Happy Birthday

DSC_0210The girls both reached milestones yesterday: EB bought her first lipstick (a milestone in any girl’s life. The colour is a good deal more flattering than anything in my teenage makeup bag – it was the Eighties). And R turned 10.

R was excited about her birthday but the planned party has been postponed for the time being because she is still so weak. So we celebrated quietly. We had bunting and paper chains (I love bunting and paper chains).  EB made and distributed cinema tickets for a movie premier in our living room. R slept through most of it.

I’ve been neglecting the blog lately.  I’ve been waiting for things to improve (or even just stabilise).  They haven’t but I don’t think that I can let R’s birthday pass without posting an update .

It started with tonsillitis. The tonsillitis triggered seizures.  These seizures required repeated doses of emergency medication.  The medication put her repeatedly into respiratory distress: this is life threatening. The risks were made only too clear to us by the anxiety shown by the paramedics, nurses and medical staff who treated her.

The doctors tried a different tack.  A feeding tube was inserted via her nose into her stomach. The ketogenic diet was now to be given solely as a milk feed via this tube.  This would allow greater control.  The seizures stopped and it was decided that R should be scheduled urgently for surgery for a permanent tube which would deliver the feed (and medicines) directly to her stomach (a PEG).

Then the diarrhoea started.  Terrible diarrhoea. I have never seen so much poo.  Oceans of the stuff.  The doctors suspected the milk feed.  The feed was modified: dairy-free, less fat, less MCT oil. The diarrhoea continued.  Finally, on the Friday evening, after more than a week of diarrhoea and with her surgery scheduled for Monday morning, she was diagnosed with Colostrom Difficile (C Diff ).

I’d like to be able to say that the C Diff was treated successfully and it was happy ever after.  But that’s not how it has turned out.  Thankfully, R’s surgery went ahead regardless (and went well).  Getting R well again has proven more difficult.  At one point that week, with R lying unrousable, and weak from vomitting and diarrhoea, I genuinely thought that we might lose her.  She pulled through – thank God – but after two courses of antibiotics she’s still not free from the C Diff.  She is worn out.

So the birthday party has had to be postponed but we are hoping that she might be well enough to celebrate properly soon.

Happy Birthday, my lovely R. Here’s to a better year.

 

 

Thinner

Tonight, as every night, I cuddled with R as she dropped off to sleep.  Cuddling her, I could feel her sharp little shoulder blades dig in to me; her sharp little elbows too.  R is getting thin.

Young Lofflers

Image Credit: Mark Williamson, Fochabers

It wasn’t always like this.  R used to be quite chubby.  As a toddler, her jeans struggled to contain her little belly. Small and chubby, she was very cute. For several years she grew steadily along the 2nd centile on the growth charts for  height and weight.  Small, but still within the normal range.  Recently, she has fallen off the charts for both. In the last 3 months she has lost more than 1kg and she is still losing weight (this is equivalent to my losing half a stone, only, of course, that I am not supposed to be growing).

At her neurology appointment on Thursday, a PEG was mooted once again.  For readers unfamiliar with such things, PEG stands for Percunateous Endoscopic Gastrostomy. This is a feeding tube which is inserted directly into the tummy.  Food, fluid and medications can all be administered through the tube. The subject was initially broached before Christmas.  R had all but stopped taking her medicines.  We had tried liquid forms, tablets and granules.  She was refusing them all.  This made her unwell and the more unwell she felt, the more she resisted taking her medications.  Her neurologist mentioned  a PEG.  He said that, in his experience, girls with Rett sometimes simply stopped eating.  A PEG would allow the medication to be administered and could be used to supplement or replace food or fluids should that become necessary.  (This last is important.  There is an additional concern that R’s fluid intake may be insufficient.)

Having a PEG fitted is a big step to take.  According to CEN* (the National Managed Clinical Network for Children with Exceptional Healthcare Needs) criteria, the simple insertion of a feeding tube would take R from the category of complex to exceptional healthcare needs overnight.  For many healthcare workers, the insertion of a PEG is just another routine intervention. It’s not for a parent: feeding your child is a fundamental part of being a parent. (Such is the impact of tube feeding on parents, CEN have developed educational resources to help healthcare workers understand how this affects families). I’m not sure that I’m quite ready for the increased medicalisation.  G definitely isn’t.

Something does need to be done.  At dinner tonight she ate no more than a bite of roll, which she let dissolve in her mouth rather than chew.  Her neurologist is trying a different medication, in the hope that her loss of appetite is due to the Topiramate which she has been on since the start of the year.  This requires R to be weaned off the Topiramate first.  Meantime, R’s still getting thinner.

 

*Declaration:  R is pretty much one of the faces of CEN and we are pictured on the home page.  Don’t say that you haven’t been warned.