Little Rose Nacheca is adjusting to life in America just perfectly! She loves to laugh and dance. She tries to be silly to make us all laugh too! She has really been a bright light in this house all week!

Most of you know that the US Customs and Border Protection extended her stay in the United States 6 MONTHS! God's hands have been all over her little life and this situation and it is just amazing to see how he has opened doors and peoples hearts all around her. We are in awe!! Thank you to everyone who has been praying for her. The prayers are working!

She met with a lot of doctors this week. We got some good news and some bad news. The good news is that she tested negative for HIV and Hepatitis. The bad news is that she has a significant heart murmur. Her endocrinologist wants to make seeing a cardiologist a top priority. He really believes she has a congenital heart disease. While that can cause slower growth, it would not be to the extreme at which she is failing to thrive. So she definately has other issues happening at the same time. He was very reassuring though and said that this could be treated, but not in Haiti. So our first priority has been getting a good look at her heart. They ordered an echocardiogram and we got some referrals to a pediatric cardiologist.

On a funny note, I am not very good at dealing with her hair LOL! Our neighbor helped us out with that and tonight we met two awesome women who do braiding. They came out and did her hair so that she would look beautiful tomorrow when we take her to church to meet all the people who have been praying for her and supporting her OLTCH family. They were christian women and they were just amazing. They even did Michelle's hair while they were here. They said that they would be happy to do Rose Nacheca's hair for free anytime!

Speaking of OLTCH please remember to keep them in your prayers as well. The work that Greg and Jasmine do in Haiti is such a blessing for those little children!

Goodnight!

Praise God!!! Rose Nacheca finally made it to the United States :) She left Haiti on Friday July 23rd and arrived at the Magic Convention in Chicago on Saturday July 24th! She was able to meet with a Pediatric Dentist and one Pediatric Endocrinologist who took MANY pictures of her to send to geneticists and an internation adoption specialist trained in identifying conditions based on physical characteristics.

They agreed that she definately has some major issue and they are going to help us figure out what it is. This is very great news!!!

She will meet with an endocrinologist tonight who specializes in a very rare and unique disorder, Russell Silver Syndrome. Rose Nacheca has some characteristics of this but not all. This doctor can usually tell just by a physical exam whether or not this is what is wrong or not.

We will head home tomorrow and start a series of doctors appointments for her there!

Update on Michelle: Michelle started her growth hormone therapy last week. She is doing great! She was very concerned about the pen device used to give the growth hormone. Until now all the medication she has been on has been given through regular syringes so this was a new thing for her. After much objection on her part she tried it and really likes the way it works.

Once we get home we will start the Increlex again. We did not want to worry about the blood sugar issues that she deals with while using Increlex while we were traveling.

Thanks so much for all of you who have been praying for our situation. The prayers are definately working. The next step we have to deal with is to get Rose Nacheca's visa extended. The Haitian government was not very generous with the time they gave us with her. Her visa is currently only for 10 days. This is NOT enough to get everything done that we need to do! It took 5 years for us to get an accurate diagnosis for Michelle. But now we are very well connected in the endocrine world and have many doctors on board and ready to help. The senator's office is ready and willing to help us get the visa extended. So keep praying that is as easy as they made it sound!

Thanks again! I am going to go outside and blow bubbles with my two favorite "Magic" girls!

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.

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.