United Brachial Plexus Network, Inc.

Frankie is getting a new split made Dr Nath said he still has alot of stretching to do and he might be in it till Jan only taking it off for an hour or two a day this really bummed him out we thought he would be out of it in 3 weeks and back to a normal life and school just having to sleep in it he is still only at 90 degrees getting Ot/PT 3 times a week did anyone else have to wear it longer then planned ? The up side is he can Shower but thats about it. Mare & Frankie

I had mine for 6 weeks. Thankkfully my Mom came to help with the kids. I did discover how much I already did one handed. The only real problem for me keeping it on so long was I couldn't drive. With my arm out to my side I could only ride in the back seat. (otherwise it would have hit the driver in the head!)

Once the splint was off, I kindof missed it. It was a pain (literally and figuratively) but it became a part of me.

Again I didnt have MQ but it was a similar surgery except I only had one muscle transfered. I was in my first splint for 6 weeks and then got the pillow splint another 6 weeks both were full time. THe only difference being I was allowed to take the pillow splint off to shower and put clothes on underneath. The airplane splint was 6 weeks full time I wasn't allowed to take that one off. After 6 weeks, it was not my friend(kinda smelly) but you do get used to them.

Frankie, dont feel bad, this will only help you!!!
Hugs,
Amy 19 ROBPI from MN

The Ot finished the splint today and we had to go back 2 times once because I hit a bump in the road and it cracked and then because his hand went completely numb so it had to be remolded it has one piece that fits 1/2 way around his chest and stomach then has 3 pieces of coat hanger and 2 hooks that keep the arm raised the arm is also in molded plastic it is quite a sight but he can wear clothes under it and take it off to shower and it doesn't move around like the pillow splint we just have to keep switching splints till he gets used to it. Oh great news last night he was able to put his arm behind his head he had to use the other to put it there but he was thrilled since it could never be moved that high he just laid on the bed with it there talking about how now he would be able to do sit ups like the other kids do.
Mare

Mare,
I love the story about Frankie being able to put the arm behind his head. I think next to two armed hugs that was my favorite recovery moment for me with my son Brandon now eight. My son now sleeps with his hand behind his head all the time. It makes me feel to great because he could not have done that without Dr. Nath's expertise. IT is great to see their accomplishments. I always say that if I would've known that the surgery would accomplish so much, I wouldn't have worried so much about it in the first place....but as mom, I am allowed to worry. GAYLE
GAYLE

Gayle that is just something I would never have dreamed of till now to feel 2 arms around me when frankie hugs me that must have been so wonderful for you like their first words or first step how long ago did Brandon have his surgery?? I have to admit it was weird seeing frankie for the first time with both hands behind his head its sooooo cool. Lots of two handed HUGS Mare & Frankie

Mare,
Brandon had his suregeries young. He had primary at 7 months and Mod Quad at 14 months....which by the way was the youngest that Dr. NAth had done mod quad. Now he does them really early. WE were living in Texas at the time. About 10 minutes from TCH so he asked if we would allow him to do it early. I said"SURE".....he was followed closely by the OT's and PT's at TCH And Dr. Nath would stop in once in a while. I Still to this day remember the look on his face when he took the SOL splint off. Brandon reached up immediatly and touched the back of his head....I guess he had an itch. Dr. Nath had to leave the room. He came back and was doing better. HE said he had never-ever seen a child to that, that soon after getting his splint off. OF course I was boo-hooing....like a little baby, but oh well. Brandon is 8 now and you wouldn't know that he has a BPI unless you really look. HE looks awesome. He has a slight contracture of the elbow....but it is hardly noticeable to others. He really and truly does everything every other kid does and even plays around on the monkey bars like he shouldn't ....but Dr.Nath said that he would stop if it was hurting him. We saw Dr. Nath at a clinic here in Illinois last year and he said....the words every mother wants and needs to hear....NO MORE SURGERIES.... YIPPEEEEEEE !!!!!! The two armed hugs are so awesome. Still 6 years later....I get as many as I Can. I hope things are going good for Frankie...GAYLE

Mare and Gayle,
HOORAY!! Let's Celebrate 2 Handed HUGS!! I am soo happy for Franke, Mare! Be prepared for lots of great moments just like your 1st 2 handed HUG. May you get lots of 'em everyday.

Gayle, I just knew Brandon was a very special Guy, now I know why. A 30 minute consult wuth Dr. N last April gave me alot of information about my own injuries for the very ist time ever AND you have confirmed more for me, some of MY OWN information about Dr.N. UBPN families are sooo lucky to have him available to us.

2 Handed HUGS all around!
Carolyn J
LOBPI,68 & Proud of it!

Question to all???? How long did it take to gain movement after mod quad?? Does most of it occur as soon as the cast comes off or does it come in time??? Frankies back and chest muscles still try to take over.
Hugs to everyone Mare

MAre, for us it is hard to say.....because Brandon didn't have any "BAD HABITS" yet because he was so young. How old is Frankie, or did I miss that part.
LEt me say that we saw pretty much movement right away...but I had already given him motrin before I even took him to get his splint removed. WE were very close to TCH so he went to OT/PT three times a week. There was a little of persuasive therapy involved. In other words....popsicle in his right hand(AFFECTED HAND) and hold his left hand. For a while he ran with his hand in the air.....constantly. As a mother this drove me NUTS !!! sooooo.....his gym teacher worked with him and he is now running with his arm at his side. WE are blessed that Brandon was a acheiver and don't even tell him that he couldn't do something....hence the monkey bars...LOL !!! I think PT AND OT are very inportant however, we lost our insurance when Brandon was 2 and quit formal therpy. We moved on to mom's form of Therapy.....called THERAPLAY !!! LOL Brandon has older siblings and to this day we all drive him crazy with therapy related items. I still go into toys r us and look for therapy toys.....it is a habit. Some does come in later....but we were also waiting for Nerves to grow since he only had primary seven months before MOD !!!! Hope this helps. GAYLE


Carolyn,
I have always thought Dr. Nath was wonderful. HE is so wonderful to come and see our children for free at our convenience, close to our homes. He has never ever pushed anything on us as far as surgical procedures. I would like to add that Brandons injury was moderate to severe so we are lucky he has made the progress he has. What inpresses me is that when we saw Dr. Nath in August of 2005 it had been 5 years since he had seen Brandon....he remembered all of my children's names.....I have four. HE asked how they all were. To me that is an incredible man. He didn't have my son's records with him just a pad of paper. Half the time I don't even remember my own childrens names. LOL GAYLE