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!

MRI Results

We finally talked to Dr. Franz's nurse. I have been a basket case all day waiting!!! Waiting is the worst! The news was that there was not really any new news. Which is good. The tumor we are watching has not grown. They are still not sure if the one tumor we are watching it is a SEGA (the kind that grows) or just a nodule (the kind that does not effect them). We will just have to keep checking it every three months. No fun! It also looked like she may have a tumor in her eye that we have to go have checked at the eye doctor. I was concerned about her vision, but she said the tumors in the eye very rarely have any effect on them. They just have to be monitored. We have to go back at the end of June for a check up with the doctor and he will go over the MRI in more detail then. Until then we just have to make sure she is doing well developmentally and not having any seizures. Doctors appointments are just a constant way of life for us these days, but as long as things keep going well I will not complain.

Ben has made friends with a girl in Australia who has a daughter a few months older than Kallan with TSC. That baby is not doing well at all and has been in the hospital for a while now with uncontrollable seizures. I am praying so hard for this baby. It breaks my heart to think about what they are going through and at the same time it makes me realize how fortunate we are. By the grace of God we go....

Off the subject, but I just want to clarify because it seems that everyone is pronouncing Kallan as Kaylan. It is not that. It is pronounced like Allan with a K. Kallan. Which as I have mentioned before means powerful in battle.

And a quick side note that I think is really cool..... There is a girl who we have gotten to know that lives out here at the lake with us and goes to our church who has two little girls named Kensley and Callyn (pronounced like Kallan)! How crazy is that??? They are both such uncommon names!

The walk is tomorrow! Thank you thank you thank you to all who have donated. I cannot say that enough. We have got to find a cure for this awful disease. We just have to. It is my mission. Without money there will be no cure. So, again thank you.

Cincinnati

We went back to Cincinnati on Tuesday for an MRI for Kallan. It was not quite as easy as I thought it was going to be. Kallan could not drink any milk after 5 AM and her appointment was not until 11. I got up at 4:30 and fed her hoping it would help her not be so hungry when she woke up, but I think it just made her more hungry! That totally backfired on me! She was so hungry and MAD as heck that I would not feed her. It was so hard. She kept looking at me as she was screaming bloody murder like she she was thinking "you know what I want, so why won't you give it to me!". She cried for an hour in the hotel room while we were getting ready and the whole way to the hospital. Finally, she wore herself our and went to sleep.

Once we got there I went to a room with Kallan for the nurses to put her IV in so they could give her fluids and sedate her for the MRI. Ben stayed in the waiting room because he was not allowed in the MRI room because he has metal in his body from being shot with a pellet gun when he was a kid. I thought it was going to be a pretty easy procedure, but it so wasn't! The nurse could not find a good vein to stick the needle in. She stuck her the first time and Kallan cried so hard. It did not work, so she tried the other hand. It still did not work and Kallan was beyond upset at this point. It was the most painful thing to watch as a mom. Then they took her into the MRI room to try again. They stuck her in her foot this time and it STILL did not work. Kallan was crying harder than I have ever seen a baby cry and I was crying too by this point. I looked at the nurses and told them they had one more shot or we were calling it off for today and would go back the next day and try again. I was NOT happy. I realize they were trying their best, but my baby was inconsolable and it was cruel to keep sticking her with needles. So, they took us out of the MRI room and let me get Kallan calmed down a little. Keep in mind she is still starving. Then they came back and told me they were going to give her laughing gas to get her calmed down so they could make sure to get the needle in properly this time. They brought in the anesthesiologist and he gave her the gas, which calmed her down immediately. Within minutes they got the needle in and got her sedated. That is when I just lost it. I started bawling. It was so hard to see my child in so much pain and a sobering reminder of what she is going to have to go through for the rest of her life. It is just so not fair.

Then I went and sat in the room with her while she was having the MRI. She was perfectly still, so I knew she had no idea what was going on, which was comforting. All I could see was her pacifier moving because she was sucking it so hard. I just sat there and prayed and prayed that the one tumor has not grown and nothing new that is bad shows up. I feel like our life has been such a roller coaster ride for so many months now and I am hoping that we are not due for more bad news since we got good last time. It just seems like that is how it has been lately. But, after lot's of praying and getting myself calmed down I started to feel better and more positive again. I have to think positive and stay positive. Being negative does not do me a bit of good. Nor, does it help Kallan in any way and that is all I want is to help her and make her life better.

After the MRI we went to a recovery room filled with other kids coming out of sedation. Kallan woke up right away and the first thing she did was give me a huge smile! That's Kallan for you! Always smiling and so tough. It was so heartbreaking to look around at all the sweet innocent kids have to go through so much. After talking to the sweet lady who's 5 year old little boy was laying in the bed across from Kallan's I realized how much worse we could have it. Her poor boy had been sedated 89 times in 5 years. He had 9 major birth defects and had a permanent catheter and feeding tube in at all times. It just broke my heart. She said it was so hard because they are always at the hospital for various reasons, but her boy was so full of life and his will to live the best he could made it all worth while. Kids should be exempt from having struggles like that. It is just not fair.

Now I am waiting for the results. It is the most anxious I think I have ever been. I am a basket case. I just don't want our good news to be taken away from us. The waiting is so hard. We were supposed to hear something from our doctor today, but it turns out he was sick and did not make in into the office today. TORTURE!!! I am just relying on my faith to keep me strong and get me through the day and hoping and praying for the best.

The walk is on Saturday and we are excited to see all our incredibly supportive friends that are coming out to walk with us. We are almost halfway to our fundraising goal! We are very excited about that.

Lakeside Church is doing a fundraiser for us at The Daily Grind on Saturday, May 29th. We are so honored and beyond appreciative that our church is doing this for us. They could have picked any charity in the world and they chose us. It means so much. We will be there helping them make and serve coffee and Kallan will be there too. If you live at Lake Oconee or will be visiting that weekend for Memorial Day weekend PLEASE come buy and get a cup of coffee. Half of all the proceeds will go to the TS Alliance.

I will update again as soon as we get some news from the doctor......