We have hit a great milestone today, with it being exactly 4 weeks since Carly got shunt #28. Given the one to two weeks between revisions pattern that she had been in, getting to 4 weeks is a great turn in the right direction. For the first few weeks since the revision Carly was doing really well, with a three day run that was the best we have seen in many months. Over the last two weeks she has had more ups and downs with an increase in seizures and periods in the day where she is clearly not feeling well. It is difficult to know if this is a sign of the shunt starting to malfunction, or if it is in any way related to the amount of times that we pump the shunt each day to force some flow through it. We continually try to monitor how Carly looks and adjust the amount and frequency of the pumping. If she doesn’t show any big improvements this week we will probably have neurosurgery tap the shunt to help us figure things out.
If Carly is doing well we plan to take her, and Kempton, on a road trip starting in Miami and traveling along the gulf coast. When Carly was born we took her on a welcome tour of the southwest United States so it felt fitting to have a welcome tour for Kempton in the southeast. We have flights booked for Tuesday the 13th, and we are hoping that we feel comfortable enough with the shunt situation to travel that far from home. We will keep you posted and will send updates and photos from the road when the road trip gets underway.
The other great news is that Carly’s most recent MRI did not show any signs of tumor. The recurrent tumor that was treated with gamma knife radiation in June is now undetectable. Carly will continue to have an MRI every three months for monitoring, but things are looking great now. Thanks for the love and support as Carly moves forward on her road to recovery.
Love, Brad
7 comments:
What great news on all fronts! I check in pretty regularly and was so happy to see this post. I'll send positive thoughts your way for an uneventful Gulf Coast vacation. I'm sure it will be a good, healing time for all.
This is my favorite post! Sounds like things are finally heading in the way we've all envisioned. Thanks, Brad, for giving us a clear idea of what to hope for and expect. The road trip sounds awesome and sounds like great timing since things are going so well. Have a blast and post photos!
Much love to you all!
Look at that curly hair! Thank you for the wonderful update.
Greg and Gail
Great news!
I have some thoughts on high-impulse pumping, now that I've been enjoying a nice cold and the associated congestion for the last week or so...
Hopefully the trip comes together!
yay, I'm glad to hear some good news! Have fun on the southeast welcome tour. Love you!
wonderful news on the tumor and on hitting a milestone. hopefully, sweet Carly is feeling better and you all get to have a wonderful trip. LOVE the haircut pic, too! Sending you all lots of love and good thoughts!
It was good to hear that his shunt lasted twice as long...perfect timing for your "Welcome Journey" for Kempton. We wish you safe travels and patient passengers.I think you are very brave.
Carly's haircut is adorable!
Love from Ann Arbor
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