5 Month Old -Checking In

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Here we sit, one month after little 's untethering. Other

than a zipper-looking scar running more than halfway down her back

you'd never know what this little fighter has been through. She is

progressing so well, rolling over (which is blowing my mind),

finally wanting to put pressure down on her legs and is suprisingly

keeping up with developmental milestones for others her age. If

only the sweaty/clammy feet would go away.

We are very aware that this could all end and she could very well

start to deteroate, we are doing all we can to stay on top of it. I

can't thank all of you enough for your strong words of

encouragement, advice, and opinions. On the other side of this type

of surgery you find yourself in a position of strength you never

knew you had. That sounds so corny but it is true.

As far as her long-term prognosis, the doctor is cautious. Just

like a heart patient, can the doctor say you'll " never " have issues

with your heart? No. But what he can do is advise you on the

things that you can do to keep your heart healthy. This is somewhat

the same. We have to continue to closely monitor her, keep

her 'very thin', and watch/listen for any signs of regression.

Though he did say that all people that get untethered, do

retether...not all people have to have the surgery again. So, from

what I understand she will retether we just don't know at this

point, to what extent and what long-term battles she'll have to face.

I continue to lurk on this site, as everyone's questions/answers and

concerns sure help in times of weakness and dispair. Strength of

mind and spirit can sure help heal the body as I'm finding.