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.

Just a little more stress to add to the headache...

Katana's appointment with the new neurosurgeon is in 21 days. I can't help but be excited and nervous at the same time. We are trying to keep Katana as healthy as possible, which the school just made a little harder. I receive a call from the school nurse today letting me know that a little girl in Katana's class has come down with the chicken pox. So now we are off to see the doctor in the morning to find out if we need to keep her home for 21 days to make sure we have done all we can to lessen her chance of exposure since we can't give her the vaccine yet. Hopefully it all works out for the best in the end. God has all of this worked out I just need to put my faith in him.

Being sick.

Katana has spent the last two days with a horrible cough. Thankfully today she is feeling better and actually wanting to go back to school. We saw the doctor yesterday morning and were told that since her 02 stats were good that we could treat her at home so we have been on breathing treatments every four hours for the last 48 hours (I start them the minute she gets a cough) and they started antibiotics and a decongestant yesterday. They seem to be working their magic as she is full of energy today. Her voice is still a little shaky but it is getting better as time passes. Hopefully she will be all better by this weekend so she will be able to have fun staying with Nanny and Poppy while daddy works and me and big sister Mia go see Sugarland.

An Odd pain reliever.

So the last three days have been head pain after head pain, but totally by mistake we have found something that actually helps. Katana fell asleep with her head hanging off her bean bag during one of her headaches and woke up rather quickly, 45 min nap instead of 2-3 hours. She woke up fully recovered with no lingering effects of the headache. YEAH!! I was excited to say the least. So when she started to complain of her head hurting again we tried having her lay down with her head off her bean bag again and it worked like magic. At first it was almost to good to be true, we have been dealing with headaches for so long how could something so simple give her so much relief. But it has continued to work. 4 times she has done with 100% success. Although this leads us to believe even more that we may be dealing with Slit Ventricle Syndrome. Another piece of good news we have our appointment to see our new Neurosurgeon. November 30th we are off to Kansas city. I am ok with waiting two months to see him and I honestly feel this is all in God's hands. He is in control of all of this and I am just along for the ride. So he will protect her until we see her new NSG.

A good day.

I thanking God tonight for a good day for Katana. She only complained of pain once this morning (a miracle after months of non stop pain), than this afternoon she was in an energetic mood and running around playing (another thing I have missed seeing her do the last few months), but my greatest gift came this evening when she sat down to start telling her dad and I about the letters at school this week. Normally it is very hard for Katana to remember the letters and we work with her often on what they are but tonight she was actually MAKING this weeks letters with Lego's. The letters of the week are T & I. And than to top off my complete excitement she was telling us that Turtle starts with T and Igloo starts with I. It is only MONDAY and she was doing it on her own. I only hope this can continue it was so nice to see her actually getting her letters. She can say them but has a lot of trouble identifying them and rarely makes any letter outside those in her name. But she did it today. All I can say is Praise God. He must have know I need a good day as much as she did.

God's not so gentle reminder.

So sometimes I forget that I can't control everything in life. I have always been a little bit of a control freak and God occasionally has to remind me that I'm not in control. Today was one of those days. When we spoke with the neurologist he isn't comfortable diagnosing Slit Ventricle Syndrome so we are still waiting for answers. He told us it was a complex diagnosis and that he really wanted a pediatric neurosurgeon to make the diagnosis. Well there isn't an actual Pediatric Neurosurgeon in Wichita so we are being sent to one in Kansas City. I just have to remind myself that God has control of this. He is doing what is best for Katana, He is making sure that she is in the best hands. So now we go back into the waiting for the next appointment. I truly hope that the next one will be able to give us the answers and I know I have to leave it all up to God. I have to believe that everything happens for a reason and there is a reason God is waiting for us to see this new doctor. In the mean time I will ask for prayer for all of us. This last 9 months has started to take its toll on us.

Katana's story

Katana is my miracle. I honestly look at her every day and know that God handed me a miracle to call mine. Her story starts before she even made an entrance to this world. I was 23 weeks 3 day pregnant when I went into labor. We were flown to a major trauma hospital with a level 3 NICU just in case she decided to make an early appearance. Well she did make her appearance 4 days later coming into the world at exactly 24 weeks. She tipped the scales at 1lb 7.5 oz and measuring just 11 inches, she was literally the size of a baby doll. Katana spent the next few weeks fighting to live. She was hooked up to so many machines sleeping in a tiny plastic box that was literally covered in Plastic wrap, to keep her warm. We knew from the beginning that Kat was a fighter, her doctor told me that she was the first 24 weeker that he had ever heard cry, yes she actually cried when she was born. I remember a day while she was in NICU I was sitting by her bed. I remember blatantly telling God that she was in his hand, I only made one request of him, that if he was going to take her to be an angel with him I wanted to hold her before I knew he was going to take her from me. That very night the nurses let me hold her for the first time. It was the best moment and the scariest moment. I had asked God only hours earlier to let me hold her if he was going to take her from me than I sat there for the first time holding her in my arms praying it wouldn't be the last time. I cried both tears of joy and tears of fear that night, knowing that if God took her I couldn't be angry because he had given me my one request. I am so glad that God has given me every second with her. I know he has big plans for her. Katana’s first months of life proved she was a fighter beyond anything you could imagine out of someone so small. She would fight so many challenges from jaundice, to 6 blood transfusions, to Necrotizing enterocolitis. She is thought to have also had an intraventricular hemorrhage even though one was never verified by Ultrasound. Katana had an MRI on July 3, 2006 which was the first sign that something was wrong. We were told that they saw something on the MRI but they were just going to watch it for a while. We went back in October and did a repeat CT scan. It was then that we were given the diagnosis of Hydrocephalus. It was also the first time I had ever heard that word. I had no idea what it meant for her or us. We saw a neurosurgeon in January of 2007, it was then that we were told that katana would need a shunt to survive. A shunt drains the extra fluid off her brain into her intestinal cavity. Her Shunt was placed March of 2007. Katana has been lucky with her shunt as she has her original shunt after almost 5 years which is almost unheard of in the hydrocephalus community. Even though we now believe that she may need a shunt revision we are still happy she has done so well. I will continue to update this as our story plays out. I hope you will stay tuned.