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......