Today was Hannah's second appointment at the Arthrogryposis Clinic at Shriner's Hospital for Children in Houston. We were only scheduled to see the lower extremity specialist, compared to our last appointment when she was seen by lowers, uppers, PT, OT, orthotics, and medical photography. We arrived a little early for her 10:30 appointment after dropping the boys off with Gran Jan. We had to wait about 40 minutes to be called back so we played in the lobby and on the playground. They give you a buzzer so you are free to explore the hospital and play outside until it is your turn. Today the volunteers had lots of toys, activities and snacks available which was really nice!
Playing bowling with Daddy while we wait
Got my game face on for this appointment!
Enjoying the slide outside!
You can see me in the background ready to pass out snacks-- we had our own little physical therapy session outside as Hannah was thrilled to climb 3 little steps to the slide and get a chocolate graham cracker as a reward!
Once we were called back to the clinic it was nice to see a familiar face. Bryan saw an orthopedic surgery resident from Scott & White that he knew when he was doing his ER residency. This resident was currently rotating at Shriners with Hannah's lower extremity specialist so he spent some time examining Hannah and talking with us before Dr. Barnes came in.
Waiting for Dr. Barnes & having more snacks.
Basically, we let her eat all kinds of snack stuff at the appointment to keep her happy. Being a baby and going to the doctor for hours is not fun so we spoil her a bit on appointment days!
Is this her new picture smile? We are not sure but it cracks us up!
Hannah was seen by Dr. Barnes, the orthopedic surgeon as well as the physical therapist who runs the arthrogryposis clinic. We had her AFOs on when they came in so after talking for a few minutes about her progress Hannah showed them how she can walk in her braces without any support. She did great! We asked about how to help her develop a protective reflex (the reflex that a baby has to catch themselves if they fall) because right now hers is almost non existent. They said it will just develop with time, and she may be prone to falling forward some in her current AFOs because of the way they are designed. She has a wedge design to get her knee/hip/ankles aligned as she stands but it shifts her center of gravity forward, making her more likely to fall forward as she takes more steps. They were so impressed with how much progress she has made in the 7.5 weeks since she got her braces.
Our goal for today's appointment was to check her progress and set a timeline for casting her feet and doing a tendon release surgery. Based on Hannah's first appointment, we were expecting to do 3-4 rounds of serial casting on both legs from toes to above the knee (so 6-8 weeks total of casting) and then have a simple heel cord/tendon release surgery on both feet (likely an overnight stay in the hospital) and then have new AFOs made that would work with regular shoes.
Dr. Barnes spent a lot of time examining her feet. I had asked what they thought about the fact that she doesn't move her toes at all, and if they thought she was missing any muscle groups which can be common in kids with AMC. As the doctor examined her feet Hannah sat on Bryan's lap. Bryan told me later he was watching and could see that Hannah's feet had very little response to the exam. Dr. Barnes tried various things to get reflexes out of Hannah's feet or calves and there was little to no response. In fact, the only response he could get was to make her foot turn inwards even more. He concluded from the exam that some of the muscles in her feet and calves have little or no function. This makes serial casting less effective for her specifically.
The goal for Hannah's feet is to have what they call a plantar grade foot - or a flat foot- that can be braced in AFOs, likely for the rest of her life although we don't know for sure. We expect her to walk in those AFOs and accomplish many, many things! We are trying to make her foot functional, but they will not be typical because of her congenital issues. As a result of what the doctor observed today, they have adjusted her treatment plan.
Hannah will have 2 sets of casts on both legs (so 4 weeks total) starting August 11th. The purpose of the casts will be to prep the skin on her feet by stretching it some as there are areas that are very tight. Following the casts, Hannah will have surgery on her right foot first, which is a little stiffer and more difficult to work with currently. Her surgery will include a 2-3 night stay in the hospital as they will be operating on tendons and maybe muscle to release tension and allow her foot to be flat. Pins will be placed in her foot and a hard, bent knee cast will go on for 3 weeks. At the 3 week point the cast will come off, her foot will be molded for a new flat foot AFO and a second cast that goes up to her knee will be put on for 3 weeks. When that cast is removed, she will have surgery #2 on the left leg which will be a repeat of what was done to her left foot. Once the pins are removed from her left leg, they will put a short cast on that foot and she will have an AFO on her right foot and may be able to get around a little bit.
Basically we are looking at this type of schedule.... 14 weeks straight of casting, with 2 surgeries mixed in:
August 11: casting #1
August 21: casting #2
September 10: surgery #1 with pins, long cast with bent knee
3 weeks post-op from surgery #1: pins come out, AFO molded, short cast put on so she can move her knee
6 weeks post-op from surgery #2: second cast removed, AFO finished and available to wear
Surgery #2
3 weeks post-op from surgery #2: same as above
6 weeks post-op from surgery #2: same as above and then hopefully be DONE for awhile!
After the appointment was over we took Hannah to have x-rays done of her feet and legs. The X-ray tech was nice enough to let Bryan see the films before we left. We received X-rays when we were matched with Hannah but they were just pictures of X-rays sitting on a table.... not super helpful! We are glad to have this done and in her file for reference. Bryan was also glad to see on film that her hips look good- something we had worried about in the past.
With my baby girl for X-rays
On the way back to Gran Jan & Pop Pop's house we were reminded why we like living in College Station! This was at 2:30 in the afternoon!
Overall the appointment was good and above all else we are grateful that Hannah is with us and we are able to provide her with outstanding medical care at a facility like Shriners. I do have to admit I'm a little discouraged today. We went from expecting 6 weeks of casts and 1 simple surgery to 14 weeks of casts and 2 more significant surgeries. We fully support the plan Hannah's doctor made today and know it is a necessary part of helping her reach her full potential. Most children with AMC have much more challenging issues compared to Hannah, so she really is fortunate.
All that being said, my heart is just sad for Hannah to go through all of those things. Whenever Caleb was a baby and we realized how behind he was from being premature and in the orphanage, I needed a day to digest what we'd been told and to grieve for him a little -- he certainly didn't deserve to face these challenges and my heart hurt for him. But once I acknowledged that the situation was crummy, I was ready to make a plan of attack to conquer the challenges ahead.
The same is true for Hannah. Part of being her Mama is feeling sad for things that are hard for her. I think almost every parent out there would say their heart hurts when they know their child will endure something hard. We will face each bit of Hannah's casting and surgery and the physical therapy to follow with determination, hope, and love because she deserves nothing less.
Until this process starts, we are going to enjoy the rest of the summer and make sure Hannah gets in lots of swimming and lots of long, warm, fun baths before she starts her casting marathon! :)
