There are six primary features of Bardet-Biedl Syndrome of which Sera has five. There are twelve secondary features of which Sera has nine. Although she is mobile is a very involved little girl and requires constant supervision.
I have given her the name "Sweet Sera" because 90% of the time she has a gentle personality and a sweet soft voice. HOWEVER, anytime food is involved there is another side to Sera's personality. A child with Bardet-Bield syndrome can have similar characteristics as a child with Prader-Willi Syndrome. These children have central obesity and Hyperphagia(increased appetite for food).
Sera has no idea when she is hungry or full. She does not register when food is hot or cold, spicy or sour. Although she does not know when she is hungry, if she sees food she thinks she needs to eat. If she never sees food during the day she never request to eat. Sera does not chew her food but tries to stuff her mouth and swallow without chewing. Of course this leads to lots of choking!
We have one main family area in our home, our living room opens to our eat-in kitchen. NOONE can walk into the kitchen without Sera finding out. This has been very frustrating as Sera will stand and cry anytime I walk into the kitchen. Since we are trying to control her weight she is limited to a 900 calorie diet. She is very limited on sweets and snacks. Anytime I try to give one of the other kids a snack we all have to listen to Sera cry. The rest of the kids have hearty appetites and need those extra calories. Even if I just finished feeding her lunch, if someone else walks in to eat she will start screaming wanting to eat again.
So, I am adding to the criteria for any home in the future to have a kitchen which is closed off to the rest of the house with a door that locks.
Sera had her casts take off today from her surgery. It brought tears to my eyes to see her little finger for the first time. If you did not read the previous post about her surgery you can read it here "Sera's Surgery"
In the spring of 2009 we decided to start the adoption process again. We found two little girls, with no special needs, ages 3 and 7 on our agency's waiting list. It was perfect because we had girls age 3 and 7 at home and thought they would be a great match for our family. The agency did not have the medical reports back on the girls so we had to wait a few weeks before we could officially accept their referrals. Well, we found out that the three year old was more than likely HIV+. I am not sure how to explain how we felt. I guess you could say we were like, "humm, we never really thought about adopting a child with HIV". It wasn't necessarily scary to us but we were just not informed about HIV or AIDS. We were educated enough to know how the virus was transmitted but that was the extent of our knowledge. We had no idea the life expectancy of a child with HIV. What medical treatment they would need? How to handle injuries? We had no idea what was involved in raising a child that was HIV+. The agency asked if we still wanted to accept the referral. So off I went to do research on HIV.
I came across the blog of Carolyn Twietmeyer and connected to Project HOPEFUL. I soaked up ALL the information on their site. Then I watched Facing Life Head On Part One and Part Two. I had my husband come and watch the episode about the Twietmeyer family too. I think we both just kinda sat there and soaked it all in. After watching the video I checked with our insurance about HIV medication. I was surprised to find out the medication was covered under our insurance. I think we were both like,"well, HIV is not that big of a deal." If this is the child God has for our family then we will deal with whatever comes our way.
So, we contacted the adoption agency and our home study agency to let them know we wanted to adopt the two girls. Due to a ridiculous policy the home study agency would not approve us for these two specific girls. We were shocked. God had something else up his sleeves. God had been preparing our hearts for another little girl. What you don't know is there were two girls also on that waiting list that were HIV+. They had been on the list for several months but we had never considered them because we were not adopting another child with special needs, especially not a child with HIV. One of those girls is our new daughter Elshaday, who is waiting in Ethiopia to come home. We first saw her face two years ago and we are so excited she will be coming home soon.
This week at Christian Alliance for Orphans Summit VII I had the opportunity to meet the family that had a huge impact in our adoption journey. This is really a two part post but I am so excited to tell you something I am going to tell you the ending first. Check back later today for Part Two, which is really Part One of the story!
Two years ago we happened upon the blog of the Twietmeyer family. (My next post will explain how we happened upon their blog) Carolyn is the founder of a nonprofit organization called Project HOPEFUL. Project HOPEFUL was created to advocate for families adopting children that are HIV+ . Project HOPEFUL has recently been featured in People Magazine and on The Today Show. Project HOPEFUL is based out of Illinois, but recently they decided to branch out in order to effectively support more families. They are now looking to have State Associates in as many states as possible.
Sera's surgery went very well. In fact she did so well we did not have to stay overnight. She is one tough little girl. Everything went as expected. There is the possibility that she may need more surgeries on her hands in a few years. The doctor said something very interesting which I had never thought about. When Sera's little body was forming, her brain was designed to recognize ALL of Sera's fingers and toes. Even though the "extra" ones are gone her brain is still wired for 7 fingers on each hand and 6 toes on each foot. Her brain does not know that they are gone. As I understand it, because the brain still thinks the extra digits are there, sometimes they have to go back in a do some work on the nerves.
How cool is it that God creates our brains with such detail that is unique to our individual body.
It is finally Sera's big day. We have waited and jumped through hoops for the last year. Sera has a rare genetic disorder called Bardet Biedl Syndrome. One of the main characteristics of this disorder are extra digits. I have been told that Sera's case is even more rare due to the number of extra digits.
Sera will be having surgery on Thursday morning at Shriners Hospital. We would appreciate your prayer for her surgery and recovery. The surgery is expected to take about 4 hours if things so smoothly. She will have casts on all her hands and feet for at least two weeks.
Sera has seven fingers on each hand. Her right hand is a little more complicated because three fingers are fused together. The doctor said depending on how the surgery went on her right hand she could require more surgery in the future.
Sera has six toes on each of her feet. She also has an extra bone in one of her feet which will also be removed. I am excited that Sera will finally we able to wear regular childrens shoes. She has been wearing what I call "sock shoes". They look like socks but have a rubber sole on them. They have been a lifesaver, especially during the winter.
This surgery is bittersweet. When Sera came home Ethan said, "mommy I love all of her fingers". We do! We love each and every special part of Sera. It will make life so much easier for Sera but we will miss all those fingers.
When it was time to say goodbye everyone walked Elshaday up to the car. They each said goodbye to Elshaday with the traditional kiss on each cheek. Elshaday's mother and sister walked Elshaday to the car. Darren & I both said goodbye to her mother and sister in the same manner. These words pale in comparison to the actual emotions of the moment. Elshaday did not say anything nor did she shed a tear. She was quiet and reserved.
We had been in the car for maybe fifteen minutes when I noticed a few lone tears rolling down Elshaday's face. It had finally hit. The reality of what was happening. I put my arms around her and she bowed her head down leaning on my arm. She stayed that way for close to an hour. Very quiet and very still. Then suddenly she looked up leaned over and kissed me on the check. She climbed up into my lap and put her arms around me. She stayed there the rest of the drive to Addis. This picture was taken just after she climbed into my lap.
I am going to do my best to describe the inside of her home. We walked into her home and to the right was her bed. To the left was a table and storage area. The walls were papered with newspapers and the floor was covered with mats and rugs. In the center of the room was a small table. Around two sides of the table there were benches. A large pillow had been placed on the bench for comfort. She asked Darren & I to sit at the head of the table. She had also invited the people who had been her support system since Elshday was born. It was obvious that they had been very involved with the family. Elshaday remembered each of them and greeted them with a big hug.
On the table was Defo Dabo(a large round bread), popcorn, and fruit, along with the traditional coffee.
Darren was asked to cut and serve the Dabo(bread). Of course all the ladies were giggling at Darren's bread cutting skills.
The whole time we were there the ladies just loved on Elshaday. You could tell that they loved her very much. A few times Elshaday's mother spoke to us through the orphanage director. She thanked God several times for our family and for the people who had helped her when she gets so sick. She kept saying to us, "I wish I had a gift to give you but all I have is my daughter." I don't think I could ever adequately express how humbled we were at that moment, that God has chosen us to be grafted together with this beautiful family.
Before we left Elshaday's mother gave her a necklace with a small heart pendant. She asked if we could keep it for Elshaday until she comes home. She told Elshaday that when she wanted to remember her mother she could just look at her necklace.