What a GREAT Day!

Callista's Second Annual Benefit was a huge success! We had a great turn out and raised an awesome amount of funds. We've got two walks/runs we will be doing soon so our team is set. Plus, don't forget to check out Socks 4 Surgery, Gracie's Gowns, and Team Iron Aiden on facebook, we will be supporting these organizations by sponsoring child gifts. We also will start the planning stages of home renovations for Callista. Since our home is two story, it's not conducive to her future wheelchair. An additional bathroom with a wheelchair accessible shower and sink as well as remodeling the room attached to the garage are in the works! Our goal is to make our home work for our daughter and to encourage her independence as much as possible. Anything she can do for herself is what we strive for!

I cannot thank our supporters enough for all of the hard work that went into making the benefit a success. Those who donated items, money, time, and prayers were an integral part of why this fundraiser worked out so well! Everyone who came said the food was delicious and they had a lot of fun. There were so many auction items and fantastic prizes to give away. We could not have asked for a better day. I hope to post pictures from our "photo booth" to her facebook group soon.

Thursday is a neurosurgery check up to make sure she is healing properly and to get cleared for therapy. There was a surprise call today from feeding clinic and they had a cancellation so we will be seeing them on Thursday also!

Shunt Revision

Callista had her shunt revision early Friday morning. Other than dragging everyone out of bed at 3:30 in the morning, things went smoothly. They took her back at exactly 8:00, and the surgery lasted around two hours. We expected it to be a little shorter than that, but the doctor decided to do a little maneuvering of her shunt tubing as well as replacing the shunt. He said her old shunt was "sluggish" and some fluid pressure did come up around it when he opened her up. Before, he was 50/50 that this would fix her syrinx and now he is 60/40. Not much of an increase, but we will roll with it! Dr. J said the CT scans looked good and the catheter is in the spot he wanted it to be. We go for a wound check in two weeks, and a follow up limited MRI in six weeks. In about 12 weeks, she will go for a sedated MRI again to see if the syrinx is getting any better. If it is, we continue to wait. If it is not, we discuss other options for surgical intervention.

Callie woke up nicely from this surgery (it's amazing what the right size tube does for her, huh?) and only needed tylenol to manage her pain. We spent the night on the neuro floor and were released around noon yesterday. She is pretty much back to her old self, laughing at everything and very alert. We just have to deal with the post anesthesia yuck. The poor kid's stomach can't take it! She has tummy trouble for three to five days after she gets put under, no matter how long the procedure is.

In good news, Callista's 2nd Annual Benefit has a date and place: Profit's Park on July 28th. The time is still undecided. We will begin collecting donations for door prizes and auction items now. I am so excited to be able to do another benefit and be able to give back to the spina bifida community that has been such an amazing support system!

Three Letters: UTI

What a bummer! Callista is admitted to the hospital with a UTI. She has been vomiting since her MRI April 2nd, but we attributed some of that to her adverse reaction to anesthesia. Then we changed her formula to something for older children around the same time. So the symptoms could have been due to many things. But apparently it was a UTI. I am quite a bit disappointed it got this far considering I brought it up to urology at our clinic the first week of April. I told them I had concerns about it and it was brushed off. When will they learn that moms know best?

As for now, we will be in the hospital at least until tomorrow, but maybe more depending on what kind of bacteria is causing her infection. This also sets back scheduling the shunt revision. I haven't heard from the team how long we have to wait now, but it's too dangerous to do a surgery when there is infection in the body. The last thing we need is a shunt infection to go along with it. We have several neurosurgeons on the same page now regarding how to proceed with the syrinx. A large pocket of fluid is in the center of her brian and the catheter is barely in the pocket. Hopefully once the shunt is fully functioning again, it will clear up all the extra fluid making its way down her spine.

I shared on Callie's facebook page as well, but wanted to post here too... We have joined the Amazon Affiliate program. To the right, there is a link to amazon. If you ever shop there, you can go through Callie's link and a percentage of your purchase will go into her medical account. It costs you nothing! Please consider using the link in your shopping endeavors :) We use these funds for equipment that insurance won't cover, as well as saving for braces, etc. since only one set gets covered in a certain time period.