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?

Thursday, February 5, 2015

Cast Ten

 On January 19, at 5:30 a.m. we all headed to Oak Park to have Cast #10 applied.  Every time I say or think "ten", I just can't believe we are this far in.  Ten casts.  Twenty months of serial casting.  Allyn has spent more days of her life in a cast than out.  To say I was super hopeful and optimistic that there had been some correction in this cast would be a gross understatement.  I needed to hear that we are seeing correction. 

So the night before, a special little dolly got her last bath until probably April.  I try to soak up these easy moments in the bath that we both love so much.  The smell and feel of her skin after.  The joy that she has as she splashes in the water. 
 AND THIS FACE!  When she comes out all nice and clean. 
  She has reached the age that she knows exactly what is going down when we head into the hospital. It's tough on me and I know she is scared.  I used to think this would be one of those things she would have no memory of.  But now that she is getting older, I'm not so sure about that anymore.  But I want her to know that every time we took her in, it was to give her a better chance at the best quality of life.  As hard as the days are for everyone.  So there were a lot of tears that day from check-in all of the way through pre-op. 
 We headed to radiology this time and got a lot of x-rays.  Our geneticist suggested we do a complete skeletal survey to see if she had any type of dysplasia or other orthotic or bone growth issues.  We may be looking into some more alternative (because what is more alternative than serial casting for a spine?) therapies to help her growth but we kind of need to know if there is something else going on and her genetic microarray came back normal and her endocrinology results came back normal.  We also did a muscle biopsy while she was under general anesthesia that day just to more understand our baseline and any possible underlying conditions that may explain her overall low tone, short stature and inability to gain weight. 

The x-ray still shows her around a 40-degree Cobb.  This is where we have been since April of last year.  It was tough to hear that.  I didn't cry but I wanted to.  All of this work, and we are not seeing positive numbers.  I just pray that there is some good that comes of this season of our lives:  less rotation and better symmetry, increased lung volumes, something...anything.  Because as it stands today we are looking at a long road of surgeries for this little sweet potato.  The thing we were trying so hard to avoid by serial EDF casting. 

And now we have decisions to make.  Do we keep casting?  She had issues with coming out of anesthesia again.  This is the third time.  And she has been under general anesthesia eleven times in her short little time here.  And as a parent, you get nervous every time.  So now we have to talk with her surgeon to determine next steps.  I feel okay with going to the two year mark for casting and that will give us two years of growth of her thoracic spine.  But if the numbers are not improving we may have to look at switching to a brace and hoping that can hold her until she is big enough for surgery. 
Poor doll was just pitiful when I got to pick her up in post-op.  She nursed and snuggled and fell asleep.  And then to keep it interesting, she peed out of the side of her diaper all over my pants. 
We made it home just in time for both of us to take a nap while the boys played.  

Sunday, January 18, 2015

Weekend Roundup

We enjoyed a cast free weekend.  Tomorrow marks our tenth cast and getting back to our normal.  The weather here was "lovely" this weekend.  It was 40.  Growing up in Mississippi that would be considered frigid, and here on Saturday I wore capri pants to my Pilates training. 
On Friday night we went to eat dinner at Noodles.  I did not want pizza and I had cooked all week.  I just wanted a break from cleaning the kitchen.  
And someone looked so adorable at dinner.  

Saturdays are busy this January and February.  I do personal Pilates training on Saturday mornings and about an hour before my training, Nolan has ice skating lessons.  (Pilates side note:  this was my first time to do the chair.  AND MY ABS!).   Sweet Allyn was quite pleased when I got home.  
 After lunch we made cupcakes.  Nolan loves to make and eat cupcakes.  He loves colorful frosting.  But this may mark the end of the food dye frosting.  I think he had at least three cupcakes throughout the day on Saturday.  And on Saturday night he puked his guts up all of the kitchen floor and it was blue.  I'm fairly certain it was a reaction to the dye.  Lesson learned:  just make the icing from scratch and skip the dyes. 
 Saturday afternoon he had ski lessons.  He and a friend are in the same class for 5-8 year olds.  His friend is about a month younger than he is....and a totally average size child.  So yes, Nolan is THAT tall.  After lessons, they had dinner at the ski hill while Allyn and I hung at the house.  We then headed to LL Bean to exchange a coat I purchased for Ben.  Turns out I did get the right size and we really didn't need to spend a couple of hours on that task, but we did score Nolan another pair of ski pants for $24 and some new mittens for $16.  Nolan was anxious on the whole ride home and when he hurled 19 seconds after walking in the door we knew why. 
 We haven't been the best about getting out and finding a new church.  We have been to a few in our six months here but just not feeling the vibe of one yet.  This morning we made breakfast at home and measured our heights.  Maybe we'll get back into the swing of attending during this next cast period.  We try to avoid exposing Allyn to a lot of stuff during her week out because if she is sick we have to delay getting a new one and that could mean a loss of correction.  And that would just stress me WAY out. 
Tomorrow morning we'll get up bright and early and head to get our tenth cast.  Since the kids are out of school, Nolan is going with us.  He is pretty excited about the air hockey table and playing basketball.  I always hope the numbers in her thoracic curve are better, but they have been holding at about 40 degrees since April.  But every new cast is an opportunity for a miracle.  And tomorrow we will see what is in store for more our scoliosis journey.

Thursday, January 15, 2015

When Cast #9 is Off, We Play

We took cast Number Nine off this past Saturday.  Allyn spent almost eleven weeks in this past cast.  We asked that her surgeon let her go longer periods in each cast since we haven't seen any correction in the past year and would like to keep her at least in a holding pattern for as long as possible to delay any surgeries.  I thought the extra few weeks would be tough, but it was just more of the same.  And I'm hopeful that this cast provided some correction and he will let us continue casting as long as we are seeing results. 

But when casts come off, you MUST have fun  Get wet, get messy, get clean, etc.  We live in a weird hyper-aware state around the Scarbrough House.  But in cast off week, we let loose (a little bit).

Saturday we had a super busy day.  Our annual homeowner's meeting was that morning at the same time as Nolan's first ice skating lesson.  So Ben took both kids to the rink so I could attend the meeting.  Afterward, we took the cast off and Allyn did not nap.  Ben and Nolan headed to Nolan's first snow skiing lesson.  And when they got home we headed up to Timber Ridge at Lake Geneva. 
Someone really loved the baby pool area on day one.  We did the swing and did a lot of walking around in the water.  

 And a certain brother went down the slide no less than 30 times. 
 It's his favorite.
The boys wanted to stay late and play.  I was tired and Allyn was hungry so we came back to the room to rinse off and get a snack.  Love this little peanut so much.   
 We all got up early the next morning to hit the park again.  We stayed until we had to check out of our room and then headed back south.  It was nice to be able to do something special for Nolan.  And it was also nice that Allyn enjoyed it a little bit more this time.  I'm hopeful that a beach trip later this year won't be a total bust.  
 And then this past Tuesday little dolly got her second ever haircut.  I decided to get it just short enough so that it does not go all the way into the cast.  She just has the best softest sweetest hair and I couldn't go too short.  Even if she refuses to let me pull it up or back or put a bow in it. 
This adorableness lasted from about 11:15 until just after lunch.  But it sure was cute.
And GOOD NEWS.  Allyn is getting around a lot better now.  She is all over a tall kneel, she can easily go from sit to stand and pull up on stuff and is doing some cruising.  We finally got the part we needed for her gait trainer on order so I am hopeful that will get us using that more.  AND she is talking so much more now.  She still has trouble with making a lot of sounds and is deleting end consonants but she is saying a lot of sentences and we can understand her.
Thank you to every single person who has ever said a sweet prayer or thought over this precious girl or our family.  It really does mean a lot and when we make great strides in such a short period of time I just can't help but be thankful for everyone that thinks the world of this little doll.