Wednesday, May 13, 2015

On Matters of Her Heart

I often wonder what to disclose on this site.  Just because something is part of our journey doesn't mean that everyone gets to have a little slice.  And sharing some things can be just downright scary.  But ultimately, I share because we need the prayer and the good vibes put into the universe.  And if I kept this one thing from our "journey" now I would be leaving out a big scary piece.  And I want to look back and know that it wasn't really all that scary and all things worked together for the good.

Back on March 30, Allyn had an echocardiogram.  Looking back, I'm really not sure why we haven't had one before given all of the issues.  We waited on results for over a month.  We emailed the doctor who put in the order just to touch base with him and make sure everything was okay.  Because surely if something wasn't okay they would have been in touch with us right away. 
 Well, finally last Tuesday our geneticist got in touch with us and they had reviewed it.  (We still aren't sure how it fell through the cracks and took so long for someone to review).  Ben took the phone call and he learned she had a whole in her heart, a PDA.  This is something that has been there since she was born and we should have caught it sooner.  Someone should have caught it.  We needed to be downtown Thursday for an appointment with a cardiologist. 

 So Thursday we have to take Nolan out of school at lunch time because on short notice it was pretty much impossible to find someone to watch him for who knows how long. 

 But he wasn't sad about it.  Not one little bit. 

 Neither was she, before the doctor came in.  But she SHUT IT DOWN when he arrived. We learned that not only does she have a smaller patent ductus arteriosis (PDA) but she also has a moderate to large size atrial septal defect (ASD).  Both of these are congenital heart defects and have been present since before she was born. 

These defects are putting a lot of stress on the right side of her heart.  She currently has a very enlarged right side of her heart and the pressure difference between the right side and left side is 30 mmHg (normal is closer to 5).  Additionally these defects cause slow growth, failure to thrive and increase sweating.  These are things I have been talking to every doctor about since she was six (SIX!!!) months old.  And never once did any doctor think to check her heart.  We were always so caught up in her spine.  I had high amniotic fluid during my pregnancy and we could never find anything.  She had an elevated breathing rate post delivery and we never thought to check her heart. 

I'm angry: at myself, at the doctors, at the world.  I feel like someone should have thought to check.  I don't know that it would have made a difference, but maybe it could have.  But I'm reminding myself that is done.  We have to move forward.  We have to fix this.  We came back from our appointment with a bit of a game plan but won't know more because unfortunately the hospital where we are seen is in the process of reworking their heart catherterization lab and there was a big cardiologist meeting in San Diego as we were learning all of this. 
After a long drive back from the city (why are all of our appointments over with just around rush hour?) we came home to play outside and share the news with our families.  I had to carry peanut around because she was wearing an ECG monitor for 24 hours and pissed off at the world about it.  The boys "leveled up" in a game of water guns.  

Oh, that monitor was not our friend.  
So now I'm repeatedly reminding myself that now we know.  Now we can piece together a game plan.  One that provides her the utmost quality care we can find and heals her heart and gives her still very crooked spine a chance.  I don't know if the two things are working together.  But I'm trying to have hope that she has a heart cath that is able to get the necessary diagostics and they can repair the holes during the procedure and open heart surgery will not be necessary.  The cardiologist reminded us that these are fairly common procedures.  And we are strangers to common.  But he did say her case was complicated so he would be reviewing it more this week and talking with other doctors and reviewing literature. 
So if you read this, say a prayer for her.  Say a prayer for us.  Let her heart be repaired.  Let it not impact negatively her spine.  Let it allow her to grow and thrive.  And let things start looking up.  

Monday, May 11, 2015

Go West

For Spring Break this year we traveled to the Denver area.  Ben's sister lives in the city and we were able to get a home in the Granby area to stay.  It was nice to have a few days to hang out with Ben's family and the boys got to enjoy their fill of winter sports. 

The Saturday before our neighborhood had an Easter Egg hunt.  I look frightful, but Allyn is looking precious.  She loved every second of it and cherished her five eggs that she was able to scoop up before the faster kids could get to them.
 Nolan loves to stay abreast of safety information on the plane.  But we flew Southwest this time and they had the free tv.  So it was a nice break to not have to answer 30 questions regarding evacuation.
 When we got there the weather was spectacular.
 Emily got there the first night and the kids were so happy to see Lala/Umie.
 The first full day we were there Allyn and I hung back in the house.  She is SO HAPPY when she is not restricted by that cast.  We played and walked.
 And watched tv.
 The next night Ben's family arrived and this little girl had some people wrapped around her finger.  And she got quite good at tossing the dice.
Everyone was happy to climb on Poppy.

 Mimi and Poppy had a little birthday celebration for Nolan while we were out there since they would not be able to be here for his birthday this year.
I am so happy that Nolan was a trooper on the mountain.  I think he really enjoyed ski school and we will definitely go back soon.  He told us how they went to see where animals had scratched on trees.  That was his favorite part of the lesson.
 On our last day there, the boys went tubing.  We had already left the condo so Allyn and I sat in the car for about an hour and a half and watched this view.  My glasses were of zero help to figure out which group was "mine."
 And girly was OVER IT.
 But boy did he love it.
 Our flight back to Midway was awful.  For the very first time in my life I got sick on the plane.  I felt fine until we got into the Chicago area and it was so windy.  I had consumed an entire bottle of water and a mini package of Cadbury mini eggs.  I made it all of the way to the gate and then filled up the bag.  Ben had already taken Allyn off of the plane but I had to get Nolan and our diaper bag and the barf bag.  I was almost in tears because I was embarrassed and overwhelmed.  And if that never happens again, I will be so happy. 

When we got back, the next morning was Easter Sunday.  Nolan received a fish tank.  He was so proud.  He got some fish:  Salary and Marky.  (And Marky II and Marky III and Marky IV). 
I loved being able to take a trip to see family and have fun.  But next time, please please pretty please, let it be somewhere warm. 

Monday, April 20, 2015

Cast 11

I've been avoiding updating the blog.  I'm not sure why and maybe I am.  As much as I would love to be a light of hope for someone on the EOS journey, our road is not as I had imagined it would be.  It's really rough with no end in sight.  And that overwhelms me and I don't have a lot of good things to say.  And I can't say anything bad either.  So I guess as it stands, maybe I don't really have anything insightful to say.  So here is an update after ten casts and getting Cast #11. 

We took the cast off at home on Sunday, March 29.  The next day we headed into the city so she could have an echocardiogram.  With suspected mitochondrial disease we have to check a lot of things. 

The next morning we headed out for a family vacation to see Ben's family and some friends just outside of Denver.  (I would love to write a post on the we'll see).
 Allyn was such a doll on the trip.  Seeing Lala and Mimi and Poppy made her a very happy girl.  And Nolan was jazzed too.

 I had to include this picture because I have major hair envy. 

 Pre-op x-rays.  No change.  We have been holding around 40-45 degrees out of cast for a year.  It stinks.  And I try to pep talk myself up because it's not getting worse, but still...
 This girl is OBSESSED with baby squirrels.  Baby anything, really.  In pre-op, Ruby had a baby squirrel beanie and let us keep it.  It may have been the highlight of A's week. 
 It was a LONG tiring day. 
I was ready to go home.  But she wanted to head down to the play area and burn off some energy.  Seriously?  Always full of surprises.

I wish I could say more.  Or say something positive.  But right now I am just in this weird sad headspace.  I know I have so so so much.  And I should be thankful.  But a big part of my heart breaks every single day when I think about how hard this has been (on me).  I think Allyn has handled it beautifully and Nolan has been a trooper.  And I think even Ben is much more gracious given the situation.  But I know things will look up again.  I just hope it's soon. 

Sunday, March 15, 2015

Life Never Slows

Just like always, things are exceptionally busy here at the Scarbrough House.  The last two years of my life often seem like some sort of dream.  Sometimes good and sometimes bad.  But I guess when things are moving so fast, you don't really have to much time to dwell on the sucky stuff.
I guess it's a good thing these two still periodically slow down.  I don't think I will ever tire of waking up to these sweet faces.  Even when they do kick me out of my own bed way too early in the morning. 

Ben's mom was able to come and visit President's Day weekend...also Valentine's Day weekend.  We learned on Valentine's Day that Nolan is most certainly sensitive or allergic to blue food dye after having a blue Gatorade and blue Icee and then vomiting all over the floor minutes before we were supposed to leave for a date.  So I've been making a lot of attempts to check labels and really limit all dyes he is injesting.  We have also added one fresh fruit to his dinner meal.  We had really fallen off the fresh fruit and veggie train lately opting for packaged stuff.  It was a challenge but he does really like bosc pears and mango even if he would never let us know. 

The weekend after President's Day Ben and I got hit with the good ol' norovirus.  It took us out for days.  And by took us out, I really just mean, made things a lot harder.  Because the kids were fine and firing on all cylinders.  For the week, I lived on rice, hot mint tea, bananas and 231 popsicles.  And if I never get that virus again, I will be beyond thrilled.

The following weekend, we had our neighborhood Wine and Cheese Social.  It was fun to get dressed up and have real conversations without being interuppted a half dozen times...during one sentence.

Look, real clothes!  It's always nice to get in the closet and find something fun that you haven't been able to wear in the past year.  Because you have no social life.
Prior that same week, we got a phone call from Allyn's geneticist.  Her muscle biopsy came back with some issues.  Her mitochondria are abnormally shaped on the EM.  This leads us to believe that she most likely has mitochondrial disease which totally sucks.  But right now we don't have an official diagnosis.  She has two systems being affected:  neuromuscular and digestive.  For an official clear diagnosis, they want three systems.  Additionally, all of her bloodwork has come back normal to date.  So thrown into the mix, we added another clinic to our ever expanding rotation.
 Another trip to UIC to see neurologists and geneticists and get thrown in a room with a bunch of medical students. 
Everyone looks so thrilled to be there, huh?  And there were four more people in the room:  Ben, Nolan, her geneticist and a genetic counselor.  But seriously, it's always nice to have another set (or 4) of eyes watching things.  Maybe someone will think of something and we'll get all of this figured out.

We have more tests scheduled for the end of March.  We will see an audiologist, have more bloodwork done to check some other markers and have an echocardiogram of her heart.  We saw an opthamologist this week.  And yes, I used to complain when I had to take Nolan in to see our pediatrican for an ear infection.  Was I unbearable or what?

The weekend after our Wine and Cheese Social, we had Nolan's school social.  It was a dinner and live and silent auction.  I kept getting outbid on the kindergarten experience.  I finally just walked away.  I don't think myself or the other main bidder had a limit.  And I just couldn't keep going back and seeing myself outbid by ten freaking dollars.  So we did the wine pull and brought home a bottle of merlot.  I do love our school and was thrilled to get the opportunity to support all of the fun stuff that Home and School does for our kids.
AND.  I got to dress up again.  Woo Hoo.

And the following morning, this little peanut had a lot of opinions about everything.

Most recently, we have just been doing a lot of therapy.  Not that we have any more sessions, but we are able to accomplish a lot more during our time with her and I can see results from working with her in our play time.  Her speech progresses every day.  She has new AFOs and they have helped so much with her walking.  We are still waiting on the pelvic stabilizer for her walker.  And once that is here, I plan on doing as much functional walking as possible. 

 But she has been practicing her functional walk a lot.  We walk into and out of the gym.  To the mailbox and for a bit of the walk to get Nolan at the bus stop.  Love.  Love.  Love.

Tuesday, February 10, 2015

The Things We Are Too Afraid to Discuss

And trying to celebrate the small victories.

Allyn has been making great strides since December.  She tells us she wants to walk.  Her language has gotten so much better.  She is eating.  These are things I have been terrified to acknowledge to anyone, including myself.  And how crazy is that?  These are things I should be celebrating.  They are HUGE. 

 And yet, in my warped mind I feel like trivializing them will make all of this easier.  If we have another setback, maybe it won't sting so much if no one else knows truly how far we have come. 
 Of if our progress slows or comes to a halt, I'll be able to cope with that.  Being a mommy to this wonderful child has exposed me to so much.  And I'm much more capable than I would have ever given myself credit for.  Before Ben and I had children, we decided that I would stay home with them while he worked.  A stay-at-home mom.  It seemed like an easy job.  And with both of my children, it's been anything but...and for different reasons. 
 But I've learned through this process, this is the thing that I am truly amazing at.  I am a really good mom.  I love my babies fiercely.  I've had sweet comments on this blog from complete strangers.  And how can you really tell anything about a person from the little snippets of a "perfect" life they let you catch a glimpse of?  But then I hear it from people who know me too.  And I have a great husband who supports me through all of the heartache and my drama.
 Having a child with "special needs" has really brought all of this to the front of my mind lately.  But really, her needs are not all that special.  All she really needs is love, security and all of those other warm and fuzzy things.  We'll get the rest figured out.  Or we'll adapt.  That's the thing about her and her brother.  I would move mountains for them. 
 Watching Allyn develop in the past two months has been eye opening.  And in some ways, it's like I'm seeing the world through new eyes for the first time too.  There is such joy in the little things. 
 Excitement over steps, the way Nolan talks to her and encourages her, feeding herself an entire meal and knowing that we can finally communicate with some efficiency using words.  I finally feel like I should be shouting from top of the world how great God has been to us.  How I can feel this hope engulfing my life right now.  And it so scary at the same time because I fear that it could be stripped away at any moment.  But I feel like it's okay to say that I am scared.  Because being a parent, no matter your situation, is scary.
 So for now, I'm going to celebrate these victories.  No matter how small they may be.  We have truly come so far.  And thanks for sticking around for the rather exciting ride. 

Saturday, February 7, 2015

Snow Days

Last Sunday we got slammed with winter weather.  The forecast started off mid-week showing accumulations of up to five inches.  By the time we checked the forecast discussion on Saturday night, the totals were closer to twelve inches.  So we finally broke down and purchased a snow blower.  As we were putting it together one of our lovely neighbors came by to tell Ben he would snowblow the driveway because there was no way Ben could shovel it.  I think he was terrified that he would have to do CPR on him in the driveway. 

This was Ben's drive on the way to buy a snowblower.  I think we it had been snowing for about 6 hours at this point.  It was a very wet and heavy snow. 
The view from the kitchen window. 
 Later, Nolan got up to play in the backyard.  He and Ben had the best time playing in the snow and clearing off the driveway, sidewalks and deck.  I really enjoyed staying inside of a warm house. 
 This was on the afternoon of the big snow event on our back deck.  The deck doesn't get any drifts so I think this is a pretty accurate total for accumulation at that point in the day. 
 And it lasted all day.  We went to a Super Bowl Party at a neighbor's house that night.  There was a big turnout of a lot of us that lived close by.  It was great to go somewhere and not have to worry about not getting home.  We debated walking but later in the day, it turned into blizzard conditions and we were not sure how clear the sidewalks were on the way so we drove.  And parked in their driveway. 
Sweet Nolan got up the next morning since school was cancelled to check the totals.  He was VERY excited about no school.  He had missed the Friday before because Allyn had a stomach virus and he said he wasn't feeling well too (turns out he was just fine).  And then he missed Monday because of the snow.  Ben was lucky enough that he was able to work from home.  We spent most of the day inside playing the basement and staying warm. 
Later in the afternoon after Ben had finished all of his work, he took Nolan down to our secret park.  It was just beautiful. 
 And I'm pretty sure they had an amazing time.
Sweet boy snuggled up in his bed.
And then on Tuesday, it snowed again. Unfortunately this time Allyn and I were stuck near Chicago close to rush hour at a doctor's appointment that was running really late (like 3 hours late).  And then a commute home that should have taken 45 minutes took 2 hours.  And she cried almost the entire way home.  Me + Driving In Snow + Rush Hour + Crying Little Girl = MAJOR STRESS.
Is it too early to say I'm ready for Spring?  Or Summer?