We made one year and what a long journey it has been. These last few days have been bitter sweet as I remember the events of this past year and how it all started. Fortunately I can focus on the sweet part and have finished beating myself up over the why.
Juliana had a quiet birthday at home. Her brother just had his birthday party the week before and that was enough excitment for all of us. She is now rolling from back to belly but gets very upset because she can't roll belly to back yet. It's pretty funny to watch her do a full roll and then start screaming and kicking her legs up. We have been showing her how to roll back to her back but she just gets too upset. She also has a new interest in pulling on her line (not good at all). I knew this day would come so we are taking many precautions to hide the line to prevent her from pulling it out. It's just really hard to hide and keep it away from the diaper area to avoid infection. I made a sleeve that velcros around the line to keep it out of her site. Hopefull this will deter her for a while.
I think we may be getting teeth soon or at least I am hoping. She has taken a disinterest in her bottle feeds which isn't the end of the world because I have two other ways to give her nutrition (NG tube and her central line). It is however frustrating because ultimately our goal is to have her get all of her nutrition by mouth. I was always so thankful that Juliana didn't have any oral aversions from her lengthy intubations. I am hoping that the reason for this sudden disinterest is that she teething and that she will soon get back to her old bottle gulping self. She is however taking her cereal just fine. She is only taking 1/2 a tsp with formula but the belly seems to like this so we will stay here for a while.
I am not sure if I shared the news of Juliana's hearing loss. It was a bit hard for me to swallow. I am not really sure why because hearing loss isn't nearly as life threatening as chronic lung disease or short bowel syndrome. Juliana has profound hearing loss in her left ear and severe loss in her right ear. At least I can stop telling little Omar to turn the volume down when he is playing his keyboard. She is scheduled to be fitted with an amplification device that will basically turn up the volume for her. She can hear noises that are classified as extremely loud but can't hear noises that are very loud like the vacuum cleaner, alarm clock, or heavy traffic. So this also means that my family will have to become tri-lingual and learn sign language as well as spanish.
Overall things have been pretty normal for us which is more than I could ever ask for. There are some things on our list of summer activities that we have to be very careful about like going to the park or the beach or taking a walk. The weather has been warming up which makes it a little harder to bring Juliana out. She is really crabby when she's hot and we also run the risk of dehydration. I have been in search of a baby sun tent so that we may be able to spend the day outside and still keep her comfy out of the sun. Fortunately it doesn't seem like it's going to get too hot this summer.
I have some videos and pics of Juliana rolling and laughing that I will try to get up soon. It was pretty hard to get her on camera because as soon as I pull it out she stops what she is doing to look at the camera. She is turning into such a character and we are so blessed to have her in our lives.