We (all 5 of us) are sitting bedside with Jo as he rests. His vitals have never been stronger or more steady. The only remaining procedure we must do is the skull replacement. Everyday the neurologist reviews the head and waits until he sees less mass resting outside the skull. This sounds horrible, but actually it is why the procedure was done in the first place. Jo does not have any dangerous swelling on his brain, we are just waiting for the brain overall to shrink back to its original size before closing the skull back up. It sounds like we will have a CT scan later this week or early next which should tell us when the procedure will be planned.
The waiting for Jo to open his eyes has been very difficult for us. His right eye does open just a sliver at times and although it is very encouraging, and a great sign, it elicits joy and equal pain. We are so close yet so far. Can he see us? Can he hear us? Is he reacting to our request to open (which we say over and over)? It can be a very desperate moment for us. It is so far removed from our overactive, goofy, and coy little boy. We miss him so dearly and at those moments when we are asking for just the smallest recognition of us, it can be devastating when we can't see his response. We know he is fighting to get back to us, we don't know how many miracles have already occurred and hate to be selfish. We pray so strongly at those moments for God to give us and Jo strength, and at these moments we fall on the strength of each you who send us prayers and encouragement every day! You are our prayer angels, lifting us up, we love you all.
We are being visited more and more every day by friends, family, and the PICU nurses! They swing by to check in on Jo and us. They are the most amazing, talented, loving, and caring group of professionals we have ever met. Since we moved to our new room outside PICU we have been blessed with another group of angel nurses again! They care so much, check in often, teach us, and show such compassion for Jo and his family. We are so lucky.
I've said this before, but Alex and I can barely comprehend how much people have done for us and continue to do. The number of selfless acts is too long to list. The amount of time friends have donated to our betterment, away from their loved ones, is astounding. The generosity of each of our friends and family is overwhelming. We have never once wondered where our next meal was going to come from. The financial support we have received is extremely humbling, and the donations occur every day. Please accept our sincere thanks from the bottom of our hearts, we are truly touched and overcome with emotion when we think of just how much has been given. We are blessed beyond belief.
A quick note on Mom and Dad. The silence can be deafening when we are alone with Jo. He looks so great, just like he's sleeping, which leaves us begging for him to wake up. Breakdowns have become just another thing we do regularly (pretty much a daily thing), and anyone that has hugged us recently has experienced that personally :). So, even if you're not a hugger, when you see us, expect a hug, expect some tears, and know that it makes us feel better. Once again you are helping us through this, and without those hugs we would be lost. Than you all so much, we love you.
Jojobinks we cry by your bedside because we are trying so hard to be patient, so hard it hurts. We are going to be strong for you baby boy. You keep fighting, we will keep praying and crying (sorry it's just our thing now). Your Mom misses your hugs so much, and I miss seeing her light up from your touch. Across the country, and the world, angels our praying to God to stay by your side and guide you back to us. Without you the world is just a little bit darker, we know you will bring that light back soon. We love you to the moon and back sweet angel, we miss you so much!