April

April in summary (it is in summary, but it's not short! Sorry!)…after a very long, tiresome, and difficult past few months, I finally feel like we are getting back to "normal"! For many reasons, I know, but mostly because Henry is doing so much better. Also, the sun is shining during longer days and the flowers are blooming; we celebrated (and are still celebrating!) Christ's resurrection; I've been spring cleaning and organizing, putting away and filing things that have been out of place for nearly a year! Those things always make me feel better too ;). 

We have been outside a lot…weeding, gardening, riding bikes, walking, and picnicking. Grady loves to ride his bikes…he sometimes asks to go outside even before we have eaten breakfast in the mornings! He will throw his crocs on, run into the garage, pun on his helmet, and come zooming out on either his old tricycle or big red bike, do a couple of laps around the patio and driveway and ride back into the garage to switch wheels and out he comes again. Just this week, he popped his back tire on the bike he got for Christmas from skidding on his brakes too much. We ride/walk/wagon ride to the "bee tree" and around the block daily. He also loves to play in the dirt with his trucks and tractors…could do this for hours. And he is a great helper in the yard…loves to help rake, scoop dirt, and water. He even helped me refinish our engagement bench the other day! He loves to go get the mail everyday, and "help" open packages with his new scissors. Even with all of this great outdoor time, he still loves "watching something on his TV" too! We did the coolest thing this month...we watched our very own caterpillars grow from larvae, to caterpillars, make cocoons, and emerge as beautiful butterflies! You can send away for this butterfly kit, and it was my favorite thing that we have done together so far...we will plan to do it every spring! I highly recommend it!

Not to speak badly about our sweet little boy, but more to just be truthful, he has been testing us in all shapes and forms more so lately than ever before. We have great days splattered with terrible moments...I often ask him if he can even hear, because it seems as though he can't ;). And he has started a new dramatic thing, where he can cry and throw a fit for nearly an hour before he settles down...we have only had a couple of these episodes and I am hoping it is a short phase. I received great advice from a friend recently who has a son two years older than Grady. She told me stories of how she was afraid he was this aggressive bully until his preschool teacher (mother of boys) reassured her that was perfectly normal, and simply A BOY! She encouraged us to have opportunities for Grady to take out this rough energy and work on teaching him when and where it was ok to for him to act that way (mainly wrestling with daddy). And eventually he would grow out of it. I am hoping this is true! 

He is really interested in letters right now...working on recognizing them and learning their sounds...it is so fun to watch him learn in this way. Also, telling time...John still uses the alarm clock that Char gave him when he was in like 5th grade...it is huge and has big red numbers...and no radio! Just a LOUD horn of an alarm. Grady has always liked it, and recently started asking if he could have it in his room...we'll see if John can part and pass it on! He also loves to sing...he learned a great new song (thanks, Totsy!) and loves to make up his own. Most of the time, they are about someone he loves with the refrain "pe-cause..." happening several times throughout. IE...the henry song..."Henry song! Henry song! Henry is my brother! Pe-cause I love him! Pe-cause he is nice baby! Pe-cause he just is!"And then he says, "You like that song?"

 G had his first dentist appointment this month...I was a little nervous about how he was going to do...he did awesome! I was so proud. He was such a gentleman, had his teeth examined and cleaned, and got a great report on his mouth. He looked like such a big boy sitting up in the chair. 

We got to go to Tahoe! Months ago, we had planned a trip with four other families...all to be staying in a friend's family house. Well, we canceled the Monday before we were supposed to leave, realizing that it could be a nightmare trip for us...me, John, G, and Henry all in one room, with Henry's loud pump, and him throwing up several times a night. We were so sad, but reality was that we just couldn't make it work. Well, by Friday when the other families were supposed to be heading there, two of them canceled, leaving the host family there alone. I got a call at noon from my sweet friend, Julie, saying that if we wanted to come, we would have the whole downstairs to ourselves and that we would not be a burden in any way. One phone call to John at work and some tears later, we threw everything in the car and just went! We decided that we really needed the time away and that it would be good to breathe some cool mountain air. And it was just that--refreshing. I don't know what it was, but from that weekend on, Henry has been doing so much better, which is such an answered prayer because I was very near breaking point. We had two full days of just play...we sledded, rode a gondola up to the Ritz for hot chocolate, and enjoyed being in God's beautiful creation with dear friends. This was G's (and Henry's) first visit to the snow! G really loved to sled...in nearly all the pictures his mouth is opened wide in a huge, laughing squeal...except for one run, which you can see below! Haha...his face is priceless. Can't wait to take them skiing!      

G teaching Austin how to dance

Easter, much like Christmas, was so great with a 3 year old. It was hard to know exactly how much of the Easter story to talk about this year...we mainly focused on Jesus's life and how he is alive and all around us, even today. Which is still hard for a 3 year old to really grasp. Nonetheless, we had fun decorating and hiding Easter eggs, talking about Jesus and how he is not still a baby (you see, in G's mind he was just born at Christmas!), and spending time with family.

 

Henry...As I said earlier, we have had a good few weeks running after a treacherous couple of months. He is eating so much better...getting so good at picking up little (I mean teeny!) pieces of soft food and placing them in his mouth. He almost always does this with his left hand! His favorite food right now is cheddar cheese, and most meats. He likes vegetables from soups, but has gotten pretty picky about eating them plain. Still will not have anything to do with fruits! I guess he is a savory kind of guy, like his daddy. He has one big gummy smile, with no teeth yet to be found. He is keeping down what he takes in much better too. We have certainly not eliminated the throwing up, but the amount of times and the quantity is less. I think that sometimes it is from his little tummy not being able to handle too much at once, sometimes gaggy from the tube, and sometimes I have no idea why. The good thing is that it doesn't bother him at all. We have been playing with putting him on all fours and standing him up while holding on to something and he is getting so much stronger. When he is sitting, he can wiggle himself around to face a different direction. He gained weight this past past month,which is great news! He is about 19 1/2 pounds, and most people comment on his chubby little legs, knees, or cheeks! He has used "Mama" in context several times and I'm pretty confident he knows exactly what it means. Which is so sweet and melts my heart every time. He still thinks that G is the funniest person in the world, even though most of the time that he cries is almost always due to his brother being too rough, simply out of curiosity or with his huge, way too hard kisses.

Despite how well Henry has been doing, we have gotten some not so great news. The results from the genetic cardiomyopathy panel testing came back and Henry has been diagnosed with Barth Syndrome. This is a very rare genetic mutation (less than 500 cases reported world wide) that can affect your entire system, and very often cause Cardiomyopathy. As my dad said when I told him the news, this just makes Henry even more special. The characteristics reported from the known cases are not always consistent and have varying degrees. You may read more about it here www.barthsyndrome.org. Since the research on Barth Syndrome is limited to date, it is hard to know exactly how this will affect Henry's life. To be quite honest, this news was crushing. Even though we knew that probably all cases of pediatric cardiomyopathy (with the exception of those caused directly from a virus) are genetic, getting the results of exactly what is causing his enlarged heart somehow changes this journey.  Though now we will know how to better take care of our baby, a whole new can of worms has been opened. Thankfully, Henry does not present some of the other symptoms, at least not to an extreme degree, and we are praying that this remains consistent. He continues to be stable on his medications with no changes in his heart.  We are thankful for the smile on his face and the joy in his eyes despite all that he has to go through.

Henry is the strongest baby I know, as I am sure most kids who fight through life threatening illnesses are. It is so humbling to witness, even in just a 1 year old baby, the strength, courage, resiliency, contentment, and pure joy that he exudes. Through all of this, we are consistently reminded of our dependency on the Lord and His glory that is so evident in life. Yes, Henry's unfortunate illness is terrible and unnerving and just plain wrong. But Henry is here, and he was so carefully and wonderfully made. He is showing us daily, hourly, minutely how to be joyful in the midst. John reminded me the other day as we drove down to Stanford for an appointment, that we are not in charge or in control. He said, "Do you ever just completely give it ALL to God?"As I really thought about it, I realize that I have fleeting moments of this but that they are often stolen away by all of the things that I feel like I have to take care of. But those are the moments that are so freeing, so liberating from the trenches of this life. If I could only figure out how to constantly be offering it ALL up to God, no strings attached...

The box head brothers...G used to put these boxes on his head when he was Henny's age, and somehow is still making them fit ;) Next week, Henry turns 1!!!! We have lots of family coming in over the next 3 weeks and lots of celebrating to do! Looking forward to it! 

This one is for you, Dr. Chada!