Standing tall at 2 years

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!

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.