Mauli Ola Foundation

There is a big surf contest this weekend on our beach.  The charity sponsor for this event is the Mauli Ola Foundation.  Tricia and I first heard about Mauli Ola from our dear friend Emily Haager...you might remember me posting a few photos of us with Emily from a several years back whenever her family would vacation here from California.

We again heard about Mauli Ola today from another CF family (the Whiddons) who have become friends of ours recently...they told us that some of the surfers and MMA athletes who work with this organization were in town for the event this weekend.  We found out that they were going to be at one of our favorite local restaurants tonight, so we took the kids and met our friends for dinner.  The Whiddons introduced us to Kala Alexander and Nissen Osterneck.  They were both super nice...Kala remembered all of our names, and they both signed autographs for the kids and talked with Tricia a while about her CF.  We're hoping to hang out with them tomorrow during the contest, maybe even do a little surfing with them if the waves are up.

 Make sure you check out this video and see what Mauli Ola is doing for kids with CF!  And, see our friend Emily, who passed away a few years ago, around the 1:27 mark.

Activation Successful!

Just a quick not to tell you that Gwyneth's cochlear implant activation was successful!  It will take some time for her to get used to this new device on her head, and probably a few months if not more before we begin to see her speech improve because of her new hearing.  We'll return a few times over the next several months to have the audiologists adjust the settings until they get it exactly right for her needs.

If you want to learn more about the exact implant system Gwyneth has, you can read about the Cochlear Nucleus System here.

Gwyneth's last photo pre-activation!

Gwyneth's new hearing!

Gwyneth's new friend, a koala with implants just like hers!

Highlight of our trip...Gwyneth bumped into a North Carolina hero in the lobby at Duke...do you know who this is?

Nate

Cochlear Implant Activation Tomorrow!

We are so excited about Gwyneth's activation tomorrow!  We have no idea how she will react...she has enough hearing in her left ear that we don't expect it to be too dramatic.  We know that kids her age often have a difficult time adjusting, and considering she has had almost no hearing in her right ear for at least a few years, we are anticipating she might not be too happy with it at first.

We'll let you know how it goes!

Nate

Cochlear Implant Surgery Report

Warning...a photo with blood below...

Gwyneth's surgery went very well.  Took about 3 hours, and before they woke her up, they tested the device and took an x-ray to make sure it was positioned and working correctly.  It was an outpatient surgery, so we were at our hotel no more than two hours after the surgery ended.

Gwyneth always wakes up from anesthesia very grumpy (we've been told some people react this way).  She remained grumpy until she fell to sleep late that night.  She was feeling a little better on Friday morning.

Tricia spent Friday morning at Duke beginning the transplant evaluation process.  And, we were back home by 3:30 that day.  By bedtime last night, we had weened Gwyneth off the heavy pain meds and she was showing signs of "normalcy".  This morning, Gwyneth woke up feeling much better, and we were able to take her bandage off.  By bedtime tonight, she was full of energy and laughter...amazing how quickly she recovers.

We return next week for a post-op appointment to make sure everything is healing well.  In 3-4 weeks, we return again to activate the cochlear implant and run some tests to get it set up to best help her.  We are very excited!  Thank you for your prayers!

Nate

In Surgery

Nate

Cochlear Implant Surgery

After about a year of research and discussion and prayer, we have decided to move forward with a cochlear implant surgery for Gwyneth.  While she only has moderate hearing loss in her left ear, she has all but complete hearing loss in her right ear.  Because of her hearing loss, her speech is very delayed, and only those who spend a great deal of time with her are able to understand more than a few of her words.

Gwyneth will receive an implant only in her right ear and will continue to use her hearing aid in her left ear.  The surgery is schedule for tomorrow, July 19, and about a month later we will return to the hospital to have the implant "activated".



Nate

Fundraiser

Some amazing friends approached me last week to inform me that they have organized a fundraiser to help with Tricia's medical bills. Such amazing friends we have!  The information is below in case you would like to attend. You can also find out more by checking the Facebook Event Page.

Nate

Re-Transplant

We got word a few weeks ago that Tricia's medical team is moving forward with a plan to get Tricia back on the transplant list for a second double lung transplant.  We are waiting for the word from her team to know what the timeline is, so we really don't have much to tell you other than that.  We are still praying that the CAMPATH will work and reverse this rejection, and would appreciate your continued prayers about this as well.

Nate

July 13 Update

Nothing much new to share with you.  Tricia is feeling about the same, about every other day is a "good" or "bad" day.  On the good days, she is able to get out of the house and spend some time with friends and family, on the bad days she spends a lot of time in bed.  Our friends and family have been a huge help, spending time with the kids so I can keep as "normal" a work schedule as possible, providing meals and just spending time with Tricia.

We are blessed.

Nate

Bad Report

We were back at Duke yesterday, and the report was not good.  If the CAMPATH is working, her Pulmonary Function Tests should be showing improvement and her weight should be stabilized if not increasing.  But, her PFTs and weight have both dropped since our last visit a few weeks ago.  In addition, she has developed a sinus infection, which will be incredibly dangerous if it is not dealt with quickly.

Tricia needs things to turn around very soon and very quickly.

Nate