Video story of recovery of LOPI

[johnstrike]

I made a video story of the first year of my daughter Femke.

She is LOPI with C5 en C6 affected. She only showed first signs of recovery after three months. Since then she keeps progressing.

I posted this video at yotube.com: http://www.youtube.com/watch?v=wqxsAbP-XNU

I posted this video to show that late recovery can also mean a rather good recovery. Before she showed recovery I had the feeling that the doctors should operate just because then I would have the feeling that something was done about her injury. I'm sure other parents recognize this feeling.

After one year, you can see it was wise to wait and see. Although I'm do not want to suggest that this is the right policy for every injury.

I hope this video will give some hope for parents that are in a comparable situation.

[admin]

Femke is so cute! That's great that has recovered so well. My child also had C5 and C6 injury.

I was wondering if Femke had a praxis injury, or neuromas? Did you know how bad the nerve damage was at the time you decided to wait on the surgery. I am wondering if her injury on the nerves was slight or more severe.

[Mandie]

That video was adorable. It made me cry, remembering how it was with Sarah. Such great progress! Congrats and keep up the good work! Sarah is 4 1/2 now and still doing great. We still go to PT once and a while to learn new stretches.

Never give up! Great Job!

[admin]

she is beautiful. how I wish I saw this video 4 yrs ago. thank you

[John Rafter]

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Message was edited by: John Rafter

[johnstrike]

It were the doctors that advised to wait with surgery. We have a lot of confidence in the doctors so we followed their advise. Although at that time I sometimes went mad with just waiting and not acting.

She had a breach delivery, and our doctor said he always waits a little bit longer because recovery tends to start later with those kids. Would she had a normal delivery she probably would have been operated. In that case they would have seen in the O.K. that recovery allready had started and they would not repair the nerves.

I don't know what kind of nerve damage Femke has. I guess you can only know if you operate her and the doctor can see the damage. Seeing her recovery it's my conclusion that her nerve damage is more slight than severe.

I don't want to be misunderstood. This video is not a kind of statement against nerve chirugery. It is just an example that wait and see is sometimes a good policy. I hope it gives some confidence for parents that are now in the wait and see period.

John

[Amy]

Your daughter is adorable!
I'm so glad everything is working out for your family.
It gives me hope to see this, Abbie's arm looked just like that in the begining.
Thank you for sharing that video!

Amy

[Carolyn J]

John,
What an Uplifting Video!!
It sure made my day.
It is Courageous and wonderful to share with all of us UBPN Family.
Thank you!

HUGS to you and your beautiful daughter,
Carolyn J
Adult LOBPI,age 68 & proud of it!

[katep]

John,

What a wonderful video and such a great idea to show it. BOD - is there any way to house such "recovery" videos on UBPN?

The hardest thing about this injury is the "wait and see" and it is so hard for parents - especially new, traumatized parents - to understand why the doctor isn't DOING something! But this is why... without operating, the only real way to tell how severe an injury is, is to watch and see how it recovers. And that recovery happens painfully slow for the desperate parent watching and waiting. Information comes with time as key recovery milestones are passed... or missed.

For us, recovery was like a downhill slide. It starts out bad - lack of function and paralysis - and the longer it stays bad, the worse the prognosis. Not until we started to see recovery did things "turn around" and even then it happened so slowly! I would have loved to have seen a video like this; it might have helped me be more patient

Kate

[admin]

I want to emphasize though that for *many* children waiting a year is not the right option. The original poster made that point well. According to our doctor , if we had waited a year and not done surgery our child would have been much worse off. I rejoice for those children who recover but want to caution new parents that this does *not* occur in every case. Please be careful at thinking one child's miracle will happen for your child. That is all I am saying. Not that you can't wait and see, but that you know every child does not recover. I am very happy this particular little girl recovered.