Grace is our youngest child and like her brothers, was adopted from the country of Guatemala. In order to tell her story, I need to tell you some background information on our family and Guatemalan adoptions as they were when we adopted.
Mark and I have always wanted four children. We really felt that that would be the perfect number for our family. So in 2006 when we brought Luke (our 2nd child) home from Guatemala, we decided to wait until 2008 to adopt again. This would put 2 years between the kids, which is the age difference between John (adopted in 2005) and Luke. However, there were rumblings that Guatemalan adoptions would close due to issues with the Hague convention and governmental pressures. Since we knew that 2 was not the number of children we wanted to have, we moved our 3rd adoption up from 2008 to 2007. And were completely ready on paper in January 2007 to accept a referral. Under the adoption system in Guatemala at the time, adopting parents completed a lot of paperwork, had background checks and basically were approved by a homestudy agency and found to be eligible to adopt. All of this paperwork was then sent to Guatemala and your adoption agency matched the potential adoptive parents with a baby. Once the baby was 'accepted' by the potential adoptive parents the adoption process in Guatemala would start. At the end of the adoption process, which at the time was taking about 6-8 months, the baby was legally considered the child of the adoptive parents and could be brought to the US.
Grace's Story
So we were 'paper ready' to accept a referral in January of 2007 and had decided not to select gender this time. In our past two adoptions we had requested boys - which made our wait for a referral much shorter since girls were in a higher demand at the time. So we checked the box 'first available'. I did talk with the Director of our adoption agency and she said, that I deserved a girl after the 2 boys and that she would do what she could. I clarified that we did not want to be caught in any delays due to changes in the adoption system/process in Guatemala and truly would be happy with either a boy or a girl. In fact, I was so convinced I was going to have another boy that I decided on a name and almost got something monogrammed!
On February 6, 2007 after waiting 4 weeks (which seemed like FOREVER at the time) our agency director called and said, I have a baby girl for you. I was so happy. I didn't realize at the time just how badly I wanted a girl but when she told me I was going to have a daughter, I cried. We accepted her referral and joyfully planned for our daughter to join our family sometime in the summer. We got monthly updates on Grace (not her birth name but the one we chose for her) in the form of medical reports, pictures from our agency and 'surprise visit' reports (where the foster mother manager would stop by the house unannounced and check on the baby). This was our 2nd adoption through this agency and we had a lot of trust in them. Actually, we still do.
In May of 2007 my mom and I got to go visit Grace for Mother's Day, my incredible husband sent us to Guatemala for a week. It was a great visit and the first time my mom and I had spent that much time together by ourselves. I loved it!! Grace was doing well and it was heaven to be able to have her in our hotel room for 5 days. At this point in our adoption, we were in PGN which was considered by most to be the final step of Guatemalan adoptions. Once the PGN approved your adoption the baby was legally your child and the remaining steps took about 3-4 weeks before you could bring your baby home. So we left Guatemala thinking that we would be back in July to bring Grace home. However, our stay in PGN was twice the average at that time and we did not get out of PGN until mid-July.
In fact, it was during the call to tell us we were out of PGN that our agency told us there was a 'problem' with the baby and the pediatrician in Guatemala has serious concerns about the health and well being of our baby. I don't think I will ever forget that phone call. We had just driven 8 hours to North Carolina with our 2 children ages 3 1/2 and 18 months and were going to spend 2 days in a hotel at a conference and then drive back home 8 hours. My cell phone rang right after we had checked in and I was trying to get a snack ready for the kids before we left for the night. Our room was full of people; the babysitter, the kids, our business friends and I was trying to hear a phone call that was breaking my heart. The agency told me that the doctor in Guatemala thought Grace's brain was shrinking or dying and that she had lost some skills that she previously had. This was between her 5 th and 6 th month well baby checkups. Most significantly, her head circumference, height and weight had all stayed the same. Meaning, she was not growing at all in a time when most babies grow pretty quickly. The doctor was so concerned that Grace had a CAT scan and blood work the same day she came into his office. I was in shock. This was not the happy you are out of PGN call I had been expecting.
The agency told us at that time and several times after that, that we could decide not to bring Grace home or disrupt her adoption. My gut reaction was then and continues to be - we are a family of faith. If this is the child that God has chosen for us, this is the child we will bring into our home. I just could not imagine abandoning her at this point. I already loved her. I already made plans for her. I already picked out her room and clothes. She was my baby. Now my heart was breaking and we had a lot of questions. But we left North Carolina vowing to fight for the best life possible for Grace.
In the next few weeks, we got more medical reports and the final 'diagnosis' was that her brain was shrinking and possibly dying and that she may not survive. I also heard that maybe she was 'just' blind and deaf. But due to our faith and belief that God would provide for us, Mark and I left for Guatemala with expectancy in our hearts. We were excited to be adding a new baby to our family and had the joy and anticipation that most parents feel when getting to meet their new baby either by adoption or birth. It did help that we were thousands of miles away from her and had not actually seen her to know the extent of her needs. But we really just had peace that she was going to be okay.
When we saw her in the hotel for the first time, I just knew she was going to be okay. She looked completely normal and exactly the same as the last time I saw her 3 months before. We had a great 3 days with her in the Westin Hotel in Guatemala City, finalized all her paperwork and took her to the US Embassy to get her visa and passport, took a day trip to Antigua and generally hung out with Grace all by ourselves (for the one and only time!). We brought her home and thanks to our wonderful pediatrician were able to get her into see the best specialists in the area.
We took her to a neurologist, Dr. B, and he evaluated Grace, her medical records, the CT scan she had done in Guatemala and stated that he thought her brain was not shrinking or dying and that she should start growing again. He was the first one that validated our feelings that she was going to be okay and took us from optimism to encouragement. We had an MRI of her brain done and it showed delayed mylination (the white matter in her brain did not match her physical age). He was the one that stated she did not have a degenerative brain disorder and he said that something happened to her to cause her growth to stop but that she was now back on track and starting to grow again. I felt hope in his office for the first time in months. He did say that we may never know what happened to her and we agreed that it did not change the way we saw her future.
We took her to see a pediatric ophthalmologist who stated she had Cortical Visual Impairment (CVI) which meant that she saw and that her eye and optic nerve were normal but her brain couldn't interpret properly what she was seeing so Grace did not react. A pediatric ENT did every hearing test possible and stated that Grace's ears were normal. She heard and was hearing things but similar to CVI it was not clear what she was interpreting so that may be why she did not react to sounds.
We got connected with our County's Early Intervention program and had Grace evaluated for services. At 9 months old, she was testing at a 0-3 month old level. While not unexpected, this news devastated me. I was hoping she was farther along. We started weekly services and really saw little improvement with Grace for months. Finally, the following August she started crawling and showing the desire to move and manipulate toys. But she was still bottle fed and still on 100% pureed foods - she was 20 months old when she learned to crawl. We had numerous genetic tests done via blood tests and everything checked out normally. Dr. B was not encouraged that she had not progressed further at this point. We were waiting until a year had passed to do another MRI and it was during my visit with Dr. B in November that he stated he thought she had Rhett's Syndrome. This is a (non-inherited) genetic disorder that affects mainly girls and is a devastating diagnosis to the girls and families who have this disease. We got her MRI done in early December and the blood drawn to rule out Rhett's while she was sedated. The MRI showed that her myelin had developed and her brain was to be considered 'normal' for her age.
We suffered through 2 dark months with the diagnosis of Rhett's hanging over our family. Based on our research and observation of Grace, we had pretty much convinced ourselves (and her EI team) that Grace had Rhett's. We met with our local genetic specialist on January 16th and she stated based on her observations and evaluation Grace did not have Rhett's. It was during this appointment that we got the blood test results that confirmed it.
Grace's Story
So we were 'paper ready' to accept a referral in January of 2007 and had decided not to select gender this time. In our past two adoptions we had requested boys - which made our wait for a referral much shorter since girls were in a higher demand at the time. So we checked the box 'first available'. I did talk with the Director of our adoption agency and she said, that I deserved a girl after the 2 boys and that she would do what she could. I clarified that we did not want to be caught in any delays due to changes in the adoption system/process in Guatemala and truly would be happy with either a boy or a girl. In fact, I was so convinced I was going to have another boy that I decided on a name and almost got something monogrammed!
On February 6, 2007 after waiting 4 weeks (which seemed like FOREVER at the time) our agency director called and said, I have a baby girl for you. I was so happy. I didn't realize at the time just how badly I wanted a girl but when she told me I was going to have a daughter, I cried. We accepted her referral and joyfully planned for our daughter to join our family sometime in the summer. We got monthly updates on Grace (not her birth name but the one we chose for her) in the form of medical reports, pictures from our agency and 'surprise visit' reports (where the foster mother manager would stop by the house unannounced and check on the baby). This was our 2nd adoption through this agency and we had a lot of trust in them. Actually, we still do.
In May of 2007 my mom and I got to go visit Grace for Mother's Day, my incredible husband sent us to Guatemala for a week. It was a great visit and the first time my mom and I had spent that much time together by ourselves. I loved it!! Grace was doing well and it was heaven to be able to have her in our hotel room for 5 days. At this point in our adoption, we were in PGN which was considered by most to be the final step of Guatemalan adoptions. Once the PGN approved your adoption the baby was legally your child and the remaining steps took about 3-4 weeks before you could bring your baby home. So we left Guatemala thinking that we would be back in July to bring Grace home. However, our stay in PGN was twice the average at that time and we did not get out of PGN until mid-July.
In fact, it was during the call to tell us we were out of PGN that our agency told us there was a 'problem' with the baby and the pediatrician in Guatemala has serious concerns about the health and well being of our baby. I don't think I will ever forget that phone call. We had just driven 8 hours to North Carolina with our 2 children ages 3 1/2 and 18 months and were going to spend 2 days in a hotel at a conference and then drive back home 8 hours. My cell phone rang right after we had checked in and I was trying to get a snack ready for the kids before we left for the night. Our room was full of people; the babysitter, the kids, our business friends and I was trying to hear a phone call that was breaking my heart. The agency told me that the doctor in Guatemala thought Grace's brain was shrinking or dying and that she had lost some skills that she previously had. This was between her 5 th and 6 th month well baby checkups. Most significantly, her head circumference, height and weight had all stayed the same. Meaning, she was not growing at all in a time when most babies grow pretty quickly. The doctor was so concerned that Grace had a CAT scan and blood work the same day she came into his office. I was in shock. This was not the happy you are out of PGN call I had been expecting.
The agency told us at that time and several times after that, that we could decide not to bring Grace home or disrupt her adoption. My gut reaction was then and continues to be - we are a family of faith. If this is the child that God has chosen for us, this is the child we will bring into our home. I just could not imagine abandoning her at this point. I already loved her. I already made plans for her. I already picked out her room and clothes. She was my baby. Now my heart was breaking and we had a lot of questions. But we left North Carolina vowing to fight for the best life possible for Grace.
In the next few weeks, we got more medical reports and the final 'diagnosis' was that her brain was shrinking and possibly dying and that she may not survive. I also heard that maybe she was 'just' blind and deaf. But due to our faith and belief that God would provide for us, Mark and I left for Guatemala with expectancy in our hearts. We were excited to be adding a new baby to our family and had the joy and anticipation that most parents feel when getting to meet their new baby either by adoption or birth. It did help that we were thousands of miles away from her and had not actually seen her to know the extent of her needs. But we really just had peace that she was going to be okay.
When we saw her in the hotel for the first time, I just knew she was going to be okay. She looked completely normal and exactly the same as the last time I saw her 3 months before. We had a great 3 days with her in the Westin Hotel in Guatemala City, finalized all her paperwork and took her to the US Embassy to get her visa and passport, took a day trip to Antigua and generally hung out with Grace all by ourselves (for the one and only time!). We brought her home and thanks to our wonderful pediatrician were able to get her into see the best specialists in the area.
We took her to a neurologist, Dr. B, and he evaluated Grace, her medical records, the CT scan she had done in Guatemala and stated that he thought her brain was not shrinking or dying and that she should start growing again. He was the first one that validated our feelings that she was going to be okay and took us from optimism to encouragement. We had an MRI of her brain done and it showed delayed mylination (the white matter in her brain did not match her physical age). He was the one that stated she did not have a degenerative brain disorder and he said that something happened to her to cause her growth to stop but that she was now back on track and starting to grow again. I felt hope in his office for the first time in months. He did say that we may never know what happened to her and we agreed that it did not change the way we saw her future.
We took her to see a pediatric ophthalmologist who stated she had Cortical Visual Impairment (CVI) which meant that she saw and that her eye and optic nerve were normal but her brain couldn't interpret properly what she was seeing so Grace did not react. A pediatric ENT did every hearing test possible and stated that Grace's ears were normal. She heard and was hearing things but similar to CVI it was not clear what she was interpreting so that may be why she did not react to sounds.
We got connected with our County's Early Intervention program and had Grace evaluated for services. At 9 months old, she was testing at a 0-3 month old level. While not unexpected, this news devastated me. I was hoping she was farther along. We started weekly services and really saw little improvement with Grace for months. Finally, the following August she started crawling and showing the desire to move and manipulate toys. But she was still bottle fed and still on 100% pureed foods - she was 20 months old when she learned to crawl. We had numerous genetic tests done via blood tests and everything checked out normally. Dr. B was not encouraged that she had not progressed further at this point. We were waiting until a year had passed to do another MRI and it was during my visit with Dr. B in November that he stated he thought she had Rhett's Syndrome. This is a (non-inherited) genetic disorder that affects mainly girls and is a devastating diagnosis to the girls and families who have this disease. We got her MRI done in early December and the blood drawn to rule out Rhett's while she was sedated. The MRI showed that her myelin had developed and her brain was to be considered 'normal' for her age.
We suffered through 2 dark months with the diagnosis of Rhett's hanging over our family. Based on our research and observation of Grace, we had pretty much convinced ourselves (and her EI team) that Grace had Rhett's. We met with our local genetic specialist on January 16th and she stated based on her observations and evaluation Grace did not have Rhett's. It was during this appointment that we got the blood test results that confirmed it.
Grace continues to grow, improve and develop new skills. She is currently able to walk independently, a skill she learned last year (2009) right before Thanksgiving. She is also able to walk up and down the stairs on her own, something she just learned this month (Oct. 2010). She attends a wonderful school, the ARC of Chester County, four days a week. Which is where she receives all of her therapies. Grace continues to need to be fed all of her meals in pureed form and has not yet talked. Both are areas that we are working on and praying for improvement.
