Another trip to St. Louis, another unexpected outcome

We just returned from another trip to see Dr. Dobbs in St. Louis and to say that my expectations were not met is an understatement. I've spent the last 24 or so hours processing what happened and I think I might be able to put everything that happened in to words. So here it goes.

Thankfully, we had an uneventful trip, arrived in the early evening before rush hour traffic, checked in and headed to dinner. We ate al fresco which was really nice for the girls. They could get out and run a little bit and after riding for 5.5 hours, they both needed to move around.

Dessert was Klondike bars in our room. I promised Elise a sundae but service was so terrible at the restaurant that we opted for something from the hotel convenience store over waiting and waiting and waiting for our waitress to return. I wouldn't say the Klondike bars were a success, but it appeased their desire for ice cream.

Naturally, I slept horrible. Lucky for me that Elise chose to sleep with Aunt Candy (he he!) and I had a bed to myself. I think I woke up every hour because I was so fearful of missing our 7:30 a.m. appointment. That would be a total nightmare, having to reschedule! Wow, I can't even go there!

We arrived in plenty of time and we were the second patients in the waiting room. The other family was a Chinese woman and caucausian man. They were very curious about Amelia in a sweet way. Amelia was more than willing to entertain them. It was a pleasant conversation~at least for me it was.

When we were called back to the exam room a Chinese doctor arrived to ask us some questions. Well, let me say that he hasn't been in the US long~I had a very difficult time understanding him and I caught myself almost looking at Amelia and asking her what he said. Yes, I know, politically incorrect~but I was struggling. You know how you have to really focus on the person talking, look them right in the face and run what they just said through your brain about 3 times before you can finally process enough of the words to form an answer? That's what I'm talking about!!!!

He looks at Amelia's feet, looks at her legs, has her stand etc. Then he orders an x-ray of her spine. As shocked as I was to hear this, I wasn't totally surprised. I had asked the doctors when we arrived home if she had a sacreal dimple~but she does not and her spine is fine. The head nurse was very attentive while Amelia walked down the hall to x-ray. I mentioned it to her and she said that she had never seen a gait like Amelia's before. Hmmmm....not sure what that means.

Finally Dr. Dobbs showed up and informed me that due to the abnormalities that were discovered in the EMG/nerve conduction study, he recommended that Amelia have the tendon transfer (Anterior Tibial Tendon Transfer (needed in 20% of club foot cases) - where the tendon is moved from the first ray (toe) to the third ray in order to release the inward traction on the foot) now and not wait until she is 3+ years old. Since the nerves and tendons are damaged, her foot will continue to return to the "turned-in" position even after being corrected with serial castings. I knew that she would probably need the surgery eventually, just not now.

My head is spinning and he continues to tell me that she would still need 2 sets of castings to stretch the foot and tendon to prepare her for the surgery. Each cast would be on 1-2 weeks depending on how often I wanted to return to St. Louis. Then the surgery would take place on an out patient basis. He assured me it's very minor surgery. She would be in and out within an hour. She would then be put into long leg casts for 4 weeks and after that, she would be put into short leg casts for 2 weeks.

Mentally, I'm calculating the number of weeks this process is going to take and I'm up to 8-10 weeks. We have been kicking around a family beach vacation this year. Matt will be leaving in the fall for college and we figure it's our only opportunity to go as a family of six. But Steve has said he won't take Amelia to the beach in casts since she won't be able to enjoy the water etc. and neither will we. My beach vacation is fading before my very eyes. The thought bubble holding all of this information has formed and ~POP~ it explodes. All those thoughts become words and start to spew right out of my mouth. Dr. Dobbs then tells me that we can wait to start the process this fall without any problems for Amelia. I think about spending 10-12 weeks inside my house with two toddlers, not being able to go to the pool. Only going outside if it's not too hot so Amelia won't sweat too much in the casts and for me~it's a no brainer! We're waiting! Destin, here we come!!!!!!!! Sorry, another thought bubble just exploded.

We did get Amelia casted for a new night time brace and her AFOs. I'm working on getting things shipped to me so I don't have to return to St. Louis. I calculated that for us to drive there, spend the night and eat, it costs around $500! Yep, not kidding! So hopefully we won't have to return for the AFOs and brace.

I can't say that I'm disappointed with the outcome of the visit. Just surprised and adjusting to a new direction. Seems we are constantly doing that with Amelia. But hopefully she can start wearing the AFOs and it will make her legs stronger and she will start walking. Then maybe, just maybe, she won't need the serial castings and can go into the tendon transfer. This would cut down the number of trips to St. Louis, etc. etc. etc.

That' it for now~but you never know what might change next....