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.

Seizures and a Birthday Party.

So we went to the neurologist yesterday and Katana had an EEG  prior.  Her neurologist didn't have time to do a full read of the EEG but he did glance at it and wanted her started on Keppra. She did act funny during the EEG, but we don't know if there was any actual seizure activity.  Her neurologist was insistent that she be on meds so we are assuming he saw something but won't know what for sure until next week.

But on a much lighter note we had Katana's sixth birthday today.  It was a lot of fun with Chris's parents and some good friends.  Katana's best friend was here so she was very excited to have her best friend around for the day.  We had a huge BBQ with ribs, salad, and chips.  No one went away hungry.  Enjoy the pictures of Katana celebrating her big day.

Happy Birthday Katana!!

It is hard to believe that Katana turned 6 yesterday.  It seems like just last week we were fighting with doctors about what treatment she would receive when she was born.  Telling them over and over and over again that we wanted any and all life saving treatment for her.  They kept telling us she wouldn't make it, and if, by the Grace of God, she did live she would have multiple disabilities.  I finally got angry and told them I didn't care what challenges we would face she was our child and we wanted her to have a chance to live a full life.  I told them they didn't know what God had planned.  I know raising a disabled child isn't easy, I had worked with disabled adults before Katana was even born, so I went into it knowing what challenges we might be facing. We knew our lives would never be the same, just like with any other birth things would change.  The doctors told us so many times that she was to early, there was a good chance she wouldn't live no matter what medical support we gave her.  Then she was here, she was so tiny and fragile. She was hooked up to so many machines, IV's and wires covered her tiny body.  The first time I saw her it hit me that she might not make it.  How could someone so tiny fight the battle that was in front of Kat?  It was a battle that looked impossible for her to win.  Her doctor in NICU was amazing, he gave me strength when mine ran low, he held me up when Kat had bad days, and he always had faith in her.  I can't even tell you the amount of prayers I said in those first months of Kat's life.  I knew the only way Katana would pull through was with the help of God.  The saying "Don't show God the size of your mountain but show your mountain the size of your God" kept running through my mind.  I would sit beside Kat's bed in the NICU and visualize God carrying Kat through all of it.  I knew she was truly in God's hands.  Even three months later when Kat was coming home the doctors didn't give us much hope.  They told us she would never walk, talk, be potty trained, or be able to go to a normal classroom in school.  I knew better, Katana was on a mission, God had big plans for her we just had to wait for him to show us what they were.  July 4th, 2006 Katana gained her independence, she came home from NICU.  We had been told the day prior that something had shown up on the MRI that had been done, but they said they were just going to watch it and we would come back in a few months for another MRI to check on it.  They didn't give us a name or any idea as to what was going on, just that something was wrong.  It wasn't until October of 2006 that we learned Kat had hydrocephalus.  At that point we didn't even know what hydrocephalus was, let alone what it would do to our lives.  We were referred to a neurosurgeon at that point and we were told that Kat would need brain surgery to live.  Since March of 2006 a shunt has controlled our lives.  It is a constant worry if it is working correctly, being sick can never be just being sick, we always have the fear in the back of our minds that something might be wrong with the shunt.  She has had two brain surgeries, which I know is truly amazing considering a lot of her hydro friends have had many more than that.

Six years after the scariest time in our life I look at the beautiful little girl sitting next to me and I know that God handed us a miracle to raise.  God choose us to look after one of his special angels.  I can't even begin to describe the things Katana has taught our family.  We never take a moment for granted, we know all to well how precious life is and how fast things can change.  Who would have thought that one little girl could change so much?  I am so blessed that she calls me mom.  I can't wait to see what the future holds not only for Katana but for our whole family.

 Katana the day she was born.  16 weeks premature. Weighing 1lb 7.5 oz

Katana today. A beautiful, healthy, happy six year old little girl.

Waiting again...

I hate that word.  I know Hate is a strong emotion and I don't hate many things, but I hate waiting.  I once again feel I have been  that we have been thrown into a whirlwind.  I am praying it is short lived and that the answers will be found soon.  Tuesday night Kat had another headache accompanied by a tummy ache. So we cuddled on the couch until she fell asleep in my arms.  I got up and sat beside her on the couch since I couldn't fall asleep.  I hate those sleepless nights, but today I am thankful I didn't fall asleep.  About a half an hour after she fell asleep Kat had what appeared to be a seizure.  Her whole body tensed up and shook, no matter what I tried I couldn't get her to wake up and snap out of it.  It only lasted 15-20 seconds but felt a little more like a lifetime.  Then she finally opened her eyes, she looked at me with a look of pure panic in her face.  She was scared, confused, and crying.  It took her a little bit to come around and settle down.  Then she was purely exhausted.  So we ran her to ER where they did a CT scan and Blood work.  The CT showed some minor changes in her vents and the blood work was all over the place.  So the ER called the neurosurgeon, and they wanted to see her ASAP in Kansas city, but they were ok with us driving her as long as we were comfortable doing so.  So we loaded up in the van and off we went to Kansas city.  We went to the neurosurgeons office where they looked at everything.  They ruled out the shunt being the cause of the seizure (thank God), but wanted us to take her to ER at Childrens Mercy to see if they could find the cause of the seizure.  So we went into ER. We waited and waited and waited...different doctors came in and out not saying much but checking her neurological status over and over and over again, I think they checked her neuros 6 different times. Then a surgery consult walked in, we were confused since we new neurosurgery had no intentions of doing anything.  When we asked what was going on they told us they were checking her shunt, really we already ruled out her shunt being the issue, so my patience boiled over.  We had waited three hours to be told what we had known 3 hours earlier.  So then they proceed to tell me that they are just going to schedule her an appointment with a neurologist and we would have to come back and see them.  Really you mean we sat here for three hours to be told they would schedule an appointment.  She already has a neurologist whom we love and we had no intentions of changing neurologist, which I had made very clear to the first doctor I talked to in ER. So after telling off three different doctors we still have no more answers as to what caused her seizure or if it was an actual seizure at all.  We wait for her neurologist to decide which test they are going to run and what the next plan of action is.  Yesterday Kat slept most the day, she was awake for one 3 hour stretch and a few 30-45 min stretches, totaling about 6 hours awake and lots of time asleep.  So far today is a little better, she isn't sleeping near as much and seems to be feeling more like her old self again. I am praying the next few weeks will bring answers.

Hoping for the best and preparing for the worst.

Kat has had headaches since Saturday.  They are the daunting kind of headaches we haven't missed these last two months.  The one's that leave her not wanting to move, wanting a quiet dark room to lay in.  I hate watching these headaches take their toll on her.  She whimpered in her sleep until after 3 last night. So after a visit to the doctor today we really are no closer to answers then we were at 3 this morning as I held her praying it wasn't her shunt.  It could be allergies, could be migraines, or could be the dread shunt.


So we came home this afternoon and prepared for the worst.  Decided it was time to change out the clothes in our emergency bag, taking out the winter clothes and putting in summer clothes.  Making sure all the food was still good, and checking to make sure we had replaced anything we had used.
An emergency bag is part of our life, we have clothes for me, Chris, and Kat, personal items we need to remain presentable at the hospital, snacks, and things to keep Kat occupied.  We also keep things in there that always seem to be forgotten, like a charger for our phones, extra copies of important papers like insurance stuff, and copies of MRI and CT's that we may need.

It is a bag we pack in hopes to never use it. A trip we plan full in detail in hopes we never have to make it. But with hydrocephalus as part of our lives it is a bag we know that we will more than likely need it. Most shunt revisions are done on an emergency basis so it is always better to be prepared.  

Amazing Doctors amaze me.

Most of us are used to having routine test ran and waiting and waiting for answers.  Well we are no different. We are used to waiting. Yet today Katana had her routine MRI to make sure her new shunt had expanded her ventricles.  I figured we would be getting the results Wed or Thursday.  I guess I tend to forget that we finally have a neurosurgeon who is passionate about his patient's care.  He wants us to know as soon as possible what is going on, he wants us to be directly involved with her care every step of the way.  We were driving home tonight when the neurosurgeons office calls.  I was nervous picking up the phone, fully expecting something to be wrong.  When his nurse told me that Dr. Igbase just wanted us to know the MRI looked great, her right ventricle was no longer collapsed and her ventricles were exactly where he wanted them to be I was in shock.  As I said thank you I had tears streaming down my face.  A feeling of this was almost to good to be real washed over me.  Was this nightmare we had lived for the last 4 years really over??  You mean I wasn't dreaming the last 9 weeks of our new life??  I have physical proof that she is better??  I don't think my brain could even process all the emotions that went through me.  We have lived our lives around her headaches for so long that part of me couldn't believe it was truly over.  But it is, this last 9 weeks has been the start of our new life.  No more having to watch our five year old live in chronic pain.  Finally someone listened and did something beside pat us on the back of the hand and tell us we were lucky that her shunt was draining at all.

 So this is Katana's MRI's They are labeled with the month.  January's was done before her revision and April's was done today.  The white in the middle of the brain is the fluid in her ventricles.  You can actually see that she has fluid in both sides now!! It is amazing what a properly working shunt will do for a child!  I am so relieved that Katana is doing so much better.  I can't wait to see what the future holds for her!

My sanity is wearing thin...

So I know I am a few days late updating this but lets just say this week has been a little crazy around our house. After C.J. (our youngest) sticking a bead up his nose, the ER failing to get it out, a trip to the ENT and finally ending up in surgery Tuesday was an extremely busy day. We got to the ENT at around 11:30, he looked up C.J.'s nose and the bead was still there, but was just back far enough he couldn't safely get it in his office so he scheduled surgery for 2:30 that afternoon. We finally get everything scheduled, doc took one more look up his nose to get a good idea of where the bead was and he said he could see it lodged in between the nasal septum, we left his office a little after 1. Show up at the hospital for the surgery and doc comes in and tells us that everything should go pretty quick he thinks that once they give him a little gas they will be able to reach up there, grab the bead and wake him back up, shouldn't take over 10 min from start to finish. So when it was an hour later and we still hadn't seen the doctor, and they hadn't came out to get us, I knew something went wrong. A little over an hour later the doctor finally comes out and tells us that when they put C.J. under, and looked up his nose to grab the bead, it was gone. They couldn't find it and were extremely worried that he may have aspirated it. So they ended up scoping his sinuses, bronchial tubes, both lungs and his esophagus, looking for this dang bead. It was never found but they kept him for an hour after he came out of anesthesia to make sure his oxygen levels stayed up, and then did a chest xray, and finally sent us home. I think between all the stress from the day and the barometric pressure(that is not a friend to Katana's head) she ended up with a severe headache at 3 o'clock Wednesday morning. Chris and I both sat straight up in bed to her screaming in pain, upon bringing her down stairs we realized she had a fever, which with Katana happens occasionally for no known reason. When she woke up Wednesday morning she was all better, her headache and fever were both gone and even though she seemed to have a little headache off and on through out yesterday it never got as bad as it was at 3am. So we ended our streak of no severe headaches but I will gladly take one in 7 weeks compared to the 4-5 a week we were having before. Now I am just hoping for a nice relaxing weekend with no excitement to get everyone ready to go back to school Monday, and hopefully repair some of mommy's sanity. lol

7 weeks baby...

Well seven weeks without a severe headache. We are so excited that the weeks keep ticking by with such great success. I find my self praying daily that this trend continues for a long time. I will gladly count the weeks she lives without a headache.

Now normally I keep this blog about Katana and our journey in hydrocephalus but tonight my four year old, "The Moose" stuck a bead up his nose. Normally things up the nose don't worry me to much a pair of tweezers and an extra pair of hands and Mom can handle anything. But tonight I couldn't even imagine getting it out with tweezers. It was SO FAR up there that it took me a few min to even see it up there. So after a trip to ER and three tries by the doctor they couldn't even get it out. So tomorrow we head to Hutchinson to an ENT to see if they can get it out. If not we may be looking at surgery to get it out. He thought it was all fun and games until they had to try to get it out. Then he finally decided it wasn't fun anymore. Finally after all of that he now says "I don't stick things up my nose". So I guess it is a lesson learned. I swear my boys give me a run for my money. So tomorrow we will head off to the ENT to pray he can grab the the bead and get pull it out without to much trauma. All prayers for a successful bead removal would be appreciated. I swear my life as a mom never boring, but I love my kids and wouldn't have it any other way.

Moving on up.....

Well after parent teacher conferences yesterday, Katana's teacher thinks she is going to be ready to move on to Kindergarten next year. She has progressed so much that her teacher doesn't think there will be any worries with her going on. She also told us that Kat has become a mentor to one of the kids in her class. She helps him find pages in their books, helps him stay on track, and helps remind him of the rules. I am so proud of her. She is doing so great. She also passed the 6 week mark with no headaches. This week has just been a great week. :)

A lesson in our new life...

So yesterday Katana reached 5 weeks with no severe headaches. She has started to complain of little headaches if she lays down flat to long (more than about 30 min). When I say little headaches I mean she looks at me and says "Mom my head hurts." Then she goes back to doing what ever it is she was doing. So we started trying to figure out what is causing these little headaches. My first thought was sinus junk that has been going around, but then I realized it they were only showing up when she was laying flat. So we tried elevating her head when she is laying down to see if maybe she was stopping her shunt when she was laying flat which was causing pressure to build up. We have tried having her sleep on her bean bag the last few days and that has sent these little headaches packing. So while I can't say that she is 100% headache free I can say that she is still doing so much better than before her shunt replacement. These new headaches are nothing compared to what she had with her old shunt. She has no light sensitivity, no noise sensitivity, and no nausea or vomiting. These headaches didn't stop her and put her in bed half the day. They didn't make her cry and didn't make her curl up in ball and hide in a dark room. They don't interfere with her being a normal kid.

After spending some time thinking about these headaches I realized that we really don't know how Katana functions with a properly working shunt. They think that Katana's shunt had been broken since 2008, when her ventricles were first noted to be "slit-like" (or in layman term smaller than they should be). In 2008 Katana was 2 and had just started to talk. So we have no idea what her body does with a shunt that works. It can be normal for some people with hydrocephalus to not be comfortable lying flat. So for all we know this is Katana's normal. Which I will gladly take over the hell we have been through the last 4 years.

So I guess we have a lot of lesson to learn now that Katana has a working shunt. She is all of a sudden a typical 5 (almost 6) year old. She goes 100 miles an hour from the second she gets out of bed until she crashes at bedtime. She has a ton of energy, a smile on her face all the time, and finally she is not having constant pain. I honestly don't think we all realized how much her shunt was affecting her life. Her valve had been broken for so long that we had become accustomed to her being in pain all the time. Now she rarely complains of any type of pain unless she lays flat for to long. She is just a totally different little girl than she was 6 weeks ago. She is so full of life!! I love our new life!! Her being a typical kid is worth all the insanity it causes me.

Four weeks...

Yep four weeks with no headaches. I can't believe it. I wasn't sure this was even possible for her. But guess what it is!!! She even woke up a little before seven this morning and still no headache. It used to be she never got up before 9 because it was almost a guarantee she would end up with a headache. Not anymore! I am finally not worried about her getting up for school next year, she can do this. She can finally have the normal life of a five year old. I never realized what a horrible mess a broken valve could make our lives. Granted it could have been so much worse but it was almost four long years of headaches. She was 18 months old when the headaches started. A little over two when they started coming a few times a month. She hasn't been headache free for a month since then. So today is huge for her, the first time in four years she has been without a headache for a month. How I would love to show the other neurosurgeons we saw the difference in her now. They ignored me for years trying to tell me it wasn't shunt. I would love to know what they would say now. How can they say it isn't her shunt when she has went the full month since surgery without a single severe headache. Tonight we will celebrate, cupcakes anyone??

Amazed!!

Katana has had her Samsung tablet since Friday. We have worked on letter sounds for her speech a couple times a day...and today she started sounding out words. At first I thought it was her recognizing the words since we had played it so much. So I put it on a different part of the game which gives words she hasn't played with prior in the game to sound out. Sure enough she did it. Multiple times she sounded out the words without any help. I am some what in shock. What happened to the little girl that a month ago struggled with her letter recognition?? All of a sudden she is starting to read? I am so excited for her and so proud of her. I think this tablet may have been the best thing we have ever gotten her. The constant routine of the letter sounds seems to be sticking. Her speech is improving and all of a sudden she isn't struggling to identify her letters. Anyone with a little one that is working on letter sounds, speech or beginning reading the app is called Kids learn to Read. I know it is on the android market since her tablet runs on android I'm not sure about apple. I would highly recommend it to anyone working on reading with a child.

Opening doors!

With Katana's back pay from SSI we got a Samsung Galaxy tab 10.1. I spent some time yesterday putting education apps on it for her. Everything from speech games to memory games. So far she is loving it. It really gives her the ability to visually learn different things. Katana has always been very good at computer, iPod, and loves my mom's iPad 1st generation. She was so excited when we could get her favorite app from Grandma's iPad on her new Samsung. So we spent some time yesterday working on phonics, and memory games. It amazes me how fast she is picking up new things. Now Kat has always been very good on computers and anything electronic but this is different. This is things that she had struggled with prior to surgery. Things like letter recognition, memory flash cards, and writing her letters. I am so excited at the possibilities this tablet will open up for her. Watch out world, Katana is on a mission.

Back To School!!!

Since there was no school yesterday Katana get's to go back to school on her three week anniversary of surgery. She is so excited to go play with her friends and be back in her classroom. She has also went three weeks today without a headache. A year ago I never thought we would go back to weeks without headaches. It's amazing what a year, the right doctor, and surgery can do. She is doing awesome. She still has a cough from her upper respiratory infection but it is getting better and of course doesn't stop her for a second. So I am sending her off to school, her teacher is amazing and will make sure if she has any concerns that she talks to me. So it's back to school she goes. It will be exciting to see how she does today. I know all her friends are so excited to see her they could barely contain themselves when we were there a week ago to pass out valentines. A few of the girls wanted to hug her but were scared cause of her incisions. It was so sweet listening to her explain to them that they don't hurt anymore. I think the only person who will have any sad emotions about today is me. I have gotten used to her being here all day again. Even though her and C.J. love to fight I will miss having her home with me in the afternoon. She is mad at me cause she can't ride the bus with Pam (our bus driver) to school because I have to hand in the doctors release for her to go back.

To celebrate going back to school, and make her feel a little more girlish, Kat, Mia, and mom did manicures last night. Kat and I painted our nails blue (for Hydro of course) and our toes green, Mia painted her nails Green (her school color) and her toes blue. Someday I am going to get more creative and learn how to detail on finger nail polish. That way we can all wear Blue nail polish with Hydro written across it. I tried a little last year but I need more practice, I have two girls so I guess I should just start practicing on them.

I will have to post after school as I am sure she will have tons of stories to tell me. I am so excited for her I can't hardly wait!!!

Doctors Appointment and the cough.

Katana's doctor appointment went great! She is released to go back to school of course that was before she came down with a cough yesterday. I am thinking sinus stuff cause it started out as a runny nose then an ear ache and now a cough. So no school today. Give her the weekend to recover from the cough. I can't wait to get laminate flooring put down because I know this carpet isn't good for her respiratory system. Just waiting on an estimate to get things rolling on that. But anyway more details on her doctors appointment. They are amazed with her progress, he couldn't believe how good she looked. She was bouncing around the office all smiles. He really didn't think 100% of her problem was her shunt but he is now thinking it was more the shunt than he thought. Her headaches are gone, her pain is gone, and she is finally a typical 5 year old. He said he could see a difference between this visit and last visit. The last visit he didn't think she was in constant pain from all of this but now he is second guessing that. The last visit she was careful getting on and off the table and this visit she was pretty much jumping on and off the table. She has a bounce back in her step that we haven't seen in a long time, and she was giggling a playing around with Dr. Igbase. He has never seen her like that but he was enjoying seeing it. It used to be she would only giggle when she was tickled or we laughed, yesterday she was quite the joker. She kept playing jokes on Dr. Igbase and then laughing.

So the plan from here on out is to get a Rapid sequence MRI in April to use as a baseline for her new ventricle size, then an xray after to check her shunt setting and fix it if necessary. Then as long as she continues to do well we will see Dr. Igbase again in August. Then every 6 months as long as she is doing good. Oh and one more exciting thing from her appointment yesterday, Katana is finally gaining weight. Which would make no since if she wasn't so much like me and Grandma Sandi, neither one of us eat when we are in pain so I guess Katana doesn't eat when she is in pain. She hasn't gained a pound in almost two years sticking at 34 lbs. Yesterday she finally hit the 35lb mark. I was excited to say the least.

The best Valentines day present EVER!!

TWO yep count them TWO WEEKS with NO severe headaches. Can we throw a party?? I have cried realizing that finally my baby girl has a chance to be a kid again. No more dealing with grown up pain, no more constant severe headaches. She is doing so great. We had a battle with the stomach flu to scare me along the way but she even trucked through that. She is going full force from morning until night. She is also doing things she has never done before, things she used to struggle with are all of a sudden clicking for her. It is so amazing. I honestly can't remember the last time she has went two whole weeks without a headache, it's been at least two years. I can't believe that it appears the shunt was the main problem. All those doctors that kept telling me it wasn't her shunt were way wrong. I would love to show them Katana now. Maybe it would open their closed minds. Maybe just maybe they would realize that just because a shunt is pulling off fluid doesn't mean it is working for that patient. They didn't want to touch Katana because her shunt was pulling off fluid, but they never once stopped to think about the affect it was having on Katana. Thank God for Dr. Igbase, and his willingness to listen to us and to do what was best for Katana no matter what that meant. If he hadn't done the surgery God only knows what would have happened with her distal tubing (tubing running from her neck to abdominal cavity) being calcified. I can honestly say I followed my gut that something wasn't right and it lead me to a doctor who cared enough to make things right. I thank God I never quit looking for answers. I am glad I never listened to those who thought I should have just believed the other doctors. Yes it took us getting a third opinion but after it was all said and done it was worth every second I spent fighting with doctors. It was worth every phone call I made, every doctors appointment we went to and every fight I got into. In the end I found someone who listened to us and believed in what we were dealing with. Low pressure headache (which is what Katana had) are hard to diagnosis but it is even harder when the doctors don't listen. But all that matters now is that her new neurosurgeon does listen and he did what we all felt was the best thing for Katana. He gave me my little girl back.

Thank God for the flu...

What kind of crazy parent would be Thanking God for the flu...well I am. Katana apparently had the flu yesterday which means her new shunt is still working perfectly. She is feeling so much better today and is sitting up playing on the computer drinking Gatorade and eating string cheese. Thank God. I feel so relieved to see her smiling and feeling better again. Sometimes I have to laugh at the life of a hydromom. Never thought I would Thank God that my child had the flu but at least it wasn't her new shunt and she is back on the road to recovery.

A Milestone and a little fear to shake things up.

Today is huge. Katana has went a whole WEEK without a headache. She has had her new valve a week today and no headaches at all. So it seems to be working (knock on wood), I would give the world to go back to one or two headaches a month. This is the first week in over a year that she hasn't had a headache at all. I was so excited when she woke up this morning once again feeling great.

Then she sat down on my lap a few hours later and told me she was tired. With in a few min she was vomiting everywhere. Can we say heart stopping? She had been doing so awesome that I felt like part my heart had been ripped out. Then I remembered the flu has been making visits to our house. I have had it, Chris had it, C.J. had it, so maybe just maybe it is just the flu. After calling the neurosurgeon he agrees that it is probably just the flu. So now I sit on pins and needles the next 24 hours praying that she doesn't show any other signs of a shunt malfunction. The praying starts, Please God please just let this be the flu...wait what parent in their right mind would pray their child has the flu...well that is just one of the many crazy things about being a hydromom. The flu goes away on it's own, no need to rush her to the hospital, no need to cut her open, no need for more hospital stays, it just goes away. So now we are praying she has the flu and hope that tomorrow we wake up back on the road to recovery.

Surgery is done!!!

Katana's Surgery to replace her valve was done on Tuesday the 31st. It was supposed to take place at 7:30 in the morning, she finally went into the operating room a little after noon. She was done a little after 2 in the afternoon. By that night she was up and walking around the hospital room. While they were in the operating room they went to adjust her distal catheter and realized it calcified down the neck into the chest, all the way to the abdomen. If we hadn't done surgery it would have caused us big problems down the line. Thank God someone finally listened to us and decided to fix her valve or the shunt tubing that had calcified could have caused an abscess down the line which could have put Katana in danger. They were able to dig out most of the calcified tubing but did have to leave a small portion of it in as they would have had to do multiple incisions down her body to get out the rest of it. Despite all that she is doing really, really good. We are at home and trying to convince her to rest but she wants to be a normal kid and run 100 mph hour. She also had a great break through this morning, normally Katana hates automatic toilets because they are to loud for her, but this morning after she used one she told me it wasn't to loud for her anymore. I was so excited to say the least. It is baby steps but at least it is steps in the right direction.

Grandma Sandi with all the kids after Katana's surgery. We always have to have a picture take with Ronald McDonald.

Nanny and Poppy visiting Katana after surgery.

The sign in our room at the Ronald McDonald house. I thought this was pretty awesome.

Daddy Kisses after surgery.
Mommy and Katana after surgery.

Grandma Sandi and Katana after surgery.

Katana's incision on her head.

Family Strong.

God never promised us life without challenges. God gave us people to help us through the rough times. The last few years we have huddled together as a family and pushed through all of this. This next week will be nothing different. We will huddle together and support Katana through the surgery and recovery. As part of that we have all shaved our heads or gotten short haircuts to show Katana that she is beautiful no matter what. I know it is not what every family would do but this is what WE do. We didn't ask any ones permission, we aren't seeking any one's approval. All we ask is that if you can't be positive with us then please just step back and let us fight this fight. We are trying to show Katana that this is a positive situation and the last thing we need is negativity breaking in. Our family is stronger than most, our family will never let anything like brain surgery bring us down. We will prevail and we will come out the other side stronger than we are now.

So Katana HATES hospital gowns. She always has. Getting her in them is always a challenge because they show her bottom, who knew a five year old could be so modest. So I started thinking about not wanting to fight that battle since I knew she was going to have an IV and was going to need to be monitored during surgery. So these are my solutions to that issues. Homemade hospital gowns, a simple dress pattern that I turned into cute and fashionable hospital gowns.
Total I made four of these cute little gowns all in bright stylish colors that Katana loves. She is now excited to be spending a week in a hospital gown. She actually wants to wear them around the house and tried to sneak in wearing one to school today. :)

After showing off my work I have been told I could/ should start a business. Well we will have to see what happens after surgery. Right now I'm just working on getting through that. I have never been afraid to try new adventures so we will see what happens next.

And the hair starts coming off.

Katana had a headache yesterday afternoon which of course starts talk about surgery that is quickly coming up. She was scared about shaving her head, not having her surgery. So that was a quick and easy fix. We shaved my head a week early which in turn cured Katana's fear about shaving her head. She is now excited to shave her head and we have had to convince her to wait until next weekend to shave hers. It is a small price to pay to cure her biggest fear. So now Mom and Dad are sporting new hair cuts (along with a few friends and family). I am hoping to post pictures of all of us who have supported Katana by shaving our head the day before or after her surgery. We sure make one beautiful "Katana's Army". 8 days and counting until surgery.

Can we Fast forward.

I am normally the one wanting to slow down time cause my kids are growing up way to fast for me. Today I am really wishing we could fast forward time to the 31st. Katana had a horrible night last night. She hasn't had such a long night in a while. She was up and down last night crying with abdominal pain and a headache that wouldn't go away. Medicine didn't help at all. So after a long night for both me and her I am ready now more than ever for her to have surgery. I am holding out so much hope that her new shunt will make her feel better. Hoping that when they adjust the distal catheter on her shunt it will help with the abdominal pain, her doctor believes that her distal catheter may just not have room to pull freely and is going to try to loosen it up when he does surgery. 25 more days. I feel like a little kid waiting for Christmas morning. The best possible gift I could receive this year would be for Katana to have drastically less pain then she has the last few months. Who in their right mind would ever think as a Mom I would be counting down the days till my daughter underwent surgery but I just can't wait for her to be in less pain.

Another Great appointment.

Yesterday was Katana's MRI which went great. She was put under General Anesthesia which turned out to be more of a blessing than it seemed at the time. Spent Last night at the Ronald McDonald House which was fantastic, spent some time in their downstairs game room unwinding letting the kids play and playing Korey in Air Hockey. It was such a blessing. Got up early this morning and went to see Dr. Igbase. We had another amazing appointment. Her surgery is set for January 31st, first thing in the morning. Since she was put under General Anesthesia yesterday she won't have to go through any pre op testing. So that is why it was more of a blessing then it seemed at the time. Dr. Igbase will have an office day after her surgery so if she has any problems he will be readily available to treat Katana. He is worried that she will have some trouble adjusting to the increase pressure in the right ventricle so he wants to be available if she is needed. He said something today that brought me to tears. He said that while most neurosurgeons won't touch a working shunt as long as the MRI and CT's look ok. He said he isn't treating images on a computer screen he is treating a child. And while her shunt is working it isn't working for her so it need to be changed. This was such a relief for me to finally hear that he wants the same things we do. He wants Katana to feel better. We are so excited with what the next 6 weeks holds for our family. Let the next chapter in our life start.