Reflecting on 2.5 years of Sarah-Hope’s life

Sarah-Hope’s cow’s milk protein allergy… sickness and it’s impact on development

It’s been an interesting year. Sarah-Hope, having started the year with her brilliant walking achievements, also started on a new milk formula. About half the kids with Sarah-Hope’s condition have a cow’s milk protein allergy. As a precaution, Sarah-Hope was moved onto a soya formula as an infant because the allergy could impact platelet levels etc. We wanted to support her growth by giving her more calories. While PediaSure is cow’s milk based, it is lactose free. We started giving her one feed a day and she seemed to tolerate it well. We then doubled the amount of PediaSure she was getting. She seemed fine, but she did seem to be going to the doctor every couple of weeks and put onto antibiotics for various infections. Three months later, Sarah-Hope landed up in hospital. A scope revealed that her small intestine was so inflamed it was flat and couldn’t absorb any food, she had ulcers all the way up her rectum and colon – she had severe colitis. She was fed TPN by an IV line which gave her the nutrition she needed while her gut rested for a few days. We challenged her gut again and she didn’t tolerate feeds so went back into theatre for a broviac insertion so we had longer term access to an IV line for feeding. After three weeks, she went home back on her soya formula and ravenous as her inflamed gut was being treated with steroids. 

I was amazed by Sarah-Hope. Now a busy toddler, I had no idea how she would tolerate being confined to a cot for weeks on end. I remembered those platelet transfusion days during her first year of life – but babies are so much more tolerant! What I underestimated was having the experience of being able to talk her through it. She understood what was going on. She got into a whole new routine – when she saw the nurse walk in for observations, she put her toe out knowing exactly what to expect.

I ‘trained’ her to wait for me in the cot while I went out to get some coffee. We organised the drips and lines such that she could sit on me next to the cot and read books, look at photos, draw etc. We had a little midday lie down with the curtains closed and the lights off. It was logistically challenging to juggle that and looking after Libby (thank you family and friends for all your help!) who was still being breastfed. But it was in some ways really easy just focusing on caring for Sarah-Hope. Much more so than constantly carrying a sick child around all day, while still trying to care for the other one and do the usual chores at home. Because we spoke so much, her language developed beautifully while she was in hospital which was great.

A fresh wave of reality – sickness and dependence

Even though Sarah-Hope was sick, I was thriving. I get into this ‘caring for sick child’ mode. I think it is because when we prepared for Sarah-Hope’s birth, we were expecting her to be sick and dying – and I had such a sense of the privilege of caring for her and was determined to make the most of each hour or day of life. Since that was my starting point and expectation for her life, I don’t find it tough to go back there. I actually love the simplicity of the moment, the focus on love and care and celebration. But now that we are parents of two children who we expect to have full lives ahead of them, sickness comes at the expense of developing for the future. I quite enjoy putting all my development and progress goals aside and focussing on her – but it does come at a price. About five weeks after Sarah-Hope was discharged from hospital, she got sick again. Now knowing what the problem was, we could manage it at home (stomach tube is such a bonus!). But it was another three and a half weeks of carrying Sarah-Hope around, in which she never stood up or took a step, appointments were cancelled, Libby getting less attention etc. Sickness, medication and its side effects, juggling stopping for the sick child while life still needs to continue for the next child… these challenges seem new to me. When I consider the losses we face with Sarah-Hope’s challenges, I had counted those related to disability. I hadn’t factored sickness into her future. This hospital incident was the first time in her life that the doctor ever said the words ‘this immune system of hers’ to me – even though she had a difficult start to life, I had not really put her in the ‘low immune system’ camp in my mind (it was probably too much for me to deal with at the time). This experience may be isolated to these 6 months – or it might be a more regular part of our future as a family. We are not far enough down the road to tell yet. But I felt as though I needed to grieve this new reality… that because Sarah-Hope’s bone marrow is not 100% healthy, it means that she doesn’t have the immune system other kids have. She is more vulnerable than others. Sickness could be a more regular part of our family life than I thought. That period of denial is over.

At about the same time, Sarah-Hope turned 30 months. This felt really significant – she was two and a half! I have my hands full with my two and a half year old and my one and half year old. But there is more to it than that. Yes, sickness means that dependence increases. But also, most two and a half year olds are way more independent than Sarah-Hope is right now. Libby is growing up fast. So is Sarah-Hope – but realistically, I will be doing certain things for Sarah-Hope for a long time still. Some things are not going to look much different in six months time. Some things are not just a phase, a stage, something to push through. It feels like another wave of grieving and accepting is necessary. Every mom does everything for babies and young toddlers – but right now it is really dawning on me that some things are not going to get easier.

Sarah-Hope’s ‘beautiful play’

One of the most heart-warming things I have seen this year is Sarah-Hope start to really play. A friend of mine, who is an OT, said to me “I am blown away by Sarah-Hope and how beautifully she plays”. The nurturing side of Sarah-Hope has really come out with her dolls – she feeds (including breastfeeding!), changes nappies, carries, pushes them around in the pram, puts them to sleep… it is adorable. 

She also chats away on the phone, and does plenty of saying ‘bye’ and ‘hi’ and ‘see you later’, opening and closing doors and finding little houses for herself in different rooms, cupboards and under tables etc. She absolutely loves playing with dolls houses, and manipulates the toys really well. Two of her tricks include moving a toy from one hand into her mouth and then into her other hand and using her cheek to help reposition something in her hand. And as the control of her body increases, she can get herself into better positions to enable reach. 

Sarah-Hope and Libby can also play together really well. It is so sweet to see them high five, low five, rough and tumble with Dad. Libby is very active and gives Sarah-Hope all sorts of fun exploration ideas to try. Sarah-Hope is also often amused by her sister, and will laugh saying “baba funny!” She is, however, aware of Libby’s movements and often prefers to play on the kitchen counter top when Libby is running around so that she doesn’t interfere with her careful, constructive activities. As a result, I loved hearing her say “me miss baba” when she was in hospital. On another occasion, Libby fetched something for Sarah-Hope who exclaimed “baba help me!” How profound and apt for the future.

Fun and Frustration

Sarah-Hope is measured, focused, a rule keeper (she lets her sister have it if she sees her breaking the rules!) and is developing into a happy child. How wonderful to hear her say “me happy!” Here are some more pictures of her at her happiest:

Sarah-Hope, as any two year old would be, is experiencing a lot of emotion. The frustration of being misunderstood or not being able to do something she wants is shared by all toddlers. But hers are beginning to increase as her short arms mean certain tasks that she wants to do will always be more difficult.  One of her frustrations is trying to load a spoon or fork – and keep the food on it until it gets to her mouth.

Sometimes she gets so frustrated that she stops eating altogether, which is obviously not ideal. I have been teaching her to ask for help (and realise that I then need to be ready to give it to her!). And I have also been trying to coach her in controlling her temper – it is the balance between validating her feelings of frustration but also requiring her to make good choices regarding behaviour.

Sarah-Hope will be three years old by the end of the year. I am enjoying the innocence and freedom with which she lives in her body. It is beautiful. She has not yet made the connection that she has short arms and that is different to others, but I expect that to come soon. I am hoping that the confidence, creativity and liberty I see in her at home will continue to mark the way she conducts herself.

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.