IT is lovely to watch your children grow and blossom though the stages of childhood. All of us with little ones would be familiar with the phrase “My how they’ve grown” so often uttered by those who havent seen them recently or who don’t see them often! The joys that come with “growing up” and being able to do more things, as well as the benefits which come with deeper insights and a greater level of understanding of things in a broader context.
Mikayla experienced significant physical growth throughout last year.
Unfortunately, for kids with CP there is a “foe” in this growth as well. With growth comes increased weight and height which not only means that little bodies need to constantly relearn how to operate under additional forces, but also weaker muscles are exposed under the strain of greater gravitational forces and the strain of supporting heavier weight. Also, muscles affected by spasticity simply dont stretch enough to keep up with bone growth which means they also end up being shorter than they should be. In Mikayla’s case, her knee joints cannot acheive their full range of movement anymore and this called a contracture. Contracture is a term we had heard before – it was something that we needed to avoid, and stretching, strengthening, positioning etc have all partly aimed towards the goal of “not getting a contracture”! Although we have been lucky I guess to succeed in “putting them off” up to this point, to find out she now has contractures still feels somewhat like we have failed her in some way, (even though, we are told that it was more than likely inevitable that she would get some sort of contracture(s) of some degree at some point).
Anyway, despite our best efforts Mikayla’s muscle growth has not kept up with her bone growth and this has resulted in “contactures” in both her knees and probably her hip flexors too and at our last appointment with her orthopaedic specialist we were told that she was going to need soft tissue surgery. The plus side of that is we have still managed to avoid bony surgery (ie hip surgery) to this point at least, and the longer that can be put off too, the better I am told.
But still…..surgery???? THAT was not on our radar at this point! We have been monitoring her hips very closely under the hospitals hip surveillance program and have been hopeful that we would manage to avoid hip surgery….which we have so far. We knew that we were doing well if we could get to around 8yrs old without having any surgery, and with Mikayla having turned 9 we thought we had pretty much dodged the surgery bullet….. so the mention of surgery quite honestly came as a bit of a shock.
In any case here we are at 9.5yrs old looking at some quite significant surgical intervention to lengthen her hamstrings and probably a number of other muscles as a result.
With one appointment, our whole situation feels like it has changed so quickly! It feels like we have gone from making gains, achieving results, working towards new skills and abilities, with a team of people we know and feel comfortable with to suddenly now being shunted across to a different area to deal with surgery and rehab! IT feels a bit like we have been dropped back into the unknown which is sort of funny because we have always remained somewhat in the “unknown” – the thing is that we became sort of familiar with the bit of the undkown we were in, and now its like we have been landed in a “different bit of the unknown” and are starting the process of gathering information, getting to know new people and the lay of the land there, and basically trying to get a handle on this new situation (which is part and parcel of the old situation) – sound confusing – IT IS! Sound a little daunting – YEP IT IS THAT TOO!
Anyway, having been travelling this journey for more than 9yrs now, we have learned a few things along the way that might help us as work though this next chapter.
1) We are more experienced at negotiating the unknown, we have more contacts within it, and we have the benefit of broader technology and social media forums to help us find our way, and hopefully to find what we need to know to make the best decisions for Mikayla’s future as we can.
2) Feeling left to the “system” (a system that often seems to break down somewhere along the line) to contact you with your next appointment SUX. So another thing we have learned is “not to wait and assume that THE SYSTEM will take care of things”. Having learned this lesson, we did not leave it long in the lap of the gods, and have been proactive in contacting the hospital department and trying to find “someone” who can be some sort of point of contact. We have done some digging around to ensure we were on the relevant waiting lists, and are getting prepared with the relevant referals etc to get a second opinion, and the opportunity to ask further questions about the options should it become necessary.
3) In the meantime, I am researching (again) and getting on with now. Ploughing though the internet to try and find the information I need to be as informed as I can about ALL the options and anything else that might help at this point from dietary considerations, to alternative therapies, to treatment and maintenance/control of the contractures that have already developed, all the while trying to ensure we are continuing with all the things we do to try and avoid any further contractures from occurring………and balance all that with everything else that comes with family life.
Although we have a very brief and basic outline of what will be involved in the process, and the sort of testing that will now be done prior to surgery so that they can determine the best course of action and timing, I have to tell you I have far more questions than answers at this point. I am finding it hard to get my head around, hard to plan for the unknown, and hard to be left without knowing exactly when and where the next solid next step is.
So as we rejoice at the gains that have been made over time, and are thankful for everything that has been done in order that Mikayla is where she is now, we continue to struggle against the growth that has come and inevitably is yet to come, in order to “maintain”. Maintain the contractures where they are at the moment and try not to let them get worse. Maintain the skills Mikayla has worked so hard to achieve, that she has learned and had to relearn with each change to her body through both growth and various intervention. Maintain her ranges in other muscles and try to prevent further contractures from forming. Maintain our vigilance in striving for the best for her and making sure she isn’t lost in the “system”.
Maintain the best balance we can in life as we work through this new phase in the journey and continue to adapt to seemingly ever-changing circumstances.
Mikayla only receives 5 partly Medicare funded physio appointments in a calendar year! All other therapy is done at our own cost. Anyone wanting to donate towards the costs of Mikayla’s regular therapy requirements or her intensive therapy programs can do so on line at her charity website at http://www.developingfoundation.org.au/family/mikayla or can email us at firstname.lastname@example.org for other methods.