This is my first experience with blogging. I am sure it will take some getting used to. I decided to start this because I thought it might be a good way to keep everyone connected with the exciting things happening.
We first became aware of the world or growth disorders when our daughter Michelle was born in 2000. She was born in the 50% for height and weight and appeared to be perfectly healthy. After she was born it became increasing obvious that something was not right. She remained very small. At her 4 month check up she had fallen to the 10% for height. Slipping percentiles became the normal until, at 11 months, she was completely off the growth chart. That was a time of great worry, especially for me. Growing is one of the most basic of functions and when your child fails to acheive this it can be very very scary! Children eat, sleep and grow. Most of us take this for granted and never have to give it a second thought. But as we found out, sometimes it is not that simple.
We spent the first 5 years of her life going to doctor's appointments, specialists (endocrinology, gastroenterologists, orthopedic doctors, kidney doctors and allergy specialists) and spending many days at various hospitals having tests. It was a very frustrating experience for all of us. No one wants to see their child hurting. Michelle was so incredibly tough. She got so used to IV's, every stomach flu required IV fluids because she had absolutely NO weight to lose.
Not only would she not grow very much but every fraction of an inch that she would grow would cause so much pain! She would scream in the night and we would have to hold ice packs to her legs and give her pain medications.
Finally when Michelle was 5 years old we got the answers that we had been praying for, a diagnosis. Michelle was diagnosed with a rare disorder called Insulin like growth factor -1 deficeincy. The relief of finally having a diagnosis was quickly overshadowed with the reality of the treatment plan. Michelle requires shots every day to keep her growing. She started on a trial of Growth Hormone, the easiest of possible treatment plans. This was unsuccessful. So we tried a once a day shot of IGF-1 replacement therapy. She had an allergic reaction to this so we had to discontinue that as well. Next we tried a medication called Increlex. This required injections twice a day. She was on this treatment plan for about 3 1/2 years.
Michelle grew very well on Increlex. Her growing pains stopped and she made it on to the growth chart for the first time since she was less than one year old. Unfortunately the side effects were a major issue for her. Due to severe hypoglycemia she had to stop taking the medication. After 7 months we recently recieved approval from our insurance company to start a combination therapy of growth hormone and Increlex. The growth hormone should regulate the blood sugar and help her growth velocity. We will be starting this therapy within the next 10 days.
During this journey, we have hooked up with many wonderful people. The Magic Foundation in Chicago has been a source of great support for us. Since this is a very rare disorder we are all learning together. I became the Division Consultant of the IGFD division several years ago. Helping other people dealing with the same issues as we are dealing with Michelle has given this experience some sort of purpose or meaning.
The other exciting adventure we are working on is helping a little girl named Rose Nacheca (everyone calls her Rodnashka). Rodnashka lives in Leogane Haiti. She came into our lives because Dan went to Haiti to visit an orphanage with our pastor and a friend from church last September. Dan is a board member for the orphanage. He came home and told me about a little girl who he was certain had a growth disorder like our Michelle. I never thought much about it until I met the missionaries (Greg and Jasmine Martinson) who run the orphanage in November. They had pictures of the children in the orphanage and when I saw a picture of Rodnashka it practically took my breath away! She looked just like Michelle, obvious complexion differences aside. They could have been twins. When I showed the picture to Dan he told me that was the girl he had been telling me about. I knew right then that I had to help her. My heart felt an immediate connection to her, something that I have never been able to understand really. We decided in early January we were going to try to get her here on some sort of medical visa and help figure out what was going on with her. Then January 12, 2010 happened. Her little world was shaken, houses fell all around her, and millions of lives were changed in an instant. The whole family at OLTCH (Operation Love the Children of Haiti, the orphanage she lives at) were totally unharmed. But, our focus then had to be their survival. Dan traveled back and forth many times in the wake of the earthquake. Each time he would spend time with her and bring back pictures of her for me! I traveled to Haiti in April and got the opportunity to meet her and spend Easter weekend with her and Greg and Jasmine and the OLTCH gang. I have prayed for a way to get her here everyday since then.
We first became aware of the world or growth disorders when our daughter Michelle was born in 2000. She was born in the 50% for height and weight and appeared to be perfectly healthy. After she was born it became increasing obvious that something was not right. She remained very small. At her 4 month check up she had fallen to the 10% for height. Slipping percentiles became the normal until, at 11 months, she was completely off the growth chart. That was a time of great worry, especially for me. Growing is one of the most basic of functions and when your child fails to acheive this it can be very very scary! Children eat, sleep and grow. Most of us take this for granted and never have to give it a second thought. But as we found out, sometimes it is not that simple.
We spent the first 5 years of her life going to doctor's appointments, specialists (endocrinology, gastroenterologists, orthopedic doctors, kidney doctors and allergy specialists) and spending many days at various hospitals having tests. It was a very frustrating experience for all of us. No one wants to see their child hurting. Michelle was so incredibly tough. She got so used to IV's, every stomach flu required IV fluids because she had absolutely NO weight to lose.
Not only would she not grow very much but every fraction of an inch that she would grow would cause so much pain! She would scream in the night and we would have to hold ice packs to her legs and give her pain medications.
Finally when Michelle was 5 years old we got the answers that we had been praying for, a diagnosis. Michelle was diagnosed with a rare disorder called Insulin like growth factor -1 deficeincy. The relief of finally having a diagnosis was quickly overshadowed with the reality of the treatment plan. Michelle requires shots every day to keep her growing. She started on a trial of Growth Hormone, the easiest of possible treatment plans. This was unsuccessful. So we tried a once a day shot of IGF-1 replacement therapy. She had an allergic reaction to this so we had to discontinue that as well. Next we tried a medication called Increlex. This required injections twice a day. She was on this treatment plan for about 3 1/2 years.
Michelle grew very well on Increlex. Her growing pains stopped and she made it on to the growth chart for the first time since she was less than one year old. Unfortunately the side effects were a major issue for her. Due to severe hypoglycemia she had to stop taking the medication. After 7 months we recently recieved approval from our insurance company to start a combination therapy of growth hormone and Increlex. The growth hormone should regulate the blood sugar and help her growth velocity. We will be starting this therapy within the next 10 days.
During this journey, we have hooked up with many wonderful people. The Magic Foundation in Chicago has been a source of great support for us. Since this is a very rare disorder we are all learning together. I became the Division Consultant of the IGFD division several years ago. Helping other people dealing with the same issues as we are dealing with Michelle has given this experience some sort of purpose or meaning.
The other exciting adventure we are working on is helping a little girl named Rose Nacheca (everyone calls her Rodnashka). Rodnashka lives in Leogane Haiti. She came into our lives because Dan went to Haiti to visit an orphanage with our pastor and a friend from church last September. Dan is a board member for the orphanage. He came home and told me about a little girl who he was certain had a growth disorder like our Michelle. I never thought much about it until I met the missionaries (Greg and Jasmine Martinson) who run the orphanage in November. They had pictures of the children in the orphanage and when I saw a picture of Rodnashka it practically took my breath away! She looked just like Michelle, obvious complexion differences aside. They could have been twins. When I showed the picture to Dan he told me that was the girl he had been telling me about. I knew right then that I had to help her. My heart felt an immediate connection to her, something that I have never been able to understand really. We decided in early January we were going to try to get her here on some sort of medical visa and help figure out what was going on with her. Then January 12, 2010 happened. Her little world was shaken, houses fell all around her, and millions of lives were changed in an instant. The whole family at OLTCH (Operation Love the Children of Haiti, the orphanage she lives at) were totally unharmed. But, our focus then had to be their survival. Dan traveled back and forth many times in the wake of the earthquake. Each time he would spend time with her and bring back pictures of her for me! I traveled to Haiti in April and got the opportunity to meet her and spend Easter weekend with her and Greg and Jasmine and the OLTCH gang. I have prayed for a way to get her here everyday since then.
The Magic Foundation wrote a formal invitation for Rodnashka to come attend the annual convention this July. We have worked out arrangements with our pediatrician to start some blood work, she will see an endocrinologist, pediactric dentist who specializes in children with growth disorders, and possibly Shriners.
Many people in Haiti have been working very hard to get everything lined up. We are coming down to the wire now though. Her passport is done, but as of the last time we talked to anyone it had not been picked up due to computer problems in Port Au Prince. We are praying very hard that God would make a way to get her here before the convention.
Hopefully this blog will be a way for us to keep everyone updated on everything that is happening as well as to keep our friends with children with similar disorders informed on how this new treatment is going. The endocrine world can sometimes be a scary and lonely place to be and it helps to know that you are not going through it alone.
We hope you can get Rodnashka here!! Praying for you.
ReplyDeleteSo cute!!!! See you soon! :-)
ReplyDeleteJamie H
Pray that everything works out for your family and Rodnashka! I am now following so I can keep in touch and learn more about her journey.
ReplyDeleteAmanda