United Brachial Plexus Network, Inc.

Hi all!

Boy what a week. This stuff is getting kind of hard..I sure hope Lisa D is right and Katie's surgeries will start being spread out a little farther soon.

Bathing is a complex thing here...it was a breeze with the other two (after a day or two of adjustments) but at almost 20 months (and a severe case of me me me and no no no) she is so very hard to handle. As I have said before she lost no strength or movement with this surgery so far (and apparently is having a recovery spurt from the first two) so it is VERY HARD to hold her arm in a 90 and 90 degree position. I almost wish for a cast...she gets majorly upset when we are taking the splint off and melts down when we go to put it back on. We tried sponge bathing--it was even worse--she rolled all over the place. And she keeps telling me OK OK, I sorry, I be good over and over. I hate this and have a very nasty song in my head for the (S)OB that did this.

Her incision looks wonderful however. Her ped did go ahead and cut the long stitches left hanging out on each end as she was pulling on them. But Dr. Nath did a wonderfull job, it is so thin and smooth, almost like a scratch. I doubt she will have any trouble going strapless or backless when it comes time for dances and bikinis.

We are only using the tylenol/ codeine at night (and she is sleeping a little better now) but her Ped told us to go ahead and make sure we gave her regular tylenol the rest of the day to help make sure the pain doesn't get too strong and uncontrollable w/op stronger meds.

She has figured out how to move her body to do what she wants, is climbing and jumping...and beating us to death with that arm. It is like a weapon guys, just so you know. And she knows it..her cousin was teasing her thursday evening and she twisted, leaned and WHAP on top of the knee with the elbow part of the splint. I caught her practicing that move the next day in her toy room too. LOL..I am in big trouble she is supposed to go back to daycare next week....

Sorry so long..just needed to vent a little and connect. I miss the old boards today..

ohmygosh..... bpi karate huh?

Well christy - sounds like you need a break. Are you getting some time out and away a bit here and there?

Thanks for sharing all about Katie's surgery and recovery. The heads up on things really help... I am sitting here shaking my head wondering about the bathing thing with Maia....maybe with her wisdom of years she'll understand the "sit still" concept? gosh- I hope so.

We're getting Maia's hair cut short before her surgery so that it's not too much of an issue - it grows so fast anyway, by the time she's out of her splint it will be back to where it was. Someone suggested that we take out her old splint and show it to her before we go to TX so that she has an idea of what to expect. No matter how we look at it and no matter how much I talk to myself about holding myself together better, it's still nauseating and upsetting to me. I wish I can fast forward to summer.

thanks for all your sharing and I hope that things get better and easier as time goes by,
francine

Oh Francine....I always wondered what it would be like if she could tell me what was going on. I am sure it is more frustration on her part, she doesn't understand all of it. She knows that that is her arm and that is the only one she has according to her. She gets so excited about getting to take a bath, it seems it is the being confined and controlled part of it she doesn't like. To be honest--I don't think pain has a darned thing to do with it right now. As soon as it is loose (she hates the sound of velcro--since mod!) she is fine, happy, splashing. I have seen her shrugging that shoulder which I haven't seen since a few weeks after birth. She wiggles that arm up and down and tries to twist and turn and oh my gosh, just thinking about it makes me tired. So pain--post op pain anyway--doesn't seem to be a real big issue. She wants to be loose, to walk and run and get on with things. And even though Cheryl says this splint stays up better because of the arm position--get the crotch strap, ask her to make it go around the trunk just a tad closer than under the opposite nipple, take the back up just a bit on the affected shoulder (katie's hits just barely above the line where the arm ends) and of course the extra padding and strapping. Out OT dept here doesn't even have that stuff. You know what would help the most--a temp bathing splint w/o the padding then she could play in the water as she wants.

Time off--are you kidding?? Kim did have a date last night though and perhaps that will help her and eventually helps me when she is feeling better. I feel as though I have been grounded by a stubborn two year old tantrum. But it will be Ok. I keep reminding myself of the deformity she had and how much worse it would be getting every day if not for the surgery. We will survive...I have learned that much from this mess..I am really a strong person. WOW.

Definitely talk to Maia and explain why you are having the surgery, I think she may understand a little better than Katie and why it will be very important that she holds still but can still splash around with the other arm while the splint is off. And maybe make a calender for her to mark off the days with some fun things for mile marker days that you two choose together. I think it would be much easier if Katie were not so young.

I will keep you and yours in my thoughts and prayers, Tina, Nicole and Troy too. By the way...seeing Katie spread her hand and fingers wide open for the first time reminds me of why we started this journey in the first place. I plan on sending that so called nerve specialist we have a video to remind him of that "damaged hand" that "will never open up to hold an object".

I'm going to email them and ask about this! Wow - that's a great light bulb!! I hope they can do this. I'll let you know. Also - the calendar idea is another great idea.... we can do special stickers and maybe some weekly small celebrations as each week passes. Thanks so much!!

can you doodle something about this so I can 'see' what you mean?

thanks,
francine

Just one of the straps that you attach in the front, pull up and under the crotch and fasten in the back..same as with the SOL. Cheryl had told us that this splint wouldn't slip and slide as much as the SOL because of the arm position but because it doesnt cover as much of the trunk there is more strapping. The strapping allows movement and slipping, the splint rides up and the arm starts sliding around. I made the crotch strap from the extra strapping she gave us (I should have dug out the old SOL straps) and it has stayed in place much better. It isn't hard to just unvelcro it, change the diaper (or pants) and stick back in place.

Let me know about the bathing splint...if I can find some of that material around here I may make one myself or hire our old OT to do it. It has those holes in it and without the sponge it would allow soapy water to run in and around. Katie is still small so I use a blow up tub and sit on a vanity in the bathroom. But she wants in the big tub so badly and wants to play--the "bathing splint" would allow that and I think after the first time or two she would realize that the changing of the splints lets her play like she wants. Let me know!!!

christy - thanks- I was just confused by the explanation of how the crotch strap goes with the back up and all that.... some day take a picture and let me know. I had a crotch strap for Maia with her SOL and it helped tremendously in the first couple of weeks and then for some reason we didn't need it again...I dunno why though...

I did email about the bathing splint already...I'll let you know what I find out. I hope it's possible.

-francine