She’s fine. Really, really fine. I’ve been nervous about blogging because I’m convinced that as I soon as I say she’s ok, she’ll take a turn for the worse. But we have had 4 relatively straightforward weeks on maintenance, with no infections, reduced medications (see later for details), a huge increase in strength and , most importantly, seeing the real Anna return. Her character and personality have always been there during the treatments but at times so muted and subdued that I wanted to weep.
This week, Anna has been again to Nursery (thank you to everyone there for making it so positive for her), mini music makers (ditto, Tracy and other mmm goers) and spent time at the Barnardos centre. We couldn’t even of thought about all of that 4 weeks ago. It’s exciting seeing this progress and trying to get the right balance between picking up a ‘normal’ life again, to an extent, but also not exhausting Anna or putting her at risk.
Her medications for the next year and a half follow a 3 monthly pattern. Over that 3 month period, she has one intrathecal (methotrexate injected into spine and brain fluid) under general anaesthetic, vincristin once a month at the hospital and mercatopurin given once daily at home (all chemotherapy). Some of you will remember from previous posts that vincristin is the one we have had so many concerns about as a possible side effect for someone in Anna’s position (very weak muscles from SMA) could be paralysis. However, we are trying it with half doses, then 3/4 doses and watching carefully. No adverse effects yet.
Also at home, she continues with her septrin (antibiotic) every single monday/tuesday (2 doses a day), and a ‘pulse’ of dexamethasone steroids once a month (2 doses a day for 5 days). When taking the steroids she always has another antibiotic (aciclovir 4 times daily) to defend against shingles and also takes omeprezan, a stomach protector, once a day . She continues to have overnight feeds and we are also giving her additional fluid at night – both of these through her feeding pump. She takes almost all her medicines through her ng tube. There are just too many spoonfuls of unpleasant tasting medicine for a little girl.
We continue going to Sick kids (either ward 2 or clinic) fortnightly either for vincristin or to take bloods. Doses of all medications are constantly reviewed. She will continue at times to be neutropenic (open to infection) but generally we should have fewer infections.
Along side all of this, we continue to work with Anna and her physiotherapist/OT team. We honestly have no idea of what she may or may not be capable of in terms of walking and mobility but we hope for the best and plan for the worst. Realistically, at this point, we are looking at her gaining enough strength to be able to assist with transfers. That means Anna being able to move from a wheelchair (with support), stand (with support), take a few steps (with support) and be able to move on to something else (with support).
Over the last year and a half we have amassed a variety of walking/mobility aids.
We started with our phoenix buggy. We got this from the SMART centre in Edinburgh before we had any definite diagnosis for Anna’s spinal muscular atrophy. The greatest benefit at the time was it came with a blue badge, allowing us to park almost at will anywhere we chose. Anyone familiar with parking in Edinburgh will appreciate that this badge is like gold!
Next, when Anna was still able to take some steps, we got a rifton walker. Anna had already tried a walking frame but it was useless because she didn’t have any strength in her arms either. So if her legs gave way (which they did frequently), rather than using the walker to steady herself, it was simply another object for her face to hit on the way down. So instead, this walker is designed to give her extra support through a pelvic sling. Unfortunately it arrived when she had become really weak, after she had been diagnosed with leukaemia so it sits halfway up our stairs, a beautiful bright pink colour, patiently waiting for Anna to regain enough strength to give it a go.
Next came her manual wheelchair, This was one of the biggest hurdles for me as it is so ‘wheelchair’ looking. But I’ve learnt to accept that for Anna, this is necessary. The first time she got it, if you were reading the blog at that point, was her very first taste of independent movement. She still doesn’t have enough strength in her arms to push it so is fairly restricted when in it. However, it means we don’t have to carry her, which was becoming a real issue for us all.
Next was our stairclimber. Although we have an agreement from our local authority for a thru floor lift, for a number of reasons it is not an option in this house at the moment. So instead we use this device which is like a small fork lift truck that goes up stairs, with Anna securely strapped in. Anna loves it, Nathan wishes he could go in it (sometimes I let him!)and it is a much better option for my back.
And finally, my absolute favourite and what has changed Anna’s world, is this small indoor power chair. She and I have loved the thrill over the last week of her moving freely around the downstairs part of the house at will. She played hide and seek for an hour with Nathan, something they’ve never been able to do. She was even able to storm out of the room (well, roll out on castors) when trying to express her displeasure.
A dilemma we have had for the past year or so is trying to encourage her walking and supported movement and not allowing her to become wheelchair bound at such an early age, feeling that she might be reluctant to even try walking. However, after seeing her for just a week using an electric chair, I know firmly where I now stand. Anna’s development, play and learning are all restricted unless we give her the opportunity to move freely. We do encourage her to stand and move but not all day every day, so for a large part of the day she is still sitting in a wheelchair or some other seat anyway (reminds me I haven’t told you about her sitting chair, high chair or bench…see her below in one of her chairs). The excitement and desire to explore, like any other child, will drive her to try to walk and for that reason I now firmly believe we should be trying to get an electric wheelchair for Anna that moves all ways – that is back front, sides and most importantly up and down. That will put Anna in control of what she can do without the restrictions she has from her manual and small power chair. The kind of things I’m talking about are snapdragon (see here ) which cost as much as a large car. My intention is that we have Anna in one of these by the time she starts school in Aug 2013. I may be doing some fundraising over the next year…