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.

Cincinnati

Oh what a day! Yesterday we were taking Kallan to Cincinnati Children's Hospital to meet with the best TSC doctor in the nation. They have an amazing TSC Clinic at Cincinnati Children's and even though Kallan is doing so well, we wanted to go ahead and meet with the doctor to see if he could give us any more information and to already be established there, so if things to get bad the doctor will be familiar with us.

So, as always I caused us to be rushing to the airport because I am habitually late, Kallan cried the entire way to the airport and we were both starving. Fun times for the Windhams! We get to the airport, rush to check our bags and we see the flight has been delayed from 2 to 4 due to mechanical issues. That was fine with us. We just took our time getting through security got to our gate and decided to go have a glass of wine. (yes with our newborn, I know) Kallan was sound asleep after wearing herself out crying for so long, so things were going well. Until then our flight was delayed until 5.....ok another glass of wine....then it was delayed until 6.......no more wine, but getting really irritated. So, we decided that if it got delayed again we were going to call it a day and cancel. A newborn had no business being in the airport all day and weather was rolling into Cincinnati, so the longer it got delayed the more likely we were going to get bad weather delays as well. It got delayed until 7. So, we canceled our flight and got our money back. Canceled our hotel, rental car and doctor's appointment. Ben was supposed to leave from Cincinnati to go to DC, so he had to buy a new ticket. We could not get our bags because supposedly they went to Cincinnati on a different flight. Of course, right as we were getting home they called to say oops they were there and we could come pick them up. I just love Delta! (that was very sarcastic!) What a long day! We were so disappointed we did not get to meet with the TSC doctor, but we are rescheduling for March. I will keep you posted! Until then we are just praying Kallan keeps doing well and trying to start raising money.

My amazing husband

My husband who has never been afraid of anything, or anybody continually amazes me. He has never let anyone tell him he can't do something and he can do anything when he makes up his mind to do it. He has done many things that have made me so proud since we have met, but he has really stepped up and has been the most amazing father and husband since we found out Kallan's diagnosis.

The first thing he did was as he was sitting in a doctors office reading a magazine, he came across an article about the new Harrison Ford movie called Extraordinary Measures. The movie is a true life story about a father who's children were diagnosed with a very rare and fatal genetic disorder. He quit his job as an attorney and set out to find a cure for his children. He worked day and night and never gave up and he raised over $100 million and found a treatment for his children's disease. He saved their lives and the lives of many other children. It is such an amazing story. Ben was so moved by the article he read and he went right out and bought the two books about this man named John Crowley. He read the first book in a day. As soon as he finished the book he started working on a letter to him. I mentioned before that we are so focused on fundraising and raising money for TSC. Ben really wanted to talk to John Crowley and find out how he raised so much money so quickly. He finished the letter and Fed Exed it to him his first day back at work. We never intended to hear back from him knowing that he is probably being bombarded with letters just like ours and knowing he is now CEO of a major biomedical company AND just had a movie come out about him the day after Kallan was born. We had just planned to mail him a letter every week until we got his attention and got him to respond. Well, we were wrong. A week after sending the letter Ben got a phone call from John Crowley's secretary and John wanted her to schedule a call with Ben for March 2nd!!!! How freaking exciting is that!!! Think how many people would want to talk to this man, but would not have a clue to go about it. Ben never thought twice about it. He knew he would talk to him. He just didn't know when. I could not be more proud of him! I can't wait to hear how their conversation goes. Ben is so nervous about the call. He does not want to sound like an idiot, so he is preparing lot's of questions and doing a ton of research. I have no doubt that he will impress the heck out of Mr. Crowley!

Ben also got our first donation to the TSC Alliance last week! We were so excited! He had to take Kallan to her cardiologist appointment without me because I had the stomach bug that was going around and had to go to the doctor. It killed me not to be there, but he did great without me and so did Kallan. When he was in the waiting room, in typical Ben fashion, he started chatting with a lady there and told her our whole Kallan story. Ben has so much passion for finding a cure/treatment for TSC and making Kallan a success story that you can see right away when talking to him. He had the lady in tears right there in the waiting room. The next thing he knew the lady came and found him while Kallan was being looked at and gave him a check made out to the National TSC Alliance. In the Memo line it said "your beautiful baby". She told Ben that if he takes that beautiful baby with him everywhere he goes and tells the story just like he had to her - then he will raise that money. Ben and I were both so touched by this woman and she gave us so much hope that people will be touched by our story and want to give. They are so close to a treatment, so every dollar goes a long way when going towards TSC research.

As I write this post Ben is in Washington DC after being invited to the annual board meeting of the National TSC Alliance by the CEO of the Alliance. He called her up to let him know about his fundraising intentions and wanted to get any marketing material they had. I think the lady was blown away by his ambition and realized quickly that this guy is going to be a major asset to the Alliance. During their first conversation she asked him to be on a fundraising committee. I am so excited to have him at that meeting because I feel like we will get all the latest research information first hand. Ben spends SO much time on the internet researching TSC, so maybe this will give us some good information. We hope!

Most importantly Ben has been an incredible husband to me and daddy to our girls. He has really stepped up to the plate with this second baby. He helps me so much. He takes night feedings on the weekends, always gives Kensley her bath and has really become my teammate (cheesy I know!). Kallan LOVES to sleep in his arms, so every morning when she wakes up around 5 I feed her and then give her to him. She will sleep for 4 hours and sometimes more in his arms! I am so against kids sleeping in the bed with us, but I figure if the sun is up it does not count! I can justify anything for sleep. :)

When you marry someone you just never know how that person will act when faced with true adversity until it hits. You can be blown away by the way the handle it or really disappointed by it. I am so happy to say that I have been blown away by how Ben has handled it. He has truly been amazing in every way. Going through this has brought us even closer together. I am so thankful for him and all he does for us.