Maia was born on May 6, 1998 at 5:35 am as the sun rose. It took a while before I heard her little cry but when I finally did hear it, I could close my eyes again and try to hold on to my life. I didn't get to see her again until many hours later after the anesthesia wore off from emergency surgery. My placenta didn't want to come out and I was hemorrhaging badly. It wasn't until a pulmonary embolism and one month later that I was lucid enough to really understand what had happened to her. Then I found Peggy and Emma's website and I saw the picture of this baby with an arm that looked just like Maia's and I finally understood. From that moment on, I knew how important the internet was going to be for Maia and for me.

Over Maia's early years she saw a multitude of doctors and therapists. We went to Texas Children's Hospital, Beth Israel, Shriners, Children's Hospital, St. Christophers and even saw a specialist from Paris. The information was very difficult to understand and we truly struggled with it even 10 years into it!

Maia had multiple issues concerning her entire body and I didn't understand why her birth injury would have such deep connections to her legs, her hips, her jaw, her ears and eyes and when she got older, her speech, her ability to navigate spaces and and her ability to be comfortable in the world around her and more. There was so much for me to learn about and diagnoses that I had to fight to get because once specialists saw her arm, they didn't bother looking at any other part of her body.

The biggest find was learning that she had diaphragm issues and that when her arm "died" and I thought it was a growth spurt - it really wasn't - it was that she wasn't getting in enough oxygen to move her arm! That was astonishing to learn! None of her specialists picked up on this and the scary part was that she was having surgery when nobody ever tested her pulomonary function. So, how did I find out? One day I saw that Maia's cheek looked red and I looked at it closely and it was tiny spider veins. I remember from my shiatsu school training that when you see this kind of spider vein situation it meant that the person wasn't getting in enough oxygen. I immediately made an appointment with a pediatric pulmonologist and sure enough she was barely getting anything in - her stats were so low. She was immediately put on six different meds and treatments, etc. I got Maia doing breathing exercises and got her involved in the choirs and gave her all kinds of whistles and tools to blow and now at age 10 things are SO MUCH BETTER and she's off all her meds. <sigh>

Maia had five different surgical procedures and had therapy just about every day. She got acupuncture, all kinds of chiropractic, massage therapy, she had all kinds of braces, splints, casts, different types of electrical stimulation and full body support systems. When she was 6 1/2 she fell in the playground and broke her arm - but did that affect her permanently? I really don't know.

Here's what I know for certain....

I know for certain that her nerve surgery helped relieved pain she was having as a baby because when she healed from that surgery she was a VERY different child. The haze left and she was spirited, happy and energetic.

I know for certain that nighttime electrical stimulation TES worked for her in a few ways..... she seems to have good scapular stabilizers (the scapula was one of our placements); it helped her resolve some serious infections in her arm almost overnight; and it resolved her edema issues whereas if she didn't do TES one night, she'd wake up still swollen. I think that every bpi parent should have a TES unit in their medicine cabinet for emergencies. Thanks to Dr. Karen Pape for brining TES to us.

I know for certain that TheraTogs made a HUGE difference in her body posture and how she felt about the world. With her togs on, Maia felt her left side for the first time and she could navigate her classroom easier. She became a different person - a happier - more stable - more balanced physically and emotionally with the Theratogs. But they take a huge commitment and she got weary and tired of them and I'm hoping that one day we can go back to them.

After all the different types of massage and chiropractic, I know for certain that the Koren Specific Technique is making major change in a multitude of areas in her body and I wish I found the creator of this technique earlier on but I also know that "they come, when it's time to come." So I'm glad we're here now.

Maia had around 35 therapists in her lifetime to date and she had a handful of REALLY good ones and the rest didn't quite even know the basics. We are still in touch with those really good ones and will be forever. They are really good people. When I met Billi Cusick, PT, (theratogs) that's when my knowledge base truly changed and it was the beginning of a personal renaissance.

So what is Maia up to now? Well, concerning her arm and her daily health, she is in great pain, she is internally rotated and her shoulder is not positioned well at all and there is a lot of deformity. We are considering her next surgery but Maia is completely against surgery at this time. We are hoping that in time she will come to an understanding of why something needs to be done to relieve the pain she's in. We have hopes to do surgery in the Fall but I also know that I cannot drag Maia to the O.R. if she's against it.

Maia functions pretty well one-armed. Her therapist, Marleeny-Beany taught her how to do so many things one-armed (when her arm was in a post surgery splint). It was so enlightening for Maia to be able to open up a yogurt container one handed and dress herself one-handed. I didn't realize how frustrated she was to do things bilaterally when Leftie just didn't work! At this point, her left arm is only a "helper arm" and if she's in too much pain, she puts it in an immobilizer to keep the shoulder joint from having too much movement.

Even with all of this.... Maia is enjoying her life immensely. She has a good set of friends who accept her for who she is. She loves her music - she plays the drums, piano, cello, and glockenspiel. She's in 4 different group music opportunities including playing rock and roll drums at School of Rock. On May 9-10 she'll be playing David Bowie songs at a concert. She's in two choirs and gets voice lessons. She's in tap and jazz dance, and aikido. Maia is not in formal therapy but we've replaced it with a daily something. She enjoys sports (soccer and baseball) and just recently started playing around with the potter's wheel.

If you want to see video of my girly having fun go to www.youtube.com/franlitz.

We live in Ambler, PA and Maia loves to meet other kids with bpi! Feel free to email me - francine@litzfamily.com.

I pray for some big shift to come around to bring her back to a time when there was no acute pain and when she could move it freely.

My messages to you are:

You are your child's best advocate.
Acceptance is key.
Don't let your child be victimized by this.
This IS a lifetime issue.
Your child can be incredibly successful
even without a working arm.