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.