A crazy month...

This last month has been crazy around our house. I decided to go back to work, was supposed to be part time ended up full time. We have had a hospital stay in which we have started to discuss another shunt revision. Her shunt is working but isn't preventing the over draining as we had hoped it would. So her neurosurgeon wants to look into a different shunt and hope we get better results. We see him the 12th of June to discuss what type of shunt we will be changing to and schedule surgery. Right now Kat is taking narcotics to help with the constant migraine that we can't seem to get rid of. For this mom June 12th can't get here soon enough. I just want her to feel better and to be 100% again. We are also looking at putting on an Anti-siphon devices to help prevent pressure changes when she changes position. I will try to keep everyone updated on what is happening even though between work and taking care of the kids that seems to be a daunting task.

Things I wish people know about Hydrocephalus...

I understand that my daughter has a rare condition. I understand that hydrocephalus isn't something most people have even heard of. While I try my best to raise awareness for hydrocephalus there are a few things I wish people in my life knew about hydrocephalus. So here it is...

My daughter may look "normal" on the outside but my daughter is kept alive by a mechanical device implanted in her head. This device called a shunt and can fail at any time for a multitude of reasons. It can become blocked by cells and other matter that is naturally found in the cerebral spinal fluid. A cyst called a Pseudocyst can form around the distal end of her shunt (the end of her shunt that is in her abdominal cavity) which can block the shunt from draining fluid off of her brain. The shunt can also over drain and cause the ventricles in the brain to collapse and may lead to a brain bleed in some cases. Any of these are life threatening to my daughter.

The symptoms of a shunt malfunction vary so widely from person to person that it is hard to tell if the shunt is working without a ct scan and sometimes a shuntogram ,which is a test where they insert radio active dye into her shunt and watch it go down the shunt tract with a special camera. A shunt malfunction can mimic the flu headache, vomiting, and nausea, that we can NEVER take the flu for granted. I can never look at Katana and say oh it's just the flu it will pass, we always have to call her neurosurgeon and let him make the decision on what is best to do.  We live in the middle of no where and our best chance of Katana not having a major set back due to a shunt  failure is to catch it as early as possible.

We didn't choose this life. We didn't choose to spend as much time at doctors offices and hospitals as we do at our own home, ok so it's not that bad but there are times it feels that way. I don't want sympathy I want understanding. I want those who don't understand to ask questions. I want those who won't ask question to simply not judge us.

Update...

It has bee months since updated here.  Katana is doing awesome.  She has had zero problems since her shunt adjustment in August. She is doing so awesome in school that we have had to skip several unit in math just to keep her challenged.  She has mastered addition and is working on subtraction and story problems at the moment.  She is also picking up reading like it's nothing.   She is sounding out words and doing awesome on finger stretching words (which is what our school uses to help learn sounds in words).  We have had our normal bout of winter sickness but she has done great battling in her normal fashion.  So that is an update on us. :)