On August 17th Ben and I took Kallan back to Cincinnati to see Dr. Franz for a check up. It was our first time seeing him since her MRI in May. As usual, Ben and I got really nervous in the days leading up to going. We worried that he was going to tell us something bad and the "rug would be pulled out from under us". She is doing so great and we are so happy with her progress, so we are always nervous for all the good to be taken away. I think I say that at least 10 times on every blog post! :) Since we have not gone over the MRI with the doctor yet, we were just very nervous he was going to say a lot more tubors showed up or, he was wrong about something last time. I kind of freaked out a few days before because I caught myself being excited to go and get good news. Last time I went I had no expectations because I did not think he could tell us anything new and then we got great news. So, I panicked that since I was expecting good news we were going to get bad news. Not positive thinking, I know! I try, but it is hard sometimes!
So, we get on the plane and as usual Kallan was a perfect angel. She is so freaking cute and sweet! We got there and went to dinner. Went back to the room and tried to get Kallan to sleep since she had not had a good nap all day. She thought it was party time though! We did not bring her pack and play so she thought sleeping next to mom and dad was the coolest!!! Finally I ended up putting her in her car seat to sleep and she slept ok, but not very long.
We got up early and actually headed to the hospital on time, which is so not like us. Normally we are so late and rushing to get something to eat, fighting over where to eat, how to get there etc.... I felt like I should start a fight just to make feel normal. :)
We were both SO nervous!!! We both had major butterflies in our stomachs.
When we got there we got in an elevator with an a kid who was strapped into a wheelchair that very obviously had some brain damage. It was heart breaking. I hurt so much for him and his parents. And selfishly I was praying "please don't let him have TSC. Please let is be something else. Please don't be going where we are going". But, this time my prayers were not answered. He did have TSC and he did go where we went. My heart just broke for them. It was a real eye opener to see how awful and cruel this disease can be, in person. It makes me feel so many emotions that it is hard to even put into words. I obviously feel so blessed and so lucky, but it also makes me feel fear, guilt, sadness, reality, anger, motivated to find a cure, etc. I wonder how we got so blessed. Why us and not others? Then I remember it is still early and I worry that it could be us one day. Not likely, but who really knows???
Then we got called back into the room. The nurse that did the initial weight, height, bp etc. was awesome! She loved Kallan! She kept saying Kallan was the reason she should not work in pediatrics. She gets too attached!!! It was cute. Then we got to our room and had to go through all the questions and the process of seeing all the people before you finally get to see the doctor. I hate this part!! You see a nurse, a social worker, a records keeper another nurse, somebody from the TSC Alliance came in and then my least favorite of all....the GeneticCounselor. I'm sorry if you are one or know one, but to us a Genetic Counselor is the most pointless career ever!!! They know nothing and can tell us nothing. All they can do is read statistics off the internet. I can do that!!! It is so frustrating to me. Just because Kallan has a genetic disease everywhere we go they throw the Genetic Counselor at us and I have learned absolutely nothing from them. It is a waste of my time. Sorry. I had to say it.
Finally, after three hours of "visits from the others" and a very fussy, tired and bored baby the doctor came in. He looked very flustered when he came in. He was sweating. He told us he was sorry it took so long, but the kid in the room next to us had just had a seizure while he was in the room. It was good to see how emotional Dr. Franz was about it. He very obviously cares about his patients and takes it personally when they are not doing well.
He took one look at Kallan and said, "wow! She is doing well!". He was so impressed at how well she was doing. He said she is advanced for a non-TSC baby, so she is really advanced for a TSC baby. He could not believe how well she was crawling and sitting up. He sat there and held her, played with her and loved on her. He told us there are only so many tests he could do to tell us how she is going to do. Kallan can tell us how she is going to do better than anything and look at her. She is doing awesome!!! That made us feel so good! Of course we think she is doing great, but hearing it from the expert confirms it.
He went over the last MRI with us. There really were no changes from the first one, which is good!!!!! No new tubors or anything unexpected. The one tumor we are watching to see if it grows has not grown and has no activity that suggest it will grow anytime soon. He said there is no way to know if it is a SEGA or not at this point. We just have to keep watching it.
We also went over the genetic test with him. I can't remember if I have mentioned this before or not, but she tested negative for TSC. Which does not mean she does not have it. It just means it is an unidentified gene. We really wanted to know if there was any correlation to that and the severity of her case. We asked the nurses and the genetic counselor and they all said no. They range all over the place from mild to severe. Then Dr. Franz said yes there is a correlation. There is evidence that suggests that kids that do not test positive for TSC 1 or TSC 2 (test negative) typically have milder cases. That was great news to us!!!!!!! It was exactly what we wanted to hear!!!
After we asked our ten thousand questions (and Ben got mad at me for asking questions about BPA being linked to genetic diseases :). For those of you who don't know I am obsessed with avoiding BPA and convinced that it caused Kallan's disease) he told us that our biggest concern with Kallan should be boys. How great is that!!!!! He said that the fact that she has gone 7 months with no seizures is huge. Most kids that have severe epilepsy will have a seizure in the first 6 months. He said if we can make it a year without any then we should rest easy that she most likely will not have severe epilepsy. He said he can't say she won't have a seizure and because 90% do, but he thinks that if and when she does they should be very easy to control. He says of course he cannot guarantee anything, but based on his experience, how well she is doing and where her tumors are she is going to have a great life. Ben and I tried to get something bad out of him and he had nothing. I think he was slightly annoyed by the end because we are so ultra paranoid and wanting constant reassurance even though Kallan is doing so great and then there were kids in the other rooms so severely affected and suffering so much.
So we left on a mega high again. Counting our blessings. Until on the way out we Looked back towards the waiting room and saw more severely affected kids and instantly felt so much hurt for them, so our high was somewhat short lived. We feel like something has got to be done. They are not doing enough to find a cure for these poor kids. I swear I feel like my "calling" is to start a non-profit and do some serious fund raising for TSC and genetic diseases. Ben and I are very serious about starting a fund to for kids with genetic diseases to send them to the best doctors for their disease. We are so fortunate to be able to go to Dr. Franz. He has changed our life and has changed the lives of so many others who see him. We believe seeing the best doctor for your disease is SO crucial. Maybe once Kallan gets a little older I will have the time to put towards my new passion. I think I will really do it though. I think about it constantly.
After our appointment we met an old college friend for lunch just outside of Cincinnati. It was so great to see her and so nice to know we have a such a great friend in our city that has become our second home. I am hoping we can get together again when we go back in February!
Another random bit of good news.....on the way to Cincinnati I lost my brand new super cute sunglasses while going through security. I didn't realize it until we got on the airplane. I was so upset! So, I went online and filed a lost and found claim through Hartsfield and guess what!!!!!!! They found them 2 days later!!!!! How amazing is that??? They did not even have a scratch on them either!
So, all in all Cincinnati was a great trip! A long two days, but so worth it. Kallan was such a champ. She got very little sleep and only 10 minute naps here and there and smiled the whole way. She did not fuss once. So many of our prayers have been answered. We still need lot's of them, so please don't quit praying for us because they are working. Now we have to pray that Kallan continues developing perfectly and stays seizure free for the first year. Once we make it there we will start praying for next year. One day at a time. I know I say this so much, but it's true. We are so blessed. I don't know how we got so lucky, but I could not be more glad that we did. She is our precious little angel and I think she is going to make us all better people just by being Kallan. She is amazing and does not even know it yet! Although she does know she is cute!!!
Just to show you how excited we get when Kallan does something....today in the car Kensley said "MOM!!! Kallan just yawned!!!! That is so great!!! She knows how to yawn! Kallan, I am so proud of you". How cute is that! Even Kensley is cheering her on every step of the way.
She also told her daddy that Kallan needs to be a skunk for Halloween because she is a stinker and poops in her diaper. :)
Also, Kensley started school a few weeks ago and it is going great. Well, this week was great. She did not like it at all at first, but she is getting better each day. She just misses her mommy. She is my best little buddy. She would love it if only I could go with her every day! We LOVE the school!!! She is going to Redeemer Academy. We are so impressed with how much she has learned already. Her favorite activity is Spanish!! Which makes me very happy since it was one of my majors in college!
We are leaving tomorrow to go on a family vacation for a week! I am so excited! We are going to Savannah for the Baptism of a very good friend's baby, then on to Sea Island!!!! I sure I will have some great pictures to post!
