Saying Good bye to 2011.

Today is a day for reflecting on the year that has passed. The Good and the bad the ups and the downs. February of 2011 we were told they didn't know if Katana would ever have her memory, Speech, or developmental abilities back to where they were a just a few months earlier. We fought long and hard to find someone who believed in us. We stood up to doctors who told us we were imagining things. We are thankful for the one doctor that has stood with us this last year. Dr. El Nabbout has been a blessing from God. He has stood beside us and helped us find the best neurosurgeon for Katana. He watched me cry when her bad days over took good days. Some how we pushed through the worst of times. Now almost a full year from where we started and we finally have answers. Maybe not the answers we had hoped but answers none the less. So heading into 2012 I am ready for this to be a year of struggles on the road to healing. Finally at least heading in the right direction. I can't say I am prepared for the days that lay ahead as this will be the first time anything has been done with Katana's shunt, but I know God will there beside us on this road. We have been told to prepare for a long road of getting the shunt dialed in correctly for her, but if it makes her feel better in the end then it will all be worth it. I don't know how I would have gotten through the last few months with the love and support of other hydro families. Thank you to all of those who has offered us love and support this last year.

Christmas time...

First of all Merry Christmas from our family to yours. This year has been stressful, scary, and blessed in so many ways.We went from knowing something was wrong with Katana but no one would listen, to preparing for her to have surgery in the next few months. We finally feel as though we have an amazing team of doctors all fighting for the same thing, Katana's well being. This year we will celebrate Christmas with peace of mind that the Lord has set everything in motion for us. We have big dreams heading into this next year. A year of less pain for Katana. January 3rd we get the ball rolling on all the stuff that needs done before surgery. I hope everyone has a Merry Christmas and a Happy New Year.

Delaying Surgery.

I know that delaying surgery sounds crazy to most parents of children with Hydrocephalus. It is a rare occurrence where a child with a shunt that needs surgery can be delayed. But we honestly feel this is the best avenue for Katana. Katana was diagnosed with a Chiari malformation in 2008, this simply means that Katana's skull is not shaped correctly to accommodate her brain, it can result in some of the things we have been seeing with Katana the last two years. Even though her Neurosurgeon doesn't believe her Chiari is 100% of the problem he also wants to be thorough and make sure her Chiari is checked and if needed operated on when the valve replacement is done. I almost had a heart attack when HE called me to ask me if we were ok with this plan of care. I have been in the medical field long enough to know that even the best doctors don't have time to personally make sure that a plan of care is OK with every patient or parent. Yet her new Neurosurgeon is determined to make sure that Chris and I are involved in every step of her care and any decisions he makes in Katana's case, to the extent that he will take time out of his busy schedule to call us himself if he feels the need to change a plan of care after we have spoke with him. He asked us to give him 30 days to run these test so he could decided what he felt was best for Katana, after two years of an uphill battle to just get someone to listen 30 days doesn't seem all that long to wait for some one to listen to us and have a passion to do it right the first time. So Katana has an MRI on Jan 3rd and then we see her neurosurgeon on Jan 4th. We will be scheduling surgery soon after that and the best part of it, we will be able to do it with confidence that we are doing the right thing 100%.

Katana's Neurosurgeon Appointment

I am a little late updating this. We saw Katana's new neurosurgeon on Wednesday. He was amazing. He walked in the room and started talking to us about what we have been going through. It didn't take me long to realize he hadn't seen her scans yet, I was amazed. He wanted to know how she was doing, what she was going through, and what we were seeing as concerns before he saw her scans. Then while he was in there with us he looked at her scans and saw where her right ventricle has been very small for quite a while. He confirmed what we had thought, Katana's shunt has been over draining for a while. We had already tried the first two options he gave us, which were waiting to see if the shunt would start to function properly again, and trying medication to control the headaches. Neither of those had worked so our third option was doing surgery to replace the valve on her shunt. We asked him what he would do if it was his child. Would he try a different medication, or do a valve replacement. He told us honestly he would do a valve replacement. So the three of us as a team decided to replace Katana's fixed valve with a programmable valve. He told us as long as he got in there and her shunt was working he wouldn't replace any of the tubing just the valve. So she will only have one small opening on the right side of her head instead of the big head incision and the abdominal incision. He is optimistic that he won't have to replace the tubing because we can tell the shunt is draining it is just draining to much. We don't have a date for her valve replacement yet but we should have the date early this next week. We are relieved that finally someone has listened to us and is trying to do what is best for Katana. We know it will be a long process to get her shunt dialed in correctly but we are willing to put in the time and effort to do that if it will help Katana feel better in the long run. Thank you all for your continued prayers and support through this.