So, for starters, I took Kendrick to the pediatrict Gastroenterologist a few weeks ago in Sioux Falls at the Sanford Children's Hospital, and while since then there has pretty much been a TON of poop, we DID successfully complete a very solid 3 day cleanse, and he's feeling a TON better. We've been working hard to maintain that progress, but it's a bright spot to what has been a VERY long three years of GI issues for the little guy. I've had more questions lately about what caused this and if there are actually "issues", or if it's constipation or what, and with the combination of therapists and doctors and now the GI, they believe that since the timing of the accidents, starting AFTER he was already successfully potty trained for almost a year, coinciding with Mark getting sick, that what happened was that he began to hold onto his poop as a form of control (which is common with young children in traumatic situations), and then, since the colon is "lazy", as the GI explained, it simply stretched out and he began losing the "urge" to go, which compounded things (figuratively and literally). It's good to see him feeling more confident, and we've already decided that if he goes a whole week with regular BMs, he'll finally be able to switch back to normal underwear, which will be a HUGE relief to this Mama. I hate having him in pull ups, but I was cleaning out poopy underwear for two YEARS before that, and it was one of those things I just had to give in to, because I couldn't do it anymore. So...there's that! It's a huge bright spot for us right now!
After all was said and done, I've seen a MUCH happier Kendrick overall, aside from some isolated incidents here and there. He actually chose to wear underwear for the first time in over a year this morning, on his own, without me prodding him. I'm so, so proud of how far he has come, and I'm really hopeful that we'll be able to move forward now without these worries!
As the seasons change, I've already successfully swapped out all our summer clothes for winter clothes (which, for 5 people is no small feat), and I have all the new clothes and shoes here now and ready for the season, with all the kids in slightly-larger-than-necessary clothes and shoes, so they should be good for a while now. It feels good to be settled and everyone having what they need in that regard. Whether we can FIND it all, however, will be the challenge. Kinsley has this trend right now of taking all her freshly laundered clothes and putting them in her backpack and carrying it all over town, so finding things in the mornings has proven a challenge.
Preschool started two weeks ago for Kinsley and Ryan and one week ago for Cashel and Kendrick. As they are both under age 5, Kinsley and Ryan are not included in the governor's mandate for wearing a mask, but with Cashel and Kendrick, they are, which so far hasn't proven problematic.
I have been making solid progress on a handful of things at work lately as well, which helps tremendously with my mental health. When things get behind or overwhelming, it's hard to focus and sort through the chaos, so it's always very helpful when the storm starts to settle more. I just got my new work laptop set up finally (it has been kinda finicky with the myriad applications I have to install and configure) and with that switched to a new keyboard and mouse, and so it feels kinda like I've "cleaned house" at work as well, and it's...it's fun :)
As far as Mark is concerned, I mean, it's no secret that things have been hard lately. It's very, very evident that so, so many of his aides and nurses love him so very much, and are very supportive of our family. They have all expressed how much they love working with him, and how honored they are that they get to be part of his life and our story. Considering some of the stories I've heard from other FTD friends and families, I feel beyond fortunate that we have been able to have such kind, compassionate, caring staff that is so informative and encouraging and who just flat out love their residents. It's evident not only in how they relate and respond to Mark when I'm there, but also in how well they love and care for the other residents with such calm, joyful spirits. I'm sure, like with any of us, that they have their days too, where things aren't great and they're frustrated, but I've yet to see it. Honestly, if ever I would consider a staff "FTD care experts", these are those people. That's not something to take lightly! If they can figure out how to manage a very large, young FTD patient with love and compassion, they are committed to their jobs. As you can see, these workers aren't strapping men, but rather fairly small younger women, even, so there's something to be said for methods and mannerisms over brute force when it comes to FTD.
I'm also EXTREMELY grateful that I have been able to do in person visits (with mask and face shield, of course), as across the country, this is still mostly not allowed. It's so hard to visit with Mark as it is, with his attention span being so short, so the fact that I, as his essential caregiver, get to visit inside, it helps tremendously. It turns a 5 minute window visit into an hour long visit where I can chase him around the facility and walk or sit with him and show him videos or pictures of the kids and tell him stories that I wouldn't be able to if we video chatted or saw him through the window.
On top of all that, hospice was approved for sending a massage therapist for Mark now, which is so great! He was so, so tense when I visited a few weeks ago, but as soon as I rubbed his neck and shoulders, it was as if he was in a different world. He had been playing Candy Crush, and he just stopped and closed his eyes. I asked him if his neck had been sore, and he said "yeah". Hospice, if I haven't said it before, is incredible. I'm so pleased that they are on board at this point, to keep him comfortable.
I got to sneak away for a little weekend getaway with my sweet friend Jenna (whose husband also has FTD) while my kiddos stayed with their former daycare provider and got to go camping. I had planned it a while back, so it was good timing with the sudden uncertainties about Mark's future care. We got in a really nice, long walk, had some yummy food, and enjoyed walking around in downtown Galena a bit. It's always so refreshing and endearing to encounter other FTD Spouses in this journey who really, truly get what it's like to be in the phase of life we're in when we go through this trauma and devastation. FTD Spouses are my warrior friends, and while I'm so, so sad that my dear friends are also walking through the fire, I'm so, so glad I got to meet them and watch how the Lord is using them as well.
I have also been able to continue having my little Mommy and Me dates with my kiddos lately, for just an hour between when I get off work and their daycare closes. It isn't much time, but the kids LOVE it, and they can't wait for their special day with just Mom. They pretty much all choose to go to DQ and get some ice cream, but beyond that, their dates range from sitting at home watching Netflix to hunting down frogs or fish to playing at the park together. I really have looked forward to it more and more each week as well.
While we've been really saddened by all our favorite fall events being cancelled this year (Kite fly in Jackson, Reinbows Rodeo, King Turkey Day race and pancake feed and parade), we're celebrating the things that we still CAN do, like picking apples at the orchard! I really try hard to keep things as normal as I can for the kids.
My biggest goal throughout all of this FTD stuff is for them to emerge compassionate, understanding and sensitive to others, but mostly as unscathed as is possible. I want them to learn the coping skills to process things as they happen and not let things build up and then explode. I know as a kid, I internalized pretty much everything, and it wasn't healthy. In learning about myself the past few years as I process grief, I know I need to help my kids do better than that. Trying to keep things normal in the midst of a pandemic has been a challenge, but I think just continuing to do what we can when we can do it is key.