What was that about "slow and steady?" Makes you crazy?

For awhile, we just waited. By now, we were getting pretty good at waiting, so we did that. Texas was warm, and we didn't think much about what we would dress our daugter in. We spent a lot of time in the room, and I figured out a weird wrapping technique with a sleeve-tucking trick for the times we were desperate enough to go out. But, what do you dress a cold-weather kid in after the triangle tilt, or some other procedure that leaves them in a splint you can't remove? First, we got some fleece and cut a hole in it for her head and her mobile arm. That worked just fine for around the house, or even as a substitute for a coat, but wasn't very practical in the whole scheme of things. My sister-in-law came up with the idea we eventually expanded on.

We went to Goodwill and bought sweatshirts, and cut the seam from the waist to underneath the wrist. Then, I stitched on ribbon to tie around the brace in three places on each side of the cut seam . I AM NOT CRAFTY. I find crafts and sewing, etc to be VERY tedious. This was easy and functional but only works for sweatshirt-type material. My friend Leah, who is much better at this kind of stuff, made beautiful clothes for her daughter post Triangle Tilt.

For the first three weeks after surgery, recovery is slow and can be a little painful for everyone. My husband and I were afraid at first to remove any part of the SARO brace because we didn't want to screw it up. Of course, you suck it up and do it anyway, because you don't want your kid to get moldy, now, do you? For the first week we let her Occupational Therapist keep it clean, but I knew I had to be able to do it. So, I did. And it wasn't so bad. If you only move one strap at a time, there is virtually no way you can do it wrong. I told my husband that I didn't like being responsible for the placement of her arm when putting it back in, and he laughed at my paranoia. I don't think khe ever did it himeself after that, either, though. I know that the way it looks after the Triangle Tilt is going to determine if we are done doing surgery. Silly, I know, that I can feel so responsible for it, but still I do. I always do. I always will. I just try to focus on what has to be done about it now. And now is the time be brave and do what I have to do for my daughter. So, I bathed the arm with the rest of her in sponge baths, and used that stupid no-rinse shampoo I hate and that takes the curl out of her hair.

I watched her continue to grow and learn. You would not believe the things this kid says! She is so smart, and her language just EXPLODED when she was recovering in her splint. It was like, all of sudden, with these physical limitations, she had time to talk. She went from two word sentences to conversations. She is amazing. Clearly brilliant. Inspiring. Probably the next Barack Obama. I'm sure she is on her way to starting a revolution. She has ideas, people.

I hope we NEVER have to come back!

The Triangle Tilt is a lot harder to recover from than the Mod Quad. My child had had bones adjusted, shaved, and reconstructed. Her splint weighs a significant amount more this time than the last. I wonder if she will have stiff muscles from trying to stand upright. She's just so little and this thing is so big. You can see her trunk compensate for the weight and angle of the SARO Splint.

It was difficult for her at first; she was so much more aware of what was happening this time. She didn't complain, though. She doesn't complain. She just moves on. She's simply too busy, it seems, to be bothered with this one-handed business.

By the time Friday rolled around, we were ALL ready to get out of that room. We were bored to tears and sick of each other. I would be lying if I said I didn't shed some tears over the close quarters. There was simply nowhere for any of us to go in there. I was flying home with our precious cargo, and my husband would drive our car back home. It had been a blessing to have our car while we were in Houston, but I wished my husband could fly home with us. We simply could not afford the extra plane tickets for us all to fly, though. Instead, he dropped us off at Houston Hobby and was on the road before we were in the air.

The trip home was uneventful; a nice change from the experience we had flying in July. Aside from a gate change that caused me momentary panic, there was nothing to report. My child, though difficult to dress, was an angel, and my parents picked us up.

We had spent the week bribing our daughter to use the potty again, because she had stopped right before our trip to Texas. Our beloved dog had died, and our daughter missed her best friend. To make sure we knew it, she decided she would take matters into her own hands and rebel. So, we promised her a puppy. What can I say? We were desperate. Once you have had a potty-trained kid, you do NOT care to go back. It is an indescribable joy, to have a potty-trained toddler. She wasn't even 2 yet. I was not above bribery. It seemed to work. By the time we were on the plane home, every time you sat her down on the toilet, she would pee and say " I want a puppy." She got it. She knew what she was doing. Puppies come from peeing in the potty.

We were home by noon. It was wonderful to be back. We prepared for said puppy, visited all the toys we had missed while we were gone (I had put up all the toys requiring two hands before we left), and demanded to know where Daddy was. To my surprise, he was home before midnight that same night. While I don't recommend that you send your spouse on a cross-country drive alone, but I was seriously thrilled that he got home the same day I did. We were all so emotional and exhausted. We needed to be together, even though we couldn't stand to look at each other anymore!

Warning: Do not be fooled. A nearly two-year-old with an immobilized arm is NOT slower-moving than a two-armed tot. A child in this contraption has been given a weapon. There is now a club on her arm. Beware the spinning Triangle Tilt Survivor. There will be certain destruction. There will be climbing. There will be havoc wreaked!

We had survived yet another trial. We were home. She was going to be okay.

And maybe we won't need that third surgery after all. Guess it's back to waiting. Soon we will see what that arm can do.

Tough Toddler Times Two

5 a.m. comes quickly, especially when you don't want it to. It was time to starve our kid again, but first she was allowed a clear fluid for a few minutes. Of course, for the first time in her life, this child did NOT want to drink Sprite. It was so frustrating. Lucky for us, time flies when you're having fun, so we were on the road and on our way.

It really wasn't as bad this time. I mean, it was kind of bad, but for different reasons this time. We had to wait FOREVER. Again. Looking for a nightmare? Picture this: You are stuck in a small area with a lot of very boring toys, two toddlers who apparently mix as well as oil and water, and two other fairly nervous parents. And, lets not forget, these kids are STARVING!!! So, my kid beats up the other kid every time he picks up a toy, and the other parent just keeps telling her son to give her what she wants. Great. No number of no's can beat one yes when you are two. It's a fact of life.

(Cue Heavenly Music) They bring the happy juice!!! We think, surely the rest of the wait will be a blissful and silly time like last time. Not so. Now my kid has turned into an angry drunk. That was a blast. The not-so happy juice took effect and wore off without any sign of someone coming to get us. We were soon informed that the doctor was called away for some meeting, and he would be back whenever that was over. Did I mention you do a lot of waiting on this journey? Might be smart to bring a book.

The nurse offered more happy juice, which I thought I said yes to, but we never got more. So. Whatever that means. It made her evil, but it took her mind off of her empty belly. Eventually, "they" came once again and took her away. We were starving, because we felt guilty eating anything, so we got a pager at the waiting room desk and went to the cafe. The food seemed like it tasted better this time, but it was probably just because we were more comfortable. We trust Dr. Nath so much; she couldn't be in better hands, and we knew what to expect when she woke up.

We knew it would be bad, but the waking up this time was a lot worse. She was really upset, and much more aware of what was happening this time, yet unable to voice her concerns that she wasn't able to move her left arm anymore. We tried to hold her for awhile, but found that it was most comfortable for her if she were on the bed. She mumbled deliriously about her need for stickers and drank some juice and fell asleep.

There was a long wait for a bed at Memorial Hermann Children's, so we waited in recovery forever, too. She woke up and ate some banana, and finally we were moved upstairs. It was all basically the same, but it didn't seem as...organized where we were roomed. There wasn't a pull out chair bed for one parent to sleep in, there weren't any baby supplies laying out nicely. It was clean, just not as welcoming. I think we were spoiled with the staff that took care of us the first night of the first surgery and we maybe had unrealistic expectations about the accommodations. In any case, it wasn't the same.

They did find us a bed to sleep in, six hours later. Our daughter was up more and interested in playing the same day as her surgery. We weren't prepared for that, and she was terribly bored for awhile. We grabbed some toys from the playroom and carjacked the little tikes car she loved the last time and played until dinner. Having learned our lesson, we left while she slept to get something to eat. We did not feel a need to be by her bedside every second this time. How often do you get the chance to leave your sleeping child in the hands of some of the best medical staff in the country so you can have dinner?

The rest is kind of a blur. It goes so quickly, and you spend so much of yourself worrying about everything that you don't really live in the moment. We slept and watched tv, I think we played cards? We loved our baby and met her every need and tried to act like we were having the time of our lives for her.

Countdown to the Meltdown...

Saw a cow playing a guitar...seems like something you share.
As with the Mod Quad, the day before Triangle Tilt surgery, we had some pre-op appointments. We asked Jill (our GPS) to take us to Dynamic Orthotics, and we were there for a pretty long time. We had sent in some measurements ahead of time, so that the splint our daughter would wear over the next year was made before we arrived. They had a great play area, so waiting wasn't a big deal, and the staff was great. They took good care of our daughter, and we were confident when we left that these people knew what they were talking about. After spending so much time with people who claimed to know more than they did, it was nice to speak to people who deal with BPI on a daily basis.

We had an appointment with Dr. Nath that afternoon. This time was more fun than the last, because by now we were just happy to see familiar faces. The staff at Texas Nerve and Paralysis Institute is so professional, and so empathetic. The doctor himself has a bedside manner that would blow you away. In Houston, people will tell you "Dr. Nath is famous," but you would never know it to be standing next to him. He is truly my hero. The nurses on staff took some photos of our daughter as she used her affected arm to reach for things, and it all seemed just like a game. Always be prepared to wait at the doctor's office. Remember to bring your own entertainment and snacks. Be mindful that in a day, he helps so many people just like you. But, to see the Good Doctor, you will have to wait, just like everyone else!

We asked our questions, which were few, since we had seen him a few weeks ago, and he gave the details of the operation and instructions to follow in the morning. My husband and I were so surprised by how much better we felt this time. We weren't as nervous, though we were definitely still stressed out. We were REALLY tired from the drive, and as I write this over a week later, we are STILL tired from the time change and the emotional energy it takes to get your kid through surgery in the most positive way you can muster. After an early dinner it was bath and bed for everyone, because we were to be at the hospital at 7:00 a.m.

Whose Idea was it to Drive to Texas, Anyway?

Two weeks goes by really, really fast when you don't want to do something that is coming up. Before we knew it, it was time to get ready to go to Houston. Again. I found myself doing a lot of really menial tasks and never really accomplishing anything. I was trying to keep my mind off the impending surgery by organizing the craft box or the bookshelf in the computer room. It wasn't the most effective cleaning strategy, but it did help distract for a time.

I packed a few things, but knew that we wouldn't see many of the same people twice, and
I had made reservations at an extended-stay place because it was inexpensive and offered a laundry facility. With all of the things we would need during our stay, it was important to pack as lightly as possible (i.e. two rolling suitcases, 4 large canvas bags, and a small pink Hello Kitty backpack.) We needed a potty seat in the back seat, a portable dvd player, and snack, snacks, snacks.

There was a kitchen in our room, so we wouldn't have to take the baby out too much following her surgery. She could rest as needed, and, to be honest, the staring gets old really quickly. I don't really care for the pity, or the smart-ass remarks I hear from people, saying "Uh-oh, did your mom do that to you?" or something equally insulting. I don't mind the opportunity to educate someone on BPI; I am passionate about it, in fact. But, why not just ask? Why is it necessary to look at us as if we are less than a normal, loving family doing the best we can. As if there isn't enough guilt. YES, in fact, I did do this to her. I chose it for her, because she cannot choose it for herself. But, I did it because of love. I didn't just push her down the stairs or something.

Of course, these things are always harder on the parents than the children. When people stare, she smiles. She giggles. She waves. She's happy. She doesn't know any better. It's my favorite thing about her right now, at 23 months old. She just loves. Go, ahead, stare at her. If she chooses not to smack you in the face (which could very well happen), she will just be happy for the attention. It would never occur to her that she looks any different. What would you give to truly feel that way? Happy to be you, no matter what. I don't think there is much I wouldn't give. This Erb's Palsy thing teaches me something every day.

So, in we go, all of us, our potty, and our snacks. Our cds, our movies. Ourselves. Off to see our friend, our hero Dr. Nath. I dreaded the drive. I did not want to be stuck in an Impala with my husband and a 2 year-old, but it just made the most money sense. And guess who married a finance guy? We chose to drive through the night, so that our daughter would sleep through themajority of the 17 hour drive. Even though I don't think I slept a bit, it was completely worth it. To not fight to entertain a toddler strapped in a seat for a ride across the country, it was worth every wink I missed.

The whole drive was surprisingly uneventful, and we arrived in Hoston the next morning. Where we realized something. We couldn't check into our hotel until 2:00. Oops. We had a lot of time to kill, and we were exhausted. We visited a park and fed some ducks, and ate, but all my husband and I really wanted to do was sleep. So, when driving through the night, you might consider your arrival time!

Never Try to Leave Chicago at Rush Hour.

Okay, round one was over, but we knew that we had another surgery coming up. We increased our daughters Occupational Therapy to twice a week, and continued to work with her as she healed. We were given instructions on stretching exercises, and also advised of the ways we should NOT force movement. Our OT was awesome, and kept in touch with the staff at Texas Nerve and Paralysis Institute to make sure we were on track.

Our daughter thrived after theMod Quad surgery. She was able to raise her arm higher in just a matter of weeks, and was playing normally all day long within a month. She began to hold her arm down more instead of in a trumpeted position. There were a million tiny improvements, things that no one would really notice, but that were just tiny little blessings. She became stronger, more independent. I don't think she even remembered any of it after awhile. All there was to remember it by is a long scar in her underarm. Over time, and with the help of Vitamin E and Mederma, it will fade nicely. A small price to pay for mobility.

Before we knew it, it was time to see the good doctor in Chicago again. We made plans with another BPI family, and all stayed together for the weekend. The girls had a blast, and we were able to confirm that our daughter was ready for the more extensive surgery, called the Triangle Tilt. It is a much more involved surgery, and we wanted to make sure that she was in the best shape possible before making her arm immobile for a time. We also got to see her CT Scan results, and he explained the surgery in detail. We asked our questions and felt more prepared. Two weeks to go. Houston or bust.

It was our last big Hurrah, so we went to Navy Pier. We went to the Chicago Children's Museum (this place is AWESOME for toddlers!), and the Build-a-Bear workshop (beware the Build-a-Bear money pit!). We had our daughter choose a bear and its clothes, and she even picked out a little cast for its arm. We named her Erby and put her away for a gift after the Triangle Tilt.

We were as ready as we were going to get. It was time to wait. Again.

We're hooo-oooome!

By the time we were leaving the hotel to come back home, our daughter was allowed to be out of her splint. The doctor said we could put her in it if she seemed uncomfortable, but to otherwise allow her to use her arm as much she wanted.

The plane trip back home was uneventful, which was just fine with us! We had used Park, Ride, and Fly, a valet service, so our car was ready for us when we returned. I highly recommend that anyone flying a difficult journey use this service! It just took the stress of airport parking right out of the equation.

The drive home seemed to take forever. We were in rush hour traffic, and all we wanted to do was get home to our dog. Our church was providing us with dinner for a few days, and we didn't want to miss that meal!

If you ever wonder if you provide a happy, loving home to your toddler, simply take them away from it for a week. Our kid was so glad to be home! Her mood immediately improved, and we could see that she was going to be okay. It was a nice mommy moment to see her so glad to be where she knows she is most loved.

To be honest, I've never been so glad to be home, either. I love our house (when it isn't spewing it's contents onto my floor from some unfortunate plumbing mishap), but the town we live in leaves much to be desired. On this day, it was the most wonderful city on the planet. Texas had been a short trip, but we were emotionally exhausted. We were happy to hang around the house and do nothing for a few days.

While mom and dad are trying to be careful with baby and encourage less physical activity (because we are paranoid!), baby is running around the house jumping off of couches. While I do not condone such activities, I did allow it a bit, because she had been through so much. And, it was cute. And sort of a little miracle. If an adult had just been through this, they would lay in bed and cry. They would complain mightily. She just wanted to jump off of couches.

One down....two to go!

Hermann Memorial is a beautiful facility, and one of the best hospitals in the country. It's located in the Houston Medical District, with tons of other medical facilities. It is easy to get lost, but we quickly became accustomed to the layout.

After surgery, we were taken to a private room in the Children's wing, and he nurses were ready to greet us and help us in anyway we needed. They provided diapers, wipes, and all the other things you need to care for your little one, so we know next time not to over-pack.

For most of the day, we took turns running around the building on errands, and one of us was always in her room. I sent my husband back to the hotel for the overnight part, but neither of us slept. It's really hard to think about anything but that poor, sweet, medicated baby and how she is going to do with all of this.

Very late that night, after my husband had already left, she finally felt like getting out of bed. So, she ate a little bit of food and then we went on a ride in a toy car for awhile. She was out of it, but I could tell she was glad to be doing something normal again. She then went to sleep for the night, but we had to bring the car into our room to make sure we got to play with it in the morning.

The morning came, and seemed to go on and on. We knew we would be released that day, barring any catastrophes, and we were ready to go. To get back to some kind of normalcy. We wanted to take our baby home. BUT, we couldn't, because our plane didn't leave until the morning. So, it was back to the hotel for one more night.

We had to wait for the doctor to come to release us from the hospital, so while we did that, we played in the playroom provided by the hospital. They have a room and also a pretend park with roads on the carpet and fake trees in the middle of that area. It's a peaceful place to meet other parents and let your kids run around.

We met a great couple with a child with Mitochondrial disease. It was a great opportunity to connect with other people who really understand your struggles as a parent of a non-traditional child.
The doctor came to release our daughter while I was out on an errand. I was sorry to miss him, but then passed him in the hall and he stopped and told me everything he had just told my husband, whom had bothered to be present. It was so wonderful of him, as he didn't have to do that. He's a busy man, and the job was done.

The discharge paperwork was easy, and we were on our way to our hotel by lunchtime. The baby slept a lot on this day, too, but it was more difficult because with her arm in the splint, she didn't fit in the hotel crib! We put her in a queen bed, surrounded her pillows, and tried to be quiet.

Upon leaving, the doctor had instructed us that we could take her splint off any time after 48 hours. This was such GREAT news! Sometimes kids need to wear the splint 24/7 for a very long time. It was so encouraging to us as her parents that she would be free to use her arm during the daytime. It would be sore, of course, but not forever. She would be able to recover more quickly this way. We were truly blessed with this news.

I'm a Little Teapot

Immediately after finishing the operation, Dr. Nath came out to talk to us. He explained that things went well and that she would be waking up soon. He was very detailed and answered our questions. He told us that someone would bring us to recovery soon, and that he would see us the following day.

More waiting. We were taken back to the recovery room when she began moving around. It was really, really hard on mom. I'm sure it was difficult on dad, too, but I didn't have time to notice, being that I was a mess. As she began to come out of her haze, my poor baby was crying for her mama. I didn't know how to pick her up, because she was attached to so many things, and wearing this crazy teapot get-up on her upper half. It was frustrating, but her nurse was great. She got that baby into my arms as quickly as possible. I cried with her for awhile (the nurse politely pretended not to notice), and then she went back to sleep.

While you are in the recovery room, there are other children and parents there, too, for lots of different reasons. All the kids are in various post-op stages, and it probably one of the saddest places I have ever had to visit. It made me grateful that there is an end to our journey, that we won't spend her whole childhood waiting in recovery rooms. It made me grateful, also, that this place existed. That we were allowed to have care there. That other children will have better lives because of their visits there, too.

She woke up the second time and, to my great relief, wanted to eat Cheetos. If my kid will eat, she is just fine. She LOVES to eat. I knew she was going to get through this. That she wouldn't hate me forever. As long as I was tall enough to reach the snack cabinet, we could remain friends.

When you become a parent, you always love your kid. But, sometimes these things have a way of making you realize the fierceness of it. The need to protect them. The tenderness you feel in your heart; the way it pulls when you look at your baby, all wrapped up in brown Velcro, eating Cheetos. The pain you feel inside your soul for them, the longing to take their place. I realized then that if anything ever happened to this child of mine, I would just lay down and die. I was proud of us for making this decision to better her life, but at that moment, I wanted it all to just go away.

After awhile we were transported by a chatty man to the Children's wing of Memorial Hermann, and it was time for more waiting. Our daughter was sleeping and would for most of the day and night. The great nurses managed her pain, and my husband and I sat around and looked nervous for awhile.

She would wake from time to time, and we would give her juice or hold her or play with her, but mostly she slept. Mostly we worried. The staff was right on top of everything, and were professional and friendly. I loved her first nurse. It was a really good environment for our family to settle down and move on to the next step.

She always slept this way. Didn't seem to bother her. Weirdo.

The Moment We've All Been Waiting For

So, before we knew it, after all the personal struggles and financial hardships, the big day had finally arrived. Time for the Mod Quad! The alarm went off at 6 a.m., but my husband and I had already been talking about how we hadn't slept a wink for about half an hour. We tried to be quiet, which is impossible in a tiny hotel room. The baby was sleeping right next to the bathroom, making it quite a challenge to get ready without waking her. We knew she would be hungry - she's always hungry- and so we wanted to let her sleep as long as we could before the long day ahead.

I was a mess. I didn't feel good, and I was crying for my baby. For her pain, for her many struggles in her short life. I knew it was the right thing for us to do, but I was so afraid for her. None of knew what to expect that morning. I spent some time throwing up, and that seemed to help a little.

The baby woke, and we put on our brave faces and left for Memorial Hermann Hospital. The day before, someone had shown us where we were expected to be at 8:30 that morning, and the admissions paperwork was pretty much already done. We had paid every red cent we had to our names the day before, and had no problems while we waited. And waited. And waited. And then, we waited somewhere else. This place had toys, so that was easier.

During our time in the playroom, our daughter was distracted by new toys and children, and I was able to fill out the rest of the forms. We were visited by the anaesthesiologist, the doctor, a nurse, and the therapist who made the splint. We felt well taken care of, and no one made us feel silly for being completely freaked out.

Just when our poor baby couldn't take another moment of having an empty belly, a savior brought what they called "happy juice." It was just what everyone needed to loosen up before surgery.

About 15 minutes after taking the stuff, our daughter couldn't stand up. That was okay with her, though. She thought it was hilarious! She stumbled around for awhile, and then settled into my lap, happy to be with her mommy in this beautiful place full of colors.

A few minutes later, "they" came to take my baby. Some people with a bed on wheels and masks on their faces. It is SO hard to let your baby go, to let them take her behind the doors. But, they let us put her favorite lovey next to her, and we let them take her. It was to take about an hour for the surgery, and we could wait "out there." We opted to go to the cafeteria, which actually has okay food and decent seating, but neither of us really ate anything. If we tried, it didn't taste like anything.

We waited. We read. We fidgeted. We stared at the walls. I listened to a lady on the phone for awhile. She was offered a job, but had already accepted another. That was interesting. There isn't a lot to do while you are waiting but wait.

The Day Before

Once we actually got to the hotel, things were just fine. We were so exhausted we all ate a cereal bar for dinner and went to bed. The hotel staff hadn't put a crib in our room yet, but our daughter didn't care. She was asleep by herself in a queen bed in no time flat.


In the morning we had breakfast at the hotel restaurant and we were off to meet with the Therapist who makes the splints for Dr. Nath. It. Took. Forever. They have a cute little play room with tons of things for the little ones to do. Our little one was not interested in the least. She wanted only what she could not have.

On this visit, they create a splint made out of this molded plastic stuff and some kind of foamy stuff, and it Velcros all over the place. It's crazy. We have a relatively well-behaved child, and the situation is a little intimidating, so it went quickly as she sat pretty still. Then, after waiting...waiting...waiting, we were sent on our way with a very funky teapot-looking contraption in a hideous brown color. With us went a list of instructions on the care of said teapot, and a note from the doctor to the airline stating that my child is not smuggling guns in her splint and that it need not come off for any reason.

Later that day, we had a pre-op appointment with the doctor. It was the first time we had seen him since the trip to Chicago, and we had lots of questions. The wait, again, was long. It was okay, though. This appointment would change our lives in a very positive way. I took the time to talk to the other parents in the room. I showed my daughter a girl her age wearing the splint, so she could see it. I'm pretty sure she didn't really get it, but it helped me to see that this beautiful girl didn't seem to mind it at all.

We spoke to this family at length. Well, mostly the mother and I talked while the dads did what they could to entertain the kids. And I loved her. Should anyone find themselves in a situation where they are in a room with someone who has so much in common with you, please use that opportunity! The wait was long, but I really didn't notice. It was nice to not be consumed with worry for a moment. The other mother is a caring, wonderful woman who clearly loves her baby the way I love mine. The way a baby should be loved. She is on this roller-coaster of insurance-travel-money-money-money, too. We clicked right away, and remain friends to this day. We will stay together for our next trip to Texas, as the girls will both be getting the same surgery at the same time. To be able to connect with this other family in such a way was the best part of the trip, for me. There just really isn't anyone who understands a BPI mom the way another BPI mom does. Not even a BPI dad, try as he might.

Finally, we were called back to the next room. Somewhere else to wait, though not nearly as long. Nurses took pictures of our daughter's injury using all kinds of fun tricks that come with the trade. They were really encouraging to us about her abilities and made us feel at home. The doctor came shortly after, and he explained the procedure in more detail. He was easy to talk to, and he was sweet to our girl. The only surprise was that when we walked in, we thought we needed only two surgeries, and when we walked out, we knew we would need three. The first is called the Mod Quad, and it was what had brought us to sunny Houston that day. The second is the Triangle Tilt. We were told that we could have that surgery as early as three months after the Mod Quad. As long as your child is up to it, getting them close together and while they are young will yield the most benefit. We were instructed not to feed her after midnight, and to be at the hospital at some ungodly hour in the morning. We thanked him profusely, paid the lady at the desk twice as much as we had been prepared for, and headed back to our room.

We had dinner and put the baby to bed. Tried not to act too nervous around her. Got her back up around 11:oo to have a snack and a bath, which was a mistake. She was pissed. Well, she's always cool with food, but she was NOT thrilled with the bath. I don't imagine we were the favorite residents of the holiday at midnight that evening. But, you know what? Y'all shouldn't use up all the hot water. You never know when a poor baby needs to have a comforting bath before the biggest event of her life!

We all went to bed. The baby slept. Of course. She didn't know what was coming. We did. We did not sleep. Not a wink for me, and not much more for my husband. It is so scary to hand your precious, wanted, loved, amazing child over to a bunch of strangers in white coats with masks over their faces. There is so much pressure to stay calm about it for them. There is risk with every surgery. She is so small.

We were up by 6:00, and we didn't want to eat, but she did. So, we had to distract her for awhile, which was difficult, because I was barfing all morning. My stomach was just in knots for my baby. I wanted it to be me. I wanted her to understand that we were doing it because we loved her. I wanted to say everything I ever might say in her lifetime. I wanted to protect her from it all, but it was already too late for that. Now I just had to be there for her while she faced this challenge, and help her through the next ones as well.

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.