Monday, March 24, 2014

Hannah's First Shriners Appointment

Today was Hannah's first appointment at Shriners Hospital for Children in Houston.  Their hospital hosts an arthrogryposis clinic twice a month for new and existing patients to be evaluated.  We were thankful to get an appointment so quick after getting back to the US.  We drove to Houston the night before and the boys stayed with my parents while we went to a hotel near the medical center.

Playing on the stairs at Granny & Daddy Bob's house

We did not want to sit in rush hour traffic and risk being late for Hannah's 8am appointment.  We had a rough night after Hannah did not sleep well but managed to get to Shriners on time.  Once we checked in, we were given our checklist of appointments and a buzzer so we would be notified when it was our turn to be seen.   We were quickly called back to the clinic room for evaluations.  By 10am, Hannah received evaluations from physical therapy, occupational therapy, an orthopedic surgeon specializing in arms/hands (or "uppers") and an orthopedic surgeon specializing in legs/feet (or "lowers").

There were so many new faces in the room for Hannah and at times it got a bit overwhelming for her.  She would bury her head in my chest while the therapists or physicians examined her.  When they wanted her to demonstrate different things with her hands or feet she would not cooperate most of the time.  Luckily Bryan did a great job of getting her to reach for things, feed herself, etc.  Everyone that worked with Hannah was very kind and friendly.  They were extremely understanding of her situation and that joining our family very recently might make the appointment hard for her.

Waiting for everyone to come see me!
Hannah wore a tank top/shorts inside the clinic so they could see her joints.

Drinking a bottle in between evaluations because she got a little bit sad :( 

Here are the general conclusions/plan we got from each evaluation:

Physical therapy- They were so impressed with what Hannah can already do in terms of gross motor skills.   She is able to bear weight on her legs, pull to standing, crawl, cruise on furniture and walk behind a push toy.  She was also happy with Hannah's shoulders.  Many AMC kids have internally rotated shoulders depending on what type of AMC they have.  We discussed signing up with Early Childhood Intervention to begin PT in our home.

Occupational therapy -  The OT team measured the angle of each of Hannah's fingers, in her wrists, ankles and arms @ the shoulder.  She has great range of motion and they were also pleased with her fine motor skills.  At this time, their best recommendation for OT for Hannah was "life"!  They showed us some ideas of how to work on her hand position for different activities but did not feel like she need intense OT at this time.   We are thrilled with her current skills so we agree!

Uppers Specialist - This physician was so warm and encouraging.  She thought Hannah's hand function was amazing.  Her elbows and shoulders are not affected by her AMC so there was nothing for the surgeon to address.  She explained a lot to us about AMC and how they would observe Hannah over time to determine which type of AMC she has.  While knowing the type is interesting, it doesn't change her course of treatment so it is not too important to us.  The PT team initially thought Hannah has amyoplasia, the most common form of AMC, but the uppers specialist wanted to reserve judgment until they have more time to think it through.  She and the lowers specialist both agreed that Hannah's arms were "too good" to give a definite diagnosis of amyoplasia.  We are thrilled with her arms that are "too good"!  The uppers specialist did not think that Hannah needed any hand splinting at this time so we will see her again in 6 months.

One of the best things this physician emphasized was how important the work of Little Flower & Eagles Wings had been for Hannah.  She explained that when a baby is born with contractures (stiff, immobile joints) that range of motion can be 'discovered' if early intervention takes place.  The countless hours these volunteers spent bracing, casting, stretching and massaging Hannah's joints are key to where she is at today.  While we wish the orphanage had cared for Hannah with the same diligence, we are SO thankful that Hannah's first year was spent with people who took the time to care for her medical needs.

Lowers Specialist - This is the visit we were anticipating the most since Hannah is most affected in her feet/ankles.  We went into the appointment expecting to hear that Hannah needed to be casted right away or maybe that they wanted to do an aggressive surgery we would not feel comfortable with.  The lowers specialist was very detailed and intelligent.  Luckily Bryan speaks "doctor-ese" so we could understand all the information he gave to us!

When Hannah would not show the doctor how she can walk behind a push toy, Bryan busted out his iPhone and showed him this quick video!  Hooray for technology!

video

The lowers specialist decided that Hannah will definitely need to have serial casting and a tendon release surgery done on each heel at some point.  Serial casting involves putting casts from toes to above the knee on each leg and changing those casts every 1-2 weeks.  This slowly corrects the position of the foot and is very effective.  We expected to potentially leave Shriners with casts that day.

We were pleasantly surprised by his first recommendation, though.  The doctor wanted to have Hannah wear braces called AFOs (ankle foot orthotics) to help stretch her foot some and keep them in a more correct position.  He wants them worn as much as possible and for as long as we feel comfortable with.  He felt like Hannah's adjustment into our family was important and was also pleased with her current mobility.  He didn't want to stop her momentum on learning to move her body so we will put her in AFOs for several months and then do her surgery later-- likely in the early fall.  While it may seem like we are delaying the inevitable, the reality is that Hannah's bond to us and her adjustment to life in our family is the most important.  Keeping braces on her feet will keep them from getting any worse but also give us more time to enjoy her before we put her through casting.  This felt like a good balance for us between attachment and addressing medical needs.

Playing in the waiting room before our next stop


After the last evaluation, we went to the orthotics department.  They made plaster molds of each of Hannah's legs.  They will custom create AFOs for her feet and we will pick them up in a month.   The physical therapy department will meet with us at that time to make sure we understand everything about wearing AFOs.   Hannah was a great sport during her plaster molds!



We ate a quick lunch in the Shriners cafeteria and then went to medical photography.  They took pictures of Hannah in her diaper to document her current appearance before any therapies are started. When that was finished we loaded up into the van and Hannah quickly fell asleep!  It was a long, overwhelming day for our baby girl.  We were so proud of how she handled everything!

Passed out with "baby"
She uses baby sign language to ask for this baby all the time :) 

We appreciate the prayers, texts, phone calls and support for our little Hannah during her big doctor day! Everyone we met with today emphasized that the sky is the limit for Hannah and that she will be able to achieve anything she wants to do.  We were so encouraged by their enthusiasm and optimism. We are grateful for Hannah to receive medical treatment at such a wonderful, caring facility!

2 comments:

  1. Precious. As another CCAI family (we leave for China tomorrow!) I just wanted to tell you how muh I have loved following your blog. We also have a mutual "in real life" friend, Jes. :) My girls also adore their BabyBeBlessed dollies, btw.

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