Consultation at Shriner's Greenville, and Hawk update

On Friday the 21st we had an appointment at Shriner's Hospital in Greenville, SC, which specializes in pediatric orthopaedics. The hospital serves 6 states, and since we live only 2 hours away we had been advised to get a consultation and 2nd opinion about Hawk from them, and then to consider if we would pursue his further care with them - in particular, to have his hip surgery for his dislocated hip done there. What makes Shriner's different is that they have all their doctors and specialists located there, and they work together (in constant communication) to assess and treat children. So it makes for much smoother and better coordinated care. (And it is a "free hospital"!)

Our primary reasons for going to Shriner's were, 1. to get more information and feedback about his overall condition (is this really arthrogryposis? If so, what type? Is there anything else that we need to address? How is he doing? Are we on the right track with his care?) and 2. get a second opinion about the hip surgery he will need in a few months for his dislocated left hip.

While waiting in the exam room, the nurse brought this brand-new musical toy as a gift for Hawk!

To back up a bit ... Now that Hawk has finished the casting for his feet and has orthotics (or, AFO's - ankle foot orthotics) to maintain their shape and does daily stretches for legs/feet, he has completed the first major phase of his medical care! Time to celebrate! Yes, his feet still look different, but they are flat on the bottom and he has some ROM in the ankles, so all signs point that he will be able to walk! As the orthotist remarked, "I think Dr Raustol made you some very fine feet, young man."

Meanwhile, of course, we continue with weekly in-home appointments with the PT and OT, and our daily routines of stretching and massage - focusing on stretching his neck, shoulders, hips, fingers, wrists, and ankles. And working on tummy time positions to improve his neck extension and shoulder strength. He is now able to roll from tummy to back, and from back to side; and he can open up his hands to grasp toys and bring them to his mouth (although the fingers are still tight and often he still has them in a fist position). We marvel at the improvements we see with him week by week. He is doing GREAT!! Now he's working on better rolling; holding his head up while on his tummy; supported sitting; and soon, introducing foods.

A couple of photos while sitting in the Bumbo to watch Mommy cook, and holding a spoon (look, he is starting to get his thumb around in the right position!) and a little bear. Just this week he has started holding out his arms and trying to reach for everything, especially people.

So next up is his hip surgery! And back to the report on our time at Shriner's:

We had a really positive experience there; the hospital is small and kid-centered, and they really focus on creating a positive, personable experience for children. We really liked the staff we met - and to a person, they all were very encouraging about Hawk and what he is already capable of, and they ALL commented on how "tuned in" and friendly and content he is. It's true - this little guy is our most social baby, and will make eye contact and smile at almost everyone. We were seen by a PA, the chief of staff (who is a pediatric orthopedic and surgeon), PT and OT.

They all agreed that his arthrogryposis could be "distal arthrogryposis" or possibly not even arthrogryposis but some other syndrome with similar symptoms. The Dr. suggested two other possibilities to bring up with the geneticist at our appointment in Asheville next month. They all mentioned how well he is moving his limbs and joints, and his good muscle tone, and his ability to grasp things and bring his hands to his mouth. VERY positive. "You are going to do great, little man!" said the OT. "Yes, those hands will write and type and cook and play an instrument. Whatever instrument you want!" Though Hawk was born with joint stiffness and malformed feet and hands, he has already improved a lot with therapy; whereas many children born with arthrogryposis do not show such improvement in movement and can have 'frozen' joints in their elbows or wrists or knees. So, yes, Hawk still needs therapy, but he is certainly doing well. Read more here.

We also got more information about the hip surgery that he will need to repair his dislocated hip. [This surgery will be done sometime between 10 months and 18 months old, approximately.] The surgeon will place the ball of the hip back into the socket, and may need to do a pelvic osteotomy where he cuts the bone to shape the socket into a better curve. Afterwards Hawk will be in a Spica cast from chest to ankle on the left side, and chest to knee on the right side, for 12 weeks. Yes, BIG surgery and recovery. Still much to consider and learn about what this requires, and we will eventually need to decide which orthopedic will do this surgery. (Many more details but I'm trying to keep the explanation simple!)

Meanwhile it worked out fantastically that Grandpa and Jaja had just finished an ISI retreat in Black Mountain the day before, so they drove over for 2 nights to be with Timo and Mattias while we went down to Greenville for the day. You can see they were both quite content with that arrangement!

waffle breakfast on Saturday before they left (thanks, Jim, for photographing while I was still in pj's)