Saturday, October 8, 2011

A Bit of Encouragement

Yesterday Avery turned five months old. We went to Children's Mercy for another follow-up with Dr Sinclair. We explained to him that we had decided to seek a second opinion from Shiner's so that we could weigh our options. Shriner's was said to have more experience with conditions like Avery's. We then told him that the appointment had turned out very frustrating. He was very understanding and stated that Avery is a very special case and a lot of doctors, like the one at Shriner's, would try to compare too much to other situations. Avery's case is special not only because it affects both legs, but because he is so symetric in his bowing/ shortened tibias. He agreed with our decision to try to save the foot. He simply stated what was already running through both our minds. "You can always amputate later, but you can't put it back on." After a few more x-rays he pointed out that his bowing had not improved significantly on it's own. He recommended the next step we take to be a surgery to straighten the tibias. He explained it as a rather simple procedure. He would first remove a small "wedge" of the bone to take the portion of the tibia that is bowed. The bone should heal in about 4 weeks with only some small pins to help hold in place. After the bone is healed the pins would be removed. Because of his young age, he said the bones would heal without any scarring. After the surgery is complete, Avery should be able to stand without having balance issues. With the tibias striaghter, the feet may start to line up more on their own. At that point, we will see what kind of braces he would need or if casting is necessary. We then scheduled to see Dr Sinclair in Febuary when Avery is 9 months old. The surgery will be scheduled around 11-12 months of age.

Thursday, October 6, 2011

5 month follow-up with Sinclair

Tomorrow we take Avery to Children's Mercy to see Dr Sinclair. This will be the first time speaking with him about the appointment we had at Shriner's. Hopefully he will decide to cast his right foot tomorrow or sometime soon. He wants to stand so bad! We have seen a tremendous change in Avery's feet since the first time we saw Dr Sinclair..

Friday, September 30, 2011

First appointment with Shriner's

We were looking forward to our first overnight trip with Avery. We stayed in St Louis for 2 nights and we wanted to make sure to visit the zoo among other things. The trip didn't go quite as expected. Five or more hours in a car is a long trip for anyone, let alone a 4 month old. He did fairly well, but had trouble each evening due to teething. We went to Shriner's the next day, September 16. The hospital seemed small but warm. Avery was greeted by an older woman handing out toys to the children. We then had more x-rays taken and met with a team of doctors. The first doctor specialized in congenital problems with the upper extremities. Upon evaluation, he diagnosed him with ulnar defiency. The good news he said, was with this diagnosis it is not hereditary and it can also tie in with the FH. We then saw an occupational and a physical therapist. They showed us some more stretching techniques. We waited awhile for the Dr to come in to talk to us about the lower extremities. By that time, we had been there 3 or more hours and Avery was very tired. The Dr came in, greater us shortly and began to examine him. It bothered me that a children's Dr did not take the time to talk to my child or laugh and smile with him. Although Avery was very tired he was still his smiling self, yet the Dr did not acknowledge. We had been used to Dr Sinclair who would laugh and play with him. None the less, the Dr continued to examine. He used very few word except "she this, she that" speaking about my SON. He then said he recommended amputation for the right foot. We tried to explain that Sinclair had suggested casting first, but he basically said it would be a waste of time. He then left and told us we could wait and see how things go. Although we scheduled another appointment at Shriner's, we decided it best to continue with a Dr that believes in saving the foot first. We will now wait for his appointment with Sinclair on October 7. Now that I am caught up with everything we've been through so far, my posts will been written in the present.

Great news!

July 1st we had our follow-up with Dr. Sinclair. We were nervous because last time he told us if Avery hadn't developed more of a stable ankle bone, we would have to amputate. As he examined him he seem astounded by how much more developed he was. He talked about how strong he was for a 2 month old. He is a very determined boy, holding his head up since day 1! After looking at his feet he said he thought they were salvageable. It was a great day. We called up our family and shared the great news! The next step was to wait and see when he would be ready to cast the right foot which is clubbed. They wanted him ready to bear weight by 8-9 months old. As we left with great news, I had missed a call from Shriner's saying we had been accepted to receive care. We had just applied 2 weeks prior and were so excited to get in so soon. They scheduled an appointment for September for Avery to see a team of doctors. Things were looking up...

Wednesday, September 28, 2011

First appointment with Dr Sinclair

Avery was born on Saturday, May 7, 2011. We went to Children's Mercy that following Friday to see Dr Sinclair. Upon evaluation, Dr Sinclair said he was extremely symmetric. He said that Avery's Fibular Hemimelia(FH) was actually great that it effected both legs. Since he was only 6 days he wanted to wait a couple months to follow-up and see what joints had calcified. At this point,he was concerned mostly about his ankle joints. He said next time we came back he would evaluate the ankles and if they looked stable, then we would be able to save the feet. He then told us of the possibility of amputation. I knew through research that it would be a possibility, but hearing it from a DRs mouth makes it so much more real. I couldn't hold back the tears, I couldn't imagine my baby boy going through that. During the next 2 months it was our job to try and make his legs more stable. Everytime I fed him I would stretch his feet, especially the right foot which is clubbed. The stretching never seemed to bother him. I was overwhelmed to see how strong and patient he was every time I worked with him. For the next 8 weeks, which happened to be my maternity leave I stretched with him several times a day, and tried to wait patiently for the next appointment with Dr Simclair...

Tuesday, September 27, 2011

He's here!

I had planned to work up until the day I went into labor and that's exactly what happened. Friday evening I got off about 6:30 and I started having contractions around 9. I took a bath, watched some Tv, and tried to go to bed. I was so afraid of going to the hospital too early and being sent home. I kept my husband updated on how I was doing since he works an hour away. I told him to stay there until the contractions got worse. I called him that morning after a restless night of sleep and told him I thought it was time. We waited at the hospital to be admitted and about 6 hours of active labor later he had finally arrived! Avery Allen was 6 lbs 12 oz and was very healthy. We opted to wait a little while to have visitors. This would be the first time we really got to see what DRs had spotted in the previous ultrasounds. Avery had noticeably bowed/ shortened Tibias, with dimpling on each shin. As well as missing and fused fingers. But he was perfect, no words can describe the joy I felt.I had waited so long and now he was finally in my arms...

We became a lot stronger

I went back to work the day after we found out. I dealt with it by keeping busy. I hated being alone with my thoughts. Through the weeks it became a lot easier to talk about, but I still found myself keeping it from some people because I didn't want their questions. We had Ultrasounds scheduled every 6 weeks up until I was due. Each time we went in we got to see more of our active baby. That's what really helped it resonate. He was a healthy, happy boy. Just a little different than most. We then met with a group of doctors at Children's Mercy toward the end of my pregnancy. That is when we met Dr Sinclair who spoke with us about Fibular Hemimelia. He made us very hopeful that Avery would lead a healthy and normal life. The next step was to meet with him soon after Avery was born.

Monday, September 26, 2011


My heart felt like it had been ripped from my chest the moment we found out Avery had Fibular Hemimelia. At that point they hadn't given anything a proper diagnosis. The DRs said that this was very rare and the cause unknown. At the time I didn't care what it was, I just knew my baby had something wrong. I instantly was filled with sorrow of the challenges to come. Then I became very angry. I didn't want to talk to anyone, I didn't want to hear anyone's voice. The hour drive home was silent as I looked through the sonogram pictures with tears in my eyes. "why us, why now?", you ask yourself. We wanted a child so bad, we had done everything right. After arriving home I sat still in the chair thinking, things had never been so silent. I finally got the courage to call my mom. Hearing her voice tremble with the news made me sick at my stomach. I didn't want to talk much, but I had to call my work. I spoke to my boss for a moment, but again it was hard to speak. I cried the rest of the evening. Curled up on the shower floor I wailed. My husband had been crying but I know he tried to keep it from me. He was trying to be strong enough for the both of us, he knew I was a complete mess. He knew I didn't want to talk, so he just held me for several hours. It's hard to explain how I felt over the next few days...

Boy or Girl

At 18 weeks in a pregnancy most couples are more concerned with finding out whether they will be buying pink or blue, and we were no different. We both hoped for a boy, and I felt deep down that's what we would have. When we went to my ultrasound the technician pointed out what she found between my little one's legs, all boy he was! With our pictures in hand we continued our appointment with my OB, Dr. Costa. She told us how healthy our baby boy looked but that they were concerned with the length of his arms and legs. At that point she didn't seem too worried and said it could be because we both come from shorter families, but she wanted us to see a specialist to get a better ultrasound. The next day we took off for Shawnee Mission Hospital. We met with a genetic counselor that gave us scenarios of what we may find. We kind of shrugged things off and still thought he was just a little shorter than average. We then were taken in a room with more in-depth ultrasound equipment. The Dr came in during to verify that our little boy was missing both of his fibulas as well as digits on both hands and feet. Words can't really describe how we felt at that moment...

Sunday, September 25, 2011

The Begining

From the beginning my Husband and I were told we may have some difficulty having children. Although I felt that I was already pregnant at my first appointment with my OB, tests showed otherwise. She decided to do an ultrasound due to some pain I was having which again raised some concerns for concieving. Little did we know I was already pregnant with my little miracle boy! A nurse called me at work after having blood tests ran that morning due to problems suspected in the ultrasound. My husband and I were so happy, but felt like we needed to hold back our excitement until we found out everything was okay. More bloodwork and ultrasounds were to come...