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. :)

For all special needs mom's...

Spending the last six year in a world of special needs, meeting people I would have never meet otherwise, I have learned one thing at some point almost every special needs mom ask what she did to deserve this child?    Well I am going to answer that question...NOTHING!!  Raising a special needs child is something God planned for you long before you ever knew it.  You are specially equipped to deal with this challenge. You were chosen for this job.  It is not an easy one and we are all entitled to have our days where we feel that we are being punished, but we aren't. We are given an chance to see life that most people will never experience. We are allowed to cry, we are allowed to break down but we also have to pick ourselves up.  We have to dust ourselves off and we have to go on. Could most of your friends with "normal" kids honestly fight the battles we do?  Could they sit by and watch their child face challenges that most adults couldn't face.  Yet we do it and somehow make it look easy.  Maybe it's because it is a daily part of our life, we can't just get up one day and say I'm not gonna do it anymore.  This is our life now, we live daily with knowing that our child will fight battles that most adults couldn't.   They will also come out of those battles with smiles and giggles when most adults would be whining and crying.  I honestly tell myself those smiles and giggle are signs from God that I am doing something right.  Those little moments seem to come when I need them most.  When my daughter is laying in a hospital bed recovering from brain surgery she should be the one with tears in her eyes, and crying and yet she is the one laughing, playing, and bringing our spirits back up.  She is the one who is telling us she is fine, and wanting to run a marathon after having brain surgery.  She is my reminder that I didn't do anything to cause her special need, I just get the privilege of raising her to be the best she can be.  I get to help her succeed to her full potential and I get a front row seat to watch the most amazing child become exactly who God planned her to be.

I won't say I have never felt sorry for myself.  I have cried, and felt that I had to be the worst mom on the face of the earth.  We are allowed to have those days, we are allowed to cry and be angry at God, but the next minute you have to pick your self up and realize that you are perfectly fit for the job you have ahead of you. So allow your self to cry, be angry, but always remember to pick your self up and fight.  Your child needs you to be the strength they need.  You don't have to be perfect to be a special needs mom you just have to have the faith in your self that you can do this!!!

A long time.

I know it has been a long time since my last post.  We have had a busy end to summer and an extremely busy start to the new school year.  We are LOVING home school.  All the kids are doing amazing.  Katana is picking on up on things that she never could get the hang of last year. She is even starting to pick out sounds in words are beginning to read.  It has been so exciting to get to be her teacher this year.

Onto her shunt, she had been battling headaches since our flight to Kansas city in July.  They had become the ones that stopped her in her tracks and left her laying in a dark room crying in pain.  Her Neurosurgeon requested that she see a headache specialist to rule out migraines before we adjusted her shunt.  So we saw the headache specialist the first of this month and she really didn't think Kat's headaches were all "migraines" and believed that we were once again dealing with at least some low pressure headaches.  So we went back to Dr. Igbase and he willingly adjusted her shunt to slow it down.  So we changed her setting from 100 to 110, which confused me at first because I wrongfully assumed that the bigger the number the more fluid the shunt pulled off. When in reality the higher the number the more pressure the brain is expected to endure before the shunt starts pulling fluid off.  So now we wait.  Dr.Igbase has told us from the beginning that his fear is that Katana's perfect setting is in the rage of 105 which you can't set her shunt to, so we may end up having to bounce back and forth between 100 and 110 to keep her headaches under control and keep her pain free.  Yet we are hopefully that he may be wrong and that 110 may be her perfect setting. We won't know for sure for a couple more weeks.  We go back on Halloween to see how she is going and if her headaches are still under control.  If the headaches start sneaking back before then than we will know that we are probably going to end up jumping shunt settings every few months. 

Katana's First Flight for life.

So Wednesday ended with Katana complaining of a headache and my usual response of go to sleep and it will go away.  But when she was still asleep at 11 on Thursday I began to worry.  She woke up a for a little bit, long enough to ask her sister the same question a few times.  Then she went back to sleep for few more hours.  Which prompted a call to the Neurosurgeon.   His nurse was as concerned as I was and suggested that if we couldn't perk her up with some fluid that we needed a ct scan done.  So after 2 hours of pushing Gatorade she still wasn't acting like herself. So off to the hospital we went.  They did a CT scan and found that her right ventricle was partially collapsed again.  The Neurosurgeon saw the results and wanted her in Kansas City ASAP.  They immediately put Children's Mercy  in the air to come and get her.  Right now we are home we are not sure if it was a glitch in her shunt or if her shunt needs reprogrammed.  We see our Dr. Igbase August 1st so we are charting headaches and sleep patterns until then to see if we need to reprogram the shunt and if so which way we need to go.  We would rather do one educated reprogramming than guess and have to keep reprogramming her shunt.  So after an eventful 48 hours we are home and trying to get back to what ever it is we consider normal.  She is doing pretty good, still a little extra sleepy but we will know more August 1st.  I love that our doctor is jumping in and making decision at the drop of a hat but it still leaves us guess on what comes next.  Yet I will take this life over our life a year ago any day.  We will find our what is wrong and it will get fixed we know that much.  Thank you for all your prayers.

A quick Update.

It has been a while since I updated.  Katana is doing great.  We found out she did have two seizures during the EEG but the Keppra seems to be controlling them.  With the added bonus that she hasn't complained of a headache since starting the Keppra. I don't miss the headaches one bit, and neither does Katana.  The last few weeks have been busy getting things ready for the kids to start school online next year, getting vaccines caught up, and enjoying the beautiful weather we have been having.  We have loved being able to be outside, BBQing, blowing bubbles, riding bikes, playing at the park, and playing catch.  This is by far our favorite time of year, it is perfect time to be outside, it's not to hot and not to cold. I am not looking forward to it getting hotter in the coming weeks, but before we know it summer will be over and it will be back to the cold weather. So I will try not to complain to much when it is over 100 degrees out this summer.