Christmas is Coming

Wow – what a busy week.  Amber had an appointment at Child Health for a routine check up with her Dietician but it also turned out to be an opportunity to touch base with her paediatrician, outreach Nurse, Occupational Therapist  & Hospice nurse.  We’re very fortunate to have all these people involved with her care.  I’ve been feeling a bit nervous with Christmas approaching & her regression as I’m worried she may have a “turn” or go downhill very suddenly when a crucial part of our team is unavailable due to the holidays.

She had the usual weigh-in & while disappointing it came as no surprise that she has lost 500gms in what has been a relatively short period of time.  It is obvious that she is weaker & losing muscle tone as her arms & legs are looking skinnier.  We have a little “bobble-head” doll as she is finding it more difficult to hold her head up.  I’ve had to admit to myself in the last week that she can no longer sit independently.  We didn’t quite make it to the 18 month mark. 

The game plan is that Amber will be weighed again on Thursday 27^th Dec & if she has not maintained her weight we will insert the nasal gastric tube.  A big step.  She will still have the experience of feeding orally but the tube be there for top up feeds & be a safety net for when she loses her appetite due to whatever bug she may pick up.

On a more positive note, she has had a happy week enjoying unusually extended periods of time lying independently on her mat, making cute “talking” noises to herself & just observing the action around her.  She is still doing some great reaching with her arms & kicking her legs when happy.

Amber - Nov 2012.  I love the highlights in her eyes in these
photos even though they're slightly melancholic.

 I have taken inspiration from a book titled “Bereaved Mother’s Heart” written by an Australian woman who lost her pre-school age son to a rare enzyme disorder (Cox’s Disease).  Her son was also hypotonic like an NPA child but when he could no longer do things for himself (eg walking) his mother would still give him the experience by doing it for him.  She would take his arms & walk him around the house everyday.  I’ve taken her lead & when Amber is not too tired I will take her weight & put her into a crawling position holding her head up so she can look around.  I will put my hand under her bottom & the other around her torso & hold her in a standing position even though she will put no weight on her feet.  I will roll her from side to side when she is too tired to do it herself.  It may be only for limited periods of time but she seems to enjoy a different perspective from being on her back all the time.  Her “normal” has changed but there is still enjoyment in life for her.