• Posted on February 23, 2014

Almost out of the Woods

Things are looking a little more like our normal here in our house. Scout is on the mend from all of the things that hit her the past three weeks. It’s been a challenging few weeks, but we are starting to see a healthier, happier Scout. She still has some residual things that need to clear out of her body from the pneumonia and stomach virus, but she’s looking so much better. Thank you for helping us. Thank you for praying, words of encouragement, hospital visits, food, cards, gifts, love. It takes a village and the farther we continue on our journey, the more I understand that. I have many stories of the acts of love that we received these past weeks. You know who you are, and we thank God for you. He takes care of us through you. I know it, I’ve seen it too many times to deny it.

20140222-131228.jpg

Still on the couch, but sitting up, talking, smiling, drinking OJ and eating cheese sticks.

  • Posted on February 20, 2014

Same couch, different spot

I think Scout is moving in the right direction. She didn’t throw up last night and most of today. Which also means she slept and kept her meds in.
She still doesn’t have much energy, but is talking a little more,  and just asked for food. She hasn’t eaten much in the past two weeks. So, we’ll see how that goes. On the pneumonia side of things, her breathing is MUCH better. So all in all, today was a good day.

Things start going a lot better when you all rally around her with your love and prayers. But I know for that to happen, we have to ask for help, which is still something we are still working on, believe it or not. Thank you for caring and praying and loving. We need you more than you could ever know.

20140219-183411.jpg

  • Posted on February 19, 2014

Keep it going

 

Scout got out of the hospital yesterday. She was looking and acting better than she had in days (even singing “Eye of the Tiger” to herself on the way home). And then the clock struck 9:23 in the pm. And some new awfulness struck. Scout vomited off and on through the night.
We went to the doctor this afternoon. We’re all in agreement that this is a new virus she picked up in her health care happenings this past week. We are all as a team, trying to keep her out of the hospital, but she really can’t keep anything in right now (including the meds she’s taking to get rid of the pneumonia). Please keep praying for Scout. She’s had a rough handful of days and her body is already so weak.  Pray that she has a significantly better night tonight and that this virus is over tonight.  This kid needs a break.

 

  • Posted on February 15, 2014

Love in the time of Pnuemonia

As you may know, Scout has been hospitalized for pneumonia.  On Monday, I took her to the doctor because her cough was concerning to us.  That visit ended with an ambulance ride to the Vanderbilt Children’s Hospital E.R. They actually sent us home from the ER that day because her oxygen levels looked good(ish) and her X-ray looked not too bad, but still she was being treated for pnuemonia although it wasn’t too concerning.  We had a follow-up Tuesday with Scout’s pediatrician.  At this point, we all were still hopeful she could lick this thing at home, but she would be followed closely.  Thursday, we had another follow-up at the pediatrician and at this point, another ambulance ride was in order, and Scout’s doctor said,  ”I’m not letting you leave the hospital this time”.  Scout’s body is just so tired from trying to fight the infection that she needs more help than we can give her at home.  Her spirits were very low on Thursday when she was admitted.  She isn’t talking much.  She has no will to eat or drink, and doesn’t want to get out of the bed, let alone play.  We ask of you, if you will, to pray for not only the destruction of this infection and pneumonia, but also her spirit to be renewed.  She’s showing some tiny improvement this morning,  but it is going to be a very slow process of recovery for a little body with weak connective tissue.  Thank you, friends.  We love you.

20140215-114444.jpg

Ambulance ride #1

20140215-114509.jpg

Ambulance Ride #2

20140215-114544.jpg

FaceTime with Dad and Ash from the ER

20140215-114555.jpgValentines day at Hotel Vanderbilt

  • Posted on January 10, 2014

Field Report

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.

 

The wiz

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.

 

 

 

 

 

 

 

 

 

 

  • Posted on January 07, 2014

iPads are our friend in waiting rooms

We are waiting to go back for Scout’s CT scan right now. Please pray for Scout to be brave through the process and that the results are that her body is stronger and healthier than any of us could have ever imagined. Thank You. All to the glory of God.

20140106-140931.jpg

  • Posted on January 05, 2014

Time for your checkup (McStuffins fans know what I’m talkin’ about)

20140104-210948.jpg

Friends, we are taking our brave little lion to Baltimore tomorrow to have some check-ups. Please pray for her. Pray that she is healing better than anyone could ever imagine, that she has NO fear during the procedures, and that this is all to the glory of God. We love you all. Hopefully, we’ll get to keep you updated on the trip.

Mandy, Gabe, Scout, and Ash

  • Posted on June 12, 2013

The summer of her life

We celebrated our 13th wedding anniversary yesterday. In this previous post, you can see what was happening during the past 4 of those. But really here’s what I want to tell you about before my children wake up…hold on…one just woke up.

I’m back, but I’ll try to make this quick. First let me tell you why I don’t update much these days…hold again…

Day 2 of attempting a post.

Rejoice with us. 2 years ago today this happened:

One year ago today, this happened:

Big Sister

We thank God for these awesome blessings. We thank you all for your continued prayers and support for Scout.

This is the first summer in her life that she isn’t in the hospital or recovering from a procedure or hospitalization. So we are taking that blessing and determined to give her the summer of her life (so far).

I started an Instagram account if you’d like to follow her adventures and day to day. It’s easier for me to post pics than to make a blog post these days.

Here’s the link:
Instagram

 

It’s private, so you’ll have  to ask to follow her and then I’ll add you.

 

Now excuse us while we celebrate life, love, and a little boy’s first birthday.

 

 

  • Posted on February 25, 2013

Camp

As I say often, we try to take advantage of the good days as much as possible.  While I’m putting this post together, Scout is sitting by me on the couch, with a fever, watching ‘Wonder Pets’.  She won’t admit she doesn’t feel good,  but a high fever is kind of a good indicator that she’s not up to par.  She’s fine,  I’m just telling you that to say that days like last weekend’s are cherished even more so.

Let me tell you about one of the most magical places on earth. It’s called The Center for Courageous Kids. It’s a camp facility that was created specifically for critically ill and chronically ill kids so they can get a break from their medical schedule to just get to be a kid for a while. It’s free to all families that attend, and really, no words can describe how wonderful this place is.

Gabe first heard about CCK a year and a half ago when he was asked to make a video for the facility. He came home that night and told me that we HAD to bring Scout there. And so we did. And it was good. I think the best way to give you an idea of this place is to just show you the video.

Serendipitously, the orthopedic nurse interviewed in the video casted Scout’s legs every week for the first six months of her life (This is from the first casting). She just happened to be volunteering at camp the weekend the video was shot.

This was our second year to bring her, and I’m tellin’ you, it’s hard not to get a lump in your throat when you look around at these kids having themselves a big ol’ time. I really have trouble describing how awesome it is. All I know is that Scout isn’t in therapy, and she’s not at a doctor or a hospital. She’s just a little girl having fun.  I submit to you this evidence:

 

Horses

Observant Bro

Bowling Champ

Sleeping bro

Billiards

Foosball…almost

Artist

Lunchroom/’Captain America Pops

Dance Party

(she had three counselors surrounding her so she could dance and not get knocked over by anyone. These terribly lit pictures are the ones that get to me the most.)

Just a happy little girl

Lastly, this video was shot the night Scout came back from camp while we were staying over at her Grandparents’ house for the night.  The structure of programming at camp apparently made an impact on her.

 

 

 

 

 

 

 

  • Posted on January 02, 2013

Happy 2013

Behind the Scenes

McCauley New Years 2013 from lilDRAGON on Vimeo.

  • Posted on December 03, 2012

Teeth

 

So, lets talk about teeth for a sec. One of the procedures done during Scout’s surgery in September was a tooth extraction. The dentist wouldn’t know exactly what she was dealing with until she was able to really get inside of Scout’s mouth and get x-rays and all of that good stuff. So Gabe and I were definitely expecting some teeth to be pulled. Scout complained daily about her teeth hurting.

I got a call during Scout’s surgery from the phone in the waiting room from her dentist. She said something like, “It looks like I can only save two teeth. Do you want to keep them, or do you want me to pull those too?” I was all like, “(calmly)…all but two.” For some reason this was still kind of a shock to me that THAT many teeth were bad. Of course when that call came, Gabe had left the area to do something at the time, maybe a potty break, helping with Ash, make a phone call or something, I don’t remember, all I know is that I had to make a decision quickly and without him. And so I had another question for the doctor- Well, it was more like an answer question, “…Keep theemmm? I don’t know, what do you think?” Doctor Alex answered quickly, “I think it would be better to keep them, but I want you to think or be prepared about how she will look.” I could answer more concisely knowing it was a cosmetic thing “Keep them”.

So when Gabe returned to the room I took him aside to tell him. Like most things that happen with Scout, it all needs to soak in for a minute before we react and we bring ourselves back to the proper perspective. Our friend Scott had very recently just lost his leg in a construction accident, and another dear friend had a sudden heart-attack at the age of 34 leaving a wife (also dear to us) and two little girls, there was an 8 month old little boy named Andrew, in that very hospital who hadn’t seen the outside world because he was waiting and then recovering from a heart transplant, and our friend Erin and her kids are facing a new life they had never expected. Once we thought about that, it was so easy to say. “It’s just teeth.”

After Dr. Alex was done with her part of the procedure, she had a conference with us to tell us how it all went. Of course Gabe, being Gabe second guessed the decision of keeping the two teeth. Dr. Alex said teeth is bone and she would like to keep that bone there if it’s salvageable. I wondered how Scout would eat, and if there were dentures or something she could wear. Dr. Alex said that there would have to be something to root the dentures to, so no, she will just manage with these two teeth until her adult teeth come in. We talked about some more things, and then she gave us a small manilla envelope that contained the extracted teeth.

Fast forward a few days later. Scout had been released from the hospital. Gabe had looked, but I finally had the emotional strength to look at the teeth in said envelope. He showed me one by one. It.Was.Remarkable. The pain that she must have been in. I cried thinking of how she went through so much pain and how well she handled it. I don’t know how she functioned. Think about when you have a bad cavity and how much it hurts. Now think about just about every tooth in your mouth being absolutely rotton. Some of those teeth decayed all the way down to the root.

Let me tell you. She doesn’t eat candy or chocolate (she likes the idea of them, but won’t really eat them), we brush her teeth (but she would cry when we did because of the pain), and she’s not doing meth.

How does this happen? You may ask. Well I’m not sure, but our guess is that her body just doesn’t make the tooth enamel it needs to protect her teeth. Plus, maybe the daily meds she’s on contribute to that as well. What about her adult teeth? Well, we’ll just have to find out. Of course there is nothing else I know what to do except pray that they are stronger when/if they come in and of course the normal dental hygiene stuff).

It didn’t take long for us to get used to her new smile. It makes me teary-smile back at her most of the time. In my opinion, it’s pretty adorable. We had to figure out how we were going to explain to her why she didn’t have any teeth anymore. She was pretty cool with, “Remember how much your teeth hurt? Do they  feel better now? ” I’m not too big on making a big thing about Santa, and the tooth-fairy and whatnot, but that tooth-fairy came to our rescue in this instance. Scout had been watching the Yo-Gabba-Gabba episode about the tooth fairy ALOT before the procedure (on her own mind you). Her understanding on what happens is that the tooth-fairy comes, takes your tooth, she gives you two gold coins, and a kangaroo.

So, the tooth-fairy came. Her cousin, on his own accord, wrote the above letter explaining Scout’s situation to the fairy of teeth. She’s only visited once so far. We don’t want to overwhelm Scout like, ‘here is a mouthful of your teeth, and here’s a million dollars’. Plus she’s three. The only way she would expect lots of money and presents is if we made her think that she should expect lots of money and presents. Don’t get me wrong, Scout deserves the best. And we try to give her the best, but in other ways.

Since her surgery, her speech has improved. I can tell she has more confidence in herself in many ways. And she’s sillier and plays much, much more. My theory is that she was in so much pain before, that she didn’t know what feeling good actually felt like.

Thank you all for your continued support and prayers for our girl and our family. We have a big surprise in the coming weeks for Scout and once we let her know about it, then we’ll keep you up to date on that adventure. So mums the word with Scout if you know, K?
Peace, love and light to you all. We are grateful for you. And we are prayerfully thankful for the ways that you all are in our lives and the ways you help Scout.

 

20121203-144829.jpg

  • Posted on October 09, 2012

Bubbles and Rasberries

Scout is healing up pretty well here at home. I think I’ll have to do a separate post sometime about Scout’s teeth, but I wanted to share some nice moments and let you know she is doing well.  There is so much hurt and negativity that this world has to offer, that in order for us to not be sucked into that vortex, we try to focus on the small victories and blessings of the day.  There is a lot of good happening too, we just don’t hear about it as much because it doesn’t get ratings or sell papers.  I offer you some light for the day, and a video of one kid’s discovery of a simple pleasure that this life has to offer.

20121009-171931.jpg

Her eyes are healing up and looking much straighter.  No more daily eyepatch wearing for now.

 

20121009-171954.jpg

Scout has been talking non-stop about visiting the Animal Kingdom.  Here she is pretending her bed is the bus that takes you there. She insisted her brother join her and that we all wear hats.  She has even made up a song with the lyrics “I was born in the Animal Kingdom, I was born in the lions den, I was born in the circle of life

 

20121010-085544.jpg

Camping in the backyard

 

Since her cleft palate repair, Scout has discovered two very important things in childhood -blowing rasberries and bubbles

 

And finally, This

 

 

  • Posted on September 26, 2012

recovering at home

Getting home from the hospital is just one of the steps in the healing process. We are just so glad that Scout did well enough to come home so soon (in Scout terms). She’s having very grumpy/moody times but we are also seeing that smile too. She needs a lot of extra hugs and snuggles right now. Gabe’s mom and my sister have been here all week to help with Ash, Scout’s bro. I cannot even fathom how we could function right now without their help. Gabe had to go back to work immediately, so I would have been left to try to handle a little girl in a lot of pain, and a 3 month old all by my lonesome. So we are very grateful for their presence. Scout still has a ways to go with her body healing, and then she has some new challenges ahead of her. She will have to re-learn how to speak and eat. She has two teeth and that hole in her mouth is hopefully closed up for good.

 

Scout and Aun-T. Not sure why there are 900,000 electronics out all at once,  but whatever keeps her content right now is fine with me.

  • Posted on September 24, 2012

We

Are

Outta Here

 

(and enjoying some uninterrupted sleep)

 

 

  • Posted on September 23, 2012

Today was a good day

Last night we finally got Scout to open her eyes. I think she was afraid to, but once she opened them, she found out it wasn’t so bad after all. We took her for a walk and tried to get her to look around. There are some nice spots at the children’s hospital here that are calming for the patients. They have a roof playground, and a koi pond and garden on the ground floor.

Today she woke up still pretty swollen, but we took another walk outside. It really helps to try to do “normal” stuff for the healing process to really go into overdrive. Also, we switched her pain meds from the hard stuff to just motrin. Once we did that, we really started to see Scout coming back.

Thank you all for your continued prayers. She has definitely made some excellent progress today. Many prayers of thanks for what we have seen.

We are now hoping that Scout has the will to at least start drinking again. She is still on IV fluids because she won’t really drink enough yet to keep her body hydrated. But look how far she’s come since only Friday. That’s pretty amazing. Medical Science and God are awesome. I’m a little too tired to write too much tonight so I’ll just leave you with these pics to show you what a difference a day can make.

 

Yesterday Evening

 

20120923-222023.jpg

This morning

 

20120923-222037.jpgThis Afternoon