United Brachial Plexus Network, Inc.

Hi everyone.

I'm feeling pretty down right now. Overwhelmed, neglected, over-looked...I don't know. I guess it's kind of like a death - a year has passed and "I should be over it now".

Avery is 13 months old(ROBPI). Her recovery has plateaued again and I seem to be the only one who cares. I am a single mom and have a 5 year old as well. I think that as soon as Avery is in t-shirts and fewer clothes in general, people will start noticing again.

I feel like I'm the only one who notices her trouble. The therapists see her about once every 6 weeks (if that!) which is partly my fault - I don't push hard enough.

Everyone just still seems to be doing the "well, look she's using her arm quite a bit now". Geez!!! She has a 10 degree contracture and it's getting worse, her scapula is winging, she has NO abduction and very little external rotation...I could go on and on.

I guess because she's 13 months old, people expect her to be "clumsy" and not great with her fine motor. She can't even put food into her mouth with her right arm!! This is a problem to me!!!

We've been to Toronto 3 times but they weren't any help. They told me straight out that they had no idea about Avery. She is so borderline they said that they couldn't decide what to do - so they did nothing. They want to see her again when she is 2.

I guess what upsets me is reading stuff about TCH. I'll never know what the best thing would have been for Avery but I know that TCH would have intervened - Avery had absolutly no movement in her elbow or shoulder until she was about 4.5 months. Then there were tiny flickers for another month or so. Maybe she'd be doing way better by now.

She falls and can't save herself so she has had some nasty bangs on her head and right side. Her reaction on her right side is very poor

I have made arrangements to do a video for TCH and plan to push the therapists here but it's like hitting my head against a wall! I work full-time and am just emotionally exhausted. I keep putting off advocating for Avery and then I get frustrated!

Thanks for listening. Sometimes I feel so alone in all this - then the next day I feel strong again! LOL

Bonnie

Bonnie,
We all feel like this sometimes. My son is 4 1/2 and is hopefully through all this surgery stuff, but when we were going round and round with insurance companies and the like I would feel so drained and down. My husband couldn't deal with it for fear of losing his career which in the end happened anyway. Just keep plugging. It all gets better. You have to look at everything your child does and pat your self on the back because you helped them get there. My attorney has told me several times that if it wasn't for me fighting for my child, he wouldn't have the recovery he has today. It makes me feel like I did something right. Keep plugging....your child will thank you later.

Hi Bonnie!

We've all been where you are - it goes along with the territory. There are up times and there are down times. There are plateaus and then there are huge leaps. ESPECIALLY around that age!!

It's amazingly hard to balance a full time job and a child with special needs. BUT can it be done? I think it can with the belief that it can be done.... perception is everything!

For example - Maia's therapy center starts at 8 am and they work until 8 pm and they are there on Saturdays. If I worked full time I would probably do a couple of days at 8 am and take a double shift on Saturday. (one PT and one OT). Do you have hours availability with your therapist and if not - can you locate another group that does have good hours like this?

My personal opinion - based on my experience with Maia - is that PT is really important at this age. PT will teach them how to fall - how to protect themselves - will help with balance and gait. The PT fitted Maia for orthotics for her shoes and Maia wore them for six months and that took care of the majority of the falling problem. Now she just falls occasionally. It was really amazing how fast the orthotics worked - but you have to do that at this age while everything is still forming and the tendons are still soft. PT is about the big body picture rather than just the arm. I think it's really important for kids with bpi.

The next thing is about what's going on with her right now. A -10 degree contracture is not too bad. A -40 degree contracture is non-functional. The dynamic splints used for elbow contractures only go to -10 degrees. So I'm just trying to lighten this worry a little bit. Doesn't mean you don't have to work on it - doesn't mean you don't have to watch it carefully. But keep on trying to strengthen triceps and it also may be caused by contractures elsewhere also. Maia's elbow contracture got much better after she had her shoulder muscle/tendon release/transfers done. (mod quad surgery)

Scapula winging we have learned is not such a bad thing. It signifies that the child is not dislocated. And there are things like taping or bracing that will help stabilize the scapula.

Supination is tough for these kids - does she have any supination at all? I highly suggest that you read the article on supination in the last Awareness Outreach - and if you didn't get a copy contact nancy@ubpn.org and she will send you one. There are many reasons why a child might not supinate.

But the bigger picture here is you and your feeling of exhaustion and overwhelm and feeling neglected. This is something you need to address and maybe some counseling might be a good idea or some time off to just regroup. If you're thinking that it's over a year and you should be over it - well guess what... how can a mom be over it? I don't think we're EVER going to be completely over it - our kids have problems. They have lifetime problems. And ok - we may toughen up in years to come but will we really EVER get over it? I think that each time a new phase comes, there will also be some new reminder of what our kids can't do. Of course there will be much positive too hopefully - but I don't think we will ever stop grieving in some way over what happened. Don't be so hard on yourself. You're entitled to being emotional about this. It is completely normal.

Since you are in Toronto - I wonder if you can make an appointment to see Dr. Karen Pape ? you can reach her by contact TASC network - http://www.tascnetwork.net. She is an amazing person. She's like Dr. Phil of the bpi world. Maybe she is doing one of her 20:4:80 seminars nearby? or maybe you can make a private appointment to see her. She will help you figure all of this out and prioritize all the issues that you talk about.

But for now - can you find at least a 5 minute slot a day that you can spend time just relaxing -where you don't think about anything else and you can just escape? How about a nice hot bath with some lavender essential oil in it? Or can you get yourself a massage? or a romance novel to escape away with? Something Bonnie - just something to take your mind off things.

Big hugs to you,
you're not alone in all of this,
francine