It has been such a busy, but fun summer! Since my last post we had our Coffee for the Cure event at The Daily Grind. It went way better than I ever expected!!! We raised over $2500!!!! I could not have been more pleased! All our friends came and we even made some new friends there! It was a lot of fun. I cannot thank Thom Morgan, the owner of The Daily Grind, enough for doing that for us.
Other than that we have been doing normal summer things. Going to the pool (Kallan loves the water!), out on the boat, having friends over, and best of all was Kensley's 3rd birthday party! We had a blowout! It was so much fun! We had the big blow up dual lane slip n slide and every blow up kiddie pool that Wal Mart sells in the back yard. I think the adults had just as much fun as all the kids. It was so fun to have all our friends over and for everybody to get to see Kensley turn 3 and how well Kallan is doing. It was a big celebration of our girls. I can't believe how big they both are already.
Kallan just turned 6 months old and she is doing awesome! I am so reluctant to say how lucky I feel because it is still so early in the game with Kallan and I know that. I know things could change at any minute. But for now she is doing everything a little 6 month old girl should be doing and then some. She is rolling over, blowing bubbles, babbling, sitting up, getting up on all fours and rocking - determined as heck to crawl. I love seeing the look of determination in her eyes when she is trying to crawl. It makes me realize she is not going to let anything hold her back without a serious fight. She is so strong and gets so proud of herself when she does something new. And she is the happiest baby I have ever seen. She smiles all day every day. All you have to do is look at her and she gives you the biggest smile ever. And she does not just save all her smiles for me. She smiles at EVERYBODY! Everywhere we go she smiles at people. She makes peoples day when I take her to the grocery store. They always tell me to not tell them that she smiles like that at everyone. They want to think it is just them. She ADORES her big sister and gives the biggest smiles to her......and her daddy. Daddy finally got a daddy's girl. She loves him and never takes her eyes off of him when he is around. It is so sweet. And Kensley is still the best big sister. She always holds Kallan's hand in the car, no matter what. She holds her and feeds her and loves to dress her up! Every time I walk out of the room for a minute and come back Kensley has put a something on Kallan - hats, crowns, headbands, flowers, cowboy hats, sunglasses and best of all her swim goggles! It cracks me up and Kallan loves it to!
I had the people from Babies Can't Wait come out to do an evaluation to see if she was behind in anything and see what therapies we needed to start. The lady told me that if it weren't for her diagnosis she would not even qualify for Babies Can't Wait and she does not qualify for any therapies yet. She is doing way too good and not delayed a bit! I thought that was great news! I knew it, but it was good to hear from an expert. Although it was slightly frustrating because I want her in all the therapies I can get her in regardless if she needs them or not. I don't want to wait until she is delayed to start. My goal is to prevent any delays......God willing.
Oh! I almost forgot! After the last MRI they told us she most likely has a tumor in her eye. I took her to the best Pediatric eye doctor at Emory and after 4 different doctors looked at her eyes they told me her eyes are perfect. She does not have a tumor on her eye! I was so excited! One thing to check off my list. I will take it.
We have a very busy August coming up. We go back to Cincinnati on the 18th. It will be interesting to hear what the doctor has to say. I am hoping he makes us feel all good and confident again. We left there feeling on top of the world last time because he told us how great Kallan is going to do and how lucky we are that she does not have a severe case. While I love hearing that, I know that there is only one person that truly knows what her life is going to be like and it is not a doctor. TSC is such an unpredictable disease and can get ugly quickly. The next three months is so critical. If we can make it to 9 months without any infantile spasms we will most likely be in the clear for her not getting them at all. Which is HUGE because like I have said before, they are what cause the most brain damage. I pray a lot and keep taking her to the chiropractor. Other than that I have no control over what happens. I am hoping all the prayers keep working though!
Kensley starts school in a few weeks! She is so excited to go, but I think once she realizes I won't be going with her she won't be as excited. She is such a mama's girl. She is my best little buddy. I take her to play with little girls her age and she still only wants to play with me. I think school is going to be so good for her. She needs a little socialization. She is very outgoing and social, but not in certain settings. She gets shy, which is SO not her. I am hoping she likes it as much as she thinks she is going to like it. She loves her uniform! It is so cute on her too!
I love my sweet Kallan more than I can express in words. She is such a sweet, kind hearted, loving and happy baby. I try to enjoy every good minute I have with her and constantly hope that it won't be my last. I wish I could say I look at her and only see sweet Kallan and not sweet Kallan with TSC, but I can't. Not yet anyway. Ben and I still worry a lot. We know the reality and we dread having to ever see her suffer in any way. She is so perfect and so beautiful. It is hard to imagine that she could possibly have such a horrible disease. I do go through stages where I worry more than others though. Hopefully Dr Franz will give us more reassuring news after seeing another MRI and we leave there feeling great again. I will let you know......
