Thanks to everyone for their heartfelt comments on my last 2 posts. I think I am only just realising how much being ‘back’ in a newborn baby environment meant that issues relating to S’s birth resurfaced.
I suppose it shouldn’t surprise me so much.
After all, there I was, back in a hospital having another child.
And here I am now with a new born baby.
I guess I just didn’t expect to have such an emotional experience this time around after things had gone so smoothly with M.
HE was the child that was supposed to heal all wounds related to the trauma of the birth that didn’t go right.
Well, I guess I have learnt now that the trauma just never really goes away. Sure, it’s easier and it wasn’t at all as overt this time around, but still. There it was. Memories bubbling back to the surface of the pain, the anger, the frustration, the tears, the interminable WORRY of having a child that was injured at birth and who would never fully recover from that injury and never become that child that he should have become. It all came back.
Please don’t think I ever resent who S is. S is a wonderful child. And as I’ve said before, I honestly rarely look at S and think ‘what if’….. I rarely wonder about life with him having CP. Because that’s just part of who he is and always has been. He is a gift that was almost taken away from us. He has taught us so much. He has given us so much love and we love him so much.
And I think now that baby A is here and we’ve passed that 24 day ‘milestone’ I am feeling much better. I am now looking at A more as who HE is and not at where S was at the same time. We didn’t hear back about the ‘retest’. We were told that we would only hear if there was something wrong. And we haven’t. Relief.
And baby A IS a gorgeous boy. He sleeps so peacefully and rarely cries. He’s divine. A month old. My baby boy who will always be my ‘baby’. So precious because I know he’ll be my last little baby experience.
And M, my crazy bouncing bean has become an instantly loving and caring big brother. He spends his days watching over ‘baby brother’, smothering him with kisses and cuddles and telling him ‘it’s alright’ when he gets upset.
S loves him too. Telling me how we have to keep him ‘forever’.
Baby A is never going to be short of cuddles.
On a totally different note, we got S’s ‘Gait Analysis Report’ this week. I spent a few hours ‘decoding’ all the jargon to work out exactly what it means. Here’s what I’ve learnt.
It tells us that he has a ‘complex movement disorder which contains elements of ataxia, hypertonia and perhaps dystonia’.
Geez I hate big words. BUT at least these are big words that I’ve heard before. AND I prefer to say that he’s very wobbly and has trouble with his balance and coordination and controlling his movements.
Next up, they told me that his ‘FMS’ is 4,2,2 FAQ 7.
This meant NOTHING to me. I have never even heard of FMS.
Thanks to Mr Google, I know now that FMS = ‘Functional Mobility Scale’ and is related to a scale created by the Gait Lab we went to.
Here’s how it looks – Functional Mobility Scale
So to break it down for S, it means that he can:
for 5 metres: walk with sticks without help from another person (rating 4)
for 50 and 500 metres: walk with a walker or frame without help from another person (rating 2)
I am guessing that they gave him the 4 rating for 5 metres even though he doesn’t use sticks because he did some very wobbly walking for them without the walker that SUGGESTS he could do this well with sticks.
I am still not sure what the FAQ 7 means. Will ask the physio when we see her in a few weeks.
They also write:
“He has not fixed contractures and no significant lower limb spasticity” (contracture means ‘shortening’ of a muscle)
“He is very effective on his walker but can walk independently for short distances and his lower limb alignment and posturing is improved in his Piedro boots’.
Yay for the boots. Yay for the walking short distances!
These are their suggestions:
1) No indication for ‘tone management’ (which I am guessing means no need for things like Botox).
2) Might be ‘helpful’ to introduce hinged AFOs ‘to promote a better base if support and improved control around the ankle and knee’.
S has never had AFOs before so I honestly didn’t even know what a ‘hinged’ AFO was until I read this. Turns out it is an AFO with hinges at the ankles to allow for more movement there – see here . Hmm. Not a great fan of AFOs BUT willing to learn more. Will be speaking to the physio about this too.
3) To consider something ‘as a “step down” from the Kaye Walker to independent walking, perhaps poles or single point sticks’.
This is a tricky one, because of the lack of control S has with his arms. I am just not sure he has the ability to balance and coordinate the sticks. We’ve tried it before without much success. BUT we will try again. I’d LOVE for it to work. I am excited that they think it MIGHT work. I can’t tell you how exciting it is to see those two words ‘independent walking’ in a report.
Finally, they note that he has ‘coxa valga’ (outward curvature of the hip – still not quite sure what that means, but have decided not to search for much more information as it doesn’t sound so great and might just stress me out of I read more :-( ) and ‘mild hip dysplasia’. I knew about the ‘dysplasia’ (misalignment) from his last x-ray.
Not thrilled about either of these things. BUT I am hopeful that they end the report by saying that ‘no intervention is required but further monitoring in a year is recommended’.
Fingers crossed that things stay the same there.
Exhausted by translating – I mean reading – the report, I am now off to watch Teletubbies with M. Now THAT’S a nice simple language I can appreciate!