Jo has been an all-star the past few weeks, each day he shows more progress. In fact, he does so well at times it makes me nervous about posting, then I realize God is in control, he is working his way back.
Jo is showing cognitive progress!
I'll spare the post from detailed rants about insurance. The real health care crisis is less about coverage and more about a system designed to send any family, covered or not, into an abyss of debt. We are the luckiest family I know, we have amazing support and I am blessed with great coverage from my employer. Even with that you see what a game is played with these providers. Drs. and insurance companies in constant debate about what is "needed" and what is wanted. An endless stream of letters of "medical necessity" clearly designed to slow the process and delay benefits. Every initial claim is denied, then reviewed, then approved or denied again because they need more info and yet another "medical review". Then ultimately approving what was clearly a necessity from day one, at least 30-45 days after it was needed. In the middle of it all are amazing nurses, Drs, and parents all trying desperately to do the right thing for their loved ones. It is absolutely exhausting to keep up, but I am motivated by getting Jo everything he needs regardless of denials and bureaucracy. I am 100% certain, as I've learned this lesson with my autistic son previously, the insurance company is counting on your weakness, banking on you forgetting, capitalizing on your frustration, and drawing every request out as long as possible, assuming you will give up, they've got the wrong family is they expect that.
Enough negativity, we cannot thank you all enough for the support, we are blessed, and Jo is doing better everyday. He has already defied every prediction about his future, and he and God are just getting started!
Jojobinks, keep smiling for us it lifts us so high we can'T help but cry. You are coming back completely and the Lord is with you. We will be patiently waiting with you, God is giving us strength to rely on his plan. We love you to the moon and back sweet angel, YOU'VE GOT THIS!!!
Resting and healing
Jo continues to rest and heal at home and continues to show more cognitive behavior each day. He is awake and alert more of the day, and rests at night. He is getting a little better every day.
Not much change between my last post and today. Jo had one Dr. Appt. that was cancelled AFTER we traveled all the way to the appointment. Very frustrating as getting him places is extremely stressful and hard on Jo. He always suffered from minor bouts of motion sickness in the car. He was one of those kids who couldn't read or play a video game when we were driving or he felt nauseous. Well, with our new normal that hasn't changed and Jo has yet to make it through a trip to the Dr. without getting sick. The motion of the vans we use to get him around is more pronounced and bouncier than a normal car. He gets motion sickness far quicker, and it is hard to blame him, it is definitely bumpy!
Jo has nothing planned this week but wanted to make a short update to let everyone know he is doing fine! Thank you all so much for your prayers and thoughts, we are blessed to have so many angels in our life.
Jojobinks you are amazing and continue to get better with each day. You have made so much progress in your healing it is obvious that God's with you healing you as only he can. Don't be scared rest with him and we will be here patiently waiting. We are filed with hope and faith that in time we will look back on this miracle together. We love you to the moon and back sweet angel, you've got this!
the new normal
Jo has been doing great since my last post. Part of the new normal is my inability to update as much as I'd like to. I promise to get better at keeping everyone updated we have had a busy few weeks.
Jo rests and heals each day with minimal discomfort. He opens both eyes WIDE and has shown alot of neurological positive signs the past couple weeks.
Jo has had several Dr. Appts over the past couple weeks and it is the most difficult thing to handle from a care perspective. It is the process of moving him from the bed, to the chair, to the van, and then doing it all over again after a 20 minute appointment. Jo struggles with motion sickness and is just super uncomfortable the entire time. The drives are extremely stressful to us too since we hate for Jo to be under stress and we have little control of his care during the drives back and forth. We appreciate the prayers for Jo and us for our appointments, it is very difficult on all of us.
We have had many visitors the past few weeks and both of my sisters have been in town as well. We are blessed to have Jo surrounded by his cousins and his amazing Aunts. He has so much love around him.
In addition we are constantly lifted up by our friends. I can honestly say that without the support we have received we could not have made it through this trial. God has provided, and surrounded us with angels. Every time we feel down or struggle someone is there to lift us up. It is God's work when we receive texts or phone calls at these moments of despair, and the timing is always perfect. When the overall gravity of the situation hits us, or doubt tries to find its way in, angels surround us and we are safe. Jo is resting with God and we are surrounded by angels, who could ask for more?
We have unwavering faith that Jo is coming back to us completely. We will not lose our hope. We know it will take time, it will be very hard, it will drain us at times, but we will not lose faith. God has already performed countless miracles and Jo is only getting started! His testimony to God's love is still being written, and his plan is only known to him. Our job is to be there, love Jo with all our hearts and praise God, and that is what we will do. We are blessed.
Jojobinks you are so amazing! Everyday you push through the pain and stay strong. You are getting better and we can see it. Be patient with Mom and Dad as we learn how to trust the process and be patient ourselves. We cannot rush God's plan, and he will not let you fall. Smile more for us would you? Mama wants to see those dimples! We love you to the moon and back sweet angel, you've got this!