Let’s begin 2016 with a catch up.
Grab a cuppa, or a coffee; hell grab a wine. Go grab a seat and make it comfy while I bring you up to date with all things Dixie doo!
First up, the biggy. Her heart.
It was established at her initial echo at 2 days old, that Dixie has two heart abnormalities. A VSD or a hole for us non-medical folk. And pulmonary stenosis AKA a tightened/thinned heart valve.
Now as bad as these might sound, the two problems helped each other. They corrected enough that for the first year her heart looked lovely & balanced.
If the cardiologist could have predicted the likely path that Dixie’s heart would have followed, it would have been to see the hole close and at some point a possible keyhole surgery to open up the valve.
BUT. As this is Dixie, that wasn’t what was seen at a follow up echo last summer. In fact the hole had remained and the valve had opened up quite a bit by itself. Sounds good in theory but not so much in reality. And a consequence of this is my girls heart is now enlarged on the left hand side. Balanced no more 😦
Outlook this year is to check back in about four months. There is a chance she may need open heart surgery to repair the hole but I’m hoping it will close at some point itself. Or that she continues to stay well as it is.
Second. Her swallow.
Bit of a rollercoaster this was. One of my many fears was the feeding tube. I’m not even sure why but it was a big worry. And as soon as her feeding troubles were taken seriously, I had a mummy feeling that she would end up with a tube.
I couldn’t have predicted how it would come to be though! That an emergency hernia repair operation would lead to a ‘temporary’ mic-key button being placed to secure the stomach.
The surgeon wanting to remove said mic-key button three months later but Dr community asking for it to remain till her second video swallow.
And ultimately her failing the video swallow on fluid. And when I say fail I mean she wasnt safe to swallow liquid. Unfortunately both thin & thickened showed some silent aspiration and so it was deemed safer to stop all fluid via mouth. After all the button was already in place. And I didn’t want to risk fluid on her lungs.
So was it fate? Stick a gastrostomy button in Dixie, give me six months to get used to looking after it before training me to use it?? I often wonder….!!
Anyway no matter the whys and the whats. She now has a fancy little button that I use for all her fluids, meds & a calorie boost.
It’s not scary. And (hopefully) isn’t forever!
Third. Her eyes.
They were initially a few problems there. Mostly it was delayed visual maturation, meaning she wasn’t seeing what she should for her age.
Other things came up along the way. Her pupils being very small, a squint, her left eye being smaller, nystagmus. To be honest we seemed to be told a new problem every visit. And so we just glided along in limbo eye land.
Our last appointment however, was pretty damn good. And it seems the little lady is just far sighted. Again we remain under review so never say never.
Fourth. Miscellaneous health.
I thought I would band her minor ailments together. She is also being treated for reflux, constipation and eczema. And the meds help muchly.
I don’t want to sit here and list Dixie’s can’ts and her can do’s. I have to do that enough already with the professionals. I will say that her development is patchy, and that when she’s in the ‘mood’ to cooperate that it’s clear that she can do more than you think.
She’s clever. She’s stubborn. And yes she is taking her time with the stuff that this mama bear is waiting very impatiently for her to achieve. But that’s something I need to get over.
So that’s a Dixie summary wrapped up nicely in a nutshell. Hope you made it to the end 😉