Tag Archives: development

Growth – friend and foe

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 teammikayla@hotmail.com for other methods.

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“Will she ever walk?”

“Will she ever walk?” This is a very common question that we have been asked many times over the years. Generally what people actually mean when they ask this question is “will she ever be able to walk all by herself without any support”. The short answer to this is “I don’t know”.
In fact “I don’t know” is the answer to many questions regarding what Mikayla will be able to do that we have been asked and indeed asked ourselves over the years….see my post on “where is the road map” for more on that subject…but let me just say here, that one of the really difficult things that I have found about Cerebral Palsy is that there really ISN’T much of a road map!

I suppose “walking” is sort of an indicator for people, a measure of progress, a measure of independence, and perhaps simply an idea that if one can walk, then they don’t need so many bits of equipment and therefore life would be a bit easier. I guess in the early days, walking was one overarching goal that we hoped to help Mikayla to achieve. We didn’t know what she might be able to do, so we just aimed for the normal everyday milestones, and took one day at a time (I have a post for more on taking one day at a time too!) and never ruled anything out.

Mikayla did get the point where she was able to weight bare and so stand up with support.

Look at me, Im standing up!

Look at me, I’m standing up!

When she was 4yrs old, she did get a walking frame so she could experience the world standing up and start the process of learning to propel herself forward.

in Hart Walker

When she was 4 she received a Hart Walker and was able to do the Hart Walker Program due to a generous donation.  The Hart Walker opened up a new world of fun and was a great therapy tool to help Mikayla’s development.  It was exciting because it enabled hands free standing and forwards movement. (more on the Hart Walker in its own post)

Later she was able to progress to a Kaye Walker and take steps using that.  In the early days, I don’t think it was expected that she would be strong or steady enough for a Kaye Walker so this was a big deal and indicator of how far she had come.

Kaye Walker

Don’t get me wrong because each of these walkers was hard work!  There is an aweful lot that goes on behind the scenes that you just don’t get from a photo.   There was a lot of encouragement and perseverance required from all of us both when in a walker, and in terms of the ongoing therapy that was needed to get to each point.

So, in answer to the original question: “Will she ever walk?” ,  to some degree, Mikayla can in fact “walk”.  If we set her up with a walking frame Mikayla can use it to walk a short distance.  This is a really important part of her daily routine because walking helps her to weight bare and therefore helps her bone growth and development, as well as her muscles and joints.

Generally speaking, at this point, Mikayla uses her walker to go short distances from A to B with support eg from one end of the hallway to the other, and needs to be on  very flat not slippery surface, and generally a pretty straight course.  She has difficulty manouvering it around bends or negotiating obstacles, and she really needs supervision and support.  However, she is happy to do it,  and likes to challenge herself at times with seeing how far she can go.  There is no doubt that “walking” is hard work for her though!

In our circumstance, we feel it is important to give Mikayla the opportunity to progress her walking as far as she can, and that it is an important option for to have to use at her disposal.

But if the question is “can mikayla walk independently without help”  the answer at this point is quite simply “No”,

Is taking an unsupported, totally independent step totally out of the realms of possibility for her? “I dont know at this point”   What I do know is that there are a lot of factors that would make doing this extremely difficult for her right now.  One example of this, is that Mikayla cannot balance enough to stand up without holding onto something, and right now, she does not have the ability to stabilise herself enough to keep her body in an upright position, and she has great difficulty in motor planning meaning that coordinating all the movements required in all the parts of her body are very difficult to do all at once.

Is it likey that she will take an unsupported step sometime in the future? “Given what we know at this point, it is probably not  likely” ………. but is it impossible? “I dont know”

So for now “Never say Never”.  It is more than likely that Mikayla will always need a wheelchair for some things, and certainly to get any distance or to get around generally in the community.  How great would it be though if she could take a few steps to get say from her bed to her chair, or to get around within in a small space, say her bedroom?  There is no doubt that this would open up further independence and freedom, and mean less “modification” would be required for her environment for the future.

Perhaps the more important question is “Is walking at all costs the most important thing”?  The answer to that is  “Not to us”, and one day this will be something for Mikayla to decide for herself.  What IS important to us, is probably the same thing that is important to all parents regarding their children, and that is to love Mikayla for all that she is, and to help her to reach her fullest potential – whatever that might be. And of course as parents we will continue to do what we can to make her abilities in all things as good as they can be.  What the future holds, we will simply have to wait and see.