It's been way too long

It has been WAY too long since I have updated this blog!!! Which means things are good!!! When things are not going well there is more to update people on, so it is a good thing that we have been busy having fun and loving life!

Kallan started her medication in June and has been doing really well on it so far. Although blood tests say her immune system is low, which is the main side effect of this drug so it is to be expected. She has been pretty fortunate with not getting much sickness this winter season. Just a couple of colds. I believe 100% that is do to the fact that we are all under such great chiropractic care. That and she takes lot's of supplements to boost her immune system.

We did have one other awful side effect over Thanksgiving. The second most common one is mouth sores and she had not had a single one until November and she got 8 at one time and two teeth coming in at the same time. It was awful!!! She was inconsolable and could not eat or drink a thing for 3 days. I have never seen a kid in so much pain. It broke my heart. I had to sleep on the floor in her room and calm her down every 15 minutes because she couldn't sleep. But, the good news is she got over it and probably does not even remember it. I do though!!! And she has only had one since November.

We have had two MRI's since the last time I blogged. The first one was in September and we tried to do it in Atlanta to make it easier, but it turned out to be a disaster. Children's Healthcare of Atlanta is so unorganized compared to Cincinnati Children's and then we had to wait over to get results - and they were bad......according to Atlanta's reading of the MRI her tumor had grown. We thought we were going to have to do brain surgery. So, I went and picked up a copy of the MRI and sent it to her doctor in Cincinnati and two weeks later we got great news!!! Her tumor had not grown...it had shrunk!! Atlanta was wrong! Thank God!!! We were beyond relieved to say the least. They also said her blood work looked good. They wanted us to come to Cincinnati in December.

So, the only time we could get in for the MRI and then into see Dr. Franz the next day was December 21st and 22nd, which totally stunk!!! I was so worried we were going to get bad news right before Christmas and ruin it. We were so fortunate to have great friends give us buddy passes to fly there so we did not have to drive. It got us there early though, so as we always do we tried to make the best of our trip. We took Kallan to the Cincinnati zoo and went out to eat at our favorite restaurant downtown. It was fun!

Kallan's MRI did not go so well this time though. She has been doing sedation instead of anesthesia because it was working so well for us, but this time she woke up too early and was rip roaring angry for about 2 hours. It took 4 nurses and me to hold her down. She was kicking and screaming and hitting. So not like my sweet Kallan. I was looking at the nurses wondering what they had done to my baby. They said it happens all the time and next time she can't do sedation. Finally they just sent us home with her still screaming. It was kind of scary!!! I didn't know what we were going to do with her! We just drove her around and fed her handfuls of M&M's my mom had given to her before we left. It calmed her down so we could get her to the hotel and down for a nap. She was still so wobbly and dazed when she woke up! She could not even walk on her own.

The next day we met with her doctor and we were both so nervous he was going to drop a bomb on us. But, he didn't!!! He came in and immediately said her tumor had shrunk and she looked great! I was so glad he did not drag it out! He also told us we were lucky we decided to go ahead and put her on the medication instead of waiting because it turns out after comparing this MRI with the one we had last March she had the beginning stages of hydrocephalus and we did know know it . They could not tell without comparing the MRI's. The tumor was putting pressure on her brain and her ventricles had grown to compensate. That scared the crap out of me because I had very strongly considered waiting to have her start the medication and just have more MRI's to see how fast the tumor was growing. I cannot even imagine how bad the outcome could have been if we had done that! We owe my decision to the power of prayer. One night, in the middle of the night, while praying so hard for a sign we were doing the right thing by putting her on the medication I opened my eyes I could not believe what I saw. The moon was situated in a place where it shown in my window perfectly to where the it lit up a cross in the window. It's hard to explain, but it was there and it was my sign and I knew it. From the minute I opened my eyes and saw it I never looked back or even once second guessed our decision to put her on the medicine. And thank God we did it! We still get freaked out when we think about the what if's. But, her doctors were so pleased with how well she is doing and blown away by how well she was talking. They think it is a great sign she has not had any more seizures. They think they chances of her struggling with them are low. They think she is going to have a great life and that maybe in the next 10 years they will have a new medication for her tumors that is not an immunosuppressant. They also think she will be able to have her own babies one day with invitro!!

The entire appointment was great! It could not have been any better. They said everything we wanted to here. We were so so so happy and it totally put us in the Christmas spirit! We came back and got ready and had the best Christmas ever!! Both girls had so much fun and got some great presents of course.

Now we are just enjoying our girls. They are so much fun. Kallan is so sweet and so loving......and so feisty and stubborn too!!! She wants to do everything herself and you never tell her she can't do something! She has more determination than any kid I have ever met! I love it...most of the time. She hates the word "no" and will remember forever if you tell her "no". She loves her sister and copies everything she does and Kensley loves her right back. They are so sweet to each other.......most of the time. :) Kallan loves her Papa. She is Papa's "buddy" and Loves to play with him. He does not mind all the love either. She also loves dogs and horses! She is my animal lover like me.

We are looking forward to a fun spring and summer ahead. We just got her big annual fundraising event on the calendar for May 5th. It is going to be so much fun this year!! It will be a wine tasting in Cuscowilla. More details to follow!

Good News

We got some good news last week. I took Kallan to the Cardiologist and there is still no change in the function of her heart or the size of the tumors. We wish the tumors would shrink, and they may once she starts her new medication. As long as they stay the same and do not grow she can go her whole life with no heart problems, so we are happy and celebrating some much needed good news.

Kallan starts her new medication on Monday. It has been a long and slightly difficult process getting the medication. First we had to work out the cost and the great news is that Novartis provides help to those starting the medication that are not on government funded healthcare. We originally thought it was going to be costing us over $1,600 a month, but now it will just be $50 a month. That is huge! We are very relieved, although Ben reminds me that even if it costs 100,000.00 a month he would make it work or break into the pharmacy

All the moms I talk to who's children are on the drug say great things about it, thus we are optimistic that it will be the miracle drug for us as well. Our biggest concern is that it is suppresses the immune system which could cause Kallan to be susceptible to getting sick. This worries us because and know that she is more susceptible to having seizures when she is sick. Basically, I will be treating everyone like they are a giant germ. I will go back to greeting Kensley with a hug and hand sanitizers when I pick her up at school just like I did after Kallan's first seizure. The miracle, however, is that this drug will shrink Kallan's SEGA, tumor, so it seems like a small price to pay. While only time will tell the outcome, we are very blessed and optimistic about Kallan's bright future.

Please pray that the medication works and it shrinks her SEGA and that the side effects are minimal. Thank you!!!

Wine Tasting and Winning the Fight Against TSC

We had a wine tasting at Classic Wines on April 15th to raise money for TSC. It went awesome!!!!! I worked so hard to get everything planned and all the auction items together. We had a brand new Electrolux Wine Cooler and a Steve Penley painting that were both donated to us that we got to auction. We also auctioned tons of awesome lake stuff like teeth whitening with Scott Roberts, rounds of golf, microdermabraisons, chiropractic etc.... Richard and Kathy Matthews and Alice Lee at Classic Wines arranged for 4 wine vendors to come to the tasting and donate wine for free. We had a ton of food that I made and Heather at Spillin the Beans made a nice assortment of appetizers.

The night went better than I ever could have imagined. The whole time I was preparing I was constantly thinking "I hope people show up" and " I hope after all this work we actually raise some money for research". Well, I have to say that I was BLOWN AWAY by all the support we received. Absolutely blown away. We have the most amazing friends at the lake. Everyone we knew came and alot of people we did not know came as well. People were so generous. We had one man who came in connected to and oxygen tank and told us he had seen our flyer and went home and read every word of my blog. He drove all the way from the other side of town just to make a donation. He did not drink wine and only took a very small plate of food for he and his wife to share. It was so touching.

One very young girl who works at the coffee shop came up to me one day and said "I do not have much money, but I have a little baby and I cannot imagine what you are going through and I want to give what I can." She handed me all the money she had made in tips that day. I told her she did not have to do that and she insisted that she wanted to. I thanked her and then went to the car and bawled. People amaze me at how generous they are. People that have nothing give always reach from the bottom of their hearts just to give something. It is just so touching to see how supportive our community is.

The wine tasting went very well and was so much fun. We had over 130 people come and we all squeezed nicely into Richard's wine tasting room. The wine was top notch and everybody had a great time. At the end of the night, after our auctions. we had raised over $16,000!!!! I could not believe it! I was hoping for at least $5,000 because the Penley painting was one of a kind and worth at least $10,000. (He painted it just for our event!!! He is such a great guy!!) I would have been thrilled with $10,000, but we went above and beyond that! I was so happy!!! I was exhausted when it was over, but I was very happy! If we still lived in Atlanta there is no way we would have the love and support we get at the lake from all our friends. We are so blessed.

I am looking forward to making this an annual event and make it even bigger next year. I had a lot of men ask me if we had ANY beer that night, so next year I am going to make it a Beer and Wine festival!!! That way everybody is happy!

I cannot thank enough all the people who came and donated money or auction items. I will never forget what people have done for us. It means the world to Ben and me and hopefully it will change the world for Kallan.

If you could not make it, but would like to donate you still can.. Go to www.firstgiving.com and in the search field type in Angie Windham. It will take you to our fundraising page. I thank you all for your love and friendship.

Bad News

Since my last post after Kallan's first seizure, Kallan has been doing well. Although, I am a nervous basket case just waiting for it to happen again. Staying up at night watching the baby video monitor and never taking my eyes off of her. But, she is just her normal happy self. So, when we got in the car for our 8 hour drive to Cincinnati I was somewhat optimistic that things would go ok. I was more nervous about the EEG than the MRI. I truly was not even worried about her SEGA (tumor that could grow) growing.

It was a very long 8 hour drive there. Kallan does not like to be held down, so being in her car seat for that long really annoyed her. Once we got there we let her play a while before making her go to bed. We had to get up at 5:30 the next morning and knew it was going to be a very long day for us and for Kallan. Kallan did not sleep well at all and then at around 5 AM I woke up throwing up. I could not believe it. Of all the days to be sick! So, Ben had to take her to her EEG and MRI by himself. He was so nervous because he knew she would be so fussy from not eating and she always wants her Mama. So, being hungry and not having me there was not a good combination. He did great though.

I was sick for a few hours and luckily it went away by around 9:30. So, I hopped in a cab and went to the hospital. I got there and waited a while before Ben came out. They had just sedated her and he was very emotional. It is kind of scary to watch and he had not had to be there for the sedation before. I assured him she would be fine and we went to get some lunch while we waited. They came to get us when it was over and I got to get see her for her recovery. She was SO happy to see me! She hugged me, laid her head on my shoulder and gave me lot's of love. It melted my heart. The nurses had all fallen in love with her because she was so sweet. They said most kids wake up from sedation crying and very cranky. Not Kallan though! She woke up smiling and playful. They could not believe it.

The rest of the day she was very fussy though. In hindsight we think she was starving. They told us to feed her a light meal and let her rest. So, we gave her some of her favorite snacks and went back to the hotel room. She screamed the whole time. We thought we were going to get kicked out of the hotel. Finally, she took about an hour long nap and Ben and I enjoyed the brief quiet time.

Then we went to dinner where they were having a protest right outside the restaurant. As soon as we sat down at our table Kallan started screaming so loud. Ben grabbed her and ran outside. He said she was screaming so loud the protest actually stopped for a minute and everybody turned around to look at Kallan. Ben was mortified! The manager came over to me and asked me if she had gotten hurt. I told her no she is just starving and explained that she had an MRI earlier that day. The lady was so incredibly sweet. She grabbed some bread and met Ben and me outside. We gave Kallan some bread and got her calmed down. Once she got some food in her she was her normal self again. Thank God! We were both so on edge from being anxious about the results and from her crying all day. She had worn us down! They got Kallan's food out right away and then when our food came she took Kallan and showed her the horses outside while we ate. It was so nice of her and such a relief for Ben and me. We were so thankful for that lady. She was wonderful!!!

That night we got some good sleep and woke up hoping for the best. When we got there and the main nurse came in she told us right away that her SEGA had grown a little, but did not know any details. My heart just sank. I had not really even considered that fact that it had grown. I knew that at some point it probably would, but I just never thought it would come so soon. I was shocked and heart broken. Finally, the doctor came in and confirmed what the nurse said. He said at this point it was not affecting her, but within 6 months to a year it would be putting pressure on the ventricles, which would cause hydrocephalus (water on the brain) and would kill her. Hearing these words coming out of the doctors mouth was terrifying. He told us our only options are major brain resection brain surgery, or the new medication that just got approved by the FDA in October that not only shrinks the SEGA, but all also the tiny tubers that cause the seizures. This is the medication we have been doing the fundraising for because we knew we may need it one day. He highly recommended we avoid brain surgery if we can and thought we should start the medication right away so the tumor would not continue to grow any more. Of course, we were concerned about the side effects, but were pleased to hear they are fairly minimal. The worst side effect is that it lowers their immune system making them more prone to infection. But, it does not alter personality in any way and actually helps cognitively. So, it looks like I am going to be even more of a germaphobe than I already am! Scary! One other good thing about the drug is that not only does it shrink the large tumor, it shrinks all the small ones that cause seizures too. That is a major plus in our mind.

He also told us that the EEG showed a few irregular brain waves, which is from the tuberss. He did not give us much information on what they means though. He thought it looked "pretty good" overall, so I guess that it good. I wish I had been able to ask more questions about that. Only time will tell I guess. He thought her seizure was from the virus, which we learned is common. He could not tell us if he thought she would have another or not. Most likely yes, but not uncontrollable. Ugh. So, that means continued Chiropractic visits for Kallan (because I believe they are working) and continued non-stop anxiety for me.

As of now Ben and I are 95% on board to do the medication even though it is going to be very expensive. But, to save our daughters life we would do anything. The name of the medication is Affinitor. It is the new wonder drug that they think may be the cure for Cancer, Parkinsons, Alzhimers and Autism. Pretty amazing! The statistics on the success of the drug are incredible. I will try to post some articles about it and a video that was on Good Morning America. They are on my Facebook page as well. Brain surgery scares us. The tumor is in the middle of her brain, so they would have to go through a lot of good brain matter to get to the bad. It is very risky. If for some reason the medication does not work - that would be our only option though. We are optimistic it will work.

Ben and I are doing pretty well. We are obviously very sad about the news and wish it were better. But, this is the hand we have been dealt and we plan to deal with it by attacking it head on. Kallan is still going to have a great life and be a normal happy kid. We believe that with all of our hearts. She is a fighter! Try changing her diaper sometime and you will realize that real quick!!! A lot of people have to take a medication to make their body work properly. Overall, we are staying strong. We love our babies more than anything. There is nothing we won't do for them.

So, now obviously research for the medication is even more important to us and it is the TSC Walk for the Cure time again, so we are about to be begging everyone to please donate to our cause again. It is on May 14th in Roswell this year. It was so much fun last year. We would LOVE for you to come walk with us. Our walk website this year is www.firstgiving.com/fundraiser/kallan/step-forward-to-cure-tsc-roswell-ga

If you feel called to donate we thank you. If you cannot, we totally understand, but would ask you to share our link and help us raise awareness. I will be posting on FB this week.

We are also having a wine tasting at Classic Wines on Friday April 15th at 5:00. Everyone is invited. It should be a lot of fun!

The day we have dreaded

Well, the day we have dreaded for 13 months finally came. This is the first not positive post I have had in a long time. We knew it was going to happen eventually, but I somehow got lost in how good she was doing and kind of hoped we would be the exception. But, we are not and I have been reminded of that. I just hope that at some point I will be able to somewhat relax and just enjoy my baby again without the constant worry.

So, it all started when Ben and I were watching TV and getting ready to go to bed. Suddenly we heard a loud gasp. I knew the second I heard it that something was very wrong. It was a horrible noise. I ran down stairs and went straight into Kallan's room. She was laying there covered in throw up just staring up at me, but not moving. I knew immediately that this was it. She was having a seizure. I don't think she was actually having one yet, or maybe she had just had one. We are not sure. I picked her up and tried to get her to respond to me. She was looking all around and grabbed for my glasses, so she was responding some, but she seemed out of it. Having never seen a seizure before I was having a hard time telling if she was or was not having one. I kept hoping she was just out of it from throwing up and just not feeling well. Then it happened. Her eyes darted towards the ceiling and nothing would break her stare. She was making some whimpering sounds and was completely out of it. Ben had called 911 earlier (which in retrospect we did not need to do, but we had no idea and we were so freaked out). Then we gave her the emergency seizure medication we had (which we also did not need to do, but did because we were freaking out!). The paramedics got there so fast. The got there right as she was coming out of it. They did not see the seizure. It only lasted about 2 minutes. Maybe less, but it felt like forever. We tried to quickly explain her condition to them, but they were not real knowledgeable about seizures. They were very nice though. They put us in the ambulance and Kallan started throwing up again. One good thing happened at that point. My mom had already gotten there to take care of Kensley and Kallan heard her voice and was looking for her. So, that was a good sign she was responding to our voices. My mom was so upset seeing her looking so pitiful and hurt so much for me as well. Thank God my neighbor came over and sat with her for a while after we left to calm her down. Ben and I obviously were not thinking and he hopped in the ambulance with us. I think we thought we were just going to the local Putnam Co hospital and could get a ride home easily, but they sent us to Macon (50 min away) where they have a pediatric ER. The ride went by pretty fast. I just sat there and held Kallan. She would sleep a min and then throw up again. I cannot even begin to describe how worried I was and all the things that were running through my mind. It was awful.

Once we got to the hospital Kallan was perking up a bit and responding to us. A few minutes later she was bouncing off the walls and happy as she could be again. Which was great to see, but totally confused us. They took her temperature when we got there and it was around 102. So, they gave her Tylenol to bring it down. They rang a few tests and took her for a CAT scan. As we were waiting for the scan she was singing and dancing for the nurses. Then when they put her in and she screamed bloody murder. It was my job to calm her down and they were yelling at my to hurry up and do it. So, I stuck my head in the scanning area and sang to Kallan at the top of my lungs. Anybody who knows me knows I could not hit a note if my life depended on it, but Kallan likes it! I am sure those tech's and nurses got a kick out of it though. Here I am in the lowest point of my life and I felt like I was one of the really bad people they put on American Idol as a joke! Oh well. It worked and the scan showed no swelling of the brain. Which is good.

After that there was not much they could do. They said they were going to move us to the regular children's hospital to observe her over night and the next day, but when the pediatricians came in and we told them everything and how we treated in Cincinnati they decided it would be best and easiest to just keep us where we were and wait to talk to her doctor to find out what to do. So, we waited for hours and hours. Kallan was asleep on my chest and I was sitting in the hardest chair in America. Finally, I laid in the bed and she slept on me. The next thing I know, Ben is trying to crawl in the tiny bed with us. It was miserable!!!!! Ben and I got no sleep and we were physically and emotionally exhausted by this point.

Finally around 8:30 we got in touch with her Cincinnati doctors......and then my phone would not work - we could hear them but they could not hear us!! And his was already dead. As if we did not already have a dramatic enough night! We finally got them on the hospital phone and we were relieved to hear that they thought it was nothing to be too alarmed about. They think it was caused by her fever spiking up. Kids with TSC are very susceptible to febrile seizures. They could not guarantee that is what it was, but they were pretty confident. So, they sent us home and chose not to put her on any medication at this time. We were very happy about that. We want to avoid putting her on medication as long as possible. We were scheduled to go back for a routine visit and MRI on March 15th and they did not see any need to move it up. But, they are going to do a routine EEG in addition to the MRI now to see if anything is going on in her brain.

So, we called one of my best friends, Leslie, and she came all the way from the lake to come pick us up. Thank God for friends like her! She was there right away without an ounce of hesitation.

When we got home we were so tired, but it was time to go pick Kensley up from school, so I decided to just stay up, which may not have been the best idea. After I got Kensley we went to the Chiropractor and they asked me if I could come back in 30 mins. That normally would have been no big deal, but on that day it just set my meltdown in motion. I got to the car and lost it. I was bawling. They ended up realizing what had happened and chased me out to the car and begged me to come back in. I did and they worked us in., but I was still in full meltdown mode. Then I went to CVS to get Kallan some Advil for her fever. I was talking to my best friend Jess on the way and in CVS. I got sippy cups and Advil and went to pay and they told me my credit card was declined. I could not believe it! I was using a card I got right after college that I only use once in a blue moon (when I either get a gift for Ben, or buy something for me and don't want to tell Ben!), so I knew I had plenty of money left on it. I asked the lady what was wrong with it and she said "I don't know. You must have spent too much money and you don't have any left". She was SO rude!!! And of course Ben had not brought his wallet to the hospital, so he had my other credit card and my new debit card was sitting on my kitchen counter. I had two choices at that point. Walk out and loose it in the car, or let the lady have it for being so rude after the day I had had! I chose the better of the two and just walked out. I figured it is a small town and word is going to get out real fast that I had gone off the deep end! :) When all this happened at CVS I was still on the phone with Jess telling her about my meltdown at the chiropractor and she heard everything that happened. She was saying "here give her my credit card number!!!!!". But, when I walked out of CVS and went to say something to her she could not hear me. My phone went out again!!!!!!! Seriously!!!??? So, I just went home. And cried and cried. I really needed some sleep.

I ended up getting my phone to work and called Ben to get Advil. And then my sweet friend Joy brought us the best dinner, which was so needed and so appreciated! We had not eaten in over 36 hours!!! Ben is still talking about how good Joy's tacos were!!!

I cannot say enough how incredibly blessed we are to have such incredibly amazing friends at the lake. They were all calling and texting constantly to check on us and willing to do anything to help. Not to mention all the prayers they have said for us. Our new friends Kevin and Melissa Snell let me bring Kallan in for adjustments (he is a Chiropractor!!!! A really great one too!!!!!!!!!!) because Ted, our regular chiro was out of town and did not charge. It seriously helped me so much to be able to continue her adjustments. I had skipped it the day she had the seizure because I knew Ted was out of town, so it was so important to me to get her adjusted and it gave me some peace of mind. Then there is my sweet mom. What would I do without her. I really cannot even imagine. She stayed with me all day this week because I was scared to be alone with Kallan in case something happened. She helped me get ready for a party I had planned at my house and helped me play with Kensley because I so did not feel like playing the part of the wicked queen while she got to be the princess!! :) I love you mom!!!

So, as of now it has been a week since her seizure. She was sick for the next three days. Very sick. I ended up taking her to Dr. Bassett, her pediatrician because she was waking up at night a lot and every time she did I would have a heart attack! It turns out she has Coxsackie Virus, which can make kids very sick and could definitely explain the febrile seizure. Which was good to know, but did not eased my anxiety at all. I am doing better this week during the day, but I turn into a paranoid freak at night. My anxiety is a 12 out of 10. I have a video monitor that I am borrowing from Leslie while I wait for our new one to come in and that helps, but I am still just so worried and scared it will happen again. I am not proud to admit this, but I am still giving her Advil in the morning and at night every day just in case. It is the only thing that keeps me sane! Oh! I forgot to mention Kensley had a high fever and was sick the weekend before Kallan's seizure and then this Friday she got one again!!! So, that is why I am still giving her the Advil. If Kensley's came back Kallan's may too. At some point I am going to have to let her go to sleep without Advil though. Wish me luck.

I guess the a thing is that now we know what a seizure looks like and know how to respond. We know you wait until it last 5 minutes to give her the medicine and if it lasts 10 call 911. So, if or when it happens again we hopefully will not have to go to the hospital.

Once Kallan started feeling better last week she has been the happiest sweetest baby in the world. Just like normal. She is even more attached to me than before though. She is always in my arms or lap and gives me lot's of sweet hugs and kisses! I love it! She is taking more and more steps every day and saying almost two new words a day, or new sounds that animals make. Today when we were outside she pointed at the trees and said in baby talk, of course "bird.....tweet tweet". It was so cute! It is good to know she is still doing great developmentally. Let's pray is stays that way.

Also, please pray this was an isolated incident and for a good trip to Cincinnati. I pray they find nothing in the EEG and nothing new on her MRI and maybe he can put my mind at ease just a little. I am not sure anyone can do that though. I don't know how other mother's of TSC kids do it.

Happy Holidays!

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

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

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

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

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

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

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

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

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

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

Updates and Cardiologist

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

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

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

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

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

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

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

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