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.  

Monday, April 1, 2013

Allyn - The first days home

Adjusting to life with Allyn was so much easier than bringing home Nolan.  Was I a better parent?  Ha.  Maybe I knew what to expect.  Everyone had said how two was more than double the work of one.  I disagree.  Nolan cried all of the time and we never left the house.  Ever.  We quickly settled into being a new family of four.  I had a couple of weeks at home with both babies and then in mid-August Nolan began 3-year old preschool.

So, some pictures from the early days.  Here she is just out of the womb.  A perfect 7 lbs, 14 oz.  And look, she has my hands and feet.
 After they brought her back from being cleaned off. 
 All bundled.
 Super hero Nolan was not impressed with his new sister.
 Smooshy baby cheeks.
 Just brought her home from the hospital.  Don't think she's had a pacifier since.
 Pretty baby.
 She was 10 days old and we took Nolan on a fire station outing.