In these days of polished blogs that read things like “5 Reasons Why You Should Feel Bad About Everything You’re Doing”, this is not one of them. This is a place for us to give you more info on Scout and our goal is plain: We want you to pray for her. I am not a writer. So, I hope that you can understand what I’m trying to convey here even though these thoughts are scattered, please stay with me..
We’re back home and so happy to be here, but had a wonderful time in Baltimore visiting the Children’s House, some dear friends, and my mama.
With Scout, there is never a short answer to any question asked. If you ask, “How is Scout doing?” , the short answer would be “She’s doing really good right now”. But there are so many variables within that answer that we know to the common question asker, we should just stick with that answer. But in a deeper conversation, when somebody really wants to know, and has the time, and we can handle it, we may give a more detailed response.
It’s still Christmas in the Children’s House
Consider it Pure Joy:
2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. 6 But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. 7 That person should not expect to receive anything from the Lord. 8 Such a person is double-minded and unstable in all they do. 9 Believers in humble circumstances ought to take pride in their high position. 10 But the rich should take pride in their humiliation—since they will pass away like a wild flower. 11 For the sun rises with scorching heat and withers the plant; its blossom falls and its beauty is destroyed. In the same way, the rich will fade away even while they go about their business. 12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.13 When tempted, no one should say, “God is tempting me.” For God cannot be tempted by evil, nor does he tempt anyone; 14 but each person is tempted when they are dragged away by their own evil desire and enticed.15 Then, after desire has conceived, it gives birth to sin; and sin, when it is full-grown, gives birth to death. James 1:2-15
Medically speaking, there is no cure. Scout was born with a syndrome that one can only address each individual problem and hope to improve it and her quality of life. We are not naive. We live with this reality and are reminded of it daily and consistently. Sometimes, it can be polarizing. But with that being said, I think I speak for both of us when I say, WE CHOOSE JOY. And lately, I’ve been praying with more boldness for something that in our human terms seems impossible: A cure. Not a portion of a cure, but a complete healing. Why? Because.
I cannot even begin to tell you the blessings, kindness, love, light, and goodness our eyes have been opened to since the arrival of Scout. From family and friends, to complete strangers, we get to witness so much of the greatest side of one of God’s great creations: His People.
The new Children’s Hospital at John’s Hopkins has sparkly floors
Notes from the Baltimore trip.
Although, most of my conversations with people involve something about Scout in some way, I still don’t think a majority of people actually understand. That is because of our walking that line of trying to be honest, but not trying to sound like we are trying to get sympathy, or 1 upping a ‘my kid was so sick’ conversation. I am saying this because I’m trying to be frank with you. Scout endures much unpleasantness which in turn is unpleasant for us. But if you can’t find the small victories every day, I’m not sure, as a parent, you can survive. Well, maybe you can survive, but your house may not be a very bright one. Anyway, what I’m trying to say is, focus on the positive without ignoring the reality of it all. I’m preaching to myself.
Scout after the IV stick waiting to go into the CT scan room. With plenty of stickers that she cared zero about getting even though they kept giving her more and more.
That’s what being brave is
So, Scout had a full body CT scan on Monday. Historically, she is injected with a dye and strapped down so she won’t move while they run her through a large machine. Gabe and I had some anxiety over this as we anticipated her fear of the whole process. Lately, she has had varied degrees of the meltdown type in getting a haircut, the singing of the “Happy Birthday” song, and of all things, a trial trick-or-treating (another story for another time, but we wouldn’t even dream of taking her to a real one after that). So when it came time for the injection I was prepared to do what I had to do to restrain while comforting her. And then, an angel of the Lord walked in. I’m not sure how angels and all of that work really, but if I had to guess, I would say, Phil the I.V. man, works for the Lord. I have never seen anyone put a needle in a child with such talent. Scout was scared when he presented the needle as she balled up in my lap, but Phil reasoned with her, and talked her through the whole thing with a soft, comforting voice that somehow, got her through it. She cried as she told us all how she didn’t want the shot. I told her how brave she was. She said through her tears, “I’m not brave because I’m just so scared. I don’t want to do this”. Then Phil said “But that’s what being brave is all about, doing the things that are hard even though you may not want to”. I’m paraphrasing a little, because I couldn’t stop right then and write it down.
She was then taken to a room with a big machine that scans her body. She was scared, but they didn’t even strap her down this time. She cried as her little brave body trembled while she shut her eyes as tight as she could and tried to stay as still as she could so they could get the pictures. She was so brave. So brave.
She needs to have these scans regularly because in LDS (not the morman kind), arteries grow fast. And with that can come aneurysms anywhere in the body. Scout has been on a medicine that she takes twice daily since she was 1 month old, to try to slow that growth. Of interest right now is her carotid artery. It or they, I don’t know how to say that, but Scout’s carotid artery (arteries? I’m not going to take the time to look up the proper way to say that) are tortuous. So, this is something that we all need to keep an eye on. The scan this week showed that there was no sign of new aneurysms and that her carotid artery has not changed since her previous scan in February of 2012. Thank you God!!!
Scout being so brave through her scan. I usually don’t take pictures of my child in unpleasant moments, but I do feel the need to show not only a small amount of what she goes through, but to document her journey for her. So hopefully, one day, she can see how far she has come. She is a pioneer. There aren’t many like her. When she was born in 2009, there where only 108 diagnosed cases in the world.
One Tuesday, we met with Dr. Dietz about the results of that scan, and our other concerns. Our recent concerns with Scout are that she has difficulty eating (she’s in therapy for that), she complains of neck pain almost daily, and that she has nausea or just plain vomits for reasons we still can’t exactly figure out. We have tried to find a pattern, and I have new theories weekly, but really, we just don’t know. Dr. Dietz looked Scout over with tender care, he looked at her spine and saw that maybe there was a small curve that we need to get looked at. He even looked at her scalp. While he was looking I said “She has this cradle cap we still can’t get rid of”. He said that could be indicative of an allergy. So along with the nausea and vomiting, and then the cradle cap stuff, he recommends Scout have some formal food allergy testing. So we shall do what the wizard of Loeys-Dietz requests. We are seeing her orthopedic doctor next week, and I will be scheduling an allergy test sometime very soon.
As we said our goodbyes, I said “thank you” to Dr. Dietz as he hugged all of us individually. He said, “No. Thank YOU”. At that point, I needed to tell him that we pray for him. I don’t know how God works, and I’m not even going to try to figure that one out either, but maybe that cure that we want so desperately and that seems medically impossible will come through Dr. Dietz and his team. My job isn’t to know how it all comes to fruition, but I know I can ask for things that I think are humanly impossible. “ …I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible“.(Matthew 17:20)
Dr. Dietz checking out those sweet piggies
So when you ask us “did you have a good trip?” or “How is Scout doing?” the answer is “Good”. But the long answer today is in this blog post.
Continually we thank all of you for supporting our family and specifically Scout. Including, but not limited to some anonymous people that sent my mother up to Baltimore to watch Ash so we could fully concentrate on Scout’s needs during her appointments. Your love and the way you show it gets us through so many things. We know that God takes care of us through you in the craziest most incredible ways (I have stories). Thank you for being love, for God IS Love.
We came home to a clean house, cards, a few groceries, and soup. Love, I tell you. Love.