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.