3.5 months post primary

[Andy S]

Our little Lily is 3 1/2 months post primary surgery and we are not seeing much improvement. She is improving, kinda, she is regaining the movement she had before the surgery. How long did you wait to see results of a primary? She had two nerve transfers, oberlin procedure and should nerve transfer. I am starting to doubt our decision to have the surgery. She could lift her arm more before surgery. She can lift it with lots of overcompensation.

[katep]

Your doctor is really the only person who can tell you how her recovery is coming. The recovery you describe, 3.5 months after primary, could be really amazing recovery or terrible, depending on exactly what the damage was and exactly what was done. Your surgeon should know, based on what he/she did, how long things should take to start reconnecting and when you ought to start seeing results from the surgery. The impact of the surgery itself knocks out some function that itself can take time to come back. Again, it all depends on what was done.

*Hugs* to you. It's terrible to just wait and not know. I hope you can get some answers from your child's doctor.

Kate

[BIGJAVSMA]

We didn't see a thing until Javier was 13 months post-op. A year. He had surgery over 5 years ago and he is still changing with every growth spurt and therapy seesion. Sometimes, functions that he has now will not be there next week and return in 2 months. It really is all about, wait, see and hope.

Best of luck to your family!

Marlyn mom to Manny 10 and Javier (robpi) 6

[Mica]

The waiting after primary is so terribly hard. I'm sorry you're going through it. When Aria is 50 years old, I will still remember exactly how that felt. It's hard to believe this - but things really do get better. Just hold onto that thought.

At 3.5 months post primary, Aria still had nothing. Around 4 months, we started to see some function - flickers, really. By 6 months, she had regained the function she had lost from the primary surgery, and was starting to contract her biceps. By eight months post primary, we had solid biceps contraction and were making steady gains.

You'll probably see gradual improvement for the next 2 years or so - but Kate is correct that your surgeon is your best source for a timetable. Depending on what was grafted or transfered, and the extent of damage, recovery is different for each child. (Don't you hate hearing that? I know how frustrating that statement is, even if it's true.)

I won't say to try not to focus on the arm. I honestly believe that's something nearly impossible to do in the months following primary. At least, it was impossible for me. I'll just repeat that things really do get better, and we're all here to support you in this difficult time. Hang in there.

[Andy S]

Thank you all,
We are seeing improvements, just not as much as we hoped. Just the other day Lily used her right BPI hand/arm to move a toy, her grip is getting better, she can grasp toys with more strentgh then a month ago. She is also starting to supinate and have better wrist control, so actually if I put it all into perspective she is doing good and improving.
I can't wait to see her bend her arm or get rid of the "waiter tip". We have a follow up in couple weeks at Mayo.

[claudia]

The recovery for all of the bpi surgeries is very much individual. I know that Juliana (who is now 10 1/2) continued to have success from primary for YEARS!! she had no hand function upon birth...she didn't get hand function until she was about 3 years old. She had primary at 4.5 months of age. And, the hand function she got was poor. Now, it is okay. She can play a simple song on the piano. Her strength is poor, but her function is pretty good. I know how nerve wracking and difficult this time is. Just keep working and PLAYING...it's summer time... get out that kiddie pool and play, play, play.

good luck,
claudia

[Andy S]

Some good news folks. My wife informed me Lily had some signficant movements recently. Unfortunately I am out of town and did not witness them. She said lily lifted her arm while sitting on the high chair she lifted up off the tray and onto her sippy cup!!! She also said she moved at the elbow, I am excited and this is also good because we have our follow up three days from now. I am anxious to see what the doctors say, I will be joining the consultation from a conferance call. Even if I am not there I can hear and ask questions. We are coming up on six months post op.

[Carolyn J]

Thank you for the Update on Lily, Andy! It is sooo good to hear about "Progress Milestones". Please keep us all informed about Lily's Progress whatever it is. "It's A GOOD THING"!
Carolyn J
LOBPI /age 72

[Andy S]

The Mayo visit was very uneventfull, the doc said "it's to early". So we wait... On a good note they are very confident we will see improvement ,they did'nt bat an eyelash when talking about it. They speak so confidently about her recovery.

[Carolyn J]

HAPPY happy news about Lily! I am sooo glad for you.
Please keep us all updated...Miss Lily is going to surprise you, Mom n Dad!!
"Gramma" Carolyn J
LOBPI/72