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 weather.gov 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. 
 SO. MUCH. FUN.
 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.  
 MY LOVES!!!
 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.  

Wednesday, December 10, 2014

To the Woman Who Stopped Me in the Whole Foods Parking Lot

You didn't stop a momma who was endangering her child.  Allowing her brother to carry her twenty feet to her car door with me a step ahead wasn't going to result in anything harmful (probably).   And if he had dropped her it would have been an accident, not child abuse. 

Maybe you should have not said anything.  Or said something nice.  Because this momma has enough on her plate to shed tears over people like you.  You see, she's not a baby.  She's nearly two and a half.  And she should be running toward the car or running away from me or her brother like every other two year old.  I should be stressed out about her disappearing from me in a parking lot or a store like every other two year old.  But I don't get to worry about those things.  Because she can't walk.  And I don't know if she ever will.  When Ben and I found out we were having a little girl, I imagined so many things for her.  Playing chase with her brother or the dog.  Dance recitals with constant glances to side stage to watch her instructor doing the dance.  Play time in the bath or trips to the swimming pool or beach.  And while I do still hold on to those dreams, sometimes it seems like they are slowly slipping away. 

 
I spend every day making sure she has the best opportunities for health and well-being.  She is almost always right by my side day and night..  I have maxed out every available therapy and searched high and low, near and far, for any and every doctor who may be able to help her.  And I get looks from strangers clearly wondering what I have done to her that would cause her to be in a full torso plaster cast.  Did I drop her?  Or beat her?  Am I a terrible parent?  So feel free to add yourself to that list. 
 
You're certainly not going to beat me up anymore than I already have.  Because I often times wonder if this is because of something I did or didn't do.  Or maybe if I would have been more observant early on.  Or maybe I'm still not searching hard enough for answers or solutions. 
 
But I do know that we are going to try to make things as "normal" as possible.  And if her loving brother wants to carry his two year old sister a couple of feet in a parking lot, I'm going to let him.  And I'm going to worry about her safety with every step he makes.  The same way I worry about them both with every breath that they take.
 
Because you didn't just stop any momma in the Whole Foods parking lot today.  You stopped a momma who loves her children fiercely.  And if something did happen to one of them, it would be an accident.  So please don't throw around the words "child abuse".  And maybe next time if you want to say something, make it nice.

Wednesday, September 17, 2014

Repurposing with a Home Remodel

Updating a house.  It can be so expensive.  Having done a teeny bit of work on this home, I see how quickly budgets can be blown.  We almost always got 3 or 4 quotes for every job.  And almost all of them came in at least 20% higher than we estimated for; some were as much as double.  And I wasn't just ballparking.  I was figuring materials and labor and demo and all of that other jazz (blame years of estimating for construction projects).  And there are most certainly some projects that Ben and I couldn't do ourselves.  (I'm looking at you, new hardwood floors).  We didn't even take on the task of painting the interior.....because it was every single interior wall.  Imagine doing that with two kids running around.  NO.  THANK.  YOU.

But we were able to get a couple (and I mean a couple) of things done ourselves.  One that I am most proud of is getting the foyer chandelier repainted.  It was big and laquered brass (and I'm sure quite appropriate 30 years ago).  So how exactly do you go about repainting a chandelier....

Find a fixture you want to paint (or repurpose).  This was in our foyer.  I like the shape and size, but the color (and moreso, the shinyness) just were not working. 

 If you are cool with wiring or electrical stuff, you can take it down yourself.  I am not.  This was also in our two-story foyer so we needed a tall ladder and more than one person to take it down.  Ultimately, we had an electrician come in and take it down while he was in the house to do some other stuff.  You might think this is expensive, but think about how much less it is than purchasing a new light fixture.  We hung the light from the garage door frame in our garage.

Remove the lightbulbs and tape over the electrical part.  I also taped over the candlestick part.  I had looked at a lot of online guides and some people don't do this.  I personally didn't love the look of the fixture being all the same color.  I like the contrast provided by the "candlesticks" being white-ish.
 I didn't take any pictures during the painting process.  It was late in the day and both kids were with me.  They had already been such champs hanging tight while I taped off the fixture.  This is the paint I used in Oil Rubbed Bronze.  It has pretty good reviews and I did not find it difficult to apply.  My one piece of advice would be to stay at least six inches away from whatever you are painting and keep the can moving.  You can always apply more, but drip marks are not pretty.  We ended up using two cans of paint on this fixture. 
 We had the electrician come back in and hang it up.  I had missed a lot of spots on the underside while painting.  The bottom of the light was about 4 inches from the floor of the garage.  In retrospect, I would have hung the light somewhere where we had more light and I could have seen the bottom better.
 So we had to do touch up painting while the light was hanging in the house.  We covered up everything below the light and also built a little plastic tent around the light.  We worked inside of our little plastic bubble to touch up all of the areas that didn't have enough coverage.  This was a complete pain.  Keeping spray paint in a confined area is not that easy.  That's why if we ever do this again, I will make sure I am working in great light and can see from every angle. 
 The light is now finished and it looks so great in the foyer.  The colors are a bit more in line with what is on trend now.  So for about $60 (the cost of the paint and electrician's time) I was able to totally transform the look of a room.  Money well spent when I take into account all of the fixtures I was looking at were over $1,000.

You hear a lot of people do a project like this and then decide they have a million things they want to spray paint.  I'm not there, but I definitely won't let a "little" project like this scare me.  It was cheaper and greener than buying new and I'm totally pleased with the finished product. 

Monday, July 28, 2014

Home Transformation

We closed on our new home in mid-May.  We moved to Illinois in early-June.  After what felt like forever, but was really not long at all, we moved into our new home in early July.  The flooring project took longer than expected so we had to push our move in date out a couple of weeks.  We were finally able to put down area rugs this past weekend. 

We didn't really take on "major" home improvement projects.  We installed unfinished 2-1/4" red oak flooring throughout the main level of the home.  There were several different types of flooring:  prefinished hardwood floors, original parquet floors, tile, carpet and original hardwoods.  Ben didn't love how it didn't flow.  We also painted the entire first and second floors.  Again, it was a flow issue.  We plan to do more over time, but it comes down to keeping the improvements in line with the value of the home.  I would love to redo the entire kitchen, but it works for now and it has been updated.  The kitchen I would want would cost a lot of money so it can wait close to a decade.  We would also love to do a media room in the basement when the kids are older.  And the yard needs a lot of TLC.  Our next big projects will probably be cleaning up the yard and replacing a lot of the old mechanical equipment - all but the hot water heater is original and will probably go out soon.

But for now, here are some of the updates.  I haven't hung a single thing on the walls yet.  We are actually still unpacking some boxes.  But these are the first three rooms you see when you come in the front door so they are the most done.  (And the pictures are from my phone so the quality is a little iffy).  Also, the rooms are not terribly dark, but they do look darker.  We practically live in a forest and there is a lot more canopy cover now than there was in April.  And we have the screens on the windows which makes it a little bit darker too. 

The foyer had a lot of brass and yellow walls.  The floors were parquet.  And there was a two tone floralish runner on the stairs.
 We painted the walls SW Neutral Ground (it's actually BM paint that has been matched; our painter preferred BM).  We spray painted the chandelier with Rustoleum oil rubbed bronze.  The stairs were refinished and the risers were painted white.  We also replaced the floors.  The stain color is Provencial with a satin finish. 
 The dining room was similar to the entry.  Same floors and same green. 
We painted the walls SW Versatile Gray (again BM color matched), replaced the light fixture, replaced the floors. (And put the screens back on the windows.)
 The living room had prefinished hardwood floors that were newer (and it stung a little bit to take them out just because they were nice).  And the walls were the same yellow as the entry (or close to it).
 The hardwood floors were replaced (stain is Provencial with satin finish) and the walls were painted SW Versatile Gray.  We put the screen back on the windows.


It's nice to finally be settling into a routine here.  I still have a ton of stuff to put away upstairs.  More updates to come.