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......

April

I am not doing the best job at keeping up with this blog. Since we got the good news we have just been enjoying life for a little while. It has been nice. I have truly enjoyed my sweet baby girl for the first time since she was born. I finally look at her and feel pure joy instead of sadness and hurt. She has turned into the smilingest (not a word, I know), happiest baby ever. You just look at her and she turns inside out she smiles so big. I cannot even begin to describe how much it melts my heart. She is so freaking cute! Everywhere we take her people freak out over her and then she smiles at them so big and they just melt. She has this ability to make people feel so special. Everybody thinks she loves them the most because she looks at people with the most loving eyes. I don't tell them that she looks at a lot of people like that. :)

We started taking Kallan to the Smith's Family Chiropractic about three weeks ago and it has been so amazing! She is a changed baby! We started taking her because the Chiropractor Ben goes to told Ben he knew he had heard of TSC before and then showed him a video of a 10 year old boy with a severe case of TSC. He could not walk or talk and was having seizures all day long. He started going to the chiropractor and is now walking, talking and seizure free. He is doing so good that he actually lead the TSC Walk for the Cure in his town a few weeks ago. I was so excited about this story! It is such a amazing success story and to be able to be proactive in a natural way for Kallan's TSC makes me feel so good and gives me hope that we can prevent some struggles. I am all for trying natural remedies and avoiding drugs if at all possible. I was really nervous on our first visit, but Kallan loved it! She smiled and gooed at the doctor the entire time. He just puts light pressure on her spine and makes sure everything is in alignment so her nervous system can function properly. Kensley and I are being treated as well and we both love it! Since we started our adjustments Kallan has started sleeping through the night, has a lot less gas and fussy spells and has become the happiest most chilled out baby. I am hooked!!! I would highly recommend it to parents with normal babies to try. It is so good for them. I am so hoping that Kallan can have huge success with this and can become an advocate for chiropractic care for other kids with TSC.

Also, in April we had a really great Easter. We had a crappy Thanksgiving, Christmas and New Years because we were so worried about our baby, so we decided we were really going to enjoy and celebrate Easter. My best friend, Jess came in town with her boyfriend Patrick. We took Kensley to the aquarium for the first time with Jess's sister Jennifer and her son. They had the best time. Then the next day there was a big Easter party/birthday party for Jennifer's twins. It was so much fun! Jess got to meet Kallan for the first time. Kensley had the best time on her Easter egg hunt. That night Ben and I met Jess, Patrick and some friends from high school and is was the most I have let loose and laughed in a long time. It was great therapy! Jess and I only get to see each other a couple of times a year, but when we do it's like we never missed a day. Two degrees, a lot of crappy boyfriends, several moves, many jobs, a marriage, kids, etc.. later we are still the same two crazy girls we were when we met in the 5th grade! We bring out the best......or maybe the worst in each other!

Right now we are in Lake Havasu, Arizona visiting my Aunt and Grandmother. It is a 12 hour day of traveling. It is not an easy trip alone and then adding two kids to the picture really makes it challenging! But, my kids were absolute angels! Kallan slept the entire flight to Vegas and Kensley just sat there and watched a movie and talked to us. I could not believe how good they were. Let's hope for a repeat on the way home! Then we had a two and a half hour car ride from Vegas to Lake Havasu and they both did great on that. Kensley slept, but Kallan was getting over the whole traveling thing and cried a bit, but not too bad. When we got to Aunt Jackie's I gave the girls a bath and went to find their jammies and realized I left their suitcase with all their clothes at home. Oops!!! I swear I am loosing my mind! No worries, we took a trip to Dillards and got the girls some clothes! Luckily we are good shoppers. Kensley and Kallan included. We are having a good time here just relaxing and spending time with family. Kensley LOVES my Aunt Jackie and Uncle Tom and Kallan is LOVING her Gigi (my 92 year old grandmother)She gives her the biggest smiles you have ever seen. It is so fun for me to get to bring Kallan out to meet them.

We are getting ready to go back to Cincinnati on the 12th of May for another MRI. I am so nervous about it. I just don't want our good news to be taken away. When Kallan had her first MRI she was only 1 day old and babies have a lot of water on the brain when they are that little, so it makes the MRI hard to read. I am so worried more tumors are going to show up on the new MRI. Even though the doctor was confident that if more did show up and they probably would, it would not be many and she would still be considered a mild case. I just really don't want there to be any more and I hope that the big one has not grown any. Please pray for no new tumors, or very few and that the Sega has not grown. I think that if I can make it through this MRI and we get no new bad news I will be able to really relax for a while. We have been on such a roller coaster of emotions so if things go like they have been we are due for some bad news. Let's hope that cycle is broken and we are on a good news streak! I feel deep down like it is. I just have to be cautiously optimistic.

I promise to update the blog right after Cincinnati this time and not wait two weeks to do it. I feel like our life is going to settle down a little bit after that. Ha!!! We will see!

We are getting very close to the date of the walk and so excited about all the people who are coming out to walk with us. We have a long ways to go in our fundraising, so please help if you can. No donation is too small. We decided we are going to have to extend our fundraising efforts beyond the walk because we just ran out of time with things being so crazy lately. We continue to be so touched by peoples acts of kindness in helping us with our journey to find a cure and we are so thankful for all the support we have received from friends and family.

Cincinnati

We finally made it to Cincinnati on Tuesday and had our appointment at Cincinnati Children's on Wednesday. We had just had the best weekend with family. Aimee and Jim had come from California to visit and Brian and Laura came with their girls. Kallan fell in love with Aimee! It was so sweet. She would give her the biggest smiles and look at her with such a loving expression. It was hard to go from having so much fun then back to the stress of worrying so much about our sweet baby. Our mood on Tuesday on the way to Cincinnati was very somber. It had been a nice break going 6 weeks without seeing any TSC doctors. It was back to reality. But, we tried to make the best of it that we could. Kallan was a perfect angel on the flight. She woke up for about 5 minutes and gave us some smiles and went right back to sleep. After we got checked in we got a great recommendation to a good steak house and tried to enjoy a nice dinner with just one child. We were both so nervous it was hard though.

The next morning we got up and were on our way to Cincinnati Children's to visit the number one TSC doctor in the world. We were impressed right away just by how nice the building was and were even more impressed when meeting the staff at the TSC Clinic there. Everybody was SO nice! We got checked in and went back to our room to wait on the doctor. Kallan was beyond fussy! She was so gassy and stiff as a board. I was actually glad she was like that because we always freak out when she does that because we think it could be a seizure and it was a perfect opportunity for the doctor to see her doing that and either identify it as a seizure, or just normal behavior for a gassy baby. Turns out she is just a normal gassy baby! Whew!

When Dr. Franz, the TSC doctor, walked in I liked him right away. He has the best demeanor and was so friendly. He asked us a bunch of questions and then looked at the MRI we had done when she was born. Within 5 minutes of looking at the MRI he told us more information about Kallan than we had ever heard. He saw what other doctors had told us was a "SEGA" and told us it could be one, but it may not be. He won't know for sure without having other MRI's. If it grows it is a SEGA. He then told us if it is a SEGA she may not need brain surgery. She may be able to shrink it with the new drug they are doing the clinical trials on. He runs the clinical trials and was very knowledgeable about the drug. He also told us she has several subpendymal nodules. These do not cause seizures or any cognitive delays. And she has only 2 or 3 Tubers, which are the ones that cause seizures and cognitive delays. This was absolutely great news to us!!!! The tubors are the ones that cause the most problems and the fact that she does not have many at all (some kids have hundreds) is beyond great news! Dr. Franz said she had a "good looking brain". We could not believe he said that! He showed us some MRI's of kids that have severely effected brains so we could compare them to Kallan's. And Kallan does have a pretty good looking brain compared to other ones we saw. He also told us autism and mental retardation should not be an issue. In fact, with the therapies that will be available to her, she will not even be delayed cognitively. When I asked him if he thought she would have infantile spasms (the seizures we are so freaked out about and cause the most brain damage) he said he couldn't say she would not for sure, but he did not believe she would. He had us fill out the paperwork to get the seizure drug she will need in case she does have them though. That way if she does have them we know exactly what to do and can have the medicine she needs within 24 hours. It is a huge relief to us to just have a plan in place.

She seems to have a very mild case of TSC and will walk, talk, laugh, play, go to school and live basically a pretty normal life. We were so relieved we just bawled. I wanted to give the doctor the biggest bear hug ever, but I did not want to freak him out! I have prayed and prayed since Kallan was born that a) she would have a mild case of TSC and b) that she would not have a lot of tubors and my prayers were answered. Last night when I said my prayers, instead of asking for anything I just said "thank you, thank you, thank you...Amen." I did not ask for anything. Just thank you. I finally don't feel like my strong faith that she is going to be ok is just denial or ignorance. It is the best feeling. Thank you so much to all my friends for all your prayers. We have felt them and they are working. The power of prayer is amazing. Without our friends, family and faith we would not have been able to be as strong as we have been. It is comforting to know how many people are praying for us.

I cannot say enough good things about Dr. Franz. He was incredible. We have decided Kallan will treat only in Cincinnati. Dr. Franz was so confident and knowledgeable. We finally found a doctor that knew more about TSC than Ben! But, he was also so caring, empathetic and even funny. He joked with us that if we did not want Kallan he would take her because she was so cute. And kept saying that we needed to keep her away from his staff because they were all getting baby fever from seeing her. After spending over an hour with us he took us to some of the other rooms to meet other kids with TSC, so we could see how well they were doing. One girl was 16 and was about to graduate from high school a year early. And there was an adorable 3 year old little boy in the other .room that was having occasional seizures, but was right on track developmentally. I cannot even describe how good this was to see!!! It gave us so much hope and happiness for Kallan. She is still going to have some struggles and have many more doctors appointments and therapies than other kids, but she will live a full normal happy life!!!! What more could we ask for? Kallan is going to teach us more about living life to it's fullest and appreciating the life that God gave us than we could

ever have learned without her.

We go back to Cincinnati on the 12th for another MRI. Please pray that the "SEGA" has not grown and that a lot more of the little tubors don't show up. New tumors will not grow, but because babies brains have so much water in them when they are born all the tumors may not show up in the MRI. He said even if more do show up it won't be a ton and she will still have a mild case, but obviously I just don't want any more to be there.

We are getting excited for the walk on May 15th. We are so touched by all our friends generous donations. Our fundraising efforts are more important than ever because of the drug they are working on that will shrink the tumors on her brain. This is what could keep her from needing a brain surgery. Ben and I are working as "guest baristas" at the local coffee shop at the lake called The Daily Grind on a Saturday in April and half of all proceeds will go to the TSC Alliance. I will post the exact date when we get it set in stone. And Richard at Classic Wines is doing a wine tasting for us to raise money for Kallan/TSC. Again, I will post that date as well. It should be a lot of fun!!!

First Smiles

As you can see from the pictures, Kallan has started smiling! She smiles so big all the time! It is the sweetest thing I have ever seen. It melts our hearts and makes it all worth while. If she just smiles like that at us every day we feel like we can keep going and fighting. This week, Ben was walking out the door to go to work and went to kiss me and Kallan goodbye. When Kallan heard his voice she absolutely lit up. It totally made Ben's day. He left the house more motivated than ever.

Kallan now smiles every time she sees me and gives me the sweetest looks. Sometimes I think she believes in me more than I believe in myself to take care of her. She is also starting to try to talk to us. She works so hard to give us a goo. It is a really good sign that she smiling and trying to make sounds. She is developing exactly like she should so far! We talk to her as much as possible and try to give her lot's of stimulation. She is so affectionate, which is also a good sign.

We have also officially been working on the fundraising for a week now. We have been blown away by our friends' generosity. We cannot even begin to express in words how touched we are by the selfless acts of kindness shown by friends and family that have sponsored Kallan's Walk for the Cure. We are truly Blessed.

Ben and I have found that we are only a degree or two away from many of the Georgia legislators in Washington, D.C. that the TSC alliance is currently lobbying for support of a fifteen million dollar allotment this year for TSC research through a bill that funds research for rare diseases. If any of our friends have a relationship with a Congressman or Senator, we would be indebted to you if you would let us give you a letter to deliver care of you for supporting the request for TSC funding

Each day is a journey into the unknown. Many say that the worst thing about TSC is the not knowing and the waiting, but we are choosing to enjoy each moment and lean on our faith in God for watching over Kallan and giving us the strength to support her no matter what waits around the corner.

TSC Walk For A Cure

http://www.firstgiving.com/kallanwindham

This is my fundraising page for Kallan. We are having a Walk for the Cure on May 15, 2010 in Marietta, Georgia....... If you are interested in walking please let me know. We would love to have you on our team! Whether you can donate or not, please read Kallan's page and raise awareness for this awful disease.

God Bless and Thank you.

Our first family outing, DC and more

Ben made it to Washington and had a really successful trip to the National TSC Alliance annual board meeting. He met a lot of really nice people whose children have TSC and they gave Ben a lot of helpful information and support. I think some of the people there were kind of freaked out by Ben and his ambition :). I love it! Some were very supportive of his mission and motivation and others were not. They have seen so many people just like him with big dreams and are all gung ho until they get burned a couple of times and they loose their motivation. They don't know Ben. Ben has been burned and told no plenty of times in his life and it has never stopped him or discouraged him a bit. He may get down for a minute, but he always bounces right back.

Before Ben got to DC several of the people from the Alliance went to visit Senators and Congressmen to try to convince them to sign a rare diseases bill that is about to come across their desk that would give TSC $15 million in 2011. He learned that they could not get in to see 2 of our congressmen and Saxby Chambliss, a Senator. So, when Ben got home he called a good friend of ours who knows the two congressmen very well and she told Ben to get her a letter telling them everything they need to know and she will hand deliver them and get them to sign our bill. Then on Saturday Ben was driving around just killing time while I was hanging out at home with Beth and Tracy. They had come to visit Kallan for the first time. So, Ben looks over and sees a car with a license plate that says "U.S. Senator" on it. So, what does Ben do......he follows him!!!! Lucky for Ben the car pulled over into a gas station a few miles down the road. It was Saxby Chambliss!! Ben went into the gas station and bought a water so he would not look like a total stalker and then went up to him and made some small talk with him. He lead in telling him I went to college with his son and then did some name dropping of lobbyist that they both know. Then he went into his story about Kallan and told him he needed him to sign our bill. Saxby was so nice to Ben and told him to write him a letter telling him everything he needed to know and have the lobbyist hand deliver the letter to him. He then told Ben he would keep our family in his thoughts and prayers. I was blown away that Ben did this! How many people would want to walk up to him and ask for his help but would never have the guts to do it! Ben never even thought twice about doing it. It was for his daughter and he will do whatever it takes. The man is afraid of nothing!

On Sunday we decided we were going to make the effort to make it to church. We have found a church at the lake that we really love and they have been so incredibly supportive to us during this hard time in our life. We especially love the preacher and his wife, Barbara. They came to visit us after the baby was born and prayed with us. We were both pretty emotional at that point and they really helped us come to terms with Kallan's disease and help us with the why me's that we had. I told Pastor Lee that I felt like since we have been going to church consistently and really trying to be better Christians more bad things have happened to us than ever before. I was so frustrated. He never tries to act like he has all the answers, but he offers his take on why he thing happen the way they do. He told me that the reason God lead us to that church was because God knew we were going to have these struggles and he knew we were going to need our faith to be strong to get through it. I had never thought of it like that! That answer worked for me. It really made sense of it all to me.

I was so proud of us. We all got showers and baths, I did not get my hair dried, but I did get some make up on! We got out the door and to church almost on time! I am still struggling with getting two kids and myself ready and out the door. Two kids is a whole new world - holy cow! I took Kensley to her room and I sat outside and listened to the sermon with Kallan. I love it when you go to church and you feel like the preacher knew you were coming and prepared a sermon just for you. The sermon was all about obstacles in our lives and keeping our faith strong when things don't go the way you want them to in life. It was exactly what we both needed to hear. It was so great to see everybody and show off our sweet baby. Everybody was so excited to see us and so nice and supportive. I feel very lucky to have found this church when we did.

Then we went to Great Waters for brunch and I spent the entire time in the bathroom! First I had to go, then Kensley had to tinkle, then Kallan pooped, then Kensley had to poop, then Kallan pooped again!!!! Oh my gosh!!!! Again, the two kids things is as some people say "rocking my world"! It was really nice to get out of the house and feel somewhat normal again. Kallan is still doing great. She is starting to actually smile and us. Not just when she passes gas. It makes it all worth while when she looks at you with that sweet face and gives you the biggest smile. I will do anything in the world for her as long as she just keeps smiling at me like that. We are still paranoid that every move she makes is a seizure, but I think we are just that....paranoid. It is so stressful to hold her or feed her when she has gas because she grunts and jerks and turns red in the face and we both sit there looking at each other saying "was that a seizure" "oh that had to be one" and then the next thing we know she poops and she is fine and we are always so relieved. I never thought I would be so excited every time my baby poops! I guess that is what they mean when when they say celebrate the small things and enjoy the good days.

Kensley is still doing great too. She has been such a sweet girl since Kallan was born. She can mess up a house faster than a tornado, but she is happy and having fun so I just let her go and clean up when I can. She LOVES to hug and kiss on Kallan all the time. It is so sweet. She loves Kallan so much. She tends to love her even more when I am not holding her though. She is very needy of my attention and knows how to get me to have to put Kallan down to help her. I can't complain though because she is not pitching any fits and is just so good.

Yesterday was my first day with both girls all by myself all day and we did awesome!!!! I have been so spoiled having Nene (my mom) around so much, so I was very nervous. Both girls were so good! It was like they knew I needed them to be extra good to build up my confidence. It was such a nice day so we played out side and went to visit Kensley's new BFF, Claudia. Then we went home, ate lunch and all three of us took a nap together. I even got a shower in AND brushed my teeth and made dinner for Ben (just a sandwich, but it was still dinner). That is a very successful day in my eyes. Funny how my life has changed. Success used to be all about closing loans and bringing in new accounts to the bank. Now it is managing to keep the kids alive, healthy and happy all day while finding the time to shower and brush my teeth.