Rewinding back to the beginning….
Back home from one of those massive RCH visits, where a standard routine check turned into a long day of medial procedures, tests and tears. When the doctor told us we have to start from scratch with Chiara’s clubfoot treatment, my heart skipped a beat… and kept on skipping after listening to his comments whilst he examined Chiara. He was blown away by the strength of her tone, especially the lower limbs. Her adductors are so tight.. he was actually concerned if he applied any force her femur may break. Her rigidity is one of the most difficult things to manage, once her muscles go into lock-down there is nothing that can soften and release them…
So in a nutshell, her foot has completely relapsed.. ‘you have to start from the very beginning, we need to cast her leg and foot weekly, then will have to do another tendon release and continue casting, and 12 hours of boots and bar, 6 hours of AFO’s daily…failing that surgery is another option, however the success rate is not as good as the Ponsetti Method… and in any case the bracing/AFO’s and boot’s and bar must still continue after surgery – 100% compliance reassures the success rate’.
We have a short window to re-treat Chiara with the Ponsetti method, as once she gets older (past 2 years old ) this treatment won’t work. Which then leads to a host of complications and I think she already has her fair share.. So if we can try and catch the re-lapse now – Chiara has a better chance of her clubfoot healing without the need for surgery – which doesn’t necessarily guarantee complete success anyhow.. but she needs two feet to stand on, and if she has any chance of walking.. we need to make sure she has the perfect foundation!
The doctor leaves the room “so we are back at day zero okay”… and with that I could feel my shoulders sink as I tried to hold back the tears…my mind flashed back to all those trips back and forth with my newborn baby… and here we are… back at the start… we walk back into the treatment room and the casting begins…..our eyes lock as she cries during the process.. I saw such a sadness in her – in that moment… oh Chiara.. if only I could wave a magic wand… The photo’s show the roller caster ride of emotions at these RCH visits.. ups and downs..
So for now, we have to postpone all her weekly therapies and the physical part of the IAHP, maybe it was Chiara’s way of having a break….
“Sometimes the wrong train, gets you to the right station”…. and that’s how it rolls with all the various therapies for Chiara.. some work in synergy, others work from different paradigms as in the alternative vs conventional approach… in our case we definitely need a balance between the two…
The past few nights with the casts have been a blur, we have one very unsettled little day on our hands… awake all night long… one day and one night.. at a time!
On a brighter note, we popped into Terra Madre (Mother Earth) – an organic haven!! An important part of the IAHP program is nutrition (& sleep!!!). Chiara is on a very strict diet, specific to her brain injury and the conditions surrounding it. So shopping for organic whole foods for our family is number 1 on the list…
“Let food be thy medicine and medicine be thy food.” – Hippocrates