I wish I had a pilot's license.

We live REALLY REALLY far away from Houston, Texas. Most of Dr. Nath's patients do. He sees people from all over the planet. So, we decided the best thing to do was fly. We were staying at a hotel with shuttle service, and we weren't on vacation - we weren't planning on having much fun.

We arrived at the airport the suggested 2 hours early, and we wee through security in half an hour. I changed my daughter and we found our gate. She had a little snack while we waited, and everything seemed like smooth sailing. Then, at departure time, we were informed that there was a huge storm in Atlanta and we would be delayed an hour. They assured us that our connecting flights would be delayed as well, and we all went on with our lives. All said, by the time we left Indianapolis, we had been waiting at the airport for 8 hours. Applause shook the plane at takeoff. The flight was uneventful, and we arrived in Atlanta safely. While deplaning, I heard an employee of the airline we were flying saying to a co-worker "They cancelled a bunch of flights to get caught up because of the delay."

The Atlanta airport was crazy. This huge building had hundreds of people camped out everywhere. You could tell that they had all been there for a very, very long time. We arrived at our gate and heard that our flight, of course, had been one of many casualties, and so we got in the appropriate line to find out how this would fixed. We were not given an answered we cared to hear. After waiting in line at the AirTran counter for over an hour (making the grand total of hours spent not travelling so far today 10), we were told, basically, to go screw ourselves. It was the single worst customer-service experience I have ever encountered. It went something like this:

**The following conversation was much more dramatic than the black and white reads. Have some fun with the dialogue. Make mama sound a bit hysterical and very, very loud in your head!

My husband: "We were on a flight to Houston, and it got cancelled, what do we do?" (From here on out, he stands helplessly, frowning at me.)

(Jerky Young Guy avoids eye contact and types stuff on his keyboard.)
Jerky Young Guy: We have no more flights to Houston. The soonest we can get you there is Tuesday.

Me: No. What are we supposed to do?

JYG: Get a hotel.

Me: Are you giving out Hotel Vouchers?

JYG: We aren't doing anything for you.

Me: It's not my fault the flight got cancelled.

JYG: It's not mine, either.

Me: Look, my daughter is getting surgery. On Tuesday. In Houston. We HAVE to be there.

JYG: Shrug

Me: You aren't being very helpful.

JYG: Shrug. Roll eyes.

Me: I would like to speak to your supervisor.

JYG: He'll tell you the same thing.

Me: I'd like to hear it from him.

JYG: Well, you'll have to find him.

Me: You go find him. He's your supervisor. I'll be right here, because I'm not moving.

JYG: Can I see your itenerary?

Husband: Here

JYG: Oh, I see you were on flight #XXX. We have reserved some seats on the last flight to Houston tonight for some of the people from that flight. Let me just print you out a ticket.

Now, had I been smart, I would have reigned in my anger long enough to learn the name of this fabulous young gentleman, but I was not of sound enough mind to do so. If I had been, I would have tried to get him fired. As it was, I was really tired and so I guess I just have to forgive the butt nugget. He decided to become human there at the end. To let my daughter get the surgery she needed. He did the right thing. I just wish he would have done it the right way.

By the time we were at the gate for the next flight, we had about 45 minutes to wait. We were so tired, and so stressed out. I don't think a single one of us ate a morsel of real food that day. And my daughter was so beautifully behaved. She was stuck in a plane or an airport for 17 hours. The only time she got upset was when she woke up at Houston Hobby Airport and I tried to make her walk to the cab. She was just too tired.

We made it to Houston. The long way.

Status: Approved!

Once we got that beautiful piece of mail that said we could, indeed, go to Houston, it all became very real. I was so excited, and so nervous for my baby. I knew we had to do this, but I was afraid it would permanently change her personality. I was worried that she would be this sad, broken little bird in her splint, and that I would never see her beautiful, kind, exuberant personality again. Like the world was going to break my toddler. She had to go through too much that she didn't understand. This, of course, was insane.

Things went really, really quickly once we were approved. The office called to schedule our appointment, and it was only about 7 weeks away. We elected to stay at the Holiday Inn at Houston Medical Center, as they have a small discount for medical visits, as well as a shuttle that will take you anywhere. They offered rooms with Kitchenettes, and had an on-site dining room, too. They were convenient to Houston Hobby Airport so we wouldn't spend a fortune on cabs. While the hotel was convenient, it was NOT cheap, and we decided to stay only 5 days. That meant flying home only a day and a half after surgery, but you do what you gotta do. We felt confident that our pediatrician could handle the aftercare and so it wasn't so scary.

Never has it been so important to make sure you are packing the right things. We were going to live in a tiny room with an unhappy kid with one useful arm. How does one prepare for that? We needed diapers to last five days. That alone took up half a suitcase. Had I known that the hospital provides a pack of diapers, I could have saved myself a lot of space. She needed toys, of course. Things to do on the plane, so as not to make other passengers suicidal. Don't forget entertainment for mom and dad - books and crosswords, a deck of cards. The most important thing to remember, though, was Elenore and Pink Blanket. Elenore is a pink elephant lovey she has slept with since she was a baby, and Pink Blanket is pretty self- explanatory. I was worried we would forget these items at home all week. I did not forget. Perhaps I should trust myself a bit more?

With surgery looming, we wanted to make sure that she was strong and active, so we made sure to do fun things like chase geese and go to Go Bananas! again. We knew that for the foreseeable future, we would be spending a lot of time indoors. The splint couldn't get wet, too hot, or too dirty. It would either shrink, melt, or stink if it did.

That same week, we found a tree with a butt. I don't care who you are, that's funny stuff.

Like Tom Says - The Waiting is the Hardest Part

Health insurance is a blessing. It allows a person to improve their quality of life. It can also be a huge, frustrating mess to deal with if you actually want to use it. Our daughter's health insurance comes from a large, well-known insurance provider. A large, well-known, slow-to-decide, difficult to talk to, insurance provider. I was a little intimidated about getting out-of-state surgery approved. I thought I would have to do most of the begging.

Once we had decided to do this, there really wasn't any turning back. We had our minds made up, and we were going to find a way, even if it meant knocking on the doors of strangers. As we began the process, the staff at the doctor's office explained that they would be making all the arrangements through our insurance company. I was relieved at first, but, let's face it, I'm a control freak. If you hadn't figured that out yet, you may need to read more closely. It's hard to sit around and wait while strangers decide fate of your kid. I mean, I know she's this awesome person who deserves the life she was intended to have. But, do they? Do they know she loves dogs and balls and babies - and that all dogs, balls, and babies will be better off for having played with her? I was just afraid the insurance would turn down this relatively anonymous, invisible kid. And then what was I going to do?


I wasn't able to let it be, and my sweet husband was a good sport. He would call the doctor's office as much as I asked him to. I asked him to a lot, because he's better at it. And he certainly won't burst into tears at any given moment. We learned a lot of things as we waited. 1.) The cost of BPI surgery is astronomical. It would take years and years and years to raise that type of cash to pay for it yourself. 2.) That there are avenues to take if you don't get approved; it's not the end. 3.) You might get approved, but it might be out-of-network, costing about twice as much.


It's kind of like unravelling a ball of yarn. Sometimes it goes really fast, and sometimes it goes really slow. Sometimes you get stuck for awhile on a knot, or you can't find the right trail. The waiting, for me, was the worst. We would get a lot of reassurances from the nurses that it just takes awhile, and they were really great at keeping us updated. Probably because we wouldn't leave 'em alone.


We went to our pediatrician to get a referral for the insurance, in case they asked for it. It was a weird visit. Basically, he had said he wouldn't give us a referral without talking to us, so we had to pay the $25 bucks it takes to see the doctor. He was supportive right away, so I think he was just being nosy. He is obsessed with Dr. Nath's website. He thinks it's this wondrous place of high-tech-ness or something. He kept saying "cutting-edge" and making other excited utterances. It was funny. He did offer some valuable tips on travel and post-surgery care, and he continues to be very interested in my child's progress to this day.


It seemed like every day we got something in the mail from the insurance company. Jerks. Never the thing we were waiting for, but letters and mailings that said things that sounded promising. We began to brainstorm ways to make money. Garage sales, concerts, events, collection cans, car washes. It would take a lot of car washes. And that was just for the first surgery. We need three. There is really just no realistic way to pay for this out of pocket, unless you happen to be a frequent dinner guest of Brad and Angelina.


What we were waiting for, it turns out, is a negotiation. This insurance company operated differently in our state than in Texas. So, he was not in network. IN OUR STATE. But, he was in network for THE SAME company in his own state. That seems like it would be easily transferred, but that is not the case.

As it turns out, technically anyone can see any doctor on the planet they want, if the stars align and everyone involved is in an agreeable mood on the particular day of the negotiation. As I understand it, the doctor asks the insurance company to please allow you to be his patient. Then, the insurance company says, "Well, maybe, honey, what's your bottom line?" The doctor says he wants to get paid $XXXXX.XX. Next, the insurance company says no way, that's too much." The Doctor lowers his cost, and a marriage is made. The doctor signs on the line, the insurance raises your premium, and next thing you know, you are stuck in an airport for 12 hours, clutching the checkbook that is the direct line to every last penny you have, soon to be given over in gratitude to a man who will permanently scar your child. All that hard work, anticipation, unravelling, was worth it.

Hurry Up and Wait!

Chicago was no fun for anyone. We tried to go out and enjoy this beautiful city, but it was sort of a foggy time for my husband and I, and I think our kid was just hungry. We couldn't find a restaurant with a highchair in the part of the city we had come to. People looked at our child like she was a hairy green monster. We were ready to go home.

Once we got home, we tried to adjust to the idea of putting our kid through surgery in an unfamiliar place when she doesn't understand what is happening. We weighed the pros and cons. We discussed waiting until she was older. We made up and changed our minds, together and separately, 168 times. In the end, we decided do it. Of course we did.

Nothing is that easy, though, is it? What fun would it be if it all went easily and smoothly? Admittedly, I myself made it more stressful than was necessary. But, I'm a mom. Give me a break. As it turns out, you can't just hop on the next available plane to Houston, Texas, and hand them your insurance card. There are hoops. You must jump through the hoops. By jumping, I mostly mean, sit around and worry about it while other people take care of it for you. Because there really isn't much you can do at first.

During the first year of our daughter's life, we had to appeal to her insurance company in order to have Erb's Palsy care at all. They were of the opinion that it was a pre-existing condition. It was the wrong opinion, but we had to prove it. We did. It wasn't really very difficult, and the process was well worth it. For directions on how to appeal, call the customer service number on your insurance card. It was such a relief to know that at least that battle had already been fought and won.

So, the next step was to fax our insurance information to Dr. Nath's office in Houston and to obtain a referral from our pediatrician at home, in case it would come in handy at a later date. Our pediatrician was not willing to do so without seeing us, so off we went. Once we got there, it was clear he was mostly being nosy and just wanted to make sure we were sure we wanted to do this. The referral was easy to get, and, as it turned out, not really necessary in our case.

While we waited to hear from the doctor's office and insurance, we began to make preparations. Most of them were for mandatory fun before the trip and the surgery. We figured that our daughter was going to be in some sort of funky splint and wouldn't have use of her left arm at all. So...we played!

We went to our favorite hang-out in town, Go Bananas! She's not even two, and this strong girl can climb to the top of those inflatable slides and go down by herself! That's Daddy behind her, keeping her safe like daddies do. We knew this was good exercise for her arm, and we wanted her to be in good shape going in to surgery. She didn't complain.

We played with the hose a lot, because you can't get that splint wet. She loves to splash around in cold water, but hates a bath!

We spent lots of time making two-handed masterpieces and body art.

We had ice cream, because Ice Cream makes you forget your troubles!

Road Trip

As we prepared to leave for Chicago, there were many times we almost changed our minds. All the doctors we had seen had told us that our daughter would be fine, or was as fine as she was going to get. What was the point, right? Here we were, preparing to drive 4 hours away to hear yet ANOTHER doctor tell us things were fine. To stop worrying. To get over it and just enjoy my kid already, because these were the cards we were dealt. Live with it, mama, let it go.



We almost didn't go at all. We didn't have the money, really, to pay for gas and a hotel stay. We considered what a pain it would be to entertain a toddler in a car for 4 hours. We went anyway. I felt like I had been led to find this opportunity to meet this top doctor by fate. By God. It wasn't something I had really been pursuing with any great fervor for several months. Then, one day, I decided to listen to nagging little voice that was telling me that there was more I could do for my daughter. I did more research. I found this doctor, and he was about to come to ME. Of course we should go. If nothing else, it would be a wonderful blessing to hear from Dr. Nath, a REAL expert in BPI, that our daughter was just dandy.

The drive to Chicago was pretty uneventful. We never got lost, ran out of gas, or picked up any hitchhikers. Our daughter was pretty content, though you could tell she was getting restless near the end. In choosing our accommodations, I had signed up for one of those online deals that gives you a four star hotel room for a flat fee if you don't care where you stay, and we happened to land a room in the hotel where we would be visiting the doctor. And they let us check in early. We wandered around for awhile, met some nice people, and then it was our turn.

We went into the room in good spirits, and told Dr. Nath our story. Almost immediately, he pulled up anonymous photos of other patients on his computer. He zeroed in on a young girl and pointed out the similarities to my daughter. It was as identical as you can expect in such a varied condition. This girl's left arm looked like my girl's left arm. See, I KNEW something was wrong!

Dr. Nath started talking about surgery. I started crying. My husband looked on with a sort of befuddled look on his face. I'm sure it was a flattering time for us. Yes, we had gone looking for answers, but really, we just wanted him to tell us what all the others had. How's that for irony? I'm mad at the other doctors for saying she's fine, but I want THIS one to say it, too. He showed us the after pictures of this girl. She looks amazing. Wonderful. A freakin' miracle. She has full function of her arm.

In only ten minutes, though we were completely devastated, we had become so relieved. This was an answer, finally. Hope. The best thing we could ever do for our daughter, probably in her lifetime. And she wasn't even 2 yet.


So, in our fog, we asked a lot of questions; here are the few I can remember:
Q. Would therapy alone ever allow her to have full function of her arm?
A. No, her issues stem from the placement of the bones in her arm, and from contracted muscles. When she was delivered, her arm was most likely twisted, and the bones became misaligned.

Q. What were the possible long-term outcomes if we chose not to have surgery?
A. Early-onset arthritis, continued decreased function of the limb, shortening of the arm, uneven growth rates, muscle contractions, muscle weakness.

Q. Would there be only one surgery?
A. Every child is different. Ours would need three.

Q. Why has this never been mentioned?
A. Most doctors are not aware of the long-term effects because they don't see enough kids or see them for a long enough time.

Q. How long do we have to get the procedures done and have the best outcomes?
A. The younger the child, the better chance for near-normal recovery. Erb's Palsy can become more complicated as children grow.

Dr. Nath's method is relatively new in the medical world, and he is the only one in the country practicing it. While he's famous in Houston, most people have never heard of him, until they get desperate enough for answers. He spent time with us, and seemed genuinely to care about how our kid turned out. He was compassionate, and showed enough outrage that this happens at all, that we just immediately trusted him. He was so confident and informative that we knew right away this was our doctor.

Consider This

We spent the next months in therapy, at doctor's appointments. We spent a lot of time in Wal-mart, buying stuff we felt like we needed for her therapy. Like, if we just found the right magical toy combination, she would be so enamored by it, she wouldn't be able to stop herself from using her left arm normally. The truth is probably more like this: if I was out getting these things, I was helping. I was doing something about it. Every few hours, we had a whole therapy routine, and it was wearing on us all. It was hard. We didn't feel that we could just play with our kid, we had to make sure it was left-arm related. It was never fun for the sake of fun. No silliness. My husband, he was better about the silliness. If I didn't yell at him to do her exercises instead. If I could go back, I would change that. I would play. Let go. Especially since for so long, there just wasn't any improvement. She continued to grow, and to learn, but that stubborn arm wasn't giving us any more progress.
I was confused, because what I was being told, for the most part, was that she was fine. But, she WASN'T fine, and all you had to do was look at her to know it. As she got older, her injury began to give itself away more. Her behaviors couldn't really be traced to just baby actions anymore. She tried harder to make more specific movements, but the ability just wasn't there. I asked every medical professional I came across what their opinion was. Oftentimes, I would get a condescending look and an assurance that my baby wasn't the only one with problems. That I was lucky, because at least she could move her arm. Like I was so ungrateful to need more than that for my kid.
As my daughter's first birthday began to approach, I noticed that she had plateaued and that we were seeing no results. I thought, surely, something else is wrong. It can't all be muscle imbalances. She is muscular, she is so strong. There must be some other obstacle in her way, making it impossible for her to master these movements.

I began the research again, this time looking more closely at surgical options. It was obvious that therapy alone was not going to do the trick. I came across Dr. Rahul Nath in Houston, TX. I had heard of him before, but he was so far away it didn't seem like a viable option. So began the next leg of our very long journey. I studied his website. I studied the man. I made an appointment to see him in Chicago.

Like I said before; having a baby changes everything. You don't know it until it happens, but it is completely clear immediately. Your life will never be the same. This little person, who is of you, has come barging into your life in the most welcome way. For the whole pregnancy, you have been dreaming sweet baby dreams of lullibies and diapers that smell like Daisies. Perfection. Pink-ness. That is all a fantasy, though. I'm sure most mothers would agree.


After the birth, what you are left with is reality. What I was left with was a baby who cried just enough to ensure I never really got to sleep, but never in the company of others. Man, that was irritating. To hear, "does she ever cry?" Of COURSE she does! She is just messing with you!

I was also left with a sadness when I realized I couldn't dress up my new doll in tiny baby clothes, because for the first three weeks, she had to have her arm splinted to her shirt. My hormones were insane, and I had to wonder if my child would ever have control over her once-perfect arm. If she could be the famous guitarist, the horse trainer, the waitress, the (insert noun here) that she wanted to be. If I had strength enough to be the mother of a beautiful girl with such a devastating and unexpected challenge.

It's really hard not to ask "why me?" I do it all the time. "Why her?" Please, God, let me take her place. Please, make her stop hurting. Please, make her whole again. The worst was when she would get upset because it was time for therapy. Sometimes I cried with her. It just wasn't any fun, and you couldn't reason reason with an infant. It was so hard those first few months, and people kept trying to be comforting. The thing is, people don't get it. They don't know what Erb's Palsy is. They don't know that it can be devastating. That there was no time to prepare our hearts and our heads for this thing that was suddenly a part of our lives.

So, we did the best we could. We continued to learn about it, and we continued to seek help. By we, I mean mostly myself. I think as a mother, you are less likely to just let things be and see what happens. There is no question that my husband loves his daughter immensely and wants the very best for her. She is our world now. But, I think husbands are often times content with what the "experts" say, and not as likely to go digging around. To accept that their child will have these limitations in their life, and that we had done all there was to do. I love him for that; for his willingness to love that child unconditionally, without question, without guilt or regret.

I don't what caused me to keep looking for answers. I didn't feel good about what the doctors were saying. I didn't believe them. How could they know, when they spent only 4 minutes in front of my child? A child too young to follow directions, a child sitting in her mother's lap? How can one make any type of VALID assessment in that time, in that environment? I just didn't believe 'em.

We went to church, and I tried to find the answers there. What was the right thing to do? How would I know? I prayed God would lead me in a direction that made sense, that provided answers, that made a difference in my child's progress. That made a difference in our lives. A miracle. To be honest, we still struggle quite a bit with faith. We were baptized when I was only days pregnant, and we have come a long way. But, it's very hard to not be mad at God. But, we keep trying.

She just kept growing

Because my daughter has Erb's Palsy, there were lots of little things in her development that were different than a typical full-term child. Developmental delays, though, are typical with Erb's Palsy, and I anticipated that physically, she would come along a bit slower than other kids as she worked to regain muscle strength in her left arm. We were thrilled that she could reach her mouth by now!

My daughter was unable to do tummy time for a long while, because she did not have the arm strength to push herself up at all. Her neck muscles had been traumatized from the birth, and she had torticollis, making it difficult for her to move her neck on the right. Torticollis doesn't only happen to BPI kids, and there are simple exercises to do to loosen the muscles and allow normal neck function on a continuous basis. Once we did those, she could move her neck just fine, but her arm still lacked the strength to support her during tummy time.

By 7 months, though, she could do it:



...what a blessed thing for our happy family!

My daughter did not roll over on her own until she was already walking. Even though her therapist and I worked with her extensively, she just had no interest in it. I don't claim to be the baby whisperer, but I think the reason for this is because babies choose to do what is easier. It is a survival technique. They don't have the time to be frustrated when they can solve the problem another way. My daughter's therapist points out that they are required at a younger age to use problem-solving, and so these kids get so smart, so fast. When you are good at so many things, why would you want to waste your energy on something you aren't able to master due to your limitations? I don't think I would work too hard at it, either.

There are, of course, consequences to developmental delays, and there are ways to minimize them. My daughters head began to become VERY flat. This is a condition known as Plagiocephaly, or "flat head syndrome." It happens when a baby spends most of their time on their back. The "Back to Sleep" campaign has helped us to fight SIDS, but not Plagiocephaly. We went to see a pediatric neurosurgeon, and he informed us that her head was not severe enough to need a helmet, but he did suggest that she was old enough to sleep on her tummy now, and so we began to reposition her during sleep. A year later, you can not tell at all that my daughter had a problem with plagiocephaly. Going to the doctor is a great idea, and there are many treatment options. If you are dealing with this, may I suggest also http://shopboppy.com/shop/index.php?main_page=product_info&cPath=5&products_id=14&zenid=ff2db94c070966016803ea4609614c35. It will bring you peace of mind while you deal with the bigger issues, like what to do about Erb's Palsy. Or, what kind of music you want to listen to today.

My daughter began crawling at 8 months old. Sort of. She used her arms in the normal crawling fashion, but she used her right FOOT and left knee to scoot about on the floor. While it was cute, it was necessary to always keep her in pants so that she would not get rug burn on the left leg she was dragging around behind her. We also worked on that in therapy, but she would never crawl normally until AFTER she began walking.

When you look at the big picture, none of these quirks are that big a deal, but when you as a mother see your child struggle, it hurts your heart. In the end, though, my child has ended up being so bright and funny, and I know she can do anything. Physically, she is far beyond her peers. She can climb anything, she can run so fast, she can jump. She can walk on her tiptoes, too. Which she does often, while sneaking around the house creating chaos in her wake. Sounds plenty normal to me.

Did you see that?

I remember the exact moment my daughter bent her elbow for the first time. It was kind of unreal. The reward for hoping. The realization of prayer. It wasn't a dream, though, it really happened. As my daughter lay happily underneath the dangling toys of her play gym, she was finally determined enough to grab that toy she wanted. With her left hand. And then, she let go. And SHE BENT HER ELBOW! I squealed with joy. "Did you SEE that?????" I breathlessly asked my husband. He did. He had seen it, too. It happened. I called my friends. I called my mom. As usual, I cried. And then we spent the rest of the evening discussing how it could have been a phenomenon of gravity, and maybe we shouldn't get our hopes up. She was ten weeks old at the time, and we thought that meant that she would make a full spontaneous recovery. That's what the research had told us.

It would be two long days before she would bend that elbow again. But, once she got the hang of it, it was as if she had been doing it since day one. She had aim and precision, she could achieve her goals. Her left arm was not as strong as her right, of course, but over time, it would build up muscle again. A person off the street would never know there was a problem with my precious child. What a wonderful thing to celebrate. The return of normalcy, if only a little. Relief. I could let go of some of the guilt, at least. My child had function of her arm, when there was once a very real possibility that that may never happen.

At six months old, it was time to make the rounds to the doctor's again. We looked forward to showing them her progress, and getting feedback as to what we could do to help her in her recovery. We knew that she would need therapy for several years to improve her muscle bulk. We were hoping for some tests, a peek inside, to see what was happening. What we got, however, was the same as before. Some kids get better, some don't. She probably won't ever play sports, but she'll be just fine. You'll just have to wait and see. There really isn't anything more we can do. I suspect she will recover fully. No surgery. Blah, blah, blah. Twenty-five dollars, please.

It was this visit that made us decide that we didn't need two doctors to look at our kid for 45 seconds after waiting in the office for an hour. If they both agreed, and surely they were right, that she was fine, we could drop one the doctors. And so we did. That doctor would continue to assure us over the next 6 months,that our little girl was doing great, that she was the best-case scenario for this injury, that she would be doing cartwheels in no time. This great doctor, the EXPERT in his field in our state, the PEDIATRIC ORTHOPAEDIC MICRO SURGEON FOR THE HAND AND UPPER EXTREMITY told us she was peachy. Why then, did our daughter walk around with her arm bent in the air? Why then, did she never quite straighten it all the way? Why was her scapula winging out in the back, if this child is so fully recovered? Why can't she turn her hand over?

We were sent home with no real answers to these questions. With no input on where we might be able to find the answers. So, we went home. And I kept trying to find the answers.

And so we wait...

When something traumatic happens to us or our loved ones, we don't usually just want to sit around and wait for the horror of it all to pass us by. We want to DO something. While I waited on appointments to come through, and therapist evaluations, and red tape to be managed, I began to research.

The research can be scary. It can be confusing, it can be disheartening. It can be misleading. There is so much information out there, but still so little is known. Most of the things I came across all said the same things. No real insight. No real peek into the life of an adult with this disability. There was a lot of vague, superficial mention of medical procedures and appropriate time frames to wait, but nothing ever really provided much information on the long-term prognosis of Erb's Palsy. Basically, it all said this: most kids turn out okay, but some don't. I wanted to know everything; I needed to see into my child's future.

We came across Dr. Nath's website, and though I didn't know he would eventually be my hero, it looked to me like he knew what he was doing, so we began our own version of physical therapy while we waited for an evaluation and approval from our early intervention program. We didn't know what to do exactly, but we had read that it was important to keep the muscles of the affected limb loose and limber. If one does not do so, the muscles in the arm can contract, become tight, or atrophy; this means more work for you and your little one in the long run. We used the exercises I found here: http://www.drnathbrachialplexus.com/babyrom/babyrom.php. We did them several times a day and found that the baby did not complain. It made us feel so much better to finally be taking an active role in her recovery.

Our doctor took forever filing the paperwork for First Steps, Indiana's Early Intervention. So, we called the office ourselves and found that you could refer your child for an evaluation yourself. Soon after that, a coordinator is sent to your home, and then you have an evaluation. You can ask lots of questions, and they will spend time with your child. My baby did a great job, and the people that came were so professional. Most of these people are parents themselves, and lots of them begin working there after positive experiences in their own families. They were helpful in helping to choose the right therapists for us, and it was all a quick process.

By two months old, my daughter was having once weekly visits for therapy. They would show me what to do, teach me techniques and distraction methods, and give me a weekly report on how my child was progressing. Since then, my daughter and her therapist have become friends, and she looks forward to her visits.

Then, just when it seemed that my once-normal life would forever be invaded by doctor's appointments and therapy, things began to settle down. We had time to watch our beautiful daughter learn to laugh, learn to love, discover the dog. Everyone tells you they grow so fast, but you don't really understand until it happens.