It was so great to be home with our baby! She is such a good baby and so loving. She wants to be held and snuggled all day long, which can be good and bad! We figure she deserves to be spoiled for all she is going to have to go through, so we definitely spoil her and give her lot's of love. We will eventually have to teach her there are times where she just can't be held all day, but we will cross that bridge when we come to it. She sleeps great. At night she wakes up to eat every 2.5 to 3 hours and goes right back to sleep. I am pretty sleep deprived, but that is normal. Lately, my mom has been helping me get more sleep. She takes the late night feeding and I go to bed. Then I get up with her the rest of the night and morning. It definitely helps to be able to get 4 hours straight. I can't imagine how I would make it without my parents. They have been helping me so much. They even got Kensley potty trained while we were in the hospital!!! It means the world to me that they love my kids as much as they do. They would do anything in the world for them and I know that. We are very lucky to have them and have them so close!
Kensley is adjusting really well to not being the only princess. She even offered to share all her princess stuff with Kallan, which is huge for her. She loves on her all the time and is a great helper. I really thought she would be more jealous, but so far she is not much at all. She has had a few minor moments, but nothing major. I guess I under estimated her - she is the happiest child ever, so I should have known better. I think Kallan really likes her too. She never cries when Kensley is all over her "giving her love" and always responds to her voice. I hope they will be best friends.
We are in the easy time with Kallan right now and we know that. She is doing so well and we are so thankful for that, but the down side is that we are just waiting for the bottom to fall out. We don't know when or if she will have seizures, but we keep waiting for it. It is so hard because newborns make jerky movements all the time and do things that freak you out with a healthy baby. Every time she sneezes, gasps, breathes funny, moves suddenly, chokes etc we worry that it is a seizure. Seizures are very hard to identify in babies. They are called infantile spasms and they can be something as simple as raising her arms at the same time repeatedly, or a head nod. I finally went online and did some extensive research on infantile spasms and watched videos of kids having them, so I feel pretty confident I will know it if Kallan has one.
She had a great 1 week and 1 month check up. She has gained almost 3 pounds! We also went to the new TSC Clinic that just opened in January in Atlanta and met with the neurologist, Dr. Flamini, there. It is so great that they have a clinic in Atlanta now! They help me coordinate all her doctors appointments and keep track of all of Kallan's medical records. He was not able to tell us anything new. He confirmed she has one large tumor on her brain called a Sega and probably some of the small ones, but he could not tell us for sure because of the type of MRI they did in the hospital. She has another MRI scheduled for April, so we will know more then. She will need to have surgery to remove the Sega at some point, but we are just watching it for now. A lot of times they do not grow quickly, or at all. We hope she is that lucky. We also went to the cardiologist and her heart is doing fine. The tumors are not obstructing the integrity of the heart at all. We just have to have them checked every 3 months. In the meantime, we are just watching her every move and hoping that she continues to do well and trying to enjoy every minute of the easy times and prepare for the hard.
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