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.