School Time

Carly reached a new milestone this week, as she started pre-school on Monday. Over the past few months we have been working on getting her placed at one of the special eduction pre-school programs in San Francisco and a few weeks back we learned that she would be placed at Grattan which is just a short 5 block walk from our house. She was outfitted with a wheelchair and will have a lot of special devices at the school to help her stay involved with the other kids in the class. Her class is all special needs kids, and the school also has typical kids, and we are hoping the extra stimulation from all of the kids will help Carly begin to stay awake longer and accelerate her development.

One little boy has already taken a liking to her, and he pushes her out to the playground and even gave her a little peck on the cheek on Tuesday. Carly will need to have her own teacher assistant assigned to her and this will be provided by the state. While they are working on hiring someone for that position, Christa is filling that role and stays with Carly for the four hour school day. They expect to have someone hired in the next few weeks and then Christa will be able to have a little time to herself during the school day.

Carly’s seizures remain under control since we started the most recent medication and she hasn't had a seizure since January 10. After over four months of seizures it is a great blessing that she isn’t needing to go through that now. Once she completed the taper off of the last seizure medication she has started to be more awake and is eating better. There does seem to be something that is bothering her that looks a little bit like a failing shunt at times, but we really have no idea what the problem might be. At this point we are taking a wait and see approach, and hopefully over the coming weeks these symptoms will start to fade. I will be sure to keep the school pictures coming.

Love, Brad

(I wrote this last night, but didn't get around to posting it. During the night Carly's symptoms that look like a failing shunt got more severe so we are pretty certain that she will need to have that replaced in the next few days.  I will keep you all posted.)

Always Remembered

Incredibly another year has passed and it is January the 27th again.  It is a day that will always have meaning to us, no matter how we wish it didn't.  Three years ago we lost one of our closest friends, Tyler Palmer, to a tragic ski accident. He meant so much to so many, it is still hard to believe that he is not with us. Tyler introduced me to my wife Christa over thirteen years ago and for that I am forever grateful.  While we will always mourn his loss, we also see this as a day to reflect and check to see if we are living life to the fullest as Tyler did. He would often ask people what they would most like to do with their lives, and after listening to their answer he would then say “Ok, why aren’t you doing that and what is the first step to getting there.” I think we can all live more fulfilling lives if we follow Tyler’s advice. So today, in honor of him go enjoy the outdoors, make a conscious effort to do something that helps our planet, give someone a big heartfelt hug, and take a step toward following your dreams. We love you Tyler.

Love, Brad, Christa & Carly

Happy Birthday Carly!

It is hard to believe that our little girl is three years old today. She is getting bigger each day and her cute little curls continue to grow. (And as you can see, she got some new boots for her birthday.) She has been doing pretty well recently, continuing to eat well and drink from a bottle like an old pro. Her seizures were not changing with her last medication so we started another late last week. So far it seems to be helping as she had her first seizure free day since September over the weekend. Although she has had a few since then, they have been shorter and less intense. Carly has been really tired this week, sleeping for the majority of the day and having some trouble staying awake to eat. This could be adjusting to the new medications and she is also fighting off a cold, so we will be keeping an eye on that and hoping that she starts to feel more energetic in the coming days. I am thankful everyday for the medical team and the support from Team Carly that has helped her to get to where she is, and will continue to help lift her up on her road to recovery.

Love, Brad

Cheers

Carly has made some big strides in the last few weeks, and she still continues to have some challenges.  The good news starts with her shunt, which continues to work as it should. It is a relief to have it last longer than the last few, and hopefully it keeps it up. The other great news is that Carly has finally learned how to drink from a bottle and she was officially weened from nursing yesterday.  Until recently the only way Carly could take in any fluid was from nursing. We tried every bottle and sippy cup that we could find but never found anything that Carly would accept.  Everything came together about six weeks ago when Christa finally found the right bottle and method, and Carly was finally ready to make the big step. This is a giant step for Carly, and it makes it possible for others (including me) to help manage Carly’s fluid intake. It is something that we are very thankful for.

The biggest challenge right now continues to be seizures.  Carly started on a seizure medication about four weeks ago and we have slowly increased the dose. Her seizures did drop from six a day to two a day, but now she is sticking around 2-3 a day and the medication seems to make Carly more sleepy and agitated at this dose.  We will see how things go over the next few days, but it is looking like we will need to move onto another medication. The other issue that Carly is dealing with is a round of pneumonia.  It is not serious and definitely much less concerning than the seizures, but she is pretty congested and had several nights when she had trouble sleeping.  It seems to be clearing up now, and in the grand scheme of things it is a minor issue. One thing is for sure, she is a very strong little girl.

Love, Brad

Mino'aka

Carly's newest shunt appears to be working, but her seizures continue to stick around. During the last few weeks we have made a few changes to the flow settings on her shunt (a simple and painless 30 second procedure) in the hope that it would help alleviate the seizures but we have not found a fix yet. We decided that a trip to Hawaii might be just the trick to help her, or at the very least help us recharge, so on November the 5th we headed to the Big Island for 10 days of fun in the sun.

Carly enjoyed her relaxing days on the beach, and she definitely liked eating fresh bananas (picked from our own tree,) pineapple and papaya.  We got home late last night after a great trip but the seizures are sticking around, occuring 5-6 times a day now. We are following up with neurosurgery and neurology at UCSF as well as some second opinions in hopes of finding a way to help Carly past this hurdle. We'll keep praying for, and envisioning, an end to these episodes and peaceful days ahead for Carly.

Love, Brad

Lucky Number Twelve

Carly had her fastest shunt surgery yet. Dr. Gupta found a clog in the ventricular catheter, but the rest of the shunt was working normally. This meant that she was able to avoid a belly incision this time, which is often the most tender area. She has eaten well since the surgery, and although she is a bit uncomfortable it is looking like she may be able to settle down for some sleep. We will be heading home tomorrow and will be hoping that things keep flowing through number twelve. Thanks for all of your love and support.

Love, Brad

Made To Last

Carly is heading back to the OR tomorrow for shunt number twelve.  Her surgery is scheduled to begin around 2pm, and we will be spending the night up at UCSF after her procedure. If there are no complications we should be able to go home Thursday, and hopefully lucky #12 lasts longer than the rest.

Love, Brad

Searching For The Right Shunt

Carly’s recovery from her last surgery went very well and she was back to her smiling self pretty quickly.  This good run was pretty short lived though, as the same symptoms that we saw before the shunt revision started to come back just over a week after the surgery. Her seizures have returned and she has moments each day where we can just tell that she isn’t feeling well, with the likely cause being high intra-cranial pressure. Fortunately she still has many good moments each day, but it is looking like shunt number eleven is not working as well as it needs too.  Neurosurgery has adjusted the shunt to flow more easily, but so far that has not seemed to have any noticeable effect.  They have also tapped the shunt to see if an infection could be causing the clogging.  All of the early results from the cultures do not show an infection which is good.  There is one possible infection type that takes many days to show up in a culture so we have to wait until tomorrow to know if that type can be ruled out.  If the cultures look good, and her symptoms continue, she will most likely have another shunt revision surgery early next week.  Neurosurgery told us that they sometimes have cases like Carly where it takes numerous shunt revision surgeries to deal with clogging issues, but they assured us that eventually the shunts start to last. Hopefully Carly is near that point. You can help by visualizing her brain in a perfect state, with no problems from pressure.

Love, Brad