We love how
chuffed Sarah-Hope looks in this photo with her achievement of standing up on her
own. It is extra special having seen the path it took to get here.
At
one stage we were a bit concerned as Sarah-Hope seemed to have no interest in
getting onto her feet at all. If you put her down on the ground, she wouldn’t
even put her feet out – she would go straight down into the sitting position.
But suddenly, and most probably due to her cousin Katelyn’s standing, she
became motivated to get to the next stage – “up”. Due to bowed legs, some
abnormal positioning and really lax ligaments, Sarah-Hope was not very stable on
her feet which resulted in some falls but certainly didn’t put her
off trying. We would put her in gaitors and a standing frame and entertain her
while she put weight through her legs, support her body and hold her hands while she took steps but it
still seemed as though her legs were weak and far from being able to support
her in a stationery position let alone moving around.
One day,
Libby just popped up onto her feet. I think Sarah-Hope was really provoked by
this because she shouted “Baba, baba”, got onto one knee, dug her chin into the
couch and then used her that to pull herself up onto her feet. The next step was Sarah-Hope getting onto her
feet without using the ‘chin and couch’ method. She managed this by leaning
against a surface, such as a cupboard.
Sarah-Hope
would spend hours in doorways, making her way up and down the little step.
She would
sit on a step and from that position stand up. She worked on this repeatedly on
different sized steps/supports…
until the
step she would sit up from was as low as the ground. This means that she
effectively does a massive squat to get up from the ground – quite impressive
for little legs that showed no interest in bearing any weight just a few months
before!
The amazing
thing about this whole journey is that she worked out her goal, planned her
steps and executed perfectly until she had achieved what she wanted. What an
amazing gift! In fact, it has really lifted a burden off me, recognising that
while help from us and professionals will be necessary, she is determined to
achieve what she sets her mind on.
Despite this
wonderful achievement, I did feel a little nervous about her now in the
standing position – she is so much more vulnerable to falling from being higher
up on a smaller base of support. As an aside, I always admire how Rich deals
with the falls and consequent bumps on the head. He actually manages to make
putting ice on the head fun! He will put the ice on her head. Then she gets a
turn to put it on his head. Then the doll gets iced. One night I walked past
and became part of this icing ceremony (ouch it was cold!). The main thing we’ve
realised is that she is self-conscious of her falls so we need to deal with
them but in such a way as to make them (and mistakes, misjudgements, failures)
“ok” and an ordinary part of life… with the next step being to try again.
Again, Rich is brilliant at taking her back to the place where she has toppled
over and encourages her to give it a go and regain her confidence.
When Rich
started telling me that she was shifting the weight on her feet as if to take a
step I just ignored it. Until a few weeks later, on 25 January 2014, when Sarah-Hope
took 10 little steps and said “me walk”.
Wow! Her
physio said “I don’t know how she is walking on those legs of hers!”, and
neither did we… but she was, much earlier than I thought. She was so focused,
practicing her steps, getting faster, turning around. Libby took her first
steps a week or so after Sarah-Hope and Sarah-Hope picked up all sorts of tips
such as changing direction, changing the speed at which one walks etc.
It is one
thing for Sarah-Hope to maintain her balance and walk when she is alone – it’s
another thing entirely when you have a tactile little sister who is intent on
mowing you down and tackling you! It’s been amazing to see her develop skills
in this regard. The first one is to drop to the ground onto her bottom if she
sees or senses somebody moving past her in a way that threatens her balance. We
have also seen her bend over and restabilise in the squat position, “fold in
half” by putting her head to the ground and using that to break the fall,
collapse onto her bottom with her head on the ground if Libby is piling on top
of her, and smartly scoot away to avoid the incident altogether. I feel so
grateful for Libby in the development of these survival skills. With other
children, both the parents and I would generally intervene before Sarah-Hope
gets thrown over, but because Libby is also my child I allow her to ‘climb into’ Sarah-Hope a little. Rich actually spotted
Sarah-Hope giving Libby a little tackle the other night and enjoying it!
Here are
some pictures of the highlight of each day – rough and tumble with Dad!
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Communication
We were
really relieved when Sarah-Hope said her first word just before 18 months.
Since then we have done some facial massage to ease her head and neck muscles
which were quite tight due to her body adapting to it’s own system of balance.
Her whole face seemed to change expression and slowly and surely speech began
to flow. I have felt quite challenged – you wait for your child to speak… and
then when they do, you actually have to listen to them! Although I have known
she is not missing anything that is going on, I really enjoy being able to talk
to her.
On Christmas
day, Sarah-Hope said ‘no’ for the first time. She certainly indicated it before
with a little grunt here and there, but it took her turning two to actually get
the word. I think we’re rather lucky as Libby had it at 16 months. Now I have
two girls saying not just “no”, but “no no no no no no no no”… wondering where
they got that from?!
Growing
Sarah-Hope
grew beautifully during this time, and I am sure that having a little sister
starting solids helped. I did baby-led weaning with Libby so she was self
feeding from 6 months old which I think encouraged Sarah-Hope. Previously she
would only be spoon fed – but she started picking up food and feeding herself.
In terms of
drinking we would offer her water from one of our glasses. She can drink from a
straw, which we know will be a brilliant long term option for her, but it isn’t
her preference.
Initially, I was more concerned about her actually registering
thirst and drinking than doing it independently as the tube feeding means that
she can be getting enough liquid but in the long term she will need to take
fluid in orally. The trouble with a bottle is that although she could grasp the
handle with her hand and get her mouth to it if she turns her head to the side,
a bottle was usually too heavy for her to lift. I was delighted when she
starting playing with a plastic tea set. She could sip from a little cup as the
amount of water inside didn’t make the cup too heavy… she was drinking
independently, hooray!
What’s a platelet transfusion again?!
On 15
January 2014, it was a year since Sarah-Hope’s last platelet transfusion. What
a milestone! We were optimistic about the interval between her platelet
transfusions continuing to stretch incrementally but are amazed and so grateful
for the wonderful change in lifestyle it has been not testing blood or
transfusing on a weekly basis. Sarah-Hope’s blood test last November revealed a
platelet count of 99 which is by far the highest count she’s had. We have
watched her platelets dip when she’s been ill, but bounce up again as she’s recovered.
Her bone marrow is definitely healthier and producing platelets, and the
platelets she has are working well - although her count is still on the lower
side, she has “bruised well” which has been a relief now that she’s on the move
and up on her feet!
Trike adaption
A special family friend adapted the handle bars of this trike so that
Sarah-Hope can enjoy holding on and steering. She LOVES it! It was a great
experience as we came up with an original idea but it didn’t work – then spent
quite a lot of time with her on the trike and she helped us come up with the
current arrangement. It is so wonderful to have her in a trike that any kid
would enjoy with a simple adaption to make up for her lack of arm reach. Here
are some pics of her enjoying her trike and life in general.
