It is with great joy that we tell you all that Henry's heart function has IMPROVED! Hallelujah Praise the Lord! Since Henry's diagnosis, the function improved a little the first few weeks he was in the hospital on the IV medication, but since then hasn't changed at all. In the last 45ish days it has gone up significantly! We are beyond thankful. His doctors attribute it to finally responding to his medication. So we will keep everything as is and keep praying that it continues to get better. Even though this doesn't mean anything about his future, it is such a relief today. Considering that 6 months ago we were thinking that Henry would need a heart transplant in the somewhat near future, this is a much better place to be! Thank you family, friends, and strangers for thinking of us and praying for us all so diligently the past 10 months. God is so good!
We also got word back on the genetic testing that I did to see if I was a carrier of Barth's Syndrome. I am not a carrier...this means that Henry's mutation is isolated to just him. This information doesn't affect Henry's diagnosis, it just means that Barth's Syndrome is not in my family anywhere else (particularly my sister), and that if John and I were to have more kids our risk of having another boy with Barth's is even lower. The way that the genetic counselor explained this to us was this: We all have 3 billion pairs of chromosomes that we inherit from our parents. 3 billion from mom that match up with 3 billion of dad's and that makes up the DNA of a baby. Science says to expect a copying error to occur once every million pairs in everybody. These copying errors can be errors that you never know about, errors that cause minor issues with your health, or major issues, as they are with Henry. So for reasons we will never know or understand, somewhere along Henry's strain didn't copy perfectly. It is in this place where he has mutated chromosomes that are associated with Barth's Syndrome, which cause cardiomyopathy. Anyway, good news all around and so much to be thankful for this month! Not to mention, celebrating one year of Henry's life! Happy Birthday Baby Henny!
We had quite the celebratory month...it started with Grandpa and Grandma Cheese (my dad and Allis) coming up for the weekend. We had a nice time...took Henry to the zoo for the first time and spent alot time playing and relaxing in the backyard. Grady got some good golf tips from Grandpa and showed them his skills with the baseball bat...Grandpa didn't know what to expect and sat back in the lawn chair and told Grady to hit one towards him off the tee. Well, he line drove it straight at Grandpa's head! Ha! He has a pretty amazing swing and can hit the ball really well. We had the first of our birthday dinners and tried the first of Henry's birthday desserts. I knew the whole cake thing was probably not going to go so well...Henry doesn't like sweets, but we offered them to him at all of his celebrations anyway~
Days later, Yaya and WhiWhi came in town. We did many fun adventures to celebrate Henry...picnicked and wine tasted in Napa, spent his actual birthday at the beach, and had a sweet little party for him that next weekend. We had a perfect beach day, which I guess this time of year can be hard because of the fog. But it was hot and crystal clear skies...felt like a Southern California beach day! The water is still freezing, but that didn't stop us from getting our feet wet. Or stop Grady from getting his whole body wet! As we were running up shore to escape an incoming wave, he slipped and fell flat on his tummy and got soaked! Sweet treat of that night: Ice cream sandwiches!
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birthday morning pancakes~ he does like pancakes! |
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| Grady blowing Papa's hat off...one of the many ways that Nana and Papa have been taking care of us these past month is coming to do our lawn...Papa normally comes when we aren't home or does it when they are babysitting the boys. We come home, and voila! The yard is perfectly mowed and edged! |
The Saturday of Henry's party, he decided not to take his morning nap. Therefore, when all of his party guest arrived, he was tired and cranky. So he took his nap through the first half of his party! This is him when I went to wake him up for cake and ice cream. (He has never been truly addicted to his pacifier, but has usually used it to fall asleep...this week though, he has completely refused it, so I guess we are done! Which was way easier than I anticipated!)
The party was great...it was super hot, but we had plenty of shady umbrellas and the sprinklers going! Yummy lunch of sausages, slaw, and chips, and ice cream for dessert. It was a beautiful day!
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| Birthday hat made by WhiWhi! |
After everyone left, we had our own sprinkler/swim time...in our speedos! Yes, that's right. Grady has one John's "speedo" from when he was a kid and Henry has on his cute "speedo"suit too. Two handsome French boys, if I do say so myself ;) For the record, G only wears the speedo in our backyard, but he says it's his favorite! That's because it's the closest thing to naked he can get, and that is his first preference! The best part is that the elastic is shot around the waist, so as you can see, it doesn't stay up very well! HaHa!
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| Henry kisses are the best! I remember loving them so much from G too at this stage...open mouthed and slobbery! |
Leading up to Henry's birthday, we had been praying that we would be able to just celebrate him for exactly who he is and where we are as a family; not wishing away this last year and hoping for things to be different. Which is hard, because we DO wish things were different. This is not the life that we had dreamed and hoped for our little boy. But this IS his life, and we are so grateful for every little second of it. And we celebrated it fully!
Our sweet Henry,
on your first birthday...
you are ALWAYS a joy, one of the most joyful, pleasant babies that we have ever known :); you love to smile; you are very ticklish around your face and neck; you now like to sit and read books...favorite book is the Little Mouse book; you still twinkle your toes almost all the time; you have chubby little knees with a single horizontal crease right in the middle; you love to stand and jump; you love to lay in the hammock and watch the trees; you love to watch your big brother do anything and you think he is the funniest person ever; you love to give kisses; you love to get kisses right on your chubby cheeks; you do the cutest eyes-squenched, teeth-clenched smile ever; you don't even cry when we have to put your tube in; you love taking baths, but you aren't too sure about the pool; you are 20lbs!; you can sit great and wiggle yourself around to face the action; you love to eat meat and cheese; you love avocado, especially guacamole; you are definitely a savory guy; you never wear shoes; you won't keep a bib on; you got your first tooth at nearly 13 months, with 3 more coming in right behind it; you may be inquisitive at a first meet or in a large crowd, but the smiles come quick; your big brown eyes are captivating to everyone you meet; your sweet disposition melts the hearts of many.
We love you soooo much, Henbugs, and couldn't be any more proud of you. We are thankful for every minute we get with you, taking not a second for granted. Thank you for all that you have taught us this first year of your life. We look forward to many, many more.
xoxo
Mommy, Daddy, and G
Another wonderful thing that happened in May was we baptized both boys. This is something we have been thinking about since before Henry was born, but this last year had just gotten away from us. I kept wanting to wait until Henry was "healthier", so that we could have a party or something, and not worry about all of the germs (we just started taking him to church with us and keep him with us in the back). But we decided it was time, and that we really wanted to do it sooner than later, not knowing what tomorrow would bring. So we did it! And the sweetest thing was that Grady, Henry, and Millie were all baptized together.
We believe that infant baptism is one of the many means of God's grace, demonstrating symbolically our covenant with God and our prayerful expectancy that someday God will invade Grady and Henry's hearts with the cleansing and renewing Holy Spirit. It was such a special day, surrounded by so many friends and family, and our wonderful church family that has supported us so well over the past year.
We had been talking to Grady about the process for a couple of weeks beforehand. The week before, we saw Pastor Bart as we were leaving church. As we drove away, G said, "Hey, Pastor Bart forgot to put water on my head!" He has since "baptized" himself again and a couple of his toys too;). He was pretty serious while we were up there, but the service wasn't complete without him trying to pull my hair. And Henry was a little fussy. We were both very hot and I think he just really needed his space...sometimes he just does, and he will let you know it!
We have had many more May adventures that I will update you on soon...maybe next week~so stay in touch :) And again, thank you, thank you, thank you from the bottom of our hearts, for ALL of your prayers...one of Grady's favorite songs keeps running through my head..."My God is so great! So strong, and so mighty! There's nothing my God cannot do! For YOU!"
