It is so nice to finally see Pipers face without a nasogastric tube, we were so incredibly happy when the PEG (tube into the stomach) was finally inserted, although I fear our actions may have put Piper back once again. I realise the PEG is required
for Pipers feeding, while it also eliminates reinserting a tube down Pipers throat each time she successfully pulls it out! What I hadn't counted on was the set backs! Piper spends her days lying on her back staring at the ceiling, where placed she will remain
and rarely try's to reach for anything more than a few centimetres away. It's breaking my heart to see Piper unable to roll around the floor, as Piper is still healing this would certainly deter her from wanting to roll onto her stomach, although my
concern is Piper has again lost tone! I hold our little one in an upright position, her feet curve in and little legs remain floppy, I think back to just a short time ago of Piper supported in a stander, every so often, if only for a second, her little
bottom would push out and with the support of splints Piper would take her weight! We now have Piper's second set of leg supports, hinged AFO's and we were more than excited to receive them in readiness for a walker! I only pray Piper will regain the strength
to use them.
Today piper was placed and strapped into a corner chair during Physio, I was pleased to see Piper able to tolerate this position for well over half an hour. ❤
It seems
once relaxed or ready to sleep Piper now loses the ability to swallow her secretions, this makes the chest appear raspy, Piper will then choke and struggle to cough the excess fluid up and out! causing great strain, and a fight for breath. The
introduction of a nebuliser has certainly helped to calm things down and I wish we had invested in a machine of our own two years ago!
Paired with suction to assist Piper's struggles during the night, would indeed be of great benefit and assistance.
Daily seizures continue, of course some days are much better than others, although I wonder if the diet has improved our situation, if anything we have noted a new mix of seizures, the pattern may change although the quantity remains
relatively the same.
Last night while in the arms of Aunty Christal Piper jumped as if a great fright, her head flopped forward losing all tone as she went into a seizure. had Piper have been able to stand, I'm sure
we would have witnessed our first drop seizure!
The concern with this type of sudden attack is not only the activity inside the brain and what it may be doing but the fall itself.
Piper remains on the ketogenic
diet and will be reassessed at the end of July, at this time we will need to consider if we are to continue.
I feel Piper seems more alert since the diet, although I guess I can not be a hundred percent sure this wouldn't have happened anyway,
I'm frightened if we stop we may lose a little bit of Piper and if continued we may hinder her development further, for I'm certain had I not have forced the required quantities and types of food onto Piper she may still be enjoying her purée foods,
she would be strengthening and developing those muscles ready for speech, she would not be reliant on gravity feeds alone. Piper could not drink, and now she can no longer eat!
I couldn't understand before, and now
I just wish we could be back at that stage, when at least Piper could taste and feel the texture in her mouth, it's as though every decision we make, every corner there's another challenge that awaits.
Hoping July and all it's
appointments bring something a little more positive to report. 💜 love & light! Our Purple Princess xx