It’s been quite a while since our last update; my apologies! Let me see where we left off…
The last two weeks in India were productive as usual. Tyson continued to work hard during his PT and OT sessions and received a whole lot of stem cells. Dr. Shroff explained to us that there is a constant battle going on in his body: the Lyme has tricked his body into attacking itself by killing the motor neurons which send messages to his muscles to grow and function, while the stem cells are going in and cleaning up the mess (damage) the Lyme has caused, regenerating cellular function and allowing the Lyme antibiotics to work effectively and efficiently. So, we need to keep at this aggressive pace until we get ahead of the curve and outrun the Lyme bacteria. I hope this makes sense to you all. It’s possible (and we are optimistic) that the Lyme bacteria is slowly going away but still so much damage remains in the wake of its destruction.
The doctors ordered a chest x-ray for Tyson right before we left. Some of you may recall that Tyson was hospitalized last November bc he was gasping for air…Tyson’s breathing has gotten slightly better since then, but he struggles still once in a while. His breathing issues were initially the result of bi-lateral pulmonary emboli (blood clots in both lungs) and now are most likely due to his chest muscles weakening, thus making it more challenging to take deep breaths. Anyway, as a result of the blood clots, part of the lower section of his left lung is now dead and he has multiple infarcts (dead spots) on both lungs. The infarcts are probably still partly to blame for his current breathing issue. We were initially told that these infarcts would always be there. The drs in Greenwich put him on Coumadin to thin his blood a bit (which he was able to stop taking once we started w Dr. Shroff’s treatment). I had Greenwich Hospital send over last year’s X-rays for comparison and they believe some of the infarcts are going away! He still needs to work on strengthening his chest muscles by doing breathing exercises and we still need a pulmonologist to do an official comparison and updated progress report, but this is another potential gain for us!
And as you can imagine, we were so eager to get home to see Calvin. The 4 1/2 months we’d been away from him over the course of the year had caught up to us (and him!). We arrived home the day before Halloween and had the BEST reunion with him and every day since our return has been spent re-grouping as a family. So wonderful!
So once we got home, we worked to get Tyson back into out-patient PT and OT at Burke upon our return. However, we learned that we had exhausted all but 5 visits allowed by our insurance company, so we have been spreading them out to one visit a week until the end of the year. This is incredibly frustrating on many levels; Tyson’s condition is critical and should be given different consideration than the “norm” by our insurance company. He requires therapy at least 5 days a week in order to see any improvement. The wonderful thing about his state right now is that he responds SO well to therapy; conversely, without it, he remains stagnate and slightly declines some. I seriously hate venting like this, but I feel it’s important to explain. Before our last trip to India, our doctor at Burke told us they’re starting an “in-between” program that allows 5 days a week of therapy but you don’t have to be in-patient at the hospital. This is so perfect for Tyson because it’s the level of care he needs without living in a hospital (which doesn’t help him mentally or emotionally). Hopefully we can get this rolling soon!! My next mission is to find a service who could take him there every day so that I can continue to work. Wish me luck!!
Last Monday, we met with one of our amazing Lyme doctors, Dr. Liegner. I have been keeping him posted with Tyson’s progress but we hadn’t seen him since the week before our first trip back in January. He was very impressed with Tyson’s brain scans and his overall condition compared to last year. He is running more Lyme tests to see if anything has changed. I asked if there was such a thing as a test that could detect the actual levels of Lyme bacteria in the system and he said “not exactly”…this test hasn’t been developed yet. However, the labs he’s running now will help clarify a few things. The BEST way for us to measure Tyson’s improvement is by clinical progress; seeing him move more, etc.
Dr. Liegner also urged us to have a neurologist take a look at our case because of the devastating neurological manifestations the Lyme caused. It’s important for a specialist to track progress from that end. Our trouble has been in finding a Lyme literate neurologist. Most neurologists we’ve seen have told us we’re crazy and “Lyme doesn’t do this”, and to get our affairs in order. Dr. Katz in Orange, CT is a board certified neurologist who understands chronic Lyme disease and how it manifests into neurological disorders. We got their first available appt at the end of January…but thankfully, their office called yesterday and he can see us tomorrow!! Another expensive appt but hopefully insurance will cover it. Regardless, it will be highly beneficial for us. Also-Dr. Katz has sent several patients to Dr. Shroff’s clinic AND he recently gave a presentation at the ILADS conference in San Diego. It’s so important to work with doctors who are understanding and sympathetic to our journey, rather than tell us we are wasting money trying to fix him.
I’ve been thinking a lot lately about what I am grateful for and what we as a family are grateful for because I think gratitude is such and important factor for healing and being happy. I think about where we were a year ago. Life got really scary and everywhere we turned for help, we were given devastating diagnosis’s and told to prepare for the worst. We wouldn’t be where we are now without the love and support from our family and friends. Our friends and family in Upstate New York as well as our Polo family organized huge fundraisers that have allowed us to pay for doctor’s visits, expensive testing, hospital bills, leg braces, rent, etc. Thank you all for that–we never properly had the chance to thank each of you who was involved and I know the numbers are in the 100’s. Tyson and I were incredibly touched by the generous donations and support you’ve all shown. Thank you for the dinners you sent to our house or groceries you helped buy…one less thing I needed to worry about at the end of an exhausting day. Thank you for the phone calls and house visits, too! And thank you to Cal’s amazing daycare who take such great care of him and who keep us posted on how well he is doing in school while we were in India. And to “our girls”, Katherine and Vanessa who care for him while we we’re away AND who continue to help us all the time so that I can continue to work. Ok- this is beginning to feel like an Oscar acceptance speech, but bear with me!
We’ve made an incredible amount of progress in 12 months and are so grateful for that. Thank you to our drs who’ve supported us and fought for us, like Dr. Bouboulis, Dr. Liegner, Dr. Murphy, and Dr. Horowitz who introduced us to the incredible Dr. Shroff on the other side of the world. We are so grateful, too for the friendships we’ve made with the staff and other patients at Nu-Tech. You’re all so inspiring!!
So when people ask how we’re doing- the best way to respond is by saying “great!” We have a long, long way to go and we are by no means “out of the woods” yet but we are confident and extremely optimistic. Things are still difficult and frustrating at times but I know Tyson WILL walk again and be able to cook us dinners, play golf, and play catch with Calvin soon!! I can see it!!
And finally, speaking of happiness to look forward to…Tyson and I want to share some more amazing news with you all!!! We are expecting our second child in June!!! We are so happy and Calvin is very excited to be a big brother 🙂 We always wanted Cal to have a sibling. Everything happens for a reason and this is truly a wonderful blessing.
So as always, thank you for keeping Tyson, Cal, and myself in your thoughts and prayers.
More to come soon!!