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.

Happy Holidays!

What a difference a year makes. When I think about the holidays last year I remember Christmas day being awesome and so much fun with Kensley, but the entire rest of the time was filled with sadness, worry, depression, more sadness and denial. It all started the day before Thanksgiving when I got the call that there was a "mass" on my babies hear that they saw in a 3-D baby Ultrasound we did. Then we found out it was Tuberous Sclerosis for sure a few weeks before Christmas. It was hands down the worst holiday season of my life.

When the holidays came around this year I had no idea how I was going to feel. If the memories were going to make me sad all over again, or if I would be so happy that my precious baby is here and is doing freakin awesome! I did both. During Thanksgiving I did the whole 'wow! Can you believe it was a year ago I got the call about Kallan" thing. Then after Thanksgiving I was on Facebook with Ben and saw a post from a TSC mom of a girl that is just a few months older than Kallan. It said " F U seizures! Leave my sweet baby alone". This poor baby who has been having hundreds of seizures since birth had just had her second brain surgery 5 weeks prior. She was seizure free for the first 5 weeks after the surgery and was becoming verbal (saying da da) for the first time at 14 months. Then out of nowhere has a massive seizure. When I saw this I just lost it. It broke my heart for this sweet baby and for her poor parents. (Please pray for them. Her name is Bella) I was so sad for them, but then a little part of me felt guilty that Kallan is doing so well. And an even bigger part of me felt worry and fear that this is what is to come for us. I brag often about how awesome Kallan is doing, but I have to remind myself that it is still SO early in her life. The first year is probably the most critical, so the fact we have made it 11 1/2 months seizure free is huge. But, a lot of kids seizures don't start until they are 18 months - 2. So, I worry that they will start and this year and I will be hurting like that mom is soon. I hope and pray that is not the case, but I still have to mentally prepare myself in case it does. I was wondering tonight if the worry I have all day every day will ever go away. Not a single day goes by where I don't think about it, or see her make a sudden movement and freak out that it is a seizure only to realize she is just being silly and playing with her sister. I worry every day that this could be the day that all hell breaks loose and I am coming to the realization that I will probably always worry like this even when she is grown. It is just a part of our lives now.

So, I cried for about 5 days and kind of relived all my emotions from last year and felt sorry for myself and for Kallan and then I moved on. I don't break down a lot. I try to keep in tucked in the back of my mind and not let it out if I can help it. But, once every few months I just have to get it out and to be honest it makes me feel so much better once I do. I feel like I can conquer the world again once I am done. And that is how I felt going into Christmas!

We got the house all decorated for Christmas and it looked so good. Then I sent Ben out to get a tree and threatened him that if he came back with another Charlie Brown tree like he got us last year that he would be in serious trouble. It worked! He came home with the BIGGEST Christmas tree I have ever seen. It was 12 feet tall and super fat! It was perfect! He did so good! We got that decorated and it was on. We were ready to celebrate Christmas! I think we made a fire and sat in front of the tree and played with our girls every night the whole month of December. Every time Kallan made a funny noise, danced, laughed, made funny faces, gave love (she bumps foreheads with you when you tell her to give love) or was just being Kallan, Ben and I would look at each other with happy tears in our eyes and say "we are so blessed". Blessed is the perfect way to describe how we felt this holiday season. Happy and Blessed. Not one day goes by that we don't thank God for our sweet baby Kallan and for the fact that she is doing so great.

Christmas Eve and Christmas Day were absolutely perfect. Kensley is at such a fun age for Christmas. She gets so excited for Santa to come and loves making cookies for him to eat when he comes to her house. We had an elf come stay with us for a whole month to watch Kensley and Kallan to make sure they were being good for Santa. His name was Fred. I LOVED Fred because every time Kensley was about to pitch a fit, all I had to say was "Fred is watching" and it stopped the tantrum in it's tracks. I really wish they would make an elf that stayed all year! Kensley was sweet. Instead of telling on Kallan when she was bad, which she can be sometimes! She is a little stinker! :) She would tell Fred how "precious" and "sweet" her baby sister is and he would tell him to tell Santa she wanted a doll and a rattle for Christmas. She LOVES her baby sister. It is the sweetest thing.

Christmas Day was great! We had both sets of grandparents here and the girls had more presents than they could even open in a day! We went a little overboard, but it was so worth it. Kallan is too young to understand Christmas, but she still loved it. Our house has been taken over new toys! The best gift they got was a huge bounce house from my sister! It is awesome! The best gift ever! We blow that sucker up two or three times and day and let the girls wear themselves out. Kallan loves it as much as Kensley. It's all she wants to do now. When she is sitting in your lap she grabs your hands for balance and starts bouncing. She can't get enough of it.

Ben and I left a few days after Christmas to go to California to watch TCU play in the Rose Bowl. It was a great trip! We got to see Aimee for 3 days and best of all TCU won the Rose Bowl!!!!! Go Frogs! It was such an amazing experience to get to go the Rose Bowl. But, by the end I was missing my babies and ready to be home! They were in great hands though. They got to stay with their Nene and Papa (my mom and dad), so I don't know if they even missed me!

So, after a very happy holiday season we are now looking forward to celebrating Kallan's 1st birthday on the 21st! I really cannot believe it has been a year! What a great year it has been!!!! A year of many blessings, that is for sure! We feel like the luckiest parents ever.

Developmentally Kallan is still doing everything she should be doing. She pulls up on everything and is getting very close to walking. She waves bye bye, makes kiss noises when you ask her for a kiss, holds the phone up to her ear and says hello. She says Santa, hello, no no no no (she hears that one a lot), mama, dada (total daddy's girl!!!!), Papa, Tana, bad bad bad (to the dogs), jump, hi, hello. She says woo woo when you ask her what the doggies say. She is a turbo crawler. If you look away for 2 seconds she is gone! And into something she shouldn't be and when you catch her she gives you are cutest smile and says "no no no". Such a stinker!!! She is starting to repeat everything you do. She especially likes to copy her sister! She loves to dance and sing. When I put her to bed at night she will hum with me while I sing. If I stop sing she will hum a little louder to get me to sing again. It is my favorite time of the day.

P.S. Check back next week for my post about the new drug that has been approved by the FDA that shrinks the tumors in kids with TSC. It is huge!

Updates and Cardiologist

As I say with every post....I have got to be better about writing more often, so that when I do write it does not take me so long to write everything! Maybe now that the summer is over I will do better.

The summer ended wonderfully. We took Kensley and Kallan to the beach at Sea Island for a little family vacation. We had the best time. The girls LOVED the beach. Kallan is such a water baby. She was fearless of the ocean. The more the waves splashed her the more she loved it! She and Kensley played in the sand together, we spent a lot of time at the beach and pool, went on bike rides, ate great food and just had the best time. Our girls were both so good the whole time!

Now Kensley has started school and is finally loving it! It took some time, but she has made some friends and it learning so much! She can sing Jesus Loves Me in English and Spanish now!!! Kensley loves to learn, so this school is perfect for her. Her favorite thing to do with me is workbooks. She and I sit there for hours doing her workbooks. She is such a smart little girl! She amazes us with the things she remembers! She keeps me on my toes for sure.

Kallan is doing great too! She is crawling like crazy, pulling up and wants to walk so bad. She just isn't quite there and to be honest I am not pushing it. With Kensley I could not wait for her to walk (especially because she was 14 months before she took her first step!) but with Kallan, I know better. I want her to crawl for as long as possible! And it is so good for there brain development to crawl longer. She is still the happiest baby ever. Everywhere I take her people freak out over how cute she is and Kallan will immediately look at them and give them the biggest cutest smile you have ever seen. It melts peoples hearts! Especially her daddy's! She knows she is cute and uses it as much as possible to get lot's of attention.

She is so easy to take care of. As long as you let her sleep and keep her fed she is happy. Her big thing now though is that she just wants to be included. She wants to eat what we eat and do what do. She cannot stand to be left out! Especially when she is around her sister and cousins. She gets right in there with them and does her best to do what they are doing, which usually results in the other girls getting frustrated with her because she is getting in there way, or messing up what they are doing. Poor Kallan! Although it doesn't seem to bother her a bit! You have to watch Kensley because when Kallan gets into what she is doing and is "bothering her" she will gently, but purposefully knock her out of the way, followed up by Kallan falling over, bumping her head only to get up and tell Kensley off in baby talk. It is so funny - not the hitting her head part, but her telling Kensley off in baby talk. She is starting to get some feistiness (is that a word?) in her!

She is also a wild woman in the bathtub! Holy cow! She gives us a heart attack every night! She splashes and then intentionally dives under the water and comes up choking on water, but laughing the whole time. She rolls over backwards into the water, bumps her head and comes up laughing. Crawls all over Kensley, tries to stand up in the tub, drinks the water etc... She just loves water. She especially enjoys splashing in the dog water bowls! She knows she is not supposed to though, so she waits for you to turn your back for a minute and she is going for it. When you catch her she gives you one of those super cute Kallan smiles as she is soaking wet and so is the floor. She is too cute to get mad at!

Ben and I are doing good! We just celebrated our 7 year anniversary! No, I'm not itching. :) When I look back on the year we have had and all we have been through I am so grateful that I married him and more in love than ever. We stuck together when things were harder than we could have ever imagined and we were both so worried and stressed out. We had our struggles, but we worked through them. We are closer now than we have ever been. I never could have made it without him. He is my rock and I think I was his as well. We still try never to have a down day at the same time, which has gotten much easier as time goes on. We both still worry a lot, but we try to just focus on how great Kallan is doing and think positive about the future. When we see the look of determination in her eyes when she wants to do something it makes it easier to stay positive. That baby is not going to let anything or anybody hold her back if she can help it. She is so strong willed. It is so great to see!!!

We had her cardiologist follow up appointment on Monday and it went well. There was no change, which is good. We didn't really expect the tumors to have shrunk yet, so we were not disappointed when they hadn't. We were just relieved they had not grown! The doctor said even if her tumors never shrink and they just stay exactly the same as they are now for the rest of her life she will be fine. The tumors are not obstructing the flow of blood in her heart at all. Another thing we have to be so thankful for! I still think it is all the prayers. We continue to be so blessed!

Another great trip to Cincinnati

On August 17th Ben and I took Kallan back to Cincinnati to see Dr. Franz for a check up. It was our first time seeing him since her MRI in May. As usual, Ben and I got really nervous in the days leading up to going. We worried that he was going to tell us something bad and the "rug would be pulled out from under us". She is doing so great and we are so happy with her progress, so we are always nervous for all the good to be taken away. I think I say that at least 10 times on every blog post! :) Since we have not gone over the MRI with the doctor yet, we were just very nervous he was going to say a lot more tubors showed up or, he was wrong about something last time. I kind of freaked out a few days before because I caught myself being excited to go and get good news. Last time I went I had no expectations because I did not think he could tell us anything new and then we got great news. So, I panicked that since I was expecting good news we were going to get bad news. Not positive thinking, I know! I try, but it is hard sometimes!

So, we get on the plane and as usual Kallan was a perfect angel. She is so freaking cute and sweet! We got there and went to dinner. Went back to the room and tried to get Kallan to sleep since she had not had a good nap all day. She thought it was party time though! We did not bring her pack and play so she thought sleeping next to mom and dad was the coolest!!! Finally I ended up putting her in her car seat to sleep and she slept ok, but not very long.

We got up early and actually headed to the hospital on time, which is so not like us. Normally we are so late and rushing to get something to eat, fighting over where to eat, how to get there etc.... I felt like I should start a fight just to make feel normal. :)

We were both SO nervous!!! We both had major butterflies in our stomachs.

When we got there we got in an elevator with an a kid who was strapped into a wheelchair that very obviously had some brain damage. It was heart breaking. I hurt so much for him and his parents. And selfishly I was praying "please don't let him have TSC. Please let is be something else. Please don't be going where we are going". But, this time my prayers were not answered. He did have TSC and he did go where we went. My heart just broke for them. It was a real eye opener to see how awful and cruel this disease can be, in person. It makes me feel so many emotions that it is hard to even put into words. I obviously feel so blessed and so lucky, but it also makes me feel fear, guilt, sadness, reality, anger, motivated to find a cure, etc. I wonder how we got so blessed. Why us and not others? Then I remember it is still early and I worry that it could be us one day. Not likely, but who really knows???

Then we got called back into the room. The nurse that did the initial weight, height, bp etc. was awesome! She loved Kallan! She kept saying Kallan was the reason she should not work in pediatrics. She gets too attached!!! It was cute. Then we got to our room and had to go through all the questions and the process of seeing all the people before you finally get to see the doctor. I hate this part!! You see a nurse, a social worker, a records keeper another nurse, somebody from the TSC Alliance came in and then my least favorite of all....the GeneticCounselor. I'm sorry if you are one or know one, but to us a Genetic Counselor is the most pointless career ever!!! They know nothing and can tell us nothing. All they can do is read statistics off the internet. I can do that!!! It is so frustrating to me. Just because Kallan has a genetic disease everywhere we go they throw the Genetic Counselor at us and I have learned absolutely nothing from them. It is a waste of my time. Sorry. I had to say it.

Finally, after three hours of "visits from the others" and a very fussy, tired and bored baby the doctor came in. He looked very flustered when he came in. He was sweating. He told us he was sorry it took so long, but the kid in the room next to us had just had a seizure while he was in the room. It was good to see how emotional Dr. Franz was about it. He very obviously cares about his patients and takes it personally when they are not doing well.

He took one look at Kallan and said, "wow! She is doing well!". He was so impressed at how well she was doing. He said she is advanced for a non-TSC baby, so she is really advanced for a TSC baby. He could not believe how well she was crawling and sitting up. He sat there and held her, played with her and loved on her. He told us there are only so many tests he could do to tell us how she is going to do. Kallan can tell us how she is going to do better than anything and look at her. She is doing awesome!!! That made us feel so good! Of course we think she is doing great, but hearing it from the expert confirms it.

He went over the last MRI with us. There really were no changes from the first one, which is good!!!!! No new tubors or anything unexpected. The one tumor we are watching to see if it grows has not grown and has no activity that suggest it will grow anytime soon. He said there is no way to know if it is a SEGA or not at this point. We just have to keep watching it.

We also went over the genetic test with him. I can't remember if I have mentioned this before or not, but she tested negative for TSC. Which does not mean she does not have it. It just means it is an unidentified gene. We really wanted to know if there was any correlation to that and the severity of her case. We asked the nurses and the genetic counselor and they all said no. They range all over the place from mild to severe. Then Dr. Franz said yes there is a correlation. There is evidence that suggests that kids that do not test positive for TSC 1 or TSC 2 (test negative) typically have milder cases. That was great news to us!!!!!!! It was exactly what we wanted to hear!!!

After we asked our ten thousand questions (and Ben got mad at me for asking questions about BPA being linked to genetic diseases :). For those of you who don't know I am obsessed with avoiding BPA and convinced that it caused Kallan's disease) he told us that our biggest concern with Kallan should be boys. How great is that!!!!! He said that the fact that she has gone 7 months with no seizures is huge. Most kids that have severe epilepsy will have a seizure in the first 6 months. He said if we can make it a year without any then we should rest easy that she most likely will not have severe epilepsy. He said he can't say she won't have a seizure and because 90% do, but he thinks that if and when she does they should be very easy to control. He says of course he cannot guarantee anything, but based on his experience, how well she is doing and where her tumors are she is going to have a great life. Ben and I tried to get something bad out of him and he had nothing. I think he was slightly annoyed by the end because we are so ultra paranoid and wanting constant reassurance even though Kallan is doing so great and then there were kids in the other rooms so severely affected and suffering so much.

So we left on a mega high again. Counting our blessings. Until on the way out we Looked back towards the waiting room and saw more severely affected kids and instantly felt so much hurt for them, so our high was somewhat short lived. We feel like something has got to be done. They are not doing enough to find a cure for these poor kids. I swear I feel like my "calling" is to start a non-profit and do some serious fund raising for TSC and genetic diseases. Ben and I are very serious about starting a fund to for kids with genetic diseases to send them to the best doctors for their disease. We are so fortunate to be able to go to Dr. Franz. He has changed our life and has changed the lives of so many others who see him. We believe seeing the best doctor for your disease is SO crucial. Maybe once Kallan gets a little older I will have the time to put towards my new passion. I think I will really do it though. I think about it constantly.

After our appointment we met an old college friend for lunch just outside of Cincinnati. It was so great to see her and so nice to know we have a such a great friend in our city that has become our second home. I am hoping we can get together again when we go back in February!

Another random bit of good news.....on the way to Cincinnati I lost my brand new super cute sunglasses while going through security. I didn't realize it until we got on the airplane. I was so upset! So, I went online and filed a lost and found claim through Hartsfield and guess what!!!!!!! They found them 2 days later!!!!! How amazing is that??? They did not even have a scratch on them either!

So, all in all Cincinnati was a great trip! A long two days, but so worth it. Kallan was such a champ. She got very little sleep and only 10 minute naps here and there and smiled the whole way. She did not fuss once. So many of our prayers have been answered. We still need lot's of them, so please don't quit praying for us because they are working. Now we have to pray that Kallan continues developing perfectly and stays seizure free for the first year. Once we make it there we will start praying for next year. One day at a time. I know I say this so much, but it's true. We are so blessed. I don't know how we got so lucky, but I could not be more glad that we did. She is our precious little angel and I think she is going to make us all better people just by being Kallan. She is amazing and does not even know it yet! Although she does know she is cute!!!

Just to show you how excited we get when Kallan does something....today in the car Kensley said "MOM!!! Kallan just yawned!!!! That is so great!!! She knows how to yawn! Kallan, I am so proud of you". How cute is that! Even Kensley is cheering her on every step of the way.

She also told her daddy that Kallan needs to be a skunk for Halloween because she is a stinker and poops in her diaper. :)

Also, Kensley started school a few weeks ago and it is going great. Well, this week was great. She did not like it at all at first, but she is getting better each day. She just misses her mommy. She is my best little buddy. She would love it if only I could go with her every day! We LOVE the school!!! She is going to Redeemer Academy. We are so impressed with how much she has learned already. Her favorite activity is Spanish!! Which makes me very happy since it was one of my majors in college!

We are leaving tomorrow to go on a family vacation for a week! I am so excited! We are going to Savannah for the Baptism of a very good friend's baby, then on to Sea Island!!!! I sure I will have some great pictures to post!

Busy Summer

It has been such a busy, but fun summer! Since my last post we had our Coffee for the Cure event at The Daily Grind. It went way better than I ever expected!!! We raised over $2500!!!! I could not have been more pleased! All our friends came and we even made some new friends there! It was a lot of fun. I cannot thank Thom Morgan, the owner of The Daily Grind, enough for doing that for us.

Other than that we have been doing normal summer things. Going to the pool (Kallan loves the water!), out on the boat, having friends over, and best of all was Kensley's 3rd birthday party! We had a blowout! It was so much fun! We had the big blow up dual lane slip n slide and every blow up kiddie pool that Wal Mart sells in the back yard. I think the adults had just as much fun as all the kids. It was so fun to have all our friends over and for everybody to get to see Kensley turn 3 and how well Kallan is doing. It was a big celebration of our girls. I can't believe how big they both are already.

Kallan just turned 6 months old and she is doing awesome! I am so reluctant to say how lucky I feel because it is still so early in the game with Kallan and I know that. I know things could change at any minute. But for now she is doing everything a little 6 month old girl should be doing and then some. She is rolling over, blowing bubbles, babbling, sitting up, getting up on all fours and rocking - determined as heck to crawl. I love seeing the look of determination in her eyes when she is trying to crawl. It makes me realize she is not going to let anything hold her back without a serious fight. She is so strong and gets so proud of herself when she does something new. And she is the happiest baby I have ever seen. She smiles all day every day. All you have to do is look at her and she gives you the biggest smile ever. And she does not just save all her smiles for me. She smiles at EVERYBODY! Everywhere we go she smiles at people. She makes peoples day when I take her to the grocery store. They always tell me to not tell them that she smiles like that at everyone. They want to think it is just them. She ADORES her big sister and gives the biggest smiles to her......and her daddy. Daddy finally got a daddy's girl. She loves him and never takes her eyes off of him when he is around. It is so sweet. And Kensley is still the best big sister. She always holds Kallan's hand in the car, no matter what. She holds her and feeds her and loves to dress her up! Every time I walk out of the room for a minute and come back Kensley has put a something on Kallan - hats, crowns, headbands, flowers, cowboy hats, sunglasses and best of all her swim goggles! It cracks me up and Kallan loves it to!

I had the people from Babies Can't Wait come out to do an evaluation to see if she was behind in anything and see what therapies we needed to start. The lady told me that if it weren't for her diagnosis she would not even qualify for Babies Can't Wait and she does not qualify for any therapies yet. She is doing way too good and not delayed a bit! I thought that was great news! I knew it, but it was good to hear from an expert. Although it was slightly frustrating because I want her in all the therapies I can get her in regardless if she needs them or not. I don't want to wait until she is delayed to start. My goal is to prevent any delays......God willing.

Oh! I almost forgot! After the last MRI they told us she most likely has a tumor in her eye. I took her to the best Pediatric eye doctor at Emory and after 4 different doctors looked at her eyes they told me her eyes are perfect. She does not have a tumor on her eye! I was so excited! One thing to check off my list. I will take it.

We have a very busy August coming up. We go back to Cincinnati on the 18th. It will be interesting to hear what the doctor has to say. I am hoping he makes us feel all good and confident again. We left there feeling on top of the world last time because he told us how great Kallan is going to do and how lucky we are that she does not have a severe case. While I love hearing that, I know that there is only one person that truly knows what her life is going to be like and it is not a doctor. TSC is such an unpredictable disease and can get ugly quickly. The next three months is so critical. If we can make it to 9 months without any infantile spasms we will most likely be in the clear for her not getting them at all. Which is HUGE because like I have said before, they are what cause the most brain damage. I pray a lot and keep taking her to the chiropractor. Other than that I have no control over what happens. I am hoping all the prayers keep working though!

Kensley starts school in a few weeks! She is so excited to go, but I think once she realizes I won't be going with her she won't be as excited. She is such a mama's girl. She is my best little buddy. I take her to play with little girls her age and she still only wants to play with me. I think school is going to be so good for her. She needs a little socialization. She is very outgoing and social, but not in certain settings. She gets shy, which is SO not her. I am hoping she likes it as much as she thinks she is going to like it. She loves her uniform! It is so cute on her too!

I love my sweet Kallan more than I can express in words. She is such a sweet, kind hearted, loving and happy baby. I try to enjoy every good minute I have with her and constantly hope that it won't be my last. I wish I could say I look at her and only see sweet Kallan and not sweet Kallan with TSC, but I can't. Not yet anyway. Ben and I still worry a lot. We know the reality and we dread having to ever see her suffer in any way. She is so perfect and so beautiful. It is hard to imagine that she could possibly have such a horrible disease. I do go through stages where I worry more than others though. Hopefully Dr Franz will give us more reassuring news after seeing another MRI and we leave there feeling great again. I will let you know......

TSC Walk for a Cure

On May 15th we had the TSC Walk for a Cure. To be honest I was really dreading going. I had no idea what to expect and what I may see there. It had been a long, TSC filled week with our cardiologist appointment and trip to Cincinnati. Even though we got good news from the MRI I was a little down from the week. It had been a humbling reminder that my baby is not a normal baby and she does have this horrible disease. She is doing so well that I almost forget that sometimes.

So, Saturday came and we got up and drove to the Marietta Square. We got super lost, Kallan was screaming, Ben was screaming, Kensley was talking non-stop and I was on the verge of tears! I can laugh about it now, but at the time it was so not funny! My phone GPS was taking us in circles! We were going to be late to our own walk! But, we weren't! We finally figured out where to go and go there just in time to meet our friends who came to walk with us. We were blown away by our friends who wanted to spend their Saturday walking for our daughter with us. Our friends Amy and Ken and their two kids even drove all the way in from Lake Oconee just to walk with us! It made us feel so good to know we have so much love and support. It was so great because a few people who came were friends we had not seen in forever, so we got to catch up as we walked! I cannot say thank you enough to Matt and Carrie Ward, Allyson Clifford, Carmen Alvarez, Ken and Amy Beyer, Lauren Sanders and of course my awesome family who came out and held up the rear with us :)!!! It meant the world to Ben and me. Also, I have to give major credit to my sister-in-law, Laura for raising over $1,0000 on her own!!! I told (not asked) her that she had to raise that much to be able to walk! She likes a challenge so I knew she would do it and she did it and then some! Way to go Laura!!!! And a huge thank you to my sister who raised $500 while working 24/7, flying all over the world and having people visiting her! I have the best sisters in the world! Seriously.

The walk was so not what I expected. It was actually a lot of fun! It was great to see kids with TSC running around and playing. While there were some there that were more severely affected, there were just as many that were doing great and overcoming their struggles. It was fun to meet other families who are going through the same things as us and compare experiences, doctors, etc... One of the coolest things I saw was two kids had seizure dogs....the dogs were trained to detect when the child was having a seizure and alert the parents. We are such dog lovers, so of course we want one! We have two golden retrievers now, so we may have to wait a while. I don't think there is a vacuum cleaner strong enough to handle three!!! There were lot's of fun activities after the walk for kids. Kensley, Hannah and Lilly got their faces painted and they thought that was the coolest thing ever! Kensley was so funny because she would not move her lips when she talked the rest of the day because she thought she had paint on them like lipstick and did not want it to come off. Look at her lips in the pictures!

We came in second for fundraising and I think we would have came in first if we had more time. But, the reality is that we do have more time. Until there is a cure for TSC Ben and I will never stop trying to raise money. It is a yearly thing for us now. Not just for the walk. Although I was very proud of us for coming in second!!! We got lot's of t-shirts because of all the money we raised! Kensley loves to wear her "walk for Kallan" t-shirt. She is so proud of it because she walked for her baby sister. She has no idea what that means and she does not understand Kallan's disease, but she recognized that it was a big deal and was excited to be a part of it.

After dreading the walk for weeks, the day turned out to be so a lot of fun and it was so good to see our friends who came out to support us. We are already looking forward to next year and hope some more people will come out and walk with us!