United Brachial Plexus Network, Inc.

We have been talking to Maia about going to Texas and seeing her "special" doctor. Little bits and pieces at a time.

Maia created this book about trees and how the leaves fall off and the tree goes to sleep until springtime when it wakes up. And I used this as a lead in to tell her that when she was born, her whole body was awake and moving but her "armie" (that's how we refer to her affected arm) stayed asleep and didn't know how to wake up. And we screamed "WAKE UP" armie and it didn't wake up...and we tickled it and it didn't wake up...and we brushed it and it didn't wake up and we massaged it and it didn't wake up. So we found a special doctor who was in Texas who knew how to wake up sleeping armies. And we went to see him and he knew exactly how to wake up her armie and we go back to him to see him often so he can help make it stronger.

I asked her to show me certain ranges and I explained to her that if her arm gets stronger this time, she might be able to do 'this' or 'that'... and I also told her that the special doctor will try to help her armie have less "boo boo hurts." (God I pray for this so much!)

Then I took her into the bathroom and had her stand on the sink and gave her a tour of her scars.... And I added in some conversation about "magic sparkles" and God and miracles.

Then we found her teddy bear and I did the voice for teddy and he couldn't move his arm..and we role played... and then we took the "magic sparkles" and put them in the exact spots she has scars.... (I have a sparkle paint pen)... and then we even put some where the new incision will be on her...

Then we put Teddy to bed in a basket...and got a blankie to cover him up so he could rest (while the sparkle glue dried) .... then an hour later he was a little sad, so we gave him a real tylenol....and we sang him songs - the same songs I sing to her in recovery room... and we rocked him to sleep.

Tommorrow will be "splinty" day for teddy...and then he's going to be really happy and be able to take a ride in his wagon, etc. (TCH made him a splint for the last surgery).

After tomorrow's splinty thing....I'm going to give her a break and not say too much more..... then on Friday at school I will bring her big splint to school and I have a book I wrote and got laminated so it can actually stay at school...and it's about her trip to Texas in her own words..to her classmates....

(do you want to see it? www.injurednewborn.com/maia/schoolbook.pdf)

And I'll let her friends check it out - put it on - whatever they need to do....

And they each already created a page for Maia's SPECIAL BOOK OF FRIENDS which Maia will not see until she's in Texas. Each child created an 8 1/2 X 11 page with a picture and decorations, etc. on a page...

And I also have little envelopes for each child with a hanukkah candle in it and a note asking each one to use Maia's candle to light their first night's candle because Maia won't be able to light candles in the hospital...and she is having surgery on the 1st day of hanukkah.....

So what feels good to me is the part of involving all the other kids...at such an early age like this. Maybe it will be their first lesson in compassion and also in tolerance to accept others who are 'different' from them. I hope so.

I have depositions this week - this pre-surgery week. I have faith that God will give me the strength to handle all that He has placed upon me for this week. One day at a time... right?

-francine

Francine, I can only imagine what you and your family are going through. I think that your approach with explaining surgery to Maia is wonderful. I wish Maia the best of luck. What a brave little girl and brave little teddy bear.

Right now, its rainy and miserable here in Houston. Its been getting down to the 40s so we're acting like its freezing. Take care and Good Luck!

Francine, it sounds as though you have done a great job preparing not only Maia but her school friends as well. I found that including the friends is very important because you never know if kids will find change interesting or scary and when it involves your child, you don't want others to be scared of the changes such that your child feels alienated. I can't wait to go and look at the book. I am really relating to the need for inner strength right now and in praying for my own, will include you also. I feel we are given nothing that we can't handle even if there are many days and events that challenge this.

All will turn out ok. Stay strong and vent often. I find this tends to be helpful. You and your family are in our thoughts. Mary

Louise - you are a sweetheart! And thank you so much for all the prayers! We truly believe in prayer. Yes - you may print the book - anyone can if they wish to - wanted to share it with all of you.

Teddy Bear got his splinty put on this morning by Dr. Maia and he is feeling so much better. His sparkle scars look very good - they dried perfectly and he knows that he cannot move his arm for a while until it gets stronger and let's the sparkles do their magic. But he is still being restful today and back in his bed with some blankies on him. Tomorrow he might go to school with Maia.

Maia crawled into bed with us at 1 am (that seems to be an ongoing thing the last couple of weeks) and I so welcome her warm little body snuggled up inbetween us. I've been keeping my hand on her shoulder to offer it healing touch in preparation for Monday. As hard as this time is for us - it is SO special, too. The bond between us now is just unbelievable. She wants me to sing her, the "special songs" every night. These are the songs that I sing softly right in her ear, non-stop when she is in the recovery room, so that she wakes up to my voice and her special songs.

anyway - I'm babbling...sorry
thanks again Louise!
-francine

very kewl Francine-
you would make a great teacher
well you ARE a teacher
Cant light candles in the hospital? arer you sure? Not even for a few minutes just for the menorah?
anyways- we will think of you nopw when we light ours too- gotta find it first argh- season crept up on me thgis year-got a tree up tho(up,not trimmed tho)- do you guys do a tree too?
m

we don't do a tree but we do blue lights in the window and all over the fence and two hanukkah menorahs lit and lots of hanukkah decorations - hanukkah is a festival of lights - story about the miracle of the oil that lasted 8 days when it should have lasted only 1.... so we DO the "light" thing! lol

Francine - you're awesome!!! Our entire family will be praying for Maia and your family.
Cindy

Thank you for sharing. I will remember your approach when it comes time for Gabrielle's surgery. Your little Maia is in my prayers tonight and in the future.

Francine, Your outlook on this is very inspirational to me. Ashley will be getting her cast off on Dec 10 at BCH & I cannot wait to see her arm again & hug her so that I can actually "feel" her. I wish Maia the very best in her surgery & we'll be thinking of you.
I think you are an outstanding mommy & maia is very lucky to have you!!! Take Care, Melissa