Bad News

Since my last post after Kallan's first seizure, Kallan has been doing well. Although, I am a nervous basket case just waiting for it to happen again. Staying up at night watching the baby video monitor and never taking my eyes off of her. But, she is just her normal happy self. So, when we got in the car for our 8 hour drive to Cincinnati I was somewhat optimistic that things would go ok. I was more nervous about the EEG than the MRI. I truly was not even worried about her SEGA (tumor that could grow) growing.

It was a very long 8 hour drive there. Kallan does not like to be held down, so being in her car seat for that long really annoyed her. Once we got there we let her play a while before making her go to bed. We had to get up at 5:30 the next morning and knew it was going to be a very long day for us and for Kallan. Kallan did not sleep well at all and then at around 5 AM I woke up throwing up. I could not believe it. Of all the days to be sick! So, Ben had to take her to her EEG and MRI by himself. He was so nervous because he knew she would be so fussy from not eating and she always wants her Mama. So, being hungry and not having me there was not a good combination. He did great though.

I was sick for a few hours and luckily it went away by around 9:30. So, I hopped in a cab and went to the hospital. I got there and waited a while before Ben came out. They had just sedated her and he was very emotional. It is kind of scary to watch and he had not had to be there for the sedation before. I assured him she would be fine and we went to get some lunch while we waited. They came to get us when it was over and I got to get see her for her recovery. She was SO happy to see me! She hugged me, laid her head on my shoulder and gave me lot's of love. It melted my heart. The nurses had all fallen in love with her because she was so sweet. They said most kids wake up from sedation crying and very cranky. Not Kallan though! She woke up smiling and playful. They could not believe it.

The rest of the day she was very fussy though. In hindsight we think she was starving. They told us to feed her a light meal and let her rest. So, we gave her some of her favorite snacks and went back to the hotel room. She screamed the whole time. We thought we were going to get kicked out of the hotel. Finally, she took about an hour long nap and Ben and I enjoyed the brief quiet time.

Then we went to dinner where they were having a protest right outside the restaurant. As soon as we sat down at our table Kallan started screaming so loud. Ben grabbed her and ran outside. He said she was screaming so loud the protest actually stopped for a minute and everybody turned around to look at Kallan. Ben was mortified! The manager came over to me and asked me if she had gotten hurt. I told her no she is just starving and explained that she had an MRI earlier that day. The lady was so incredibly sweet. She grabbed some bread and met Ben and me outside. We gave Kallan some bread and got her calmed down. Once she got some food in her she was her normal self again. Thank God! We were both so on edge from being anxious about the results and from her crying all day. She had worn us down! They got Kallan's food out right away and then when our food came she took Kallan and showed her the horses outside while we ate. It was so nice of her and such a relief for Ben and me. We were so thankful for that lady. She was wonderful!!!

That night we got some good sleep and woke up hoping for the best. When we got there and the main nurse came in she told us right away that her SEGA had grown a little, but did not know any details. My heart just sank. I had not really even considered that fact that it had grown. I knew that at some point it probably would, but I just never thought it would come so soon. I was shocked and heart broken. Finally, the doctor came in and confirmed what the nurse said. He said at this point it was not affecting her, but within 6 months to a year it would be putting pressure on the ventricles, which would cause hydrocephalus (water on the brain) and would kill her. Hearing these words coming out of the doctors mouth was terrifying. He told us our only options are major brain resection brain surgery, or the new medication that just got approved by the FDA in October that not only shrinks the SEGA, but all also the tiny tubers that cause the seizures. This is the medication we have been doing the fundraising for because we knew we may need it one day. He highly recommended we avoid brain surgery if we can and thought we should start the medication right away so the tumor would not continue to grow any more. Of course, we were concerned about the side effects, but were pleased to hear they are fairly minimal. The worst side effect is that it lowers their immune system making them more prone to infection. But, it does not alter personality in any way and actually helps cognitively. So, it looks like I am going to be even more of a germaphobe than I already am! Scary! One other good thing about the drug is that not only does it shrink the large tumor, it shrinks all the small ones that cause seizures too. That is a major plus in our mind.

He also told us that the EEG showed a few irregular brain waves, which is from the tuberss. He did not give us much information on what they means though. He thought it looked "pretty good" overall, so I guess that it good. I wish I had been able to ask more questions about that. Only time will tell I guess. He thought her seizure was from the virus, which we learned is common. He could not tell us if he thought she would have another or not. Most likely yes, but not uncontrollable. Ugh. So, that means continued Chiropractic visits for Kallan (because I believe they are working) and continued non-stop anxiety for me.

As of now Ben and I are 95% on board to do the medication even though it is going to be very expensive. But, to save our daughters life we would do anything. The name of the medication is Affinitor. It is the new wonder drug that they think may be the cure for Cancer, Parkinsons, Alzhimers and Autism. Pretty amazing! The statistics on the success of the drug are incredible. I will try to post some articles about it and a video that was on Good Morning America. They are on my Facebook page as well. Brain surgery scares us. The tumor is in the middle of her brain, so they would have to go through a lot of good brain matter to get to the bad. It is very risky. If for some reason the medication does not work - that would be our only option though. We are optimistic it will work.

Ben and I are doing pretty well. We are obviously very sad about the news and wish it were better. But, this is the hand we have been dealt and we plan to deal with it by attacking it head on. Kallan is still going to have a great life and be a normal happy kid. We believe that with all of our hearts. She is a fighter! Try changing her diaper sometime and you will realize that real quick!!! A lot of people have to take a medication to make their body work properly. Overall, we are staying strong. We love our babies more than anything. There is nothing we won't do for them.

So, now obviously research for the medication is even more important to us and it is the TSC Walk for the Cure time again, so we are about to be begging everyone to please donate to our cause again. It is on May 14th in Roswell this year. It was so much fun last year. We would LOVE for you to come walk with us. Our walk website this year is www.firstgiving.com/fundraiser/kallan/step-forward-to-cure-tsc-roswell-ga

If you feel called to donate we thank you. If you cannot, we totally understand, but would ask you to share our link and help us raise awareness. I will be posting on FB this week.

We are also having a wine tasting at Classic Wines on Friday April 15th at 5:00. Everyone is invited. It should be a lot of fun!

The day we have dreaded

Well, the day we have dreaded for 13 months finally came. This is the first not positive post I have had in a long time. We knew it was going to happen eventually, but I somehow got lost in how good she was doing and kind of hoped we would be the exception. But, we are not and I have been reminded of that. I just hope that at some point I will be able to somewhat relax and just enjoy my baby again without the constant worry.

So, it all started when Ben and I were watching TV and getting ready to go to bed. Suddenly we heard a loud gasp. I knew the second I heard it that something was very wrong. It was a horrible noise. I ran down stairs and went straight into Kallan's room. She was laying there covered in throw up just staring up at me, but not moving. I knew immediately that this was it. She was having a seizure. I don't think she was actually having one yet, or maybe she had just had one. We are not sure. I picked her up and tried to get her to respond to me. She was looking all around and grabbed for my glasses, so she was responding some, but she seemed out of it. Having never seen a seizure before I was having a hard time telling if she was or was not having one. I kept hoping she was just out of it from throwing up and just not feeling well. Then it happened. Her eyes darted towards the ceiling and nothing would break her stare. She was making some whimpering sounds and was completely out of it. Ben had called 911 earlier (which in retrospect we did not need to do, but we had no idea and we were so freaked out). Then we gave her the emergency seizure medication we had (which we also did not need to do, but did because we were freaking out!). The paramedics got there so fast. The got there right as she was coming out of it. They did not see the seizure. It only lasted about 2 minutes. Maybe less, but it felt like forever. We tried to quickly explain her condition to them, but they were not real knowledgeable about seizures. They were very nice though. They put us in the ambulance and Kallan started throwing up again. One good thing happened at that point. My mom had already gotten there to take care of Kensley and Kallan heard her voice and was looking for her. So, that was a good sign she was responding to our voices. My mom was so upset seeing her looking so pitiful and hurt so much for me as well. Thank God my neighbor came over and sat with her for a while after we left to calm her down. Ben and I obviously were not thinking and he hopped in the ambulance with us. I think we thought we were just going to the local Putnam Co hospital and could get a ride home easily, but they sent us to Macon (50 min away) where they have a pediatric ER. The ride went by pretty fast. I just sat there and held Kallan. She would sleep a min and then throw up again. I cannot even begin to describe how worried I was and all the things that were running through my mind. It was awful.

Once we got to the hospital Kallan was perking up a bit and responding to us. A few minutes later she was bouncing off the walls and happy as she could be again. Which was great to see, but totally confused us. They took her temperature when we got there and it was around 102. So, they gave her Tylenol to bring it down. They rang a few tests and took her for a CAT scan. As we were waiting for the scan she was singing and dancing for the nurses. Then when they put her in and she screamed bloody murder. It was my job to calm her down and they were yelling at my to hurry up and do it. So, I stuck my head in the scanning area and sang to Kallan at the top of my lungs. Anybody who knows me knows I could not hit a note if my life depended on it, but Kallan likes it! I am sure those tech's and nurses got a kick out of it though. Here I am in the lowest point of my life and I felt like I was one of the really bad people they put on American Idol as a joke! Oh well. It worked and the scan showed no swelling of the brain. Which is good.

After that there was not much they could do. They said they were going to move us to the regular children's hospital to observe her over night and the next day, but when the pediatricians came in and we told them everything and how we treated in Cincinnati they decided it would be best and easiest to just keep us where we were and wait to talk to her doctor to find out what to do. So, we waited for hours and hours. Kallan was asleep on my chest and I was sitting in the hardest chair in America. Finally, I laid in the bed and she slept on me. The next thing I know, Ben is trying to crawl in the tiny bed with us. It was miserable!!!!! Ben and I got no sleep and we were physically and emotionally exhausted by this point.

Finally around 8:30 we got in touch with her Cincinnati doctors......and then my phone would not work - we could hear them but they could not hear us!! And his was already dead. As if we did not already have a dramatic enough night! We finally got them on the hospital phone and we were relieved to hear that they thought it was nothing to be too alarmed about. They think it was caused by her fever spiking up. Kids with TSC are very susceptible to febrile seizures. They could not guarantee that is what it was, but they were pretty confident. So, they sent us home and chose not to put her on any medication at this time. We were very happy about that. We want to avoid putting her on medication as long as possible. We were scheduled to go back for a routine visit and MRI on March 15th and they did not see any need to move it up. But, they are going to do a routine EEG in addition to the MRI now to see if anything is going on in her brain.

So, we called one of my best friends, Leslie, and she came all the way from the lake to come pick us up. Thank God for friends like her! She was there right away without an ounce of hesitation.

When we got home we were so tired, but it was time to go pick Kensley up from school, so I decided to just stay up, which may not have been the best idea. After I got Kensley we went to the Chiropractor and they asked me if I could come back in 30 mins. That normally would have been no big deal, but on that day it just set my meltdown in motion. I got to the car and lost it. I was bawling. They ended up realizing what had happened and chased me out to the car and begged me to come back in. I did and they worked us in., but I was still in full meltdown mode. Then I went to CVS to get Kallan some Advil for her fever. I was talking to my best friend Jess on the way and in CVS. I got sippy cups and Advil and went to pay and they told me my credit card was declined. I could not believe it! I was using a card I got right after college that I only use once in a blue moon (when I either get a gift for Ben, or buy something for me and don't want to tell Ben!), so I knew I had plenty of money left on it. I asked the lady what was wrong with it and she said "I don't know. You must have spent too much money and you don't have any left". She was SO rude!!! And of course Ben had not brought his wallet to the hospital, so he had my other credit card and my new debit card was sitting on my kitchen counter. I had two choices at that point. Walk out and loose it in the car, or let the lady have it for being so rude after the day I had had! I chose the better of the two and just walked out. I figured it is a small town and word is going to get out real fast that I had gone off the deep end! :) When all this happened at CVS I was still on the phone with Jess telling her about my meltdown at the chiropractor and she heard everything that happened. She was saying "here give her my credit card number!!!!!". But, when I walked out of CVS and went to say something to her she could not hear me. My phone went out again!!!!!!! Seriously!!!??? So, I just went home. And cried and cried. I really needed some sleep.

I ended up getting my phone to work and called Ben to get Advil. And then my sweet friend Joy brought us the best dinner, which was so needed and so appreciated! We had not eaten in over 36 hours!!! Ben is still talking about how good Joy's tacos were!!!

I cannot say enough how incredibly blessed we are to have such incredibly amazing friends at the lake. They were all calling and texting constantly to check on us and willing to do anything to help. Not to mention all the prayers they have said for us. Our new friends Kevin and Melissa Snell let me bring Kallan in for adjustments (he is a Chiropractor!!!! A really great one too!!!!!!!!!!) because Ted, our regular chiro was out of town and did not charge. It seriously helped me so much to be able to continue her adjustments. I had skipped it the day she had the seizure because I knew Ted was out of town, so it was so important to me to get her adjusted and it gave me some peace of mind. Then there is my sweet mom. What would I do without her. I really cannot even imagine. She stayed with me all day this week because I was scared to be alone with Kallan in case something happened. She helped me get ready for a party I had planned at my house and helped me play with Kensley because I so did not feel like playing the part of the wicked queen while she got to be the princess!! :) I love you mom!!!

So, as of now it has been a week since her seizure. She was sick for the next three days. Very sick. I ended up taking her to Dr. Bassett, her pediatrician because she was waking up at night a lot and every time she did I would have a heart attack! It turns out she has Coxsackie Virus, which can make kids very sick and could definitely explain the febrile seizure. Which was good to know, but did not eased my anxiety at all. I am doing better this week during the day, but I turn into a paranoid freak at night. My anxiety is a 12 out of 10. I have a video monitor that I am borrowing from Leslie while I wait for our new one to come in and that helps, but I am still just so worried and scared it will happen again. I am not proud to admit this, but I am still giving her Advil in the morning and at night every day just in case. It is the only thing that keeps me sane! Oh! I forgot to mention Kensley had a high fever and was sick the weekend before Kallan's seizure and then this Friday she got one again!!! So, that is why I am still giving her the Advil. If Kensley's came back Kallan's may too. At some point I am going to have to let her go to sleep without Advil though. Wish me luck.

I guess the a thing is that now we know what a seizure looks like and know how to respond. We know you wait until it last 5 minutes to give her the medicine and if it lasts 10 call 911. So, if or when it happens again we hopefully will not have to go to the hospital.

Once Kallan started feeling better last week she has been the happiest sweetest baby in the world. Just like normal. She is even more attached to me than before though. She is always in my arms or lap and gives me lot's of sweet hugs and kisses! I love it! She is taking more and more steps every day and saying almost two new words a day, or new sounds that animals make. Today when we were outside she pointed at the trees and said in baby talk, of course "bird.....tweet tweet". It was so cute! It is good to know she is still doing great developmentally. Let's pray is stays that way.

Also, please pray this was an isolated incident and for a good trip to Cincinnati. I pray they find nothing in the EEG and nothing new on her MRI and maybe he can put my mind at ease just a little. I am not sure anyone can do that though. I don't know how other mother's of TSC kids do it.