I hope you have all been enjoying spring and all the beautiful signs of life and renewal that come with this time of year. I have a lot to fill you in on, so please fill up your beverage of choice and settle in for an update...
Andy has been doing GREAT! There have been a lot of ups and downs, good days and not-so-good moments, successes and difficult struggles, improvements and setbacks... all of which we know are completely normal. Physically, Andy continues to improve at a remarkable rate. He gained the lost weight back and looks much healthier. He had a lot of roundness in his face due to heavy dosing of steroids, but he is weaning off those. He doesn't need leg braces and now has orthotic inserts to provide support to his feet and legs so they can be in the proper position when he is walking, scooting and running around (yes, even running! 😆). His foot and leg muscles atrophied so much that he has completely flat feet now, but hopefully that will be remedied over the the next few months. There is a park in front of our house where he can kick a ball around and play on grass with the neighbor kids, so he gets plenty of natural physical therapy almost every day! He uses the wheelchair at school and when we are walking longer distances or in public places because he is still building up his stamina, plus his legs tend to give out unexpectedly and he has had several wipeouts at inopportune moments or in dangerous places. We also recently learned those could be a different type of seizure, so we have been advised to be very careful. Regarding seizures, he still has seizure activity, but it continues to improve. More on that later...
Cognitively, he struggles with fatigue, distraction, memory loss, short term memory recall, processing speed, headaches, sensory overload, etc. but his speaking skills have improved dramatically. He uses a few strategies to help keep his speech on-track and does not seem to get stuck in loops like he used to. He is back to school a few mornings a week, and we hope to keep adding more time at school because he thoroughly enjoys the social interaction and time with his teachers. Those of you who know him know that has always been a very social guy, and I am grateful to say he still is! 😉 He has a great support team there who have made extra effort to accommodate him, and we really appreciate that. 🙏🏼 We communicate about his progress, ideas for keeping him engaged, etc. and they make lots of adjustments as we are figuring out what works best for him.
He experiences quite a bit of emotional drain when thinking or talking about what happened to him, so we try to keep that to a minimum. We see some of his friends from the neuro floor when we are at his weekly appointments - he makes it a point to visit all of his nurses and doctors when we are there. I think he has some guilt about how well he has recovered because he sees other kids who were inpatient with him who are not doing as well as he is, or whose recovery is much slower. In the moments when his emotions overwhelm him or he cannot complete his therapies because of weakness or fatigue, he cries these giant tears and asks me if God is punishing him for something bad he did that he cannot remember. It breaks my heart to hear him say that and I do my best to reassure him, but I have heard Andy say that enough times that I have asked for someone better versed in those conversations to help me help him.
Part of the reason I haven't written anything in a while is because I consulted with Mayo about Andy's case - his diagnosis, treatment plan, recovery, prognosis, expected quality of life, etc. - then waited for the results. Then I had to process them and decide what I think is in Andy's best interest. I trust the Children's team immensely, but felt like I needed to obtain an independent evaluation on my own. Essentially, Mayo concurred with Children's but also agreed with me that some medications could be weaned and/or substituted. I met with his medical team at Children's to propose changes based on what we learned from Mayo. So that medication that my insurance won't cover (at $1000 per day!) is being slowly cycled out. Other meds will be weaned so we can try to minimize the amount of medications Andy is taking and we can see how he does. If he has an increase in seizure activity, we will adjust accordingly. We still do not have a clear diagnosis or cause for what happened to him, which is very disappointing to me. It was not viral or bacterial or even autoimmune, at least as far as currently available testing can identify. So it's almost impossible to set a clear treatment plan, map out his recovery, articulate the prognosis or what to expect for the rest of his life. I still have not come to terms with that, but now that I have a second evaluation, from another highly respected source, I think it's best to accept it as is and move on from that to what is important: Andy's recovery and his quality of life.
When I was speaking with a doctor from Mayo and inquiring about Andy's diagnosis and prognosis, he told me not to "miss the forest for the trees." I have never been good at understanding expressions like that, and found myself perseverating on what that meant. I admit I was overwhelmed with all the speculation and options for intervention and clinical trials that were being presented to me, but while I was distracted by that phrase, I came to terms with a few things. I realized that I have been very focused on what this is, what's next, how do we get there, what's the right mix of medications, therapy, etc. Lots of calculations and "if this, then that" type of language. I think that for now, it is healthier for us to embrace the beauty of where we are in the forest. I don't need to identify every tree, bird, and critter in the forest and pinpoint its location on a map in order to enjoy the fact that this is where we are right now. This is what our life is right now. This is who Andy is right now. No matter what happens, or doesn't, he is a blessing and a super fun kid who manages to find the joy in life in the craziest ways.
I had a lot more I wanted to say, but this is still so emotional for me, that I tear up as I write. 😢 So I am going to provide a few more updates and sign off to enjoy the rest of this glorious Easter day with my incredible boys who are both gifts from God. 🙏🏼♥️
Please join me in wishing them both happy birthday! Giovanni just turned 17 last week and Andy turns 12 this week! 🎉🎂🎈Quite an exciting month of birthday fun! This experience has made me appreciate how grateful I am that we are celebrating both birthdays and they have so much future and life ahead of them!
Unfortunately, Giovanni was not selected for the international program, but while really disappointed, he took the news in stride and is looking for other opportunities to develop and contribute this summer. He is applying for a summer leadership development program at the University of Denver, Boys State, volunteering, and a job! He is in the middle of the swim season at his high school and doing well (hoping to make it to state in mid-May! 🏊🏼🤞🏼). We have been visiting universities and trying to figure out what is next for him. I am so very proud of this special young man and how mature, responsible, resourceful, thoughtful and fun he is. He has great taste in Netflix shows if you ever need a recommendation 😉
I am grateful to be back at work part-time. I have a lot to juggle right now, and am working hard to achieve a happy medium with the boys, Andy's appointments and therapy, and work. I am fortunate to work with a great team of people who understand the need for family/work/life balance and have been incredibly supportive. Thank you 🙏🏼
I probably should not have put this at the end of the post, but it is something that I don't like talking about... money! 😔 Don't worry, I am not asking for any! Those of you who sent cash or checks during the time we were in the hospital - please know that I am truly grateful for your generosity! 🙏🏼 I am not used to be on the receiving end of anything like that, and at the time, I didn't know what to do with the checks because I barely left the hospital and hadn't been to a bank in a while. Tandy used to tell me that I would need the money when we left, but I was so stuck in what was happening at the moment that I couldn't imagine what would we might need in the future, so I sent them home for safekeeping. I also naively thought that since I was lucky enough to have a job with medical insurance, everything would be covered. Well, now that the insurance company has processed the claims (and denied a LOT of them - still working on that) and even though Children's is an in-network hospital, I still have to pay a percentage of the procedures and equipment, and some things I consented to are not covered (like that blasted medication!)... Well, you get the idea. Anyhow, I went to the bank and set up a special account for Andy's medical bills. For those of you who sent checks, I will deposit them late next week unless you let me know I shouldn't (some of these may be hitting the 90-day mark and I apologize for the delay and accounting inconvenience!). And please don't worry, we are not going bankrupt or anything like that!
I wish you all the joy, warmth, sunshine and fun of spring and the Easter season. I am sincerely grateful for your support, encouragement, prayers, generosity and kindness. Thank you for staying with us on this journey as we celebrate the beauty and positives of where we are right now in this great forest called life. 🤗❤️🙏🏼