Four Marshmallows: On the Move!

Tuesday, September 2

It's official....summer is over. I'm back at work and all of our summer adventures are over. August flew by as we squeezed in as much as we could! A couple mini-vacations, a family visit, swimming, and more doctor's appointments kept us very busy.

Patient Devyn

Devyn has plenty of successes to share! First of all, she survived her first hospital visit (since our NICU days). She had a very minor surgical procedure done, and was in and out in just a few hours. She was so brave... not even a tear as I handed her off to the nurse. And much more exciting news....she is officially WALKING! She had been taking a few steps here and there for a few weeks, but on Friday she decided to take a stroll from the living room to the kitchen all by herself.

She still wears braces at night to straighten her legs and feet, which means that we still don't get to enjoy a night of peaceful sleep. Most people look at her and don't understand why she still wears them, as her feet look totally normal. Mostly it's just to make sure that her feet continue to grow straight instead of turning back in. Some children have to continue to wear braces until the age of 3. I pray she won't be wearing them that long!

Kinley's first haircut (the before picture)

Kinley's most exciting news was her first trip to the hair salon! We found a fantastic stylist who specializes in kids. What a fun place! Kinley got to sit in a race car and watch cartoons the whole time.

Watching TV....one of her favorite hobbies!

The only time she fussed was when she couldn't see the TV.

All done! We can see her beautiful eyes again!

Kinley had an MRI done back in June to check on the status of her brain. While she was still in the NICU we learned that she had two very small bleeds on either side of her brain. Additionally, she developed PVL on the right side of her brain. Her neurologist says to think of it as a small scar caused by the trauma of premature birth. Her brain bleeds are now gone, having been reabsorbed, and have no lasting effect. The PVL, however, is irreversible. We were already aware of the effects the PVL is having on her. She has difficulty with the left side of her body, which has led to delayed development, specifically with gross motor skills (rolling, crawling, sitting, etc.).

At her neurology appointment to review her recent MRI, we learned that the PVL had grown slightly since her initial scan. Her neurologist said that she has no reason to believe it will continue to expand, but we cannot be certain. As there is no way to treat PVL, we instead treat the side effects. Kinley sees a physical therapist at least twice a week, and is now seeing an occupational therapist twice a month. These therapists work on teaching her body what it can and should do, as opposed to what her brain is telling it to do. We attend all of her appointments with her so that we can do the exercises with her at home as well.

The neurologist reported that the PVL should not affect her intellectual ability, which was the best news of the appointment. We have to be incredibly thankful for this and pray that it holds true, but it is very difficult to accept that she will probably face physical challenges for a long time, and possibly for life. Children with PVL also have an increased chance of developing cerebral palsy.

Even with difficult news, we know we have much to be thankful for. When I remember the fear we felt the morning they were born, I know many far worse scenarios crossed my mind.

On a more positive note, Kinley continues to make great progress in therapy. She rolls all over the place and can sit upright for short amounts of time if you help her get positioned. And although she greatly prefers her right hand, she will use her left without being forced. The simple fact that she is making progress is a good indicator for continued success.

Our first trip to the river!

Dad had to make a trip to Laughlin to meet a client, so we turned it into a mini-getaway for the family. Our hotel had a beach right on the river, so the girls got to experience the Colorado River. It was a short trip to the beach because the water was so cold. The girls decided quickly that they liked the pool better!

Auntie Kim came back for another visit too! And what else do you do in the Las Vegas heat? Swim of course!

Kinley (above) Devyn (below)

And for one more final adventure before school began, we took a trip to Big Bear, CA with the Hinton family. It was supposed to be fishing/camping trip...but after some input from me, it turned into a 3-bedroom cabin/shopping trip! Oh yeah, they fished a little too!