What a week this has been!

We arrived in Salisbury, MA., last Sunday after two arduous days driving from South Carolina. Saturday was gorgeous, Sunday not so much. Torrential rain fell almost the entire way.  We snuck onto our campground right before the closing bell at 8 pm. The 13 hour and 16-minute drive turned into a whopping 20+ hours. Traffic and weather all conspired against us to block the views and turn a relatively doable two 7 hour days into what it actually ended up being – but we made it, road weary and full of anticipation.

Once we got to our assigned camping pad, we set up shop. We do not travel light so this was no mean feat. Several hours after we arrived, two soaking wet and absolutely exhausted parents fell into bed. S certainly took the brunt of the rain as his outside duties when camping far exceed mine and for this, I am eternally grateful. 😀

Monday morning at 830 am we reported to the clinic. Everyone was super nice, chatty and helpful. .We had to take initial assessments which took us a shade over an hour. As is typical, the girl did her own but the boy face deep in his phone had me fill his out, really it was just too long for him to maintain his focus and that’s one of the reasons we are here.  We got through that assessment the best we could while we had an opportunity to chat with more people completing the program. We got that opportunity when we first arrived as Monday morning is very busy. I was grateful, this certainly helped tremendously to alleviate any doubt we initially may have had. I do hate that I am now so skeptical about everything but honestly if we had $100 for everytime we had heard “those other people are …. of course we can help you” we would, well, we would probably have all our retirement back 😀

After our tour and the assessment, Monday became a free day. Dr. W and his staff had spent a lot of time with us, showed us around but we could not really get started until Dr. W had taken the time to review those assessments. To our delight, they really appreciated the fact that we drove from out of town and knew we had to be back in SC to begin school the third week of August, they were diligent in putting our individualized program together in a timely manner which we really appreciated. On Tuesday we returned and subsequently left after about an hour with a huge bag of supplements and 2 binders full of instructions. One folder for each kid. Overwhelmed is a good word to insert here. Of course, we have started new programs before, but none have ever been this organized or so completely different than what we have been doing for so many years. We returned to the camper (home) and put all our current meds and supplements in a safe place (just in case! lol still so cynical). Wednesday was our first real treatment day and the kids ran through the protocol in about an hour and a half. Oh boy were they not happy. On Monday we had to remove ALL sugar from their diet. ALL SUGAR and as B exists solely on lasagna, pizza, and candy, it was a meltdown worthy of an award (and before any comments surface about diet, trust me I controlled everything this child ate for about 11 years, he was still a very challenging child and the fights that ensued from denying him “normal food” became more detrimental than the food I was avoiding. So choices were made and slacking off was necessary. We can’t control everything our kids do as we all find out in the end). Anyway, while they are very unhappy they have grudgingly 100% committed to this way of eating – at least for now. The girl less so than the boy but her hypoglycemia and anxiety over food has been a “thing” for a very long time. Controlling her food is not an option. I decided while we do this to just stuff the fridge and cupboards with anything they can eat and just say yes whenever they ask for food. It is slowly working out. She certainly is toughing her way through to new habits and I truly am super proud of her for sticking with this. It is really not easy to change old habits and there have been several shaky, nausea, dizzy moments which I think is really just the sugar detox shock.

Thursday was a totally free day so we took an opportunity to go to the beach and sign B up for surf lessons, but we are a P.A.N.S. family right, and so it was not that simple, not even close.  The sign up happened, the beach did not. The fight that led to me storming out of the car and sitting woefully on the pavement sobbing my face off was not a small one. I am not even sure how we offended B but he lit up with epic proportions which have been happening since we arrived here in MA, well actually even as we made the decision to come. He is just so angry about missing summer at home and I do understand that. He is also beyond angry when he craves something he can’t have which I also understand but that doesn’t make it easier to handle the berating that comes from that. It has been, shall we say, challenging. On Day 3, he woke during the night to continue his tirade at me, which hasn’t happened since he was a little boy only now the insults and language are far sassier I assure you. I don’t know whether to laugh or cry, I know I often long for the days that sign language was our main form of communication, at least then I wouldn’t have to get the urban dictionary out when he was yelling at me. Anyway, I am hoping that the surfing will afford a radically new distraction and offer some relief from their angst about being here.

Friday was another treatment day (1.5 hours) and then a mad scramble to find an orthodontist because A’s brace wire was in her gum. Scored big time, called a 5-star Yelp review orthodontist and she was at lunch, she told us to come straight in, proceeded to quickly adjust the wire and then we were on our merry way again. I do love it when life is easy. I, of course, YELP’d a 5-star review – credit where credit is due!

It’s good we don’t have to be at the clinic now until 3 on Monday’s because with all the new supplements and the new routine, added to the challenge of camping and cooking outside, it takes me about an hour to get breakfast going and another hour to get the supplements out and into each kid with a little bit of downtime for washing up and organizing before the next round begins.  I am feeling like it’s a full-time job right now but of course, it’s getting better. As with all things new, the learning curve is steep but I know we will settle into a more reasonable schedule (I am sure we will right?).

The area we are in is very close to the sea but outside of the clinic and set up, we really haven’t had much opportunity to explore or figure out where the best places are to go. We have so far located the closest Starbucks, Walmart, Home Depot, and the local Fluff and Fold. The idea of camping AND using the laundromat is currently just too much to contemplate for me right now, so I handed over 29 pounds of laundry and grimaced as I paid $34 for a wash and fold, but to heck with it, the clothes come back GAP-style folded and I don’t have to deal with it and that my friend is worth $34 in my book.

So all is semi-well in our world. The first week is down, 11 weeks to go and we are doing okay. We could use a hotel break here and there especially as we now have a wicked infestation of carpenter ants inside our camper. Our spot is located close to a dead tree which housed a large carpenter ant colony apparently. We only know this because they have all moved into my camper it seems. Maintenance came and cut the tree down today but I can’t get a pest control company out until Monday. This situation has caused us to temporarily move into our tent, but again we are managing. I am just hoping the pest control company can remove the ants before they do serious structural damage to our little camper. Keeping it light for the kids but super nervous about the possibility of that. Behavior wise, the first 3 days were horrendous. I can only assume the move, the camper, the difficulty with bugs/ants, the new diet, the new supplements… well you get the picture, it is ALL different and for 2 kids with P.A.N.S., mood disorders, OCD and severe anxiety triggered by the Lyme, this just sends them into one flare after another. We are asking a lot of them, but we will manage. Really as bad as the first few days were, the last 2 days have not been awful. Besides being more than upset about something (really again, no idea) when we left Trader Joe’s today, the day has been semi-pleasant. Even my attempt at Paleo cauliflower pizza didn’t spark much in the way of distress, although the critique was quite harsh to say the least 😀

Anyway, even though there hasn’t been any work in my work pool for 2 days, our shower goes cold after 10 minutes, and the campground is in the woods which is beautiful, but full of flying, nasty, biting creatures (and not forgetting there are ants INSIDE my light fixtures) we are doing okay and hey, at least it finally stopped raining.