Friday, July 18, 2014

Shunt mystery

Shelby's yearly check-up with the neurosurgeon at Duke Children's was yesterday. The best part about this visit was spending the night with my cousin Katy and her husband Pat in Durham the night before--Pat makes the best mojitos!

Anyway, Shelby's appointments started with a rapid MRI scan. Shelby has developed major doctor office/procedure anxiety since her surgery last summer (understandably) and she started screaming as soon as we walked in the door. One nurse had to lay on top of her and hold her down and still for the duration of the 5 minute scan. She screamed the whole time and the poor nurse had pinch marks on her arm from Shelby. I'm not sure who was more traumatized, Shelby or the nurse (or me)...

We left the MRI office and headed to the neurosurgery clinic to meet Shelby's new neurosurgeon and to get the results of her scan. I'll do my best to explain what Dr. Muh told us. Shelby's ventricles are more swollen than her post-surgery baseline scans last July. Dr. Muh says that this could mean one of two things. Either Shelby's ventricles shrank way down after her surgery last June and then continued to change and get to a new baseline after we did the follow-up MRI in July of 2013 or Shelby's shunt is failing. We've noticed now symptoms of a shunt failure, but there were no symptoms last summer either. We go back for another scan on August 15th to determine if she needs another shunt revision. If the shunt is failing, the MRI will show more swelling of the ventricles. Bleh! Such is life with a shunt, I guess....
Screaming and thrashing around and fighting nurses through an MRI is hard work. Shelby slept for an hour while we waited to meet with Dr. Muh. 

Saturday, July 12, 2014

Well Hello There....We're Still Here

It has been a long while since my last blog post. There have been peaks and valleys since then, and so much has happened. I've felt guilty about not documenting our life here on this little blog. My phone data was completely full of pictures, so I just transferred them to my computer. All these pictures confirm what I already know--I've missed a ton of blogging opportunities these past three months. I'll start with one of the most recent, our vacation to Lake Keowee. 

As a lot of you know, we are currently living halfway up the family mountain with John and Barbara while our house is being constructed at the top of the mountain. There is a ton of work to do on our land and Trip's days are consumed with work, then working on the land/house/driveway/home-site when he gets home and on the weekends. I help out when I can get childcare, but our very active 5-year-old daughter requires a lot of supervision, so my summer days have been pretty consumed with that. Needless to say, a week-long break from all the work was much needed (thanks so much John and Barbara)! 

 H and Landen enjoying a boatride

 Shelby could spend forever happily floating and splashing in the lake! 

 I rented a SUP board and Harding enjoyed it just as much as the paddlers did. 

 My sweet kiddos relaxing on the boat. 

One of the perks of spending a week together was hanging out with 4-month-old Avery. I could eat her up! 

Monday, March 17, 2014

Saying goodbye to our home: Shelby's Room

My favorite room in our house is Shelby's bedroom and I've been meaning to post about it for awhile. When we were staging our home, the Realtor told us to, "leave that room exactly as it is". It is really cute (my photos will not do it justice). But the reason I am so attached to Shelby's room has more to do with how I feel when I am in there with her and the amount of love that went into the items housed in there (both before and after Shelby was born). It is hard for me to put all this into words, but I want to remember her room, so I'm putting the pictures and sentimental descriptions here where they won't get lost or forgotten.

When Trip and I went to Lowe's to pick out the paint for this room (right after we found out we were having a baby girl), Trip told the person in the paint department that he wanted the "girly-est" green paint color they had for his daughter's nursery. My dad painted it for us (he painted Harding's nursery too).

My mom picked up the metal flowers hung at the entrance to Shelby's room at one of my favorite Asheville stores, The Screen Door. Check it out at

I picked out the airy, white curtains with wispy flowers all over them and they became the basis for room decor: flowers and butterflies. We started with Harding's old crib in here (bought second-hand from a family friend) that had white sheets with butterflies and flowers.  

It's hard to see, but my dad made the little doll bed beside Shelby's bed and gave it to her this Christmas. 

My father-in-law John made this dollhouse bookcase for Shelby and gave it to us the week before she was born. I absolutely love it. 

Trip's Grandpa Kinnaird mailed Shelby the Vermont Teddy Bear on the bookcase after she was born. Trip's grandmother Helen had bought Harding a Vermont Teddy Bear when he was a baby. Helen died before Shelby was born, but it meant a lot to me that John, Sr. carried on the tradition. 

My mom made the quilt on Shelby's toddler bed. The colors are perfect. Luckily this is a full size quilt, so when Shelby gets a "bigger girl bed" at the new house, this cheerful quilt will fit. 

Shelby's "lovie" is draped on the rail of her toddler bed and I ordered it when I was pregnant. It is so soft and it is one of several items that Shelby wants for comfort when she is upset or at bedtime. 

My friend Julie gave her "Crinkle Baby" this past Christmas and it is now her favorite baby. Crinkle baby has to be with Shelby every bedtime now. The baby on the right is named "Baby" and I bought it for Shelby on her first birthday. She used to be Shelby's favorite, but Crinkle is the winner of her affections these days. 

The strange looking silver bear on the glider is "Nightmare Bear". My father-in-law, John sewed Nightmare Bear himself out of silver fabric that my mom bought. Silver shiny colors were one of the first colors that we realized Shelby could see after we found out that she had a cortical visual impairment. It was so sweet of John to make this bear, but he did come out a little scary looking with the black stitching (hence the name). We have had a good time making fun of poor Nightmare Bear, but it is so sweet. My parents and Trip's parents poured so much love into helping and supporting us and Shelby after her many diagnoses and Nightmare Bear is a perfect representation of that love. 

On Shelby's side table beside the glider is a picture that my mom took of our little family of four when Harding met Shelby for the first time. She brought this framed picture to us when Shelby was transferred to the NICU to decorate and personalize her little crib area and it brought me a lot of comfort at the time.

And speaking of that glider--it is old, dirty, broken and wobbly with a missing arm, AND I love it. This is where I nursed both of my babies at night. This is where countless prayers have been whispered over my sleeping children. This is one of the only places that I felt like everything was going to be okay during Shelby's first year when we faced a lot of scary stuff. This is where we STILL rock Shelby every single night before laying her down. 

At the foot of Shelby's bed is her "Julie Blanket" that Julie made for her on her first birthday. So much thought went into this blanket. It is soft and nubby on one side and bright and colorful on the other. There is fringe on the edge that Shelby loves to touch. She does not go to sleep without her blanket covering her up and this is the first thing she asks for if she's upset.

Hanging above the bookshelf is this picture that my friend Melanie ordered for Shelby. An artist in Savannah, Georgia paints these and it makes me smile every time I look at it. 

My grandmother Penny wrote a happy poem for Shelby on her 3rd birthday and it is framed and on her dresser. 

My grandmother Burney bought Shelby the little toothfairy doll hanging from her dresser. She found these dolls on sale at the shop at her retirement home and bought them for each of her great-grandbabies. This was probably one of the last gifts she picked out for the kids on her own. 

So many memories are in this room. Luckily, all of the above items will be traveling with us to the new house, but it does feel like the end of an era to be leaving this sweet room that I love so much (and that Shelby has always slept so well in). 

Sunday, March 2, 2014

Friday pictures and house news

Before I talk about the house stuff, here are some pictures of Harding and Shelby from our weekly Mexican dinner out on Friday night. Shelby had the giggles and they were contagious for the whole family:

Also, the big news is that our house is under contract and we are scheduled to close on April 2nd. Fingers crossed that everything goes smoothly... We'll be bunking with Trip's parents at their house on the land (it is a bit of a family compound) so that we can supervise the construction of our house, which should begin soon. This is so exciting and we've wanted it for a long time....but we've got a ton of things to do in the next month or so. Never a dull moment around here.