Well it's been a while but not much has changed. Juliana is on 1/2 a liter of oxygen and from the looks of it she's not going anywhere soon. We had a chest x-ray done today and although it doesn't look terrible her lungs are just not ready. Her lungs are going to need a more time to grow due to her prematurity. Since she had to start using her lungs far before they were actually ready, they way her lungs have developed is very different from a full term or near full term baby. Months on ventilator has caused damage to the lungs that only time can heal.
So it's starting to look more and more like we won't be having surgery this year. I am glad that we have an x-ray that shows that her lungs just aren't ready to handle the massive amounts of fluid that will be required for the surgery. Her pulmonologists now feels that without a huge growth spurt the chances of Juliana coming off oxygen this summer are very slim. I really wanted to believe that it was possible but deep down I started to realize that it wasn't going to happen this year.
So off to Oley we go for the first time. The Oley Foundation is a non profit organization dedicated to educating and providing resources to IV and tube fed adults, children, their caretakers and healthcare professionals. Each year they host a conference where consumers are able to attend different informational sessions. They also have social events throughout the week. I am very excited to be able to attend this year. Not only will it be a much needed reprieve from everyday life but I look forward to learning more about how to manage Juliana's care in many ways. It will also be nice for Omar to see other children with issues that are similar to his sister's.
In other news Juliana is well on her way to walking. She is cruising on all the furniture and is getting into everything. She can make it down one step from the kitchen to the back porch and has learned how to safely slide off the couch. She is also becoming more and more vocal. She is stringing sounds together and is also able to understand more. She has become my little shadow following me around the house now which is very cute but sometimes limits what I can get done. We are very pleased with Juliana's progress.
Oral feeds with Juliana have improved. She is more tolerant of oral stimulation and the gagging has decreased. She lets me clean her mouth twice a day without too much of a fight. We have been letting her taste different table foods but she is not really interested yet. She is very good at finding the little spec of food I put in her mouth and taking it out. I am going to talk to our nutritionist at our next visit to see if there are other fluids that we can try with her. She may not drink very much but the goal is to train her to like foods and eating so that when we can give her larger volumes she will enjoy it.
She is doing very well with her hearing testing. She still shows a mild to moderate hearing loss. We are now going to move on to the next phase of testing which will involve her placing an object into a box when she hears a sound. Over the next month we will be training her how to test. Once she has learned how to test then we can bring her in and test different sounds to further evaluate her hearing. As she gets older we can more accurately test her hearing and adjust her hearing aids as needed.
Now that surgery is off the table we are looking forward to enjoying the summer with the kids. I just hope it's not too hot this summer so we can spend some time outdoors without risking dehydration.