Facebook post from Sept. 28, 2021 from Jenn

My goal this week is to be more positive and patient. (Both are very hard in the spot I’m in but going to try so hard). I feel like last week was a very lonely hard week for me. I missed having support and hugs from “the inside”, but was so happy for everyone that came by to have fence visits. We had my work friends in SC, Julian’s 8 friends and 4 moms that brought them down, chris, my brother and sister-in-law, loved being able to see everyone just miss the physical touch of friends and family. We do hopefully have an exciting week coming up. Julian has 2 big hurdles. The first is hopefully we will ween off the vent 24 hours a day. He is currently breathing on his own from 6am to midnight, then back on CPAP for the 6 overnight hours. Here, they take the patient to ICU for the night so they can be watched more closely. The pulmonary PA told Julian if he could do it for 18 hours he felt sure he could for 24 hours. It has become slightly a security blanket but think he’s ready to graduate. I feel like this is huge because there was doubt with his injury if he was going to be able to breathe unsupported. They had placed a diaphragm pacer in during surgery in SC but as of yet this is all him.. The second big thing is he’s eating and taking all meds by mouth, so hopefully the peg tube won’t be needed either. Love saying goodbye to each new tube we came to Georgia with. Medically he is improving very good, which he had a lot to overcome with a pretty bad pneumonia when we got to Shepherd that needed to be treated. His lungs took a big hit with it but think he’s doing very good now. He talks over the trach all the time or with a speaking valve on, so the days of trying to read his lips and him getting frustrated are all gone. My friend Kristen is back, and life is a little better with a friend to go through it with, and my other “in house” support is back to work this week so love seeing her and getting hugs and someone else to help me stay on top of Julian. Continue praying for julians healing and our strength to keep going.














Comments

Post a Comment

Popular posts from this blog

Mamma Bear

Image
Mamma Bear moment.  It’s sad that you feel like you must protect your child from words from important people who could have the ability to drastically make life exponentially harder for my son who tragically was injured in a car accident 3 years ago and was paralyzed from the neck down.  Life isn’t easy for him or us that take care of his every need.  In the heels of a terrible plane crash, to tell the world it was due to a program through the FAA that helps include people with physical disabilities was highly misleading to a population that won’t know or investigate the truth of the program or the cause of the accident.  Words are powerful and some’s carry more weight than others.  Implying that hiring people with a physical disability will compromises safety will increase the harmful stigma of a population that is already vulnerable and has the highest unemployment rates in America. Ever since Julian was hurt, we have tried to convince...
Read more
Image
 catching up on old info: 3 YEARS! Hard to believe we were thrust into this world 3 years ago. Many of you know how hard this year has been. Reality set in. Days are hard and life isn’t easy and I could write a book on all the ways the system isn’t there to help support and protect those individuals with disabilities. It makes me sad to think of all those less fortunate than Julian that don’t have loved ones advocating for them, and making sure they have the best life despite the circumstances. Despite what life has given Julian, his loving personality is always present even on the hardest days like today. Trauma is real and heavy, that day will always be so vivid in our mind. Thankful for all the messages sending love especially on tough days. It really does help get through the days. Last week Julian had an opportunity to go to a week camp for SCI in Rhode island put on by Empower SCI just for teenagers. Julian has never known a stranger and loved getting to meet new fr...
Read more

25 years!

Image
 July 31, 2024 Hard to believe it's been 25 years since Chris and I got married.  We were such babies back then and had no idea the ride we would embark on since that day.  I feel like we've lived more life in 25 years than some do in a lifetime.  We have moved 7 times, 4 different states, and 2 different countries.  Each time a new adventure that we looked forward to the new experiences and people we would meet.  We both put ourselves back to school to get our master's degrees while navigating life with work and children.  We had 3 beautiful children that I've been proud to watch grow.  Being a mom is one of my most favorite things and could not be happier with the family we have created together.  We've also experienced such profound loss and grief mixed in through the years, especially the last 5.  Some days I wonder how we are still standing, but we continue to push through and make it through another day always hoping that things wi...
Read more