This year has been an amazing one in the lives of the Delgado's. One year ago we were spending most of our time in Boston and actually had Thanksgiving dinner in the hospital cafeteria. We had just moved out of the ICU to a regular room on the medical floor. We had already seen some very bad moments with Juliana and were so grateful to have a room where we could finally spend some quality family time together away from all the drama of the ICU.
Juliana was still a bit yellow from the liver disease. We had just started the Omegaven. Things were definitely looking up, but I couldn't imagine where the future would take us. At that time I couldn't see our lives beyond the next week. We were literally living in the moment. Plans for Juliana's recovery and still pending surgery were ever changing. They still are but now that we have become accustomed to this life, it's much easier to see beyond the next week. We know Juliana will have her surgery at some point in her life (hopefully the next year) and we have met people along the way who have traveled a similar path. We know what the possible battles we will face look like and have an idea of what to expect in general. We all know that Juliana doesn't follow the rule book at all so I have mentally prepared myself to just deal with whatever comes our way.
We have made some great strides since Juliana's birth and I am so grateful for each and every moment. This year Juliana finally made it home from the hospital after 7 long months. We survived our first major septic episode and made some new friends in the PICU. Making it through that episode was probably the worst we have seen yet, but she's a trooper. We have been hospital free for 5 months now and are very close to tipping the scale for more time spent at home than in the hospital.
Juliana's therapy has been going really well although most of the work is done outside of her therapy sessions. Just yesterday she sat up on her own for the first time (I don't count the times I was able to balance her for a few seconds). We were waiting to go into the O.R. to get her tubes put in and were playing on the exam table in the room. I sat her up and let go and she didn't fall over. She held it for a few minutes, so when we arrived home later that afternoon I pulled out one of her sit and play toys and she sat for nearly 20 minutes playing without falling over. She hasn't figured out how to get to the sitting position without help but she can stop herself from falling over. I'll put some new pics up later.
She is continuing to become more and more vocal. We have an appointment on Monday with the audiologist. I am anxious to find out how much her hearing has improved since getting the tubes in place. The ENT said there was a lot of fluid in both ears (more so on the left) so we should see a big improvement. We haven't put her hearing aids in yet and won't be able to till tomorrow, but I can already see an improvement. She is responding without the aids in and is babbling quite a bit. Despite having the procedure done yesterday she was very happy and playful the whole day.
We are very fortunate to have the support we need from family and friends and appreciate every moment of every day.