Humbling set backs and cautious planning for the future

Sarah-Hope was knocked flat again at the end of June. We assumed her gut had flared up as every time she has been so flat diarrhea has followed. Thankfully it was only the Adeno virus and even though she spent three days (not nights) in hospital receiving IV fluids to give her gut a break, she went back on the infant formula Neocate for nutritional support and slowly regained strength. It was interesting being back in hospital with a 3.5 year old. For the first time, Sarah-Hope said ‘I have a sore tummy’. Last December she would just ask to be picked up but this time she could talk more about what was happening with her which was great.

But it still took two months to recover. One month for her to stand up, and another before she would voluntarily walk during play. Knowing more of what to expect, it wasn’t as difficult as before, but these periods of ill health are so humbling. How I love to plan my future – but when health is fragile, the fulfilment experienced through executing my plans for my life is a luxury I don’t presume upon.

However, a couple of months later the gastroenterologist followed up with us. Since Sarah-Hope was experiencing significant periods of health inbetween her episodes, he felt less inclined to say that she had a chronic illness. I am encouraged by that assessment at this point of time. But I don’t think I will believe it entirely for a while! As the paediatrician said to me a year ago, sometimes only time provides the answer. But suspicions aside, I do have much to be grateful for! When I think of how overwhelmed I was a year ago, I really do need to acknowledge the kindness and mercy of God in Sarah-Hope’s current health.

The reality of a healthy child for the last few months, though, has meant that I no longer am waiting for her to get sick again. I actually expect her to be healthy – amazing! And so for the first time we are considering signing the girls up for a couple of days of preschool per week in 2016. It feels like a good next step. I adore spending time with the girls but I feel that their regular exposure to older, more independent kids would provide some good stimulation for them which I can’t provide.

Sarah-Hope, now four years old, has been accepted and cherished in our home. An interesting journey is now beginning – how to help her adapt so that she can be included and contribute to the community in line with her potential. This will require some real thought – because we have not actively adapted the home environment to promote independence yet. But it's coming.

Tears of frustration and joy

From frustration to acceptance

Currently, Sarah-Hope is in good health. I think that health means more to me than answers! That period of bad health was a blur. Sarah-Hope’s behaviour was so challenging – but it was difficult to know whether she was being totally defiant, or if she was just unwell, or if her frustrations were typical of a three year old girl– especially one who is making sense of the fact that she has little arms. “I CAN’T REACH!”, she would shout. “IT’S EASY FOR YOU!” But a couple of months on she seems to be in a space of acceptance. I asked her to close the door (I meant for her to push it closed), but she calmly said “no, I have little hands”. And so we asked Libby to do it and there was no fuss at all. “Please pass this to me, Mum”. She has also told Rich that when she is older her arms are going to grow and her hands will be able to touch each other. That made Rich nearly cry.

Tears of joy

For the first time, I feel as if I am seeing some fruit of our parenting labours. Sarah-Hope is better at saying thank you and please and in a decent tone too. This has been really important for me – because she won’t be able to do everything for herself, Sarah-Hope must learn to make valid requests with proper respect to get things done through and with other people. Her physio reminds us that the ultimate goal is collaborative partnership – not independence. So I am delighted that her manners are improving – admittedly I benefit the most from this!

Sarah-Hope is singing! For the second part of 2014 she was going to a music class which she enjoyed but never showed any signs of participation despite being slightly older than the other kids in the class. And then in January this year, she suddenly started putting on her own little music classes for her dolls and animals! She switched on her little toy computer, played a song, shook a rattle, and lined up all her stuffed friends to join in the fun. To hear a child laugh, play and sing is a beautiful thing. So songs and rhymes are becoming firm favourites as well as these special music making times.

Sarah-Hope’s imaginary play is stunning. In many ways it is a relief – she is far less frustrated than when she is playing with physical toys which she may struggle to manage depending on their weight and shape. Here she is free to pick up and hold her babies, pets and friends… and so this may result in her having greater imaginary play than she might have with a full working body... What a great outcome! Sarah-Hope loves her little cousin, Jessica Rose Whyte.

This year Sarah-Hope has also taken on some water physio classes. She is always slow to get into the water. She loves the feeling of being splashed on her back but I think that since she can’t wipe water off her eyes and most of her face she finds her defencelessness rather threatening. We have gone from taking most of the session to get into the pool but are making progress. The idea that she gets to have toys in the pool is very exciting to her. We would love her to learn to swim at some point but are just working on her relationship with water for now, keen to build a solid foundation of love for the water.

Health challenges and new perspectives

Another week in hospital

The last blog post was almost five months ago in October, with a beautiful picture of Sarah-Hope looking healthy and happy. A lot has happened since then.  We went away for a weekend with some friends mid-November and Sarah-Hope was very clingy. I assumed it was the big crowd and was a little put out at having to host while holding a child all weekend long but we had fun anyway. By Monday morning she was totally pap. I wondered what virus was knocking her but nothing was obviously wrong when the doctor examined her the next day. Later, diarrhea started and continued in bizarre form.She seemed to be up and down and ten days later we put her back on steroids and Neocate formula. I slowed the feeding right down and fed her 50ml of milk or Ceralyte every hour or so but it was agonising as we could put it in but it just came out. By the end of the weekend I knew she was really dehydrated despite us trying to manage her fluid and milk intake via the stomach tube and I got all our things ready as I knew she needed to be admitted to hospital. Despite now getting IV steroids she was still pap for another four days (her third birthday included). She underwent a number of tests with no bugs / viruses / allergies coming up. This led the paediatrician to consider whether the diarrhea wasn’t rather triggered by something related to the immune system, perhaps an autoimmune condition such as Crohn’s disease. Her faecal calprotectin levels were ‘impressively high’ (>600, when <50 is the norm) meaning that her gut was significantly inflamed. Sarah-Hope was started on a formula called Modulen IBD (which is for Crohn’s disease) which is used to treat inflammation in the bowel. It seemed like quite a risk at the time but if it didn’t work she was going to have to have total gut rest with IV feeding as she was showing no signs of improvement. Thankfully the Modulen worked and we were able to leave hospital three days later. She had bounced back, her appetite increasing and behaviour typically difficult after having steroids pumped into her. The feeding was very time consuming (having to feed her 10ml of milk every 10 minutes!) but we were so exhausted from that week in hospital that we were keen to get home no matter what we needed to do! Sarah-Hope was also desperate to get out of hospital and the day we got out instructed us to take her out to the park, to her Oupa’s house, into the swimming pool… she was on a rampage and ready to recover! Two days later we had a belated birthday party for her and she seemed in good form.

Two months to recover

We were grateful that the Modulen trial seemed to be working, but that came with a whole lot of other concerns. Before, whenever Sarah-Hope had been sick we would lock down for a little while and then re-emerge ready to get on with our lives. But what did it mean if you had an autoimmune condition? Something which could flare up at any time? What are one’s expectations of health in that situation? Can you actually make plans for your life if your health is this fragile? Although the formula for Crohn’s disease was working for her, did this mean that she actually had Crohn’s disease - and if she did what did this mean for her and us as a family? Not knowing exactly what was causing her gut issues was quite unempowering.

As Sarah-Hope settled back home, feeding got more and more difficult. She was now off steroids but very emotional. She would shout at me, “I DON’T WANT FOOD!” Mealtimes were really tricky. I used to prepare meals ahead of time but I just had to be available to find out what she wanted and cook it for her in that moment. The choices she made were generally starchy and plain, what you might expect someone with a sore tummy to choose to eat. One day it would be a kilogram of marrows, the next day pumpkin, the next day five bowls of oats, the next day pasta. I took her into the shops and asked her what she wanted (unheard of in our family!) and then just hoped that she would remember her options.

Libby followed suit. She demanded to stay in her pyjamas. She said she didn’t want to eat. She also wanted to be held and carried everywhere. In the next two months I took her to the doctor twice to get her checked out as she was also being very demanding but apart from some iron replacement meds it just seemed to be attention seeking. It startled me how affected she was by Sarah-Hope’s health and behaviour now that she was 22 months old (she was 14 months old when Sarah-Hope spent three weeks in hospital earlier in the year but she seemed far less aware of what was going on then).

We went on holiday late. We came home early. It was far too stressful dealing with this in a group setting and disturbing everyone else’s peace. There were maybe a handful of moments where the kids relaxed and played. It got slightly better such that we braved having one parent on two children and letting the other get some rest or fun time. But it didn’t seem worth using leave for a time when the kids were such hard work! We hoped that by Easter we could have a holiday and they would be well enough so that we could all have some rest!

Because it took so long for Sarah-Hope’s gut to recover, it was difficult to know whether she was getting better or not. She did have a scope (on Libby’s birthday) but that didn’t come back with too many answers. A gastroenterologist looked at the results along with other reports and has suggested further testing that could be done should her gut flare up again. I think most of these tests are for rare immune system related causes of diarrhea. On the positive side, the gastroenterologist didn’t think that Sarah-Hope had Crohn’s disease based on the info at the time but said she could be given the generalised diagnosis of inflammatory bowel disease.

As her gut has improved, we have slowly weaned her off modulen. This is now the first time that she isn’t getting milk formula through her stomach tube. It is amazing to see how much she is eating now that she isn’t getting any milk! Her appetite and energy are unrecognisable. I wouldn’t have known any different last year, and she wouldn’t have been able to describe it for me (which is why the emotions and tantrums re food were so difficult)… but seeing Sarah-Hope just suddenly decide that she wants to crawl (yes, crawl!!) and walk up the stairs by herself multiple times in the day is incredible – the energy but also the independent moves! What a relief. I was feeling so tied down with carrying and lifting two girls all day long but can see that this will change slowly. Sarah-Hope is now into climbing… in the car, onto the couch… she wants to do it all. It means as she’s doing more herself I am able to do less for her (and some other things for her instead)… hooray! This coupled with Libby turning two, and the communication between the little sisters radically improving… they are talking to each other and playing, laughing, arguing etc… I am no longer the only centre… they relate and that has released me slightly.

Parental tears and perspective

I have no hesitation saying that the three months with Sarah-Hope’s inflamed gut were the most difficult months I’ve experienced as a mother. As the paediatrician was putting in Sarah-Hope’s drip, she was shouting and crying “Take it out, I don’t want it, Doctor Paul, I don’t want it!” If I had had the space to have a tantrum about inflammatory bowel disease (IBD), I can assure you I would have screamed “I DON’T WANT THIS!” and run a mile! I have found it interesting comparing the more recent process of diagnosis of IBD to three years ago when Sarah-Hope’s underlying condition of TAR syndrome was diagnosed after birth. Back then, what seemed really important was acceptance – accepting that even though all the odds were stacked against her, God had clearly given Sarah-Hope life. Even if she was differently abled, we were to accept her as He accepts us. Because of the dramatic circumstances around her birth, it was so clear to us that God had ordained for her to live and we were confident that He had a purpose for her life, which it was a privilege to be a part of. But, I have found accepting Sarah-Hope’s diagnosis of IBD far more difficult. You can be differently abled and full of life – but IBD robs you of life. It is described as being lifelong, debilitating and painful. And the effects of it are challenging socially, which robs us of our very support systems and the joy we find in our relationships. It feels like a spiritual battle. And I have to remind myself of how I was tempted to feel intimidated about all the possible outcomes while pregnant with Sarah-Hope – yet we mercifully escaped many of the potential scenarios, some we faced for a short while and overcame by God’s grace, and others we have grown into living with. And so while I shouldn’t be in denial about the realities of Sarah-Hope facing chronic illness, I shouldn’t presume what that will look like either. I have been gaining greater eternal perspective – appreciating the reality that as Christians the goal of this life is not one of comfort, but of training and preparation for the next. We really shouldn’t be surprised when we face difficult times (or presume that we’ve been through enough and so we are immune from further challenges!) – but rather joyfully anticipate heaven, where there will be no more tears or suffering. As Rob Parsons quotes, ‘there are other worlds to sing in’. How beautiful is our Hope!

What was really good about those months of IBD is that it really brought me to my end. It was the first time I’ve admitted “this is difficult”.  It made me realise how much I need to lament before God and process my feelings about what is going on. I am a planner and prefer to get on with believing what is true and doing what needs to be done – but I am learning that I need to set apart time to acknowledge and process my emotions. If I don’t, my emotions begin to drive me and I can be tempted to feel overwhelmed or sorry for myself and numerous other undesirable behaviours! I am slowly experiencing a shift from living in a type of survival mode which really relies on my resources to manage my situation to a life of faith in God and His provision for every moment. I have felt the resultant shift to spiritually thriving. My kids needed me so much during those months and were in my arms continually – and that taught me to use every free minute, be present today and be grateful for the smallest things (such as being healthy enough to have the energy to go a park together), to find rest in God and not my circumstances, to know the life and love of Christ as my life is given to others. What a joy it is to live in daily trusting dependence on God... as unnatural as it is!

Health and happiness

What a great few months Sarah-Hope has had. She has been healthy and the increase in appetite and movement has been wonderful to see, not to mention well-timed given that we enjoyed a holiday in the UK and USA during this period!

With Sarah-Hope having no medical set backs in the last couple of months, she has become more adventurous and keen to explore. She has orthotics in her shoes to support her feet and a compression suit (her ‘speedsuit’ as we call it!). This SDO suit gives her core support and in turn frees her movement up which then become more unconscious enabling her to do much more. 

From a fine motor development and imaginary play perspective, this beautiful doll’s house has been an absolute bonus. Sarah-Hope loves playing mum to the tiny baba and doing housework too.

She also loves being pregnant like Aunty Carol. 

Reflecting on the last post when I was feeling overwhelmed by Sarah-Hope’s dependence on me, something has shifted in the last few months… the “I do it self”. This is encouraging, and I’m pretty sure that she will do everything herself when she’s ready. Sarah-Hope amazed me the other day. Her hands are too small to pull the lever on a spray bottle but she worked out this brilliant trick of pushing the bottle down on the counter top – I wouldn’t have thought of that!

Next time I’ll post on the blog, she is likely to have turned three! Can’t believe all that has happened since 2011. Looking forward to celebrating:)

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.