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!!!