Our Miracle

Boston has been completely healed! The lab results today indicated that the level of protein in his urine is normal. When he was born, his protein to creatinine ratio was 7 to 1; today it was 0.38 to 1. When he was born, the actual protein level in his urine was 350; today it was 2. When he was born, the protein level in his blood was 3.1 (normal is above 3.59); today it was 4.3. The doctors told us that he is completely normal and that there is nothing to indicate that he will have any issues as he grows up.

Additionally, the genetic tests came back and were exactly the same as before he was born, which is additional reassurance that he only has one broken gene, not two, and therefore will only be a carrier of Pierson Syndrome rather than have it himself.

We will follow up with the docs in 2 months, and then again in 6 months, and then every year after that to make sure that nothing changes, but the docs are happy to see us as little as possible.

We understand that we are living a miracle; that God has blessed us beyond our wildest imaginings; that our son could have died and instead has been healed...and we feel grateful and blessed. We are thankful for your prayers and for God's endless grace and mercy. Amazing grace. Our son has been healed.

In addition to this wonderful news, we also celebrate that Boston is 2 months old now. We not only got to hear the great news about his labs, we also got to visit his run-of-the-mill pediatrician for his 2 month check-up. He is 14 pounds! He is in the 97th percentile, but still on the chart. He has gained the maximum amount of weight on the "normal" growth chart. It is such an answer to prayer because before he was born we were not sure if he would grow at all.

Our family of four is loving life and our time together. I did not anticipate how hectic daily life would be and how little time I would have to spend on my own pursuits, but I love my boys and would not trade time with them for anything. Hopefully, I will have more time to blog soon :)

Here is Boston on his 2 month birthday!

Clark and I at the Wichita zoo looking at the cows.

Brian came home one day to find both boys asleep on my lap. We were watching Jeopardy!

Boston asleep in the sink (Brian thought this would be a funny picture).

Clark on the first night he slept in his big boy bed.

Clark getting his hair cut at Shear Madness.

The women of Anthony, KS who prayed for Boston's healing (Brian's mom Diana is holding Clark).

This is how Clark looks when you ask him to say "Cheese!" for the camera.

Boston smiling in his sleep.

Good News at the Doctor's

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.

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.

More Pictures

This pic showcases Boston's chin that looks like Brian's.

Eyes open.

On our last day at Children's Mercy in his going home outfit.

Asleep at home.

Update to Volunteering/How Can You Help?

We have been abundantly blessed by everyone's outpouring of gifts and wanted to keep everyone updated on what would be most appreciated as our needs change.

Now that we are home we have really appreciated the meals and gift cards to restaurants that have been given. It is such a blessing to not have to go to the store and prepare meals.

Play dates for Clark are also something we are looking to set up. The best times are 9-11 and 3-5. If you would be willing to have Clark over, please contact us with available days and times.

Gift cards to Babies R' Us or Wal-Mart -- for diapers, burp rags, pacifiers, breast milk storage bags, and other baby essentials that always seem to be in high demand.

Prayer -- we can never have enough. And why stop now when our prayers have been answered so abundantly?

Contact us at ihearttheprestons@gmail.com if you are willing to help. Donations and gifts can be mailed to us or dropped off at 14630 W. 85th Terrace, Lenexa, KS 66215. We can't tell you how much we appreciate all of your prayer and support.

Changed Diagnosis

Boston and I went to Children's Mercy yesterday to have his labs drawn and then were back again today to talk over the results with Dr. Blowey. His lab work remains stable. His protein to creatinine ratio in his urine was 5.81 to 1. Anything over 0.5 is abnormal, so 5.81 is definitely an indicator that he is dumping protein in his urine. The expectation has been from the beginning that as he continues to dump protein in his urine that his protein level in his blood would drop too, and thus cause all of the complications, but we have not seen this happen. His protein in his blood (albumin) was 3.3; he has ranged from 3.1 to 3.8 with 3.5 being the bottom end of the normal range.

Because of Boston's miraculous stability and the fact that he has protein in his urine, but none of the other signs of congenital nephrosis, Dr. Blowey changed his diagnosis from congenital nephrosis to proteinuria (a diagnosis that means he has protein in his urine). Dr. Blowey says he looks great and we have done all that we can, so now we just watch him and keep our fingers crossed. Our next follow up appointment is in two weeks.

This is such a cause for praise in our household. I have been challenged to be completely and utterly joyful and giving of praise to God for what he is doing in Boston's life. My tendency was to be "cautiously hopeful" and to not fully embrace Boston's health as a miracle out of fear that he could take a turn for the worse. Over the past couple of days I have come to realize that God is not one who makes us "knock on wood" that he won't take our blessings away -- He doesn't punish us for being too happy with his gifts. And so we embrace Boston's health for what it is--an absolute miracle and answer to prayer. And we praise God for his goodness and mercy and for our beautiful boy!