Summer Fun

I have been neglecting the blog for too long, but the good news is that we have been busy with fun things and Carly has been doing well this last month.  After  making it through another extended recovery period from her shunt surgery in July, Carly has been making great strides. She was able to travel to Douglas lake in Northern Michigan where we spent almost two weeks relaxing on the lake. Carly got to visit with all of her midwest family including her grandparents (Tutu and Papa), aunts, uncles, cousins of all ages, great aunts and uncles and close friends that have been like family to me since I was a kid.  It was a welcome trip for all of the family.

Carly is smiling and laughing more than ever, lighting up with the cutest smiles you have ever seen whenever we sing to her or give her kisses on her cheeks and chin. She is also eating a LOT more than she has in the last year.  She will now eat a jar of food in one sitting that would have taken her over a day just a month ago.  She is starting to learn how to drink from a cup, with thick liquids like a fruit smoothie coming first and thinner fluids like milk and juice as the next step. All of this new found hunger means the growth hormone is starting to kick in, and Carly has shot up over 1.5 inches in the last month. Her doctors and therapists have been encouraged by how she is looking lately, and we hope to keep this momentum up!

Love, Brad

Recovery

Carly was discharged from the hospital yesterday afternoon and we were able to spend last night at home. It’s always a relief to walk out of the hospital and head down Parnassus St. towards our house, but we also knew that Carly had some recovery work ahead of her. The recovery from the last shunt surgery took her over a week and we were hoping that this round would be a bit easier on her.  Last night and this morning were not great and she wasn’t able to rest, but fortunately she started to settle down this afternoon and she finally took a long nap. We’re hopeful that this trend will continue and we will all catch up on some sleep tonight.

Love, Brad

A Perfect Ten

Carly's surgery took three and a half hours, and after a few hours in recovery we are back in our room on the 6th floor. The surgery went well and Dr. Auguste replaced the shunt valve and the catheter that runs into her belly. He said that the old catheter was clearly clogged and once it was replaced the shunt flowed well and relieved the pressure on her brain. The recovery from Carly's last shunt was a bit rocky for her, so now we are just hoping that the next few days are uneventful and if all goes well we will be on our way home tomorrow.

Love, Brad

Good Times, Bad Times

Over the last week or so Carly has started to show the high pressure signs that we are all too familiar with. We have been fairly certain these signs meant that her shunt was starting to clog again and now another shunt revision surgery in on the way.  The operating room schedule has been very busy this week, with no available times for Carly, so she will be admitted to the hospital tomorrow so that the surgery can be scheduled for Saturday.

There is some good news too. Last week Carly had her quarterly MRI to monitor her ventricle size and ensure that she remains tumor free.  Although the ventricles did look a bit bigger (verifying that the shunt was not functioning properly) the MRI also indicated that Carly remains tumor free. We got another good piece of news regarding the protein content in Carly’s CSF. Over the last few months this level has been very high, nearly 30 times the normal level. Dr. Gupta told us that when this level is so high they typically see a lot of shunt clogging issues as the protein causes buildup in the shunt catheter. When neurosurgery was investigating Carly’s shunt function this week, they tested this level again and it has dropped by ⅔.  It is still 10 times the normal level, but the downward trend hopefully means that soon she will not have to deal with frequently clogging shunts. We are hopeful that shunt number ten will be around for a long time.

Love, Brad

Having A Good Time!

Carly did better then we could have imagined at the High Sierra Music Festival last Thursday through Monday. She was all smiles within minutes of our arrival and she continued to smile throughout the weekend. The RV that we rented was perfect, allowing Carly to sleep well each night and giving her some escape from the warm days. Getting to spend time with so many of our friends, dancing the days and nights away, was all that Christa and I had hoped it would be. Carly is definitely a music lover and I am sure she is already counting the days until her next festival. I know we are!

Love, Brad

More festival pictures can be found here.

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