Kiya's Story

So I am new to writing for this blog so I thought I would start off by posting my daughter's story and introducing myself. I am Cathy, the proud Mama to the sassy Miss Kiya, mentioned in the last post. She is currently 22 months old and the light of my life, curvy back and all.

My daughter Annakiya or Kiya for short was born November 29, 2008 in a small town in southern Ethiopia. She was placed in my arms forever on May 8, 2009 at just under 6 months of age. We know very little about her birth other than what her mother told us. She said she was in a lot of pain and that the birth was difficult. We are under the assumption that my daughter was born premature and with low birth weight and possibly breech…best guess was she was about 3lbs when she was born as at 6 weeks, she only weighed 6lbs.

When we traveled to Ethiopia to bring her home, we were in awe of our beautiful little girl and the strength of her mother. She was this tiny piece of perfection that weighed around 12lbs and had the most gorgeous curly hair and brown eyes and a smile that melted my heart. She did have low muscle tone from her time in an orphanage. We used to say she had jelly legs as at 6 months she couldn’t bare any weight on her legs.

Her first months home were pure heaven really. She was a very easy baby. She ate well, slept well and after a few initial ear infections was a very healthy kid. We had her evaluated at 7 months of age by our state’s Birth to 3 program. At that time she only qualified for speech therapy. They did note her low muscle tone but she was not outside the parameters of what was deemed average for her age. We declined speech therapy and agreed we would have her re-evaluated in a year.

She was late on hitting all gross motor development skills but given she was premature (likely) and her low muscle tone that was to be expected. She sat up unassisted at around 8 months, she rolled over at 11 months, she started to scoot on her butt around 12 months, she pulled herself up to a stand around 14 months, she learned to traditionally crawl at 16 months and currently at 22months she has yet to walk more than about 4-5 feet by herself but is trying really hard. She is at or above age level in fine motor, speech, problem solving, etc.

At 13 months, Kiya was in to the doctor for a sick baby visit. We didn’t see our regular doctor, but this doctor thought Kiya might have plagiocephaly and torticollis and referred us to a physical therapist. I left a little ticked that no other doctor had mentioned anything but made the appointment. We had our first visit with the therapist when Kiya was 14 months old. The therapist measured her head and determined she might have mild plagicocephaly but given her age the decision to helmet was up to us. We opted not to but continued therapy for the torticollis. The therapist also noted that Kiya sat more on one butt cheek than the other and that her posture was in essence terrible. She mentioned scoliosis but said she couldn’t be sure. We worked with the therapist on exercises to improve her muscle tone and resolve her torticollis. Most of the therapy was done at home by us. We only saw this therapist maybe once a month. So we were in for a visit with the therapist and she mentioned scoliosis again. The torticollis had resolved but her posture was terrible and she had a rib hump. She recommended that we see our regular pediatrician and get a referral to an orthopedic specialist. We did just this at Kiya’s 18 month check up the first part of June. Her pediatrician looked at her back and rib hump and agreed it was a good idea to get some x-rays taken. I scheduled the appointment with the pediatric orthopedist ASAP.

So in at the end of June 2010, we had Kiya’s first x-rays taken. She had them taken standing up and she had a 36* curve in her spine. The doctor refused to discuss our options until we had an MRI. I at this point was in tears. Never did I expect to hear MRI and sedation and all sorts of horrible sounding things that could have caused her scoliosis. I pulled myself together and we scheduled the MRI for about a week later in the first week of July. Kiya was a rock star at the hospital. She hated having the IV in but she did great and was singing songs and charming everyone who was in the PICU that day. Waiting for the results was agony but worth it. Kiya’s MRI was negative, she had idiopathic infantile scoliosis. We returned to the orthopedist at the end of July to discuss treatment. He spent all of about 5 minutes with us and in those 5 minutes mentioned body casting, bracing and wait and see. I again was freaking out. Body casting??? What the heck was that??? I asked and got a well we can wait and see and re-xray in a few months. We left the appointment and scheduled a follow up for October 2010.

As soon as I got home, I jumped on the internet. The internet can be a scary thing when researching medical stuff but in this case it saved my daughter. I found infantilescoliosis.org  pretty quickly and started reading stories and learning about Early Intervention and Mehta casting. I did more research and I joined an online group for parent with kids with scoliosis. I posted my daughters story on the group and was looking for help. I was lost and didn’t know what to do but the wait and see approach was not setting well with me. Within a few hours of posting, I was contacted by another mom personally by email. She gave me a ton of info on Shriner’s Hospital in Chicago and hooked me up with an amazing group of women and families all going through EDF/Mehta casting at Shriner’s Chicago. I was floored, scared and excited. We immediately sent in our application to Shriner’s Hospital and were thrilled when we got an appointment for September 2010.

The doctor at Shriner’s reviewed her x-rays and MRI films and agreed that Kiya’s scoliosis would likely not improve on its own and she was a good candidate for casting. He said given that she has no neurological issues, we should see excellent results. It was a long appointment but in a weird way we got the answers we were looking for. We waited for a cast date. After 1 week of waiting for a cast date, I called the nurse to follow up. She contacted the OR scheduling person and the next day we go the call. We had a cast date of September 14th. We had 4 days notice. I was freaking out and frantically trying to mentally and physically prepare.

Cast day arrived and we were scared but knew we were doing the right thing. We truly believe we had the best first cast day ever because we shared it with two amazing families that I had gotten to “know” via the online group and facebook and because the staff at Shriner’s Chicago are simply amazing. I am not going to lie, a lot of tears were shed that day but we all survived. Kiya is a fighter for sure. She was mad at first but she recovered and did great.

Her out of cast x-rays showed her curve had progressed to 50+ degrees in the 2 months since she was last x-rayed. The doctor’s were able to get her down to 15 degrees in cast. I was thrilled and so relieved that we didn’t wait until October to determine a treatment plan. It took a few days for Kiya to adjust but she was back to her silly, sassy self in no time. She was 21 months old at the time of first casting. She also now wears a pair of Sure Step ankle supports as she was rolling in on her ankles while standing/walking hence she hadn’t started to fully walk on her own yet.

As of writing this, we are just over 2 weeks into our first cast and 1 week + in her ankle supports and Kiya is doing great. She has now qualified for physical therapy for our state’s Birth to 3 program. Her therapist just saw her and is thrilled with her progress. She feels it won’t be much longer before we have a walking/running/jumping toddler on our hands.

We know we are at the beginning of this journey but we are so grateful to have found such incredible resources because we got a few months head start on treatment for our daughter and truly have made lifelong friends. No I take that back, we have gained family members because one sweet woman read my post and reached out to me. I am forever grateful.