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.