Just wanted to let you know, we think Scout is feeling 99,000 times better than she was last week. Thank You all for you prayers. Here she is painting today with that invisible magical paint that crayola makes.

Scout is still trying to recover from whatever this gruesome little bug is that we all caught. Gabe needed to travel for work on Sunday night (bad timing), but we were both still worried about Scout. So I asked him if he could at least try to leave on Monday morning to see how Scout faired through Sunday night (no emergencies or anything). So he did, nothing bad happened. On, Monday night, Scout started to complain that her chest hurt while grabbing it. Of course, my mind skipped any thought of rational explanation to – heart attack. But I remained calm, and waited, and she seemed to be fine-ish and breathing well. So, we made it through the night. Tuesday, she started doing the same thing. I called her pediatrician and the cardiology clinic so they could put my imaginative mind at ease, which they did, but suggested I bring her in to the pediatrician just to take a look-see on Wednesday.

On our visit, her pediatrician discovered an ear infection (a first for Scout) and…wait for it… pneumonia. What?! This whole time I thought we would leave the office with the knowledge that I just have a vivid imagination. Well, I might, but the good news is, it’s not cardiac arrest or anything, just pneumonia (cue trombone wah-wahs). But really there is some good in this. We were sent home, and as Gabe arrived back from his trip, I sent him out to the pharmacy for the prescribed antibiotics and some ice-cream (I am pregs). But really there are some positives. We are at HOME. Not in a hospital room where they would insist on all the wires, hourly vitals, and the uncomfortableness of it all. We are trying to treat this at home where she can hopefully be comfortable and happy in her own bed (or ours, she usually chooses ours). P.S., we think her chest just hurts from coughing a lot. It HAS been cut open and sewn back together you know.

Bored and tired – Another pic from last Thursday’s ER visit.

Last Thursday when we took her to the ER, the x-ray of her lungs was clear, and her ears were fine. Things can change in a week. It’s just another lesson for us that we really DO need to be more careful where Scout is concerned, which is always a line I walk very carefully. Her body just can’t handle these bugs like we can. And physically…well, that’s another post. So, if you think we are paranoid parents, we probably are, but we have reasons. Don’t get offended if I sanitize stuff around you. It’s becoming way more apparent to me that it may be more necessary than I want it to be. But I DO want her to be able to get dirty and all that good kid stuff too. We’ll just call it as we see it I guess.

We would love it if you would say some prayers for the destruction of this pneumonia. As much as I try to avoid antibiotics, I am grateful for them when they are actually needed. Thank you all for your continued support of our girl. We really do appreciate you.

There is much to tell you about Scout’s activities, but we wanted to just give you a quick update.

Scout will not be having surgery tomorrow, for reasons we will explain for a longer blog post later.

She did have an ER trip on Thursday night because of a high fever and labored breathing, but we are home now and watching her closely.

We are all battling the same funk in the house, but Scout’s lil’ body can’t handle it as well as most. I think the scary part is over for her, but we wouldn’t mind a prayer or two for her to get better fast.

We’ll give you a big fat update soon. I promise.

Welp, we were doing good with holding off on surgeries, but all good things must come to an end (so I’ve heard). Something we hadn’t done was take Scout to the dentist. We are good about brushing her teeth and I thought I was keeping an eye on things, but one night I noticed a brown molar. All kinds of things went through my head about how in the world this could even happen, I am even wondering if it grew in rotton or something. I don’t know, I’m not a dentist. But really, after all of the mom guilt and worrying about what I did to let this happen, what I think we have to give it up to is Loeys-Dietz,  that rascal of a mutation.

So I called a dentist that Scout’s ENT recommended for cleft-palate patients. (remember,  no-one really specializes in pediatric Loeys-Dietz dental problems.  As a human race, we are all learning together about this one).  The dentist took a look and said that Scout was going to need to have oral surgery and not the kind you do in the office.  She wants to do it at Vanderbilt because from first look,  she’s probably going to need to pull some teeth and cap the ones she thinks she can save.  She won’t really know exactly what needs to be done until she gets in there.  She drew up a worst case scenario plan that looked pretty extensive and sent us on our way.   So we have a date in early March for Scout’s next surgery.

My main concern is not getting teeth pulled, it’s Scout and anesthesia. Something she has had some serious problems with before.  We ask for your prayers that this surgery is successful and that Scout’s body has zero complications undergoing yet another surgery and anesthetic.  As time gets closer, we will try to remember to remind you for our specific prayer requests.  Thank you all for being so great and supportive.

In other news

Scout getting fitted for hearing aids.  This is the least horrified picture we have of this process. As you may be able to see,  I am gently restraining her from pulling the purple stuff out of her ears.

Scout got fitted for her hearing aids last week.  Now we are just waiting for them to come in.  This isn’t something you like, obsessively track in the mail after you order something from Amazon. This is the kind of thing that I’m kind of dreading the call when they arrive.  But I know it’s for her own good. Then I start thinking about stuff like how there are some people  of the older persuasion that I know and love, that obviously need hearing aids that will not get them (and I wish they would).  And then I start to think about parents out there that only wish that hearing aids could help their children hear.  Speaking of that, I know you’ve seen this, but have you ever seen this?  I know right?! So, that’s my attitude adjustment on the subject.

We are going to take a trip to Baltimore next month for a follow-up appointment with Dr. Dietz and hopefully check on a couple of other things, so we’ll keep you updated on all of our happenings in the next couple of months.  Scout’s dance card is pretty full right now, and it probably always will be,  but that’s ok.  Last year at this time is when we were told Scout needed an aortic-root replacement.  Now,  we’re just going for a friendly check-up and actually looking forward to it.  God is so, so very good.  Medicine is advancing daily with hope for people like Scout and so many others.  We are so thankful for that.

Remember when I said it’s been some kind of year?  Well, there’s this to add to the mix too.

For Gabe’s peace of mind,  please watch it in HD and let it load before you play the video.

First day of School

School

You just can’t take a kid like Scout to the child-care at the Y and not have visions of other kids pulling her arm out of her socket or accidentally bumping into her resulting in some kind of ER visit, or even just plain old getting whatever bug is surfacing at any given time. Everything is on a higher level of alert with Scout. After much discussion, and going back-and-forth on the matter, we decided to enroll Scout in a school for a few hours for 2 days a week. I wouldn’t have probably even thought of sending her anywhere unless it was this school. It is part of the county’s early intervention program, which means that this cuts back on all of the appointments that we have with various, teachers, coordinators, and therapists that Scout meets with on a regular basis. They all meet with her at school. This makes things a little more convenient for me. Scout still has PT at home every week, but, her speech therapist meets at school, which saves us a weekly visit to Vanderbilt (at least for speech).

Scout is adjusting slowly to the new life, but she’s not too crazy about leaving me pretty much, ever….so we’re working on that. It’s been an emotional transition for all of us. When I had the meeting with the school, I had to say, “please understand that it’s hard for us to fathom that Scout can even go to school, when only a few months ago, we were praying for God to let her live”. Wow, what a year, huh?

Hearing Aids

Cheesin’ at Dr. Goudy’s office

We had a visit with Scout’s ENT a couple of months ago, he wanted to have her hearing checked because when she had her cleft palate surgery, tubes were put into her ears. Normally, when those tubes fall out, the holes they cut to insert those tubes, heal. Those holes are not healing in Scout’s ears. So we’ve had multiple tests done. It seems as though Scout has some hearing loss. She isn’t hearing some sounds that are pretty essential to learning how to speak correctly. When the hearing specialist started explaining this and pulled out the hearing aids, she said, “I know this is a big decision”, I thought, “THIS is not a big decision, it’s just something we have to do.” Another thing to add to Scout’s “things” she has to do everyday won’t be fun, but it’s essential. We patch her eye everyday so she won’t loose her vision, we put braces on her feet so she can walk, we give her miralax everyday so she won’t have rectal prolapses, we give her medicine everyday (twice a day) so she hopefully won’t develop aneurisms and other horrible things, and yes, I will definitely try to get her to wear hearing aids, so that she can hear the sounds that will help her be able to form words and sounds correctly.

There is the thought that Scout could go through a surgery to have the holes in her ears patched, but her ENT has no intention of putting her through another surgery right now. We’re cool with that.

Hearing test-She looks calm here, but ripped everything out of her ears 2 seconds after this pic was taken

Just in case you ever wondered what ear tubes looked like (with a whole bunch of earwax around them)

We get to stay home for Christmas this year. It’s a nice break for us to be able to stay home and not put Scout through another long trip. It’s been some kind of year. I don’t want to get too reflective, because frankly, I don’t want to, but what I guess I do want to say is that we are grateful. We know how blessed we are. We’ve got our girl and we’ve got each other. We have all felt so loved and supported by so many of you. We are so glad to see that side of the human race that isn’t shown too often in the media. That’s exactly the kind of thing we needed this year – Love. We know that God has taken care of us through all of you who have taken care of us in one way or another. We may never be able to repay, but what we can try to do is show that love to others all around us. Please know that your kindess is so appreciated. Know that your love has and continues to fuel us through some pretty tough stuff. Remember that your love is so much more powerful than you think it is. As George Carlin says in Bill and Ted’s Excellent Adventure, “Be excellent to each other“.

Just a random pic of Scout, totally psyched, to pet an owl

When Scout was first diagnosed with Loeys-Dietz Syndrome at around 1 month old, we had already had a tumultuous beginning. It’s too much to write about right now, but the unofficial diagnosis came while she was recovering from her first heart surgery (PDA Ligation) and congestive heart failure which was a result of her PDA not closing. She had feeding issues because of her cleft palate, we were getting her casted every week because of her club feet, and in the mean time, trying to learn how to be parents. Scout’s Geneticist and Cardiologist had sent us the little information they had on Loeys-Dietz Syndrome, and we googled the rest. I tried a few times to read up on what I could, but ultimately, I just couldn’t get too far into reading anything about Loeys-Dietz Syndrome without having to walk away. What I knew was that it effects everyone differently, and what I could hope was that all of those things wouldn’t happen to Scout. But the reality was, she already had club feet, a cleft palate, a PDA, ASD, extropia, and her aorta was growing faster than it should be. I just didn’t want to look and see what other things we would have to be facing. I still don’t. Somewhere in those first few months, I decided we would just get through today, and not worry about what may or may not be coming. Let’s be honest, if I found this blog and my child was just diagnosed with LDS, I probably wouldn’t be able to read it. Maybe it’s just us (Me and Gabe), but when you are in those intense situations, you can’t afford yourself to stop and think about what’s really happening. You just plow through it and pray for the strength to get through that day. It must be some kind of emotional survival mechanism. We also live by the Keep Calm, and Carry on mantra.

This month was full of appointments and questions I had for the various doctors and specialists. But let me start by saying that Scout is doing great. There are things that need to be addressed at some point, but we all agree that we need to give this kid a break. Let’s not do anything that absolutely doesn’t need to be done at this time.

Waiting for the dilation drops to take effect at the eye doctor

We saw Scout’s ophthalmologist early this October. I’m sure you’ve noticed in pictures of Scout that she has some wandering eye issues. This is a result of weak eye muscles. She could have a surgery to tighten those muscles. We also know that it would probably take more than one surgery for this to work. She’s young enough right now that it doesn’t bother her cosmetically, and we are patching her eye every day to give that eye excersize. So, it was an easy decision to say that we can wait. But let me also throw this into the pot while we are talking about it. This is only an issue at this point, because this is what people focus on, because this is what is the most obvious. When we are in public, I can see kids(not all kids) looking at her and comment about her eyes. Right now, it doesn’t bother Scout, but some day it may. I don’t know exactly how to deal with it, but what I think one of the best things to do is to not ignore it. Warning, I’m about to get preachy. First off,  I know that you can’t control what comes out of children’s mouths, but  if your kid asks you about someone who has something different about them, don’t just dismiss their question (and maybe don’t answer the question in front of the person it’s about). Leaving a mystery about it makes it worse. Don’t tell your child they are too young to understand. Explain it in a way they can understand, whether it be, someone who looks different, or someone who wears braces, uses a wheelchair, or whatever. This is so basic, but seriously, it happens more times than I can count. You will make the world better if you give your kids the gift of compassion, answers, and understanding. If they have a question, answer it, and hopefully, the next time they see someone that is different from them, they won’t get in their face and point it out, maybe they can learn to ask in a more discrete manner and to trust that you will answer their question. But I think we all can understand that kids are kids and sometimes, no matter how many times you tell them something, they will still do the opposite. Okay, I’m done. But for real, just talk to your kids. PS, I’m open to suggestions on how to help the situations of this nature but please, well thought out ones that come from experience.

Post dilation

Scout also had a visit with her ENT. Scout had a surgery to repair her cleft palate in September of 2010. Her palate didn’t heal completely so she still has a hole in her mouth. What that does is make food come out of her nose when she eats or drinks, and when she makes certain sounds when she talks, that wind goes up that hole and through her nose instead of wherever it is supposed to go. Once again, she could have a surgery to try and repair the remaining space in her palate, but we all agree, to give Scout a break. Another issue has come up because of that surgery. She also had tubes put into her ears during the procedure, which is normal. The tubes are now starting to fall out, which is normal. But what has happened is that there are now holes in her ear where those tubes were. The holes are not closing up, which is not normal. So now what we may be dealing with is possible hearing loss. We have an appointment to get her hearing checked in November. I’m not too worried about it. We take it one day at a time around here.

Ear, nose, and throat

We saw Scout’s Cardiologist as well, I’ll keep it short and just give you this link.

In the Orthopedic waiting room

One of the big appointments we have been waiting for is Scout’s Orthopedic surgeon. I had a list of things I needed to talk to him about. We of course, wanted to get x-rays of her neck, but on top of that, I am still concerned about her sternum because of her history of not healing quickly. Her feet have started to turn in a different place, not in a club feet way, but more of a windmill effect (I don’t have a link for this, it’s just what some doctors have called it), she’s been hunching over when she’s acting silly, but it is very similar to what I’ve seen of kids with scoliosis do, and finally her clavicle has started to protrude. So all in all here’s the summation. She is getting new orthodics to see if it will help her feet, Her sterum/clavicle may have just healed like that, her neck x-rays looked fine, and nobody is concerned about her back at this point, but we will keep an eye on it. Dr. Mencio said there were procedures they could do to fix her feet, but he thought we should “Give this kid a break”. We agreed. The last thing Gabe thought to ask was if Scout still had to wear her braces at night. Although I know those things have done good for her, I have a hate/hate relationship with them. Dr. Mencio said, “Let me see Scout walk down the hall”. She ran. He said. “Nah, she doesn’t need to wear them anymore”. What?! Did my ears just deceive me?! He said that if her feet start turning in again, we can just start putting them on at night, but she looks good right now. There is rejoicing over this news. Small victories are sometimes so huge.

Her first ‘no tears’ x-rays.  She was a trooper.

making the best of waiting in the exam room

There are even other surgeries she could have, like repairing her umbilical hernia, or fixing her pectus, but those are also at this point, cosmetic.  We won’t do anything to her that she doesn’t have to go through right now.  Give this little body a break.

Let me again stress that she is doing awesome. I keep my eye on her closely, but she’s getting stronger every day. I think that just about every day, she does something to make us tear up. We don’t know why she has this gene mutation, but what we can do is make good on it. We stop so often and say “thank you” for these good days. I know I say this a lot, but every day is a gift and an opportunity to learn and to be. Scout is a master teacher on this subject and we are grateful for that.

We try to sprinkle in as much fun as we can.  Here are some more pictures and a video from Scout’s month.

After we went to the ophthalmologist, I took her to an indoor playground store.  I think you can see by her face that she was ok with that.

This is at a speech evaluation.   Her services had to be cancelled when we went to Baltimore. She will be re-starting this month.

At the petting zoo in the Nashville zoo.

Physical Therapy at home

Two little people acting like big people

Pumpkin carving

A clown and a ‘Robot that sings’. Another proud moment for me that she came up with that herself, just kind of tricky to create a costume.

We’ve been busy with many things.   Scout has had a lot of doctors and therapy appointments and we are still waiting to see her orthopedic surgeon, so we will have an update on everything soon. We took some video of Scout’s visit to the Cardiology clinic yesterday.  She did great.  Not many tears during the echo, no crying during the vitals, and while we were talking to Dr. Markham, she disappeared with Nurse Erica.  We found her surfing the web and on the phone in the office keeping the staff company. We sure are blessed to have this team.  They are so good to Scout.  We’ll have a bigger update soon,  but in the mean time,  enjoy this little snippet of Scout’s day.  And by the way, it was a good visit, things look fine around that new aorta.  Thank God.

If you’ve been following Scout’s story, then you may remember us mentioning sweet little Audrey, a number of times.  Maybe you have even been Praying for Audrey.  Early this morning at around 1am, her mother wrote this:

“Heaven became sweeter this morning as Audrey safely arrived in the arms of Jesus. We will see her again someday; there is no more sickness or pain for her now. Thank you for your prayers for us.”

Please keep Audrey’s parents, Mark and Stephanie in your prayers as they continue on without their baby girl.  The last 9 months of their lives and Audrey’s was spent in the tears, frustrations and confusion of living in the intense world of the Hopkins Pediatric ICU.  They haven’t lived in their own house for 9 months as they have fought and pleaded for their baby girl while practically living in the hospital.  They were nothing but faithful, humble, and kind through their trials and I am confident they will continue to be. Pray for their comfort and a peace that passes all understanding as they try to process everything they, and their baby had to go through.  Stephanie sometimes reads this blog, if you leave them a note of support, I know they would appreciate it. If you don’t know what to say, but want to let them know you are thinking of them, just let them know that.  Sometimes there is just comfort in knowing that you are remembered by others.

Thank you all for the love you give.

At some point when Scout was still in Hotel Johns Hopkins, our friends asked us if Scout would be a flower girl in their wedding which would take place at the end of August. First of all, we were honored, and second, the thought that she could even perform such a task at the time was very emotional. It would be a big step. At the time, she could hardly even move, let alone, support herself on her own two feet.

The end of August came. The wedding was to be on a Monday. The Friday before, Scout started running a low-grade fever. Of course, when that happens, every horrible thing goes through my head of what it could be. Especially because recently we had two friends that had to go back to the hospital for incision site infections. I decided to keep a close watch on her and her temperature the rest of the weekend, and if the fever didn’t go away, I would call her Pediatrician on Monday morning to see if he could slip her in just to check.

There are many things I try to be cautious about with Scout’s health. But I really didn’t want her to miss being a flower girl. Not because throwing flowers in a wedding is a big deal, but because it represented so much more about what God can do in His time. Our friends that were getting hitched had known each other for 25 years, but didn’t “find” each other until a serendipitous snow storm in Tennessee that kept them snowed in one night (there is so much more to that story, but I’m trying to keep this post as brief as possible). And, well, you already know why it was a big deal for Scout.

So Monday rolled around, we did indeed go to see Scout’s Pediatrician. We hadn’t seen him since we had been back from Baltimore. We chose him before Scout was even born because he looks at alternative methods before reaching for the usual drugs. His specialty and heart is for autism. Not that Scout’s autistic, I just like doctors that can work in both worlds of mainstream and not-so mainstream. He’s another doctor we have on Scout’s team that has been such a blessing (again, I could go on, but I won’t).

Doctor Visit

I told Scout’s doctor my concerns and he said he actually wasn’t too concerned yet, because if it was an infection within her surgical site, the fever and symptoms would act differently. He said I should keep and eye on the fever and if it hadn’t gone away in a week, we could do some tests. I said, “Cool. But there’s one more thing, we want to take her on a vacation to Florida tomorrow. Do you think I should do that?” He said, “I’m a big proponent of taking your moments when you get them. Go. If she gets worse while your gone, you can find the closest clinic and we’ll go from there.” I absolutely needed him to tell me that. I had already been google mapping the closest Children’s Hospital and clinics from where we were going to stay. Plus here’s the other thing, yes, it could have been something serious or…it could have been her two-year molars. Guess what, we now think it’s the latter.

Wedding

That afternoon, we drove to Smithville, TN to a quaint little spot where the wedding took place. Scout was still running a tiny fever, but was acting fine, so we stayed on course. Scout and her best bud Schmoop got to throw flowers down the aisle the way you may expect two year olds to do (Scout only made it 1/4 down the aisle until I picked her up and walked her the rest of the way, while Schmoop took all the time in the world and even recycled some pedals to prolong her performance). The two little ladies even made it through all of the reception festivities without complaining. We made it!

Schmoop holding Scout’s heart at the rehearsal

Zeb, Scout and Schmoop. Zeb is so patient with the girls.

The Bride, The Groom, The Frog reading a book

Vacation

We had been thinking we needed to take a respite but had a hard time committing ourselves to a time to get away. Scout is healthy and strong enough now that we feel like she could do it. But, There’s always something that can get in the way of taking time to get away (am I right, or am I right?) Our friends from Atlanta called us and told us they had a condo in Palm Coast, Florida and would let us stay there if we wanted to at the end of August. We thought that would be awesome, but we still don’t want to put Scout’s neck through a long car ride, and what if the plane tickets were too expensive? So I looked up the tickets on Southwest…$59 to Jacksonville. It was settled. We could totally go on vacation! So we took our friends very generous offer and flew out on Tuesday to a quiet little beach town on the Atlantic Ocean.

It was awesome. We just got to chill and enjoy the perfect weather, the quietness of Palm Coast, and enjoy each other and our little girl enjoying the sun, saltwater pools, and the beach. Yes, we had a night of ‘should we go to a walk-in clinic?’, but it was clear to me what was going on the next day when she started chewing on her fingers in the back of her mouth. Ahhh, the sign I had been looking for…It IS the two-year molars! Phew! We took a couple of days to visit some family in Tampa, and some friends in Orlando too. It was exactly what we needed at a time when we needed it. I can only hope that we will be in the position one day to give back like so many of you who have so generously given to us. We are blessed.

Lot’s O’ Pics

On our way to Palm Coast

Singing to herself on the beach

Celebrating September 9th via Google Hangout

Florida Hat

We stopped in St. Augustine on the way to the airport and visited the oldest existing city in America at the awesomest fort in America.

We flew home on 9/11/11. Because of the riff-raff making various threats around the country, it was a delayed flight that had to make an un-scheduled stop to drop some people off in Birmingham, but we made it home safe. I think the air marshall was handing out peanuts, of course I don’t know this for sure, because he was in street clothes.

Sometimes I feel like a missionary giving a weekly report,  like we need to keep everyone updated on all of the happenings in our foreign country.  And so,  here is another report.  But you know what is so absolutely awesome?  This is just a report.  It’s not an urgent plea for prayers.  Scout is getting better every day. She still keeps us on our toes,  but we look at her and are constantly amazed at how well she is doing.  So many little things that happen so many times a day, make  the words “Thank You, God” come out of my mouth so very often.  Every day is a gift.  All I can try to do is to walk in love.  The kind of love that we have seen from so many of you, and the kind of love that God has given us.

I catch myself sometimes and wonder if I am complaining, sharing a feeling, or just telling it how it is.  For example: Scout needs to wear braces on her feet at night.  Sometimes (lately more often than not), I don’t just call them braces or shoes,  I call them a foot prison.  But really, take a look at those mothers and tell me those things don’t look dangerous.  We have all been injured in one way or another by this contraption.  And tell me you could sleep with those things on. At night, when I ‘click’ the bar into the shoes,  in my mind I hear tons of reverb accompanying those two ‘clicks’, much like a prison cell door closing in a movie.  But until someone comes up with a better way to keep kids’ feet straight that have overcome bi-lateral club foot,  this is what we must do.  And then,  I have to remind myself,  as frustrating as it is, and as much as I want to cuss that contraption,  it’s helping her (hopefully). This is probably the key for her to hopefully become a dancin’ machine.

So, Gabe or I might start getting perturbed about something and then we stop and just say, “She’s alive” not in a Frankenstein way, but you know what I mean.  There are a lot of things I wish Scout didn’t have to got through and have to do on a daily basis.  But I’m hoping that we can face these things with courage, faith, and strength and become better people because of it all.  Sometimes I see a parent speak to their kids harshly in public or complain about something rather trivial, and think to myself, rather self-righteously, ‘you have NO idea‘ .  But, what if we weren’t given the gift of Scout and her challenges?   I am very capable of taking things for granted or saying something sarcastic for a laugh at the expense of others.  Scout is a daily physical reminder of why I need to walk in love, why my words and actions should be love. I’ve still got a lot to work on,  but I am thankful that I have a chance to.

I guess I’ve veered off the path of my report.  Please forgive.  Here it is.

Scout got her new orthotics that she is now wearing during the day in addition to her ‘foot prison’ that she wears at night.  She got to pick out the pattern that appears on them. Jungle theme. Monkeys and Lions.  I don’t have a great photo of them, but here is what I do have.

At the orthopedic shoe place, Scout had a tea party with Minnie Mouse, The news4 snowbird and Sheriff Woody

Scout is eligible to start going to a school instead of having teachers, and therapists come to the house.  It’s 2 days a week for about 4 hours each day.  I am now trying to decide if she is physically ready to do this.  Since her birth,  she hasn’t been far from me for any amount of time.  There are only a handful of people that understand how to care for Scout in our circles.  So, taking her to the Y for an hour while I could work out has always been a debate.  Kids get kids sick.  Kids knock kids over. You need to support Scout’s neck if you pick her up.  You need to pick her up by her bum and not under her arms until her sternum heals. You know, just the little things, that have always added up to a “no” for me when it comes to leaving her with just anybody. But this is probably the only school that she could go to that understands that.  I have complete confidence she would thrive in a classroom setting.  It’s really just the physical stuff that I have reservations about. And let’s be honest,  maybe it’s more of a question of if I’m ready.

I’ll leave you with these photos from this morning.  Scout got to go play at a little water park with some of her friends this morning.  She was pretty scared of the water and overwhelmed with all of the screaming kids,  but despite that, I think she still had fun.  I get overwhelmed when I sit back and watch her smile, or playing, or just doing normal kid stuff.  I think about where she was just a couple of months ago. So many moments to be thankful for.

Summer Lady Water Fun

The Schmoop, Scout’s bosom friend

Buddy Heads

Scout’s big comfort is hair.  Schmoop is finally getting to a point where she will tolerate it.

P.S. Katherine is out of ICU and so far, the recovery is going well.  Katherine, in a few months, you will get to hang with your pals too, except  with nice fall sweaters and without the water.

Our friend Katherine (who we’ve mentioned before) is getting a new aorta tomorrow if all goes according to plan. As we have seen, plans can change, but, that’s what’s on her and Dr. Cameron’s agenda tomorrow.  Katherine is a witty, talented, all around awesome 23 year old.  She visited Scout while she was in the Hopkins PICU. She wrote this to some of her friends and family, and I asked if I could use it as a guest blog. She said yes.  She would really love it if you said some prayers for her, Dr. Cameron, and everyone involved in caring for her, as well as her parents.

Pre-Op-Testing-Time-Day (this is long, but you will like it)

Scout wears an eyepatch every morning for an hour to remind her brain and muscles that she has two of them (eyes). Today, she wanted to wear a hat too.

Waiting in the neurology exam room

The Thursday  before last, we went to see a neurologist to talk about Scout’s neck. The short of the long of it is, nothing seems to be alarming, but they would like to do some more tests just to make sure. Of course, an MRI is preferable to them, but I had to express my concern about having to sedate her for anything right now. I told them of the complications in the past with intubation, so I said that if it was possible to do a CT scan or X-rays, that would be preferable for Scout and us right now. We are now waiting on Scout’s Orthopedic doctor to see what he thinks. But really, she is looking 20,000 times better in the neck area than she did a month ago. I’m hoping and praying her neck just needs time to heal and it’s nothing serious.

This is how she held her neck about a day after she got out of the hospital.

We drove to Bowling Green, Ky that Friday to see Gabe’s parents. It was a three fold trip. We haven’t taken Scout on very long trips because she eventually complains about her neck hurting, so we’ve been very reluctant to go too far. One of our cars has been acting a bit naughty, so we needed to visit Gabe’s dad (our family mechanic) to try to get the problem fixed. So we thought we would take the hour trip to #1-See if Scout could handle sitting up in the car seat that long, #2 Get the car fixed, and ,#3 Let Scout’s Grandparents smooch her cheeks. Scout did pretty good, but she did say her neck hurt by the end of the trip. While we were there that night, we accidentally gave Scout one of her heart medications that she is supposed to take in the morning.  I have alarms set on my phone for what Scout takes and when Scout is supposed to take her meds, but we screwed up (which hardly ever happens).  So spent some of the night on the phone with the Dr. on call.  Scout was fine, and we got it all worked out.  If it’s not one thing, it’s the wrong heart med at the wrong time. P.S.  Her weaning schedule was crazy and we got through that one without messing up.

On Saturday, we drove back home to meet my mother who drove up from Florida. It was a very short visit, but Scout was so glad to see her.

Monday, Scout’s Early Intervention teacher, Jessica came to the house for a visit. It was her last. Jessica is moving on to work with the school system. We are so sad to see her go. Jessica swooped in at the perfect time when we needed her expertise on some pretty important stuff. And now her job here is done and she’s off to save the day somewhere else.

Tuesday, our friends Rose and Dave came to visit. If you remember, Dave made some posts while Scout was in the hospital. Rose is on her way to become a genetic counselor. So far, she’s mainly focused on horses, but that will change soon. Maybe she should focus on connective tissue disorders.  That night we went to dinner at Dave’s parent’s house. After we got home and put Scout to bed, at about midnight, I heard her coughing, and crying a little. I went into her room to check on her and saw something Scout has never managed to do before. She had vomited. Listen, this was an event because-of all things Scout has gone through, she’s never thrown up before.  So, she didn’t know what it was, and we freaked out (on the inside) a little, because she hadn’t ever done it. The puking episode lasted for about two hours. She had 3 baths, I went through 3 shirts, she went through 2 pairs of PJ’s. Her hair was washed 3 times, mine twice. Gabe washed many sheets, towels, and clothes while I held her, but by around 2:30am it was over. I think the cause was too much dairy. She normally drinks rice milk and we were trying to incorporate more cow milk, plus she had had some ice-cream that night. So, that’s what we get for being too cocky with the cow milk I guess. She’s been fine ever since.

Wednesday, I took Scout with me to Sally Beauty Supply to pick out some scissors. We came home, I put her in her little pool outside, and Gabe and I finally cut her hair. She didn’t freak out at the sight of scissors.  That was all we asked for.

Waiting in the cardiology clinic

Thursday, Scout’s physical therapist, Martha came over. We hadn’t seen her since we’ve been back. She taught Scout how to go up and down the stairs, and then at the close of the session, Scout wanted to show Martha her skills on the turntables. Then we went to the cardiologist. The more we go, the more endearing the people at that clinic are to us. Our appointment was at 3pm, but I had spoken with Erica, Scout’s nurse/case worker and she said that Dr. Markham’s schedule was light that day, so we could come in whenever we wanted. When does that ever happen for a Dr.’s appointment?!  So we got to come in before Scout’s nap instead of interrupting it. This was the first time Scout has visited the cardiology clinic without having an echo. I’m sure she didn’t miss that part. And somehow, she has managed to own that place. Erica let her roam the whole clinic (even the “staff only” areas) while we talked to Dr. Markham. She was offered as many stickers as she wanted, but she only took one initially. When we left, Erica made sure Scout took more stickers. We sure are blessed to have all of these folks in our lives.

We went Friday morning to get her fitted for some new orthopedic shoes called “sure step“. They will hopefully provide more support when she walks. These will not replace the bracing she wears at night, it will just be an addition to what she will have to wear on a daily basis.

The feeling of being on the other side of this surgery is such a relief. We look at Scout and are amazed at how far she has come from what happened only short time ago in the PICU at Johns Hopkins. There were times we would look at her the way she was in that hospital bed and wonder if we’d ever have that spunky, determined, happy little girl back. Her language took off the moment we got her out of the hospital. My theory is, just because she was sedated and paralyzed doesn’t mean her brain stopped working. She’s getting into everything she is-and is not supposed to, and wearing me out. She never stops.  All I can say is “Thank God”. To quote Regina Spektor, “…the future, it’s here, it’s bright, it’s now”. We are so thankful. We are so blessed. Thank you for supporting us through this.

Here are a few moments captured digitally in the past week or so. Enjoy.

Just wanted to share  this news story about a young man named Brandon,  and the church he is a part of.  We sat by his mom and dad at the Loeys-Dietz conference last summer. It’s great to see what people can do when they walk in Love.  We are proud to know a lot of those kind of people.