Our little one is 9 months old and well we have 3 months to go for Eva's 1st birthday, can you believe it? Time certainly does fly, I know for us 1 year seemed like a lifetime away, but here its almost upon us and well we could not be more excited about it. Eva has had her ups and downs but no where near what I read other kids with HPE have. Sometimes I feel pressure like I'm supposed to have a ton of doctors for Eva, what am I doing wrong? Why does she only have a pediatrician? I guess I have to just step away sometimes and just focus on my family. It is hard to see that she has difficult days and well, we try to get through them and not try to "fix" her. Is that wrong? Anyway, please, these are just rhetorical questions, I really don't want opinions, I get them all the time especially unsolicited ones. HPE kids are so unique that even kids with the same exact severity of the disease are different and thats what I have to keep telling myself. There is literally no book on how to care for or even treat a child with HPE. In every state there is a different physician with a different opinion for care. Parents everywhere are doing the best they can. Eva does not and will not weight the same as any other baby her age, Eva will not develop the same as any "normal" child her age. My little mantra does help me see my daughter for who She is not for who every chart says she is. We have a wonderful pediatrician who is calm and assesses things with practicality. I really appreciate that, he looks at her and then he looks at the charts, and when he looks at her he says, "She is doing great!" And she is, we have our eating challenges but she looks healthy. Eva is in the 2 % of her age, she is way under weight and is now growing at a very slow pace but she looks great!
We already know that a feeding tube (other than the tube we put down her throat) is going to be with no doubt, needed. We are hoping to at least wait till her first birthday before getting evaluated. I do worry about doctors wanting to poke and prod her as if she was a project. So I'm careful not to take too much advice from doctors. She is a hard worker and I know that she is working hard to grow and eat. She has taken some "solids", applesauce, pudding and she is swallowing with no problem but it is a miniscule amount, nothing that would actually add calories to her diet. Mostly its to help her "remember" how to swallow, we do the same with her binky, it helps her "remember" how to suck. We add a little extra formula powder into her milk to help with calories as well, but we know that a feeding tube is pretty inevitable. We try to take every situation as it comes and try not to look too far ahead. I really learned that during my pregnancy, I wanted to know everything and how to do everything before I knew anything. I am learning that in some cases we need to plan ahead, way ahead but in others you just have to be patient. Eva is teaching us patience.
When we found out about Eva's condition, we had to let go of so many dreams. Big dreams and little dreams and we had to decide on new dreams for her. One of the most important things I wanted for my daughter is for her to be happy and to know that she was loved. Without a doubt, I know that Eva feels loved and is happy! She has satisfied every dream I could have ever had for her and for that I am so proud!
For all who love and appreciate my daughter, a big Thank You! For all of you that don't say, "wow, she is so small for her age", Thank You! For all of you that don't ask, "so when are you going to fix her cleft lip, you can repair it right?", Thank You! Thank you for loving her as Jose and I do, just the way she is!
