We were back at Children's Mercy today for another visit with Dr. Blowey. Boston looks great and is growing well. He is at the top of the growth charts: 94% in height at 22 inches; 98% in weight at 11 pounds, 7 ounces and 97% in head circumference at 40 cm.
Boston's labs looked great. His protein level in his blood was stable again at 3.7, which is normal. All of his blood work was normal. We are waiting for the actual ratio of protein to creatinine in his urine, but the dipstick was negative for protein.
With all of this good news, Dr. Blowey said we can wait another month before having labs drawn again, and if those are normal, we will not have to go back to Children's Mercy until June.
We should get the results of the repeat genetic test back from Athena Diagnostics in a couple of weeks.
Tuesday, March 3, 2009
Monday, March 2, 2009
The Power of Prayer
Since we found out about Boston’s condition we have been earnestly praying and we wanted to give an update about how our prayers have been answered. Most of our prayers focused on Boston's gestation and birth and have been answered. It was amazing to see how God answered our prayers. What was even more amazing was to see him answer prayers we did not dare to pray and shower us with blessings for needs that we did not know how to articulate. We did not expect that the labor would be so short and easy; that Sarah could avoid a c-section; that Sarah would recover so quickly from the labor and delivery; that Boston would be so calm and easygoing; that Boston would be able to go through 5 days of photo therapy without issue; that Boston would take to breastfeeding and bottle feeding so easily; that Clark would adapt so quickly and so well to being a big brother; and that we would be so supported and uplifted by friends, family, and strangers alike.
Our prayers that were listed on the right hand side of the page have been answered in the following ways:
Prayer: That Sarah will be strengthened with all of God's glorious power so she will have all of the endurance and patience she needs to finish the pregnancy with a cheerful spirit. Answered: Within a day after posting this request, Sarah felt uplifted and strengthened by God’s power. She was able to faithfully wait out the rest of the pregnancy. Sarah had an easy labor and delivery and recovered quickly.
Prayer: That Boston would be completely healed and that he will be born healthy with no complications; That Boston be healed completely; That he has a mild form of disease that does not affect his functionality.
Answered: In God’s wisdom, Boston was born with a body that compensates for an extra loss of protein in such a way that he has no other complications. Because of this, he is currently not classified as having any form of nephrotic syndrome. This is an impossible miracle that we could not have understood nor prayed for, but we are exceptionally grateful for God’s understand of the complex workings of our bodies.
Prayer: That Boston’s kidneys will continue to improve and show no sign of “texture” or “brightness” on the ultrasound.
Answered: Boston’s kidneys improved and the ultrasound after Boston was born showed no abnormalities: the kidneys were formed and function correctly, although they do not filter as expected.
Prayer: That he will grow quickly and gain weight well in order to reach transplant size.
Answered: This prayer has been answered in abundance. Boston made it to almost 39 weeks and weighed in at 8 pounds, 3 ounces. At one month he weighs 11 pounds, 7 ounces. The normal weight gain range for a breastfed baby is 5 to 8 ounces per week, so he had a target weight gain of 20 to 32 ounces. He gained 52 ounces! This weight gain is his protection against any future problems and brings him closer to a transplant weight, should he ever need one.
Prayer: That Sarah and Brian will be able to prepare for the worst without losing perspective on the big picture.
Answered: We found this to be much harder than we anticipated, especially in the first few days of Boston’s life when we were told that he was losing protein and to expect him to get sick. We know, however, that this preparation would have been impossible without the knowledge of God and our relationship with Jesus.
Prayer: That the doctors will find a cause for his ridiculously high AFP and be able to treat it accordingly.
Answered: The cause of Boston’s high AFP was the protein that he is passing into his urine. Miraculously, however, it requires no treatment at this time.
Prayer: That the level of his amniotic fluid will stay normal in order to allow his lungs to develop and to reassure us that he does not have complications.
Answered: this was answered in abundance: Boston’s amniotic fluid stayed normal until the final weeks of his gestation, allowing his lungs to fully develop.
Prayer: That he will have use of his eyes and not be blind.
Answered: Boston’s eyes are normal at this time and he is meeting all of the development markers for focus and tracking.
Prayer: That his muscles will be strong and his brain alert.
Answered: Boston has a strong vice grip in his hands. His head and neck strength are increasing every day and he is ahead of the curve on being able to support his head on his own. He is also advancing in his head and shoulder strength during his tummy time.
Prayer: That Sarah will be able to learn and understand about the disease and treatments.
Answered: Through the support and encouragement of the medical team, Sarah was able to gain all the information necessary to converse with the doctors in a knowledgeable manner about Boston’s condition. It was a compliment to her to be regarded as an “expert” on Boston’s condition.
Our prayers that were listed on the right hand side of the page have been answered in the following ways:
Prayer: That Sarah will be strengthened with all of God's glorious power so she will have all of the endurance and patience she needs to finish the pregnancy with a cheerful spirit. Answered: Within a day after posting this request, Sarah felt uplifted and strengthened by God’s power. She was able to faithfully wait out the rest of the pregnancy. Sarah had an easy labor and delivery and recovered quickly.
Prayer: That Boston would be completely healed and that he will be born healthy with no complications; That Boston be healed completely; That he has a mild form of disease that does not affect his functionality.
Answered: In God’s wisdom, Boston was born with a body that compensates for an extra loss of protein in such a way that he has no other complications. Because of this, he is currently not classified as having any form of nephrotic syndrome. This is an impossible miracle that we could not have understood nor prayed for, but we are exceptionally grateful for God’s understand of the complex workings of our bodies.
Prayer: That Boston’s kidneys will continue to improve and show no sign of “texture” or “brightness” on the ultrasound.
Answered: Boston’s kidneys improved and the ultrasound after Boston was born showed no abnormalities: the kidneys were formed and function correctly, although they do not filter as expected.
Prayer: That he will grow quickly and gain weight well in order to reach transplant size.
Answered: This prayer has been answered in abundance. Boston made it to almost 39 weeks and weighed in at 8 pounds, 3 ounces. At one month he weighs 11 pounds, 7 ounces. The normal weight gain range for a breastfed baby is 5 to 8 ounces per week, so he had a target weight gain of 20 to 32 ounces. He gained 52 ounces! This weight gain is his protection against any future problems and brings him closer to a transplant weight, should he ever need one.
Prayer: That Sarah and Brian will be able to prepare for the worst without losing perspective on the big picture.
Answered: We found this to be much harder than we anticipated, especially in the first few days of Boston’s life when we were told that he was losing protein and to expect him to get sick. We know, however, that this preparation would have been impossible without the knowledge of God and our relationship with Jesus.
Prayer: That the doctors will find a cause for his ridiculously high AFP and be able to treat it accordingly.
Answered: The cause of Boston’s high AFP was the protein that he is passing into his urine. Miraculously, however, it requires no treatment at this time.
Prayer: That the level of his amniotic fluid will stay normal in order to allow his lungs to develop and to reassure us that he does not have complications.
Answered: this was answered in abundance: Boston’s amniotic fluid stayed normal until the final weeks of his gestation, allowing his lungs to fully develop.
Prayer: That he will have use of his eyes and not be blind.
Answered: Boston’s eyes are normal at this time and he is meeting all of the development markers for focus and tracking.
Prayer: That his muscles will be strong and his brain alert.
Answered: Boston has a strong vice grip in his hands. His head and neck strength are increasing every day and he is ahead of the curve on being able to support his head on his own. He is also advancing in his head and shoulder strength during his tummy time.
Prayer: That Sarah will be able to learn and understand about the disease and treatments.
Answered: Through the support and encouragement of the medical team, Sarah was able to gain all the information necessary to converse with the doctors in a knowledgeable manner about Boston’s condition. It was a compliment to her to be regarded as an “expert” on Boston’s condition.
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