Friday, December 27, 2013

Dolly's Loves

If you know me personally, and spend any time around me and the nuggets, you know that I often call Allyn, Dolly.  Why?  She is like a sweet little baby doll.  I have always said my favorite phase of having a baby is when they interact and sit and don't do much else.  Well, here we are at 16 months and I still have that.  She sits and scoots and babbles, and that's pretty much it.  So, basically I still have a 5 or 6-month old.  And on the one hand, I love having a baby, it is bittersweet.  I so badly want her to hit milestones.  And I tell myself, we will get there eventually.  But I love Dolly to pieces. 

But what does Dolly love?
 She loves baby dolls.  And babies.  Sometimes when we see a 3 to 4 month old baby, she so badly wants to get her hands on him.  But usually, he is bigger than she is.  ;-)
She loves her sunglasses.
 And mine.  She laughs every time she puts them on.
  She loves her brother's rocking chair.  And his books.  And his room.  And pretty much anything else that belongs to him.  She loves him too.
 Purses, shoes, lip gloss, hairbrushes.  Just so you are certain she is 100 % girl.
 And Mickey Mouse.  She will point and the tv and grunt.  And usually only Mickey will do.  Sometimes I can get away with Henry Hugglemonster or Peg Plus Cat.  Nolan never cared for anything at this age.  I now know what all of my parent friends were talking about when they said their babes were obsessed with Mickey Mouse Clubhouse.
And the only thing that we have eaten consistently in the past two weeks.  YoBaby banana yogurt.  And wouldn't you know they seem to be having some supply issues so I have only been able to find it at one store in town.  

Friday, October 25, 2013

Business as Usual

Every day around here is an adventure.

Allyn is quite the little dancer. She loves music and will sing and dance whenever it is on. And rocking out with Elmo is no exception. I was trying to get a video to send to daddy while he was out of town.

video

And as you can see, Nolan had other plans. 

Looks like we may have a football player on our hands. 

Monday, September 16, 2013

My Solo Weekend with the Nuggets

Ben went out of town this weekend.  Fly fishing and camping.  Nolan loves both of these things so we just left it at dad going out of town.  His consolation prize was getting to sleep in mommy and daddy's bed.  The best.

Allyn has been eating a lot more lately.  Compared to other babies her age, I'm sure it's still bird-like. But it is a huge improvement.  Here she is with a yogurt mustache.
 This is one of my pet peeves.  We have 12 pillows on our bed.  I like the bed made up.  Every day.  Nolan loves to knock them down; throw them on the floor; rearrange them.  Drives me crazy. 
 Peanut wearing her brother's shades.  Adorbs!
 And here they are "playing" together.  It is really just harassment of one by the other.  Alternating of course.  Nolan was focused on some very specific task.  Allyn was the one annoying him.
And look, just like that, all back to light and happy.  And we sure are glad to have dad home!!!

Wednesday, September 11, 2013

Wherein I Get Honest

I have had something on my mind.  And I have been thinking about it.  A lot.  And it's one of those things that you debate opening your mouth about because of the criticism that could follow.  But a series of events has me getting it off of my chest. 
 
When Ben and I learned of Allyn's diagnosis of Early Onset Scoliosis we were just as uninformed as the general public.  We both know what scoliosis is.  I have it; my sister has it.  But we just didn't know the degree to which EOS (or infant scoliosis) is so drastically different from the type you typically see in adolescents.  The mechanics are the same.  Something (or nothing) causes the spine to start not growing straight.  Growth is the force that drives the curve. 
 
So how could it be so different?  Well, Allyn is little.  Tiny.  She has years and years and years of growth.  Most of her growth is in her trunk right now.  That growth is exactly what causes her curve to get worse.  So we have over a decade of working on getting and keeping her spine straight.  And not just a little growth to battle and harness, but a monstrous amount of growth as compared to an adolescent who is growing more in her limbs than torso.  And we need the time.  Because surgery might be on her plate, but we can't do surgery now.  She is too little.  There are rods, but those require annual lengthening surgeries.  So the sooner you have that done, the more surgeries you have.  Fusion is not even an option until she is older because it could so negatively impact her lung and heart function.  And these are the things that stress me out.  Because I pray every day that we are making the right decision in casting her.  Casting may heal her completely.  But at a minimum, it is buying us time so that her curve can't progress until she can ultimately have surgery. 
 
And my worry doesn't stop there.  She is a beautiful little girl.  (At least her momma thinks so.)  And I every day it weighs on me that this is also a physical thing.  And kids will judge her and parents will stare.  And, oh my goodness, what if boys don't like her or don't think she is pretty.  Because super awkward teenage Shelley knows EXACTLY what that feels like.  And that pain still sometimes tears at my heart and rears its ugly head in how I uphold myself and where I place my priorities.  And yes, it's vain.  But it is real.  We are created in His image.  But we hold beauty in such high regard in society.  And I worry if Allyn has a curve or a brace or a scar down her back, will that leave her broken.  I pray that it doesn't. 
 
And then sometimes I just want to LOSE IT when people go on and on and get worried about their child going under general anesthesia for 30 minutes...one time.  Allyn is put under every 9 weeks.  And she is one of the luckier ones.  Her 'surgery' is fast and she isn't out for long.  There are children that are under general anesthesia for HOURS.  These kids are having eight hour surgeries and often it is one in series.  I just don't even think about the being put under any more.  I tell myself, the doctors are trained and skilled and they do this every day.  And nothing but the will of God could change what will be.  But those poor parents that have to wait all day to see their baby after surgery...that is heartbreaking.  (This is the part I just worry about rubbing so many people the wrong way).
 
And so if you tell me about your cousin that wore a brace when she was a teenager.  Or some famous athlete had Herrington Rod surgery at 17 years old and I just give you a pleasant smile, thank you for letting me know that you are thinking about my baby and thank you for trying to ease my fears.  I'm trying to not let this process turn me into a bitter momma.  And these are 100% my issues and hangups.  I know this.  But maybe airing them out for a bit will help.
 
 
This picture was taken at the Arkansas Children's Hospital Foundation Color of Hope Gala.  We also go to ACH to deal with some of Allyn's other issues.  I just wished they would have picked a color other than orange.  I mean, seriously, how many more times will I wear that orange dress?  But if Ben asks, I'm definitely wearing it at least three more times.  :-)
 

And if you want to help a family struggling with this same horrible disease, you can donate money to the Real Superhero Project, ISOP or The Lucky Cast Club or Shriner's Hospitals for Children
 
(And I promise I will make my next post light-hearted and happy!)  

Monday, September 9, 2013

Cheers to the freaking weekend

That has always sounded so raunchy to me.  But there it is in the title.  Living on the edge. 

We had a productive week/weekend.  Allyn is now in physical therapy a couple of times a week.  Between preschool, my gym visits, doctor's visits, gymnastics, and now PT, we are staying super busy.  But less busy than summer....so that is wonderful. 

Also, I am constantly amazed by little peanut's ability for independent play.  I don't EVER remember Nolan playing with this barn.  She loves the figurines, doors and sliding chicken.  Sometimes I feel like I am neglecting her because she plays so well by herself. 
 In eating news, she has gained over half of a pound in a few weeks.  Yeah!!!  Turns out, like her momma, she loves chocolate.  This was after she licked chocolate off of a piece of my Kit Kat.  But don't worry, I'm making her eat her veggies too. 
 It's so yummy!
 Also this past weekend, we got around to organizing the upstairs play area.    There were 245,468 toys in baskets and scattered on the floor.  These organizing cases (that are bolted to the wall...so no moving them now) help keep tiny toys away from the baby and help me keep my sanity.  There is one more that is housing puzzles and board games and some books that is on the other side of the room.
 Clearly watching me assemble wore someone out!
 And I love watching these two entertain each other.  Nolan gets her so happy.  This went on for 20 minutes after dinner last night. 
 Love.  Love.  Love!
 And this is old, but I rarely rest because the kids love to be around me.  It's natural so I don't fight it.  Well, last week Ben really wanted to rest.  So he set up a quiet space on the living room floor.  And as you see, you can't escape the kids. 

Wednesday, August 28, 2013

Well, where have you been?

Kidding.

Summer was crazy hectic for the family.  Allyn got cast #1 on in early June.  The next week my grandmother passed away.  We had to travel back to the Delta three times during the summer.  And we had a second cast put on at the beginning of August.  Between keeping the N-ster entertained and keeping the peanut out of the heat, we stayed plenty busy.   But now the nuggets are back in school.  Holla!  And I'm catching up on all of the things that got away from me on our less than lazy summer days.

Here is sweet pea the day she got the first cast off.  She took a 30 minute bath right when we got home.  She took another long bath that night.  Her hair was so clean.  Cleaning a baby covered in plaster is not an easy feat.  It's so much easier to just plop her in the tub.
 And this was after bath time.  I think that sweet little smirk says it all.
 I got some pictures of her curve.  We didn't see any correction in cast #1.  She is still at 50 degrees.  But honestly, I think she lost some of the rotation.  The rib hump looked less noticeable. 
 She also loved the week of mobility.  She was able to curl up and roll and just be a baby. 
 She has not slept this well in two months. 
 Two weeks after we got cast #2, school started back.  Nolan is in preschool three days a week.  And I decided to send Allyn two days.  I'm still going up there mid-morning to nurse her.   I'm scared to let her go too long without nursing because she is so tiny and refuses a bottle or cup.  Girl just loves her mama.  So my breaks have been in 2.5 hour windows.  But it's better than nothing.  I may even schedule a haircut for sometime soon.
 Wild man was crazy excited about his first day. 
 Dad was out of town for our first two days of school.  So things didn't flow as smoothly as I would have loved.  But we have the rest of the year to figure these things out.  In other news, Nolan has turned Allyn's baby food into his toys.  The green tops (bad guys) fight the red/orange tops (good guys).  He told me that we needed to buy more baby food so he could use the ones we had as toys.  Seeing as it was $65 worth of pouches, I told him to share or pick another game.
 And just because she is such a doll.  Love this little angel to pieces!
 Here is A in cast #2.  This one is bigger and clearly more uncomfortable.  There are shoulder straps which make everything harder.  And it already stinks.  But we just pray for correction and comfort. 

Tuesday, August 27, 2013

My thoughts on Miley-gate

It was all I heard about yesterday.  On reputable news channels and on trashy gossip sites.  People at the gym were talking.  Everyone was outraged.

I did not see Miley Cyrus's VMA performance.  I do not plan on watching it.  I'm not going to link up to a picture. 

Mid-30's Shelley can look at 20-year old Miley Cyrus and tell her she is going to regret that decision.  I know she is a performer and that is her art.  And artists change.  I don't expect her to be Hannah Montana.  But I do know that, God willing and the creek don't rise, she will grow older.  She may one day have a husband and kids.  And those images and videos that no one will be talking about anymore will still be available for her kids to see.

In my 20's I may a lot of really bad decisions.  And when I say really bad, I mean bad for me.  They didn't harm others and they weren't illegal.  They were just taking me down a path toward a person that I wasn't meant to be.  I feel like that is where a lot of our youth are today.  And performers like Miley shouldn't be to blame for their bad behavior. 

As a grown woman I need to be able to step up and say what Miley did was gross.  As a singer, let's focus a little more on the vocals and a little less on the outfit and grinding.  Because once you start getting attention, you want more and you'll go to great lengths to achieve it. 

And it is hard to course correct.  I still have days (weeks...months :-)) where I make some poor choices.  I get caught up in the drama and the attention.  But thank goodness I have a decade and then some on my 20-year old self.  And in spite of the head full of gray hairs, I like my less scandalous self much better. 

Monday, June 17, 2013

Delta Water

Greenville, Mississippi is a unique place.  It's where I grew up.  A place I left; a place I escaped.  There's no where on earth you will see plants grow faster or greener, or eat better food, or see a greater separation of classes.  It's rich and poor at opposite ends of the spectrum.  But as I went back this past weekend, the one thing that stuck with me was the water. 

Greenville has brown water.  They say it's from cypress swamps it passes through in the aquifer.  Also, it is the softest water.  Soap lathers like no other and it seems there is nothing you can do to get it off.  Being away, you forget these things.  And yet, in coming home, you remember them as clear as yesterday. 

I went back for my Mema's funeral.  A day I thought was years away.  My grandmother was a healthy 81 years old.  She did more than a lot of my friends.  And I guess when your parents or grandparents get older you just think they will deteriorate until a point and then they will just pass away.  And you'll have time to prepare.  Time to say your goodbyes. 

I didn't get a goodbye. 

She had made a trip to see my aunt, Linda, for a couple of weeks.  She had been there when Allyn had her surgery.  Ben had spoken to her after the procedure because she wanted to check on her and thought I would just say everything was fine.  We had planned on her making a trip up to see us sometime this summer.  I called her the following weekend and didn't get an answer.  I decided I would just call her when she got back to Greenville.  She never made it home.  Last weekend she started feeling ill.  She came down with something suddenly, got really sick and then got an infection that ultimately shut down all of her organs.  Her passing was quick, and I hope without too much pain. 

We buried her on Saturday.  I was sad, but ultimately also at peace.  Mema had an amazing life.  Her presence was positive and calming.  And she was a caretaker.  So God's plan for her was the best.  She never had to have someone care for her and she never was forced to stop doing the things she loved.  She LIVED up until almost the very last moment that she didn't.  And for that I am grateful. 

Sunday, June 9, 2013

Because she's the cutest little thing

that you ever did see.

If you know, it's been a busy month (well, 6 weeks) at the Scarbrough house.  We went to the beach, Nolan wrapped his first year of preschool and last week we took Allyn to Chicago for her first casting.  I'll elaborate more on how we are adjusting to the whole thing later.  But we are all good.  Great even.  So, onto the casting.

We arrived in Chicago last Monday. We drove to Tulsa for our flight because flights out of XNA are ridiculous.  Nolan stayed in town with Mimi (and later told me when we got home that he likes Mimi more than me).  We ate yummy food because finding yummy food in Chicago is super easy.  And then that night Allyn got her last bath.

 We got up early Tuesday morning and headed to Chicago Shriner's hospital.  We were the first casting of the morning.  We had to be at the hospital at 6 am.  And Allyn got to last eat around 2:30 am.  She was a little cranky. 
 We went through all of the pre-op questions and then went to the pre-op holding room where she was put in this t-shirt.  She is so tiny the small swallowed her up.  But the extra small wouldn't fit over the melon, so we just had to deal with the extra fabric on the small.  From this room the anethesiologist carried her back to surgery.  She cried when they took her away, but she cries any time I leave her anywhere...and sometimes when Ben takes her out of my arms.  She loves her mama.  I guess they finally took her into "surgery" around 8:30. 
 They put her in her cast, gave her clear liquids (I think.  Girl has also never successfully taken a bottle or sippy cup), trimmed her cast up and brought her back just before 11 am.  She was HUNGRY.  And to say I was ready for her to eat was an understatement. 
 Sweet thing nursed for at least 45 minutes.  I'm sure a lot of that had to to with the fact she was thrilled to be back in my arms.  When she was done, our nurse Gwen was trying oh so gingerly to get the iv out of her arm.  Sweet thing just ripped it out.  She's a tough one.  And here's my little pickle in all of her cast glory.  And she really is the cutest little thing that I ever laid my eyes on.

Wednesday, May 8, 2013

Well Baby

On Tuesday we had the well child and well baby visits for Nolan and Allyn.  I feel so accomplished getting them both scheduled in the same day.  Some days my mind is on all 8 cylinders other days it's straight up out of gas.  Clearly the day I scheduled appointments was an 8 cylinder day. 

Allyn at 9 Months:

Weighs 14 lbs 3 oz.
Is 26 inches long/tall.
Has a head circumference of 18 inches.
Is finally eating baby food, but only the pricey pouch stuff from Plum Organics and Ella's Kitchen including Just Peaches, Peaches and Banana, Banana and Apricot, Spinach Peas and Pear.  You also eat Earth's Best bananas and sweet potato.  You spit out all of the baby food I have made for you.
Has Early Onset Scoliosis and a curve last measured around 50 degrees and significant rotation.
Still no teeth.
Nurses pretty much every three hours.
Still not mobile.
Says mama and does a lot of growling.
Looks a little like mommy - your eyes and hair, and a little like daddy - your face shape, ears, mouth and nose.
Has the prettiest eyes that are blue with little hazel patches.
Wears size 3-6 month clothing
Wears a size 2 diaper. 

Nolan at 4 years:
 
Weighs 48 lbs.
Is 44 inches tall.
Favorite foods are hot dogs, peanut butter and jelly sandwiches, pizza, peanut butter cups, ice cream, little oranges (mandarin oranges).
Looks like daddy - eyes and hair and mommy - head shape, ears and nose.
Loves Star Wars, Legos, Transformers and Chuck E. Cheese.
Asks daily when are we going to see Mema (my grandmother).
Still has blue eyes and blond hair.
Wears a size 4 short, size 6 pant and size 5 shirt.
Wears a size 12W shoe.
 
I'm fairly certain these two couldn't be any more different.  And I'm positive I couldn't love them more. 
 
Images courtesy of Bethany Blair Photography.

Monday, April 29, 2013

Birthday Weekend

Nolan turned 4 this past weekend.  You hear it all of the time, but I really can't believe it has been four years.  We have his doctor's appointment next week...complete with shots.  So I have no clue on his size (ENORMOUS) and stats (off the curves, I'm sure).

Unrelated to Nolan's birthday.  Saturday night we has the Northwest Arkansas Children's Shelter Starlight Gala.  The Band Perry played and the food was not bad.  And I got to wear a dress that I have had for almost a decade.  Ben's sister, Emily,and Laurie were able to join us. 
 Friday night, Nolan was loving on Allyn.  And she was loving the attention.  I know these two will fight a lot in years (decades?) to come.  But I know they will also love each other like no one other too.
 Saturday's party was a Jump Zone.  We had a Transformer's cake.  Nolan will tell you he is not allowed to watch Transformers because it is too violent.  He is allowed to watch Transfomers Rescue Bots.  But we went big for the cake.  (It was one of the design packages available at Harp's).
 Sunday he got his big present.  The trampoline.  I'm hoping this will keep us semi-active and away from the television and computer and ipad and my phone, etc. 
 And after the long day, he was tuckered out and just wanted to sit in his Poppy's recliner and watch some shows. 
 
I love my little buddy so much.  And I'm so thrilled he had a great fourth birthday.

Monday, April 22, 2013

Beginning Our Early Onset Scoliosis Journey

At Allyn's four-month well baby visit we mentioned to her doctor that we noticed a hump on her back. We were told it was not uncommon as some weird things still have not worked their way out from the way a baby is positioned in utero and we would examine it again at her six-month visit. 

As the next two months went by, she started sitting and we noticed the hump looked worse.  I was fine with mentioning to her pediatrician at her visit and not scheduling an appointment just to look at her back. I figured it was some wonky muscle that had developed as her muscle tone developed. 

We went to the six month visit and the doctor made a diagnosis of infant scoliosis.  And he acted like this wasn't something he had seen a lot of.  (And our doctor has been practicing for a long time).  He was going to get together paperwork to send to Arkansas Children's Hospital so we could see an pediatric orthopedist there. 

The process was very slow.  The whole time we were waiting Ben and I began researching her condition.  It turns out that early onset scoliosis is pretty rare.  And most cases self resolve.  Well there you go. So we'll just go and see this doctor and we'll monitor the condition and ta-da.  ACH had us go for x-rays at the end of February.  When I saw the films I wanted to vomit.  I had no idea how bad her curve was.  Children's called us 10 days later and set up an appointment for just over a week out.

We met with Dr. McCarthy at ACH. He measured her curve at 50 degrees.  He outlined a plan for Allyn to be casted for six weeks, then she would be braced for as long as we could and then she would have spinal surgery for rods to be placed in her back.  And could we be back in just over a week to start the process? 
 
(Here is the little peanut before we saw the doctor.  A smock?  Like she would have been so embarrassed to be in just a diaper).  Ben and I were floored.  We were optimistic this would just be a wait and see.  We had no clue it was so serious.  He outlined what complications could occur if we did nothing.  And we were scared.  But based on his recommendations, I knew this wasn't our doctor.  Now, if you come across this and wonder if this doctor is right for you, he may be.  He is an expert on scoliosis.  But from what I gather, the more traditional kind in adolescents.  He never told us how many babies he had treated.  We asked about casting and he said it was cruel.  Additionally, his nurse provided us with the ISOP website.  After reading testimonials on the website where nearly every success story was casting we decided to get a second opinion since this doctor did not do casting.
 
We made an appointment to see Dr. Hammerberg at Chicago Shriner's.  Ben spoke with his nurse on the phone and email and it was clear this is what they do.  So in mid-April Allyn had her first plane ride.
 
 My little peanut on her first plane ride.  Overall, I she did well.  Ben was able to travel up with the two of us.  I had her by myself for the return.  And as always, ORD was a complete nightmare because of weather related travel delays. 
 We arrived late and had dinner at Lou Malnati's.  Back in our Naperville days, Ben and I would often opt for a Chicago deep dish and a pitcher at Lou's.  This time around it was a salad, thin crust and water. 

And after a long day, this one passed out on the bed like a champ.  She was tired and we had a big day the next day.
 
We met with Dr. Hammerberg and his staff the next morning at 9 am.  He said he has had around 85 infant cases with the earliest being around 2005.  They do Mehta casting in series to get the curve under 10 degrees and then brace.  Obviously there are sometimes departures from this treatment method but this is where we begin.  Ben and I felt good that THIS IS WHAT THEY DO.  They help babies like my sweet little angel. 
 
I know we have a super long road ahead of us.  I'm trying to focus on her healing and not the limitations we will have as a result of her being in a plaster cast for up to the next three years.  And through the process I have found peace.  I know most of that has to do with all of the people that are praying for Allyn and our family. 
 
We will be going back to Chicago in early June to have Allyn's first cast put on. 

Wednesday, April 3, 2013

Easter Weekend

I love a long weekend.  Especially one that involves a day off for Ben. Easter weekend this year was nice.  We crammed in a lot of activities into 3 days.

This week Nolan started t-ball practice.  I imagine Saturday mornings are going to be full of entertainment watching 4-year olds (and my 3 year old who made the cut-off age deadline by days) play ball.  I'm sure N will be the one to run to third base.
 Thursday afternoon, we had pictures with Bethany.  Well, the babes had pictures.  I had on a baseball t-shirt.  Maybe I should have dressed a little more nicely.  Every time I set Allyn down and walked away, she would stick out her bottom lip and cry with nice big tears.  Thankfully, Bethany is awesome and a total pro and got some good pictures. This was at home after pictures.
 


 Easter morning Nolan woke up (way too early) to find his Easter basket. This year the bunny got him a Transformers book and a Veggie Tales movie.  And Reese's peanut butter eggs!  He watched the movie while Ben and I got ready for church.
 Another first this weekend was fishing.  In a field behind our neighborhood there is a pond.  Ben and Nolan went and bought a tiny fishing pole and some crickets.  They didn't catch a thing but had a blast.
 Nolan and one of his favorite friends.  Parker had his birthday party at JumpZone.  These two are tight.  They match each other in terms of energy and size.  Jumping takes it out of you.  The only way to recover is with pizza.
 And the obligatory Easter morning shots.  {Fun Fact:  I also wore this dress last Easter.  It accomodates a baby belly and it is easy to nurse in.  And it's cute.}  I could just eat Nolan with a spoon!
 And I just love sweet Allyn in all of that cotton.  The dress she has on is a size 3m.  Yeah, she's itty bitty. 
 
I will begin to post some more info on Allyn's condition and update when we begin treatment.  One thing I have learned about early onset scoliosis is that most doctors, while familiar with the condition, aren't completely up to speed with treatments available.  A lot of progress has been made in the last 7 years in terms of giving these babies a chance at a life without limitations.