Family Pictures

Happy Birthday!

Our baby boy is 1 year old today! I am filled with joy that our path has led to this wonderful day. The most fitting words I can say are the lyrics from Matt Redman's "Let My Words Be Few":

You are God in heaven
And here am I on earth,
So I'll let my words be few-
Jesus I am so in love with You.

And I'll stand in awe of You,
Yes I'll stand in awe of You,
And I'll let my words be few-
Jesus I am so in love with You.

The simplest of all love songs
I want to bring to You,
So I'll let my words be few-
Jesus I am so in love with You.

We have some wonderful pictures of Boston's year that will be posted soon!

Update

Boston is now almost five months old. His latest lab results have confirmed that he is completely healed. He is a perfect little baby...so easy, happy, and lovable. He always has a ready smile and is developing beautifully. He loves to look at faces and watch others interact. He will coo and sing along with us. He is grasping and throwing his toys, rolling over, sitting up and starting to stand. He and his brother share a mutual affection, so much so that Clark first said "Love you, Bahs-sah" before he told anyone else that he loved them. Boston has been released from Children's Mercy care; all of his future testing, which will just consist of a yearly urine protein test, will take place at his regular checkups. We are truly blessed.

Boston in the tub.

Playing in the exersaucer. He can throw his ball two feet!

Father's Day!

My (hot) boys.

Standing up. That boy has strong legs!

Milestones and Dedication - You're Invited!

We've hit a big one! Boston is now three months old. This is especially significant to us because the technical definition of congenital nephrosis states that it will develop by three months. We are so blessed that Boston has made it to his three month birthday with no symptoms and has in fact been completely healed.

It seems fitting, therefore, that we are able to celebrate his birth and dedication so near to this milestone. Boston will be dedicated next Sunday as part of our morning church service. We will be having an open house from 2-5 in the afternoon and invite everyone to stop by to see Boston and share in our happiness!

The details are:

Dedication
11:00 am
Heartland Community Church - South Campus
15100 W. 127th St.
Olathe, KS 66062

Open House
2:00 - 5:00 p.m.
14630 W. 85th Terrace
Lenexa, KS 66125

We hope you can come!

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.