  These are the amazing things the people in Emily's life continually do to show her how loved and cherished she is and as a reminder that we are all so blessed to have this awe-inspiring child in our lives.

Bigger than I realised!

They always say that a marriage is bigger than just the two people who are married.  Well the same applies with a special needs baby! The woes and joys of the last year have had an impact on more that just Emily, Grant's and my lives.  All those who love her (and there are too many to mention) have been deeply impacted by all we have been through in her life so far.  I have been very caught up with how I am (or am not) handling all the issues we are facing, but, once again, the lesson here is that it is NOT about me.  It is very hard as an adult to comprehend what a baby must be going through.  I also worry about how much of this turmoil she might remember.  I am constantly being reassured that she won't remember any of this when she is older, but in actual fact, I also worry about how much of this she won't be able to remember.  Not the pain and fear, obviously, but the overwhelming love and support she is constantly surrounded by.  Grant and I need only make the slightest mention of needing help with or for Emily (or ourselves) and we are inundated with offers of assistance.  This all sounds so trivial when put down in black and white, but it truly is so humbling and moving.  My greatest wish is that our beloved daughter remains forever aware of the wonderful world she has been born into, a world where, if anyone around has anything to do with it, she will never know true unhappiness.  So, this post, is to thank each and everyone one of you who have been there with us, each step of the way.  From the day we found out that Emily would be born with a cleft lip and palate, till the day her palate was closed and on into her 'catch up' phase now that she is 'normal'. There isn't really an appropriate way to express my love for you all, just know that, should the day every arise that you need us, we will be there, right by your side, to walk that journey with you.

Operation: Fix my palate

Emily is currently in surgery and we (Grant, my mom and I) are eagerly, nervously awaiting any news.  I am very happy to report that this morning has gone very smoothly so far.  Emily didn't seem to notice that she had not had breakfast and was in a brilliant mood!  Much laughing at all of us and her toys.  She didn't like the premeds, but fell into a deep sleep as soon as she had swallowed them.  She stirred from this sleep when we walked into the theatre and tried to move away from the anaesthetic mask, but didn't really fight it, so that was a relief.
So, now we wait...  heartbeats elavated...

3 Days to go!

This is the week of Emily's op, and while I have been quite scared up until now, I am pleased to say that the excitement phase has now kicked in!  Bizarrely, I now feel a twinge of guilt about being excited about my daughter having to undergo surgery... I do not pretend to understand myself, so please, don't you try!

So three more days and then it's all done, apart from the recovery which will take the better part of ten days.

Will keep you updated as we go.

2012 - the year of one's and two's

This year is going to jam-packed with milestones, and I can't wait! Emily Bean is growing and developing by the minute and my New Year's resolution is to keep this blog updated at least once a month (please kick my ass if I do not stick to this!).


As for the one's and two's, this year is going to be full of them (forgive me while I indulge one of my great joys, LIST MAKING):


One's:

• I have to start this list with the most important one, Emily's First Birthday!
• Following on this, her first Birthday party - Aunty Jeannie is already busy with the planning (I still feel she has missed her calling as a party planner, but that is a list for another time...)
• First teeth (we think this will be any day now, if finger-in-mouth-time is anything to go by)
• First crawling (as soon as Madame concedes to more tummy time - our ongoing reflux related battle)
• And following the above, first walking - if her other development is anything to go by, there won't be much time between crawling and walking!
• First words - and then no conversion will not include her input, she is, afterall, my daughter...
• First swimming (I made the mistake of 'plonking' her into a baby splash pool the other day, won't do that again... I think even the neighbours of the house we were at understood her dislike at that harsh introduction).
• And the one I am truly excited about (First Birthday notwithstanding) - drum roll please - FRIST NORMAL BOTTLE DRINKING! Emily's palate op is scheduled for the 2nd of Feb, and although this joy is slightly overshadowed by the 'trauma' of the op for now, our lives will not be the same once this is over and her mouth is all healed.  She has already (only just this week) had her first sippy cup drink, and now loves gulping down a few swigs of rooibos mixed with juice whenever she can.

Two's:

• Second operation - as you gathered from above, her palate closing op is coming up.  This involves stitching closed her soft and hard palates.  I will keep you updated as this day approaches and on the day - apparently, we are looking at a 2 and half hour procedure, so there will be plenty of time to make a blog entry... any distraction at that point will be welcomed!
• Holidays - these include Easter, Mother's Day, Father's Day and Christmas.  And while these will be her seconds, it will be the first time she can participate as little person as opposed to a baby cradled in mom's arms (not that those times weren't super special too - any time that she is included is super special!).
• Second bedroom (and house) - our house is on the market (HINT), and hopefully, if all goes well, she will soon have her second bedroom.
• Um...

Okay, have run out of seconds, so will just continue with news.  Emily's Dad and I had three glorious weeks of leave to spend with Emily over the Festive Season, and what a joy they were.  This has been our first proper time with her as a more interactive baby and we relished every moment (of which we had plenty, seeing has how she decided that 4.30am was a good time to wake up while we were on leave...).  Having said that, though, the time flew by, and before we knew it, it was back to work for Grant and I and back to Aunty Jeannie for the Bean (not that either her or Aunty Jeannie minded).  Our first week apart was a rather trying one.  Other than the obvious sadness at seeing her less, Emily also had two days of fever and loss of appetite, and general ill-at-easedness (look that one up in an Oxford dictionary, if you dare!) which we think was caused by her teething.  Aunty Jeannie and Nurse Netts took excellent care of her and kept her temperature under control nicely. And, thankfully, by Firday, she was all smiles again.


More than that, Emily continues to grow beautifully.  She fits nicely into her 6-12 month clothes and is starting to fill them up nicely too.  She laughs at the strangest things!  If you bend down, it's like you have just told the funniest joke, and she almost cries she laughs so much.  She also likes loud noises (as long as she is not tired!) and loves when I shout at the dogs for being naughty... like I said, strangest things.  All of these nuances continue to make every moment with her ama-zing (and every moment apart less than ideal...).
I am the luckiest mom in the world (wait, apart from my mom... hahahaha).

Here is the latest batch of craziness: