"Dad, we're going to Boston!" Maddox said excitedly as Jeff walked through the door a few weeks ago. Maddox has said, almost daily since we mentioned it, that he wants to go to Boston. And each time I tell him it won't be for a little while he responds, "Maybe tomorrow."
I will feel badly when his expectations of a fun trip to Boston don't quite
match the reality.
If only it was for fun.
Maddox will be having open heart surgery July 22nd, to be preformed by Dr. Pedro del Nido at Children's Hospital Boston. We are grateful to have Dr. del Nido as his surgeon again and know that Maddox will be in good hands. Maddox needs his homograft(cadaver valve being used for his pulmonary valve) replaced and his mitral valve worked on, hopefully just repaired as opposed to replaced at this point. Maddox had a Cath here in St. Louis in April which showed that it was indeed time to head to the OR for open heart surgery. Valves are narrowing and pressures are increasing and after a good long run of 3.5 years since needing any intervention for his heart, the time has officially come. We will fly to Boston on the 17th, have appointments on the 18th, heart Cath on the 19th, and then open heart surgery the 22nd. It will be a challenging time, especially for Maddox.
Maddox is in a good place right now health wise and we are feeling hopeful that this will mean he'll handle things well and recover from surgery in record time. We started him on a new, real-food formula a few months ago, thanks to insurance finally listening to the plea of doctors and therapists and covering it, and it has made a difference. He is now in the 7th percentile for weight and although he's still in the 1st percentile for height he is growing. Still, he is tired and the days where he needs 4-6 hour naps are becoming more and more common. When he is feeling good he is going, going, going, but his strength and endurance is certainly not that
of your average almost-4-year-old. His primary(church) teacher said that he will often lay down on the floor or lean against her during sharing time/class time and sleep. The world just goes on around him and he hardly budges. I will admit to not breathing the typical sigh of relief when you finally get your kiddo down for a nap. Instead I miss him. And I worry about what is going on in his sweet little body.
We are on our way to Utah for a little family vacation before Jeff, Maddox and I hop on a plane to Boston. We will drop off Keyan, Brynna, Tracen, and Grey with sweet and generous family members and then leave for about a month. Jeff will fly back to Utah to bring the kids back in time to start school in August. Hopefully Maddox and I will be home by then. Between Jeff, Maddox and I, we will need around 12 one-way-tickets this summer for all the bouncing
Maddox is in a good place right now health wise and we are feeling hopeful that this will mean he'll handle things well and recover from surgery in record time. We started him on a new, real-food formula a few months ago, thanks to insurance finally listening to the plea of doctors and therapists and covering it, and it has made a difference. He is now in the 7th percentile for weight and although he's still in the 1st percentile for height he is growing. Still, he is tired and the days where he needs 4-6 hour naps are becoming more and more common. When he is feeling good he is going, going, going, but his strength and endurance is certainly not that
of your average almost-4-year-old. His primary(church) teacher said that he will often lay down on the floor or lean against her during sharing time/class time and sleep. The world just goes on around him and he hardly budges. I will admit to not breathing the typical sigh of relief when you finally get your kiddo down for a nap. Instead I miss him. And I worry about what is going on in his sweet little body.
We are on our way to Utah for a little family vacation before Jeff, Maddox and I hop on a plane to Boston. We will drop off Keyan, Brynna, Tracen, and Grey with sweet and generous family members and then leave for about a month. Jeff will fly back to Utah to bring the kids back in time to start school in August. Hopefully Maddox and I will be home by then. Between Jeff, Maddox and I, we will need around 12 one-way-tickets this summer for all the bouncing
around we'll be doing.
Some of us are feeling a little anxious about everyone being separated. One of our older kids has been waking up in the middle of the night to check on Maddox and Grey in a panic. Even during the day this child will anxiously search the house for the little boys if they are not in sight. It is sweet and endearing but I know there is stress and worry about things coming up at the heart of it. I feel it too. Will Maddox have a smooth recovery? Will he be better off after the surgery? When will we all be back together again? Will Grey feel abandoned? How will he adjust? Do the kids have everything they need to start school? What if one of the kids gets sick or hurt and I'm not there?
etc...
But, I can't waste my time and energy worrying about things that haven't happened yet or about things I have no control of. We have tried to prepare and are doing the best we can given the circumstances. We are praying hard that things will work out, and they usually do.
The Lord has blessed us tremendously and all we can do is have faith that we'll make it through.
pictures from the past 6 months or so:
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