A Day In the Life

Many people have asked me lately what our day to day life is like so I thought maybe I should have a post detailing this. This will probably ahve to be a 2 part series. One part on the day to day and one part on the emotional dealings. Every morning Anna wakes up anywhere between 5-8 am. It is usually closer to 5 but sometimes we can get her to go back to sleep. We count those mornings as sheer joy! We get up and then Anna gets a bottle of soy milk- she is a big fan of the Very Vanilla Soy Silk. She cannot have cow's milk or other milk products or she gets a scald looking rash on her butt and eczema all over her legs and an ear infection to go with it. She is still taking a bottle for many reasons but the most of which is that she is still so skinny that I need to be sure she gets a certain amount of calories a day. She will not drink milk from a sippy but if I use the bottles she will drink it. Right now the calories are way more important than weaning from the bottle so the bottle it is. She will drink about 4 ounces. She occasionally will drink 6 but has for the most of her life only taken 4. If you think about how tired your mouth gets after chewing for a long time then you kind of know how it is for her to eat or drink anything. It takes a lot of muscle control and she is easily tired from it. Then she is off. She is the busiest kid I have ever met. She is not the typical kid in that way. Carly was busy too but Anna is like a supercharged Energizer bunny, all of the time. We work some on signing and speech as the day goes on. We spend some time with her fussing and me going down the list trying to figure out what she wants. It is like when you have a new baby and they cry and you start with are they hungry, are they wet, are they cold... You keep going until you figure out what makes them stop crying. Anna is smart and knows what she wants but has difficulty communicating that so it is like playing the guessing game but she knows what she wants, she just can't tell me. She has about 8 words and 5 signs and the rest is just a guessing game. She can say Daddy, Carly, kitty, please, thank you, drink, yes, and no. She rarely is able to say Mama although I have heard it once or twice. She can sign milk, more, hungry, drink, and sleepy. Kenneth is determined to teach her the sign for "kiss my butt" but I am doing my best to discourage that!! Then it's lunch. She pretty much plays most of the afternoon. As she starts to get tired in the afternoon she starts to fall more. You notice her left leg turning in more and her left arm/hand becoming much stiffer. Her hands will go back to the fisted position they used to always be in. She will sometimes take a little nap but most days it is impossible to get her to take one. On Monday afternoons she has speech therapy for an hour. By the end of that hour she is completely exhausted. She has dinner at about 7 then a shower. Then the fun begins. We crush up 25 mg of Trazadone and 6-9mg of melatonin and mix it in applesauce. We beg and plead with her to eat it and she usually does. Occasionally we have to force it in her mouth. Then we pray...hard...that she will sleep. Then she gets 1/2 cap of Miralax mixed in another bottle of milk and she takes the bottle. She has battled constipation from the very beginning of her life. I did the best I knew how to do but she ended up with fissures from extreme constipation. There was a time when every 3 days we had to dig out an impaction. She would scream and cry and bleed and then I would cry and feel terrible for hurting my baby. This went on for about 6-9 months until we finally got her Miralax dose to the right point. We tried everything else we knew to do but it just wasn't getting better. Then there are the doctor visits. They seemed at first to be never ending but things have gotten better. It is hard with her because she does not feel pain the same as others. I have to always be second guessing if she is hurting or not because unless she is in extreme pain she will not fuss or cry. I seriously believe she could break a bone and never give us any indication. And with the doctors, you have to be very careful. When you have a child with a brain injury doctors are a huge part of your life. But if you allow one of them to mess up you will never be able to do anything about it because they will say your child was already damaged and that whatever happened was just due to the CP. Nobody will be held accountable. And if you think the doctors know what to do with special needs kids, well, you are wrong. The parent has to become the expert and navigate the system. You take a crash course by reading everything you can get your hands on and then do the best you can. CP kids are basically not insurable. Luckily Kenneth and I have group insurance through our jobs but if we did not there would not be hope of getting private health insurance for her. The average cost of raising a kid with CP until age 18 is like $900,000-nobody wants to willingly and knowingly take that on. And we make too much money for any government funded programs. She is not dumb, her muscles just don't work right. I expect her to graduate from high school and go to college just like any other kid. So you see she is a normal kid, but then again she is not. I hope that as she grows older she feels more like a normal kid than not. I hope that she will be oblivious to the stares that I already see. I think mostly the stares are because she is so tiny but I don't really know that. I am used to her because she is like she has always been and I have no idea how an outsider sees her. I do not know if her stiffness and wide and clumsy gait are noticeable to the untrained eye. Her doctors records say she is "dysmorphic" so I don't know if others see that too. Mostly, I don't care. She is my Anna and I love her. Do I wish things were different? Yes and no. I will not lie, she is exhausting beyond what I have the words to express. I wish things were different for her so that she would not have to struggle so hard for the simple things we all take for granted. I wish Kenneth and I could have more of a break sometimes. But this CP, it has brought us blessings too. More blessings than I can count...