Taking nothing for granted

before surgery, but after the "happy juice"

a bright red cast for the newly mobilized arm!

Another splint to keep on just at night time... 

Yes, we're adding to the collection of splints on our body to see how many we can possibly get and still be able to sleep!  It's getting close to impossible!

The surgery was a success!  Brigham now has a working elbow.  one.  Now we have to go back in to put a muscle in that arm and he'll be good to... move his arm!  Dr. P. (surgeon) said that it would be easier for Brigham if we combined his right arm surgery with his left arm muscle transfer.  Less surgeries and less anesthesia sound good to me!

My poor, sweet baby boy.  I feel so sad for him for the things he can't do yet at 14 months old.  But I shouldn't.  He's not a "poor" baby.  He is happy.  I think to a small degree he is aware of the things he can't do.  He gets frustrated because he can't feed himself, but only lets that bother him for so long.  He gets over it, and finds a different way, a new way, a Brigham-way.  He got a baby jeep for Christmas.  He couldn't honk the horn because of the weakness in his arms, until he pushed it with his mouth!  He teaches me everyday about blessings, values, the importance (and unimportance) of things! 

These days I am feeling more than I have ever felt; more pain, more grief, more frustration, more worry, and more fear.  Consequently I am feeling more alive.  I've never felt so happy, so thankful, so blessed, so loved, and so confident than I have since I've been fighting amc dragons for my baby.  And I'm taking nothing for granted because of Brigham.

Finding strength...

I miss and long for the days when I can look at my son and NOT worry about him to the point of an anxiety attack.  I love my baby exactly the way he is, and I would never, EVER trade his so-called "problems" for other conditions.  They all have their ups and downs.  I know Brigham is strong enough to cope with the adversities he deals with on a daily basis, and the ones he will deal with daily for the rest of his life.  I'm not, but he is.  One day he will be able to tell me that himself.  I can't wait to hear his own words of encouragement to me.  "Mom, it's not a big deal, I do it this way all the time..." or "No, don't worry, I've got it..." 

So I find myself getting stronger day by day.  I'm finding strength I would not have found before, because of Brigham.

Orchestrating surgeries and tests

Brigham will be having arm surgery on his left arm (the one with more flexion) to:   
A.  look at his elbow joint and possibly reshape it, and 
B.  lengthen his tendons and muscles in preparation for the "triceps to biceps" transfers later on (both arms).  The first surgery is scheduled for October 22, a week after his first birthday.


Brigham also can't seem to pass his hearing screening for his left ear.  The audiologist says he needs to have an ABR done at Children's Healthcare of Atlanta.  They are going to have to sedate him for that.  I am trying to orchestrate him having that done at the same time he is already sedated during his arm surgery in October.  


We also want to see a geneticist with him, but the soonest appointment they have is in February of 2011!!


When you're pregnant and all you want to do is cuddle and hold your sweet baby when he/she comes, the last thing that crosses your mind is "but how will I find the time to schedule all the needed surgeries and tests, and what if I could find a way to do more than one at a time?" -that is, of course if you have no reason to believe your child will come without abnormal conditions or problems.  And then it's WELCOME to the world of a special needs child!!  :)  I really do love it.  He blesses my life, and is well worth it.  I will continue orchestrating surgeries and tests because of Brigham.

So I've decided to blog

I am a sharing-type person. I love to share news, favorites, recipes, inventions, stories, and all sorts of other things that I may find interesting. I frequently run out of people with whom I can share! -This drives my poor husband crazy because I then tell him the same stories over and over, putting him into a stupor.


So I've decided to blog. It is a perfect solution because I can pretend I am sharing with, and helping hundreds of people when in reality I may just be talking to myself and enjoying it way too much. That's the beauty of it.


And now I'll cut to the chase: my fourth child was born on October 15, 2009 with arthrogryposis (ARTH-row-gripe-OH-siss) Muliplex Congenita (AMC). It affects joints and makes them stiff, and sometimes stuck in one position. I did not know he had this condition until he was born. We named him Brigham, and aside from his arms being fixed in a straightened position, his wrists and hands looking folded and twisted, and his knees that were bent and would not straighten to 90 degrees, and his poor little clubfeet, he's absolutely perfect. The emotions I had were sadness, grief, loss, and worry. People frequently ask me "Well, couldn't you see it on ultrasound?" The answer there would be YES. I could definitely see that he looked different. The ultrasound technician could also tell he was different. I know this because she said things like "Hmmm... that's a funny position, but his spine looks good" "there's nothing wrong" (second ultrasound) "oh, yeah, I remember THIS baby, he's the one who doesn't like the fetal position" (third ultrasound) "Oh, there's that little baby again" I paid extra for 3D pictures that time, but she would only give me pictures of his face, which in hindsight I really should have brought up with her. I could have asked the doctor to look at him, but when you have a certified technician there telling you 'everything is fine' it doesn't cross your mind as much as it does after you learn something really WAS wrong.


 My suggestion to you is: Question EVERYTHING!! ...and if you feel uncomfortable or like a big Meany doing it, just blame me. I won't mind. I just want the awareness to get out there for people like me and so many others who were thrown into this without any previous knowledge of the rare condition called arthrogryposis, how to deal with it, or even how to spell it. To those who feel lost, sad, scared out of their minds, helpless, hopeless, and are worrying, I want to help you through it and perhaps make it a bit easier.


So I've decided to blog... Because of Brigham.