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!