United Brachial Plexus Network, Inc.

Hi, everyone. I haven't written in awhile but I'm always checking in on things. So, I have some stuff I want to talk about, I guess. Josiah is now 5 1/2 months old. He can bend his elbow and he's starting to extend his fingers. His left arm is always helping his right arm out; he definitely knows it's there. I've taken him to Children's here in Wisconsin and they're suggesting surgery. I have yet to send the tape to Texas for a second oppinion, though I'm sure it will be the same. The thing is, I really don't want him to have to go through surgery. I'm scared and I don't know how to be brave about all of this. I keep praying and hoping that God will perform a miracle and he'll be fine. He was away for so long after he was born and I guess I'm not over it yet. I don't want to be away from him. Can some of the parents out there give me some idea of what it's like to go through this with your child and maybe some of the adults who wished they could have had surgery? I don't know, I need some people to talk to. It's a hard place to be in because you're making the decision for someone's life and I can barely do what I need to for mine. So, any words of encouragement or alternative methods would be so appreciated. Thanks in advance for everyone's help and support. I love you guys.

Hi Josiah's mom... My heart breaks for you trying to make this decision - it is very tough. I have journalized our whole experience with Maia - it is here: http://www.injurednewborn.com/maia/homepage.html.

Surgery is not an easy thing - there are many risks involved. And making a decision FOR your child is emotionally unbelievable. But the best thing I can tell you to do is to get the multiple opinions and ask as many questions as you can muster (http://www.injurednewborn.com/maia/drquestions.html) and then follow your gut. You'll know what the right thing to do is.

About alternatives - they have their place but for us (because Maia's injury was severe) they didn't do much more than offer her some comfort, emotional balance and a stronger 'core' - which is actually a great result. But in terms of the bpi - nothing seemed to stop the progression of any of her physical problems (and I am a professional in the "alternative" world so Maia has had a lot of access to MANY alternative types of input).

Daily, Maia gets massage, Reiki and reflexology. When needed she gets myofascial release and cranio sacral therapy. She has other therapists that do accupuncture, homeopathy, Barbara Brennan Healing and has just started Feldencrais therapy.

With the exception of chiropractic which seems to be very mainstream now, the one hard thing about alternatives is that it's cash out of your pocket - insurance won't cover much of it - so you have to pick and choose the best modality and the best practitioner for your child. I always recommend that you see the practitioner first on your own and if you guys click, then bring your child. I don't like children getting "practitioner burnout".

Good luck on making this hard decision,
-francine

Hi,
Matthew had his first surgery at 6.5 months old. I thought I was going to fall apart when they took him back for surgery but instead I felt a sense of peace because I knew I was doing the right thing for my son. Matthew was back to himself the day after surgery and never had to have anything stronger than tylenol. He has never let anything slow him down and he hasn't had a bad experience yet. Sometimes I think if parents are nervous the kids pick up on that and it affects their reactions.
Matthew has a severe injury and has been fortunate to have a great recovery. Every time he visits his docs they can't get over how well he's doing. We had Matthew involved with acupuncture (he had no movement at all before we started this) He had a huge neuroma on two of his nerves that the surgeons debated over removing during primary surgery. They said Matthew should have no function at all and couldn't get over how he moved his wrist and fingers. They said in all of the years they have been performing the surgery they have never seen anything like it. It was amazing for them. We have also done chiropractic, reiki, myo-fascial release, reflexology and hopefully soon will do some cranial sacral therapy. I think alternatives help tremendously.
Just stay calm - maybe try some acupuncture for yourself to relax. I remember having a treatment while Matthew was having him and it was really great. I was sooooo relaxed when it was done.
Cindy

I can tell you that you are not alone in what you're feeling. My daughter will be 2 in September and hasn't had surgery yet, but we just found out that she will need secondary surgery this Winter! I am so scared and I really have no idea on what to actually feel right now. I am still numb! I always thought Ella would be one to avoid surgery and that she would heal correctly. Wishful thinking I guess.
She had her MRI Monday and that was such a bad experience for me I have no clue on how I will handle surgery. I hate the fact that she will be in surgery so long without me. It it something that many other moms here have already dealt with. Talking to everyone else who has been there has helped me greatly and will continue to do so. Josiah will be in our thoughts and prayers. Stay strong...afterall, you will know what is the right thing to do!
~~~~(((Hugs are being sent your way)))~~~~
Krista