Quincy Bound

The shunt adjustment and all of the good wishes from Team Carly are doing the trick and Carly is doing much better than just two days ago. She slept well through the night and has treated us to a few smiles which we read as “take me to the festival!”  As always, thanks for keeping Carly in your thoughts and prayers, her strength and the effect of all of you lifting her up never fails to amaze me.

Love,  Brad

We Need A Festival Miracle

The fourth of July is quickly approaching and we have been cautiously anticipating a trip to the High Sierra Music festival for many months.  Spending the 4th weekend at High Sierra, dancing away the day and night in the foothills of the Sierra Nevada Mountains has been a tradition of ours for over 12 years with Carly attending her first festival when she was just 5 months old. We missed the festival last year when Carly wasn’t doing well, but after three good weeks in a row it was looking like it was going to happen for us all this year.

Unfortunately, as we know too well, life can take an unexpected turn at any moment and for Carly that turn was a few days ago.  Christa and I noticed that she seemed a little “off” and we were both a little concerned that her shunt was not functioning properly.  Last night and this morning she was particularly uncomfortable and we realized that Carly was clearly suffering from high intracranial pressure. There are two possibilities, either she is on the edge with her current shunt setting and simply needs a lower setting or the shunt is clogged once again. Fortunately changing the setting is a fast and painless process that takes about a minute, so the neurosurgery nurse practitioner made the change earlier today. At this point all we can do is wait and see if the change gives Carly the relief that she deserves, and if we get that answer by Wednesday morning we can head up to the festival as planned. Of course a festival is secondary to Carly’s well being, but some sunshine, mountain air, music and good friends would be a wonderful healing time for all three of us. Let’s hope this unexpected path makes a turn for the better soon.

Love, Brad

Smiles All Around

Carly has been doing very well the last two weeks which was a great way to head into father’s day weekend. Since her shunt was adjusted she has been much more comfortable and has been smiling more each day. We have been keeping a daily smile count and many of the days last week she topped 25 smiles in a day. Yesterday she hit a personal record of 51 smiles and every single one brightened our day. After going several months with no smiles at all this is a trend that we are thrilled to see.  As we ate brunch today, sitting in the sun drinking a french wine called “Whispering Angels”, I couldn’t help but think that these whispers were behind some of those smiles.

Love, Brad

Calmer Days

Carly’s weekend was definitely better than her Friday. Saturday morning she was finally comfortable enough to get in her stroller and walk around the neighborhood for a little while. This is usually one of her favorite things and it was a big relief to finally see her sleeping comfortably.  A bigger surprise came later in the day when we decided to try and take Carly to a bbq graduation party in Golden Gate Park. We weren’t even sure if Carly would be able to make it there let alone stay for more than 15 minutes, but in the end she rested peacefully for nearly two hours while we got to catch up with some of our closest friends. That was an amazing gift. She is still cycling in and out of discomfort and it is hard to tell what all of the issues are.  It will take several days before we will know if she is truly on her way to recovery, but any improvement is a relief. I know that the Team Carly boost must be helping, thanks.

Love, Brad

Puzzled

It has not been an easy week for Carly. She has continued to be very uncomfortable and restless, only sleeping well for two out of the last seven nights.  It is a tricky puzzle to figure out, which is saying a lot for the princess of tricky puzzles. One possibility is that she is having trouble adjusting to her lower cranial pressure now that her shunt is working. While the pressure may be appropriate, it could be that she became accustom to a higher pressure when she had a clogged shunt. After giving her a week to adjust without any success, neurosurgery adjusted the shunt up one setting to see if that can give her some relief. They are also running blood and urine tests to rule out an infection and preliminary results are looking clear. She could definitely use a little boost of strength from Team Carly as she makes her way past this most recent hurdle.  Thanks for keeping her in your thoughts.

Love, Brad