Showing posts with label moving. Show all posts
Showing posts with label moving. Show all posts

Friday, January 15, 2010

So Much Newness!

So much newness! A new house, school, community. And Leo is 11!
The kids LOVE it here, although they miss their friends. My biggest concern, of COURSE, was my big boy. Would I undo all that we've done? We moved largely to be out of a tick endemic area. Which kid is most important? Upsetting the apple cart vs. having a cleaner environment for my daughter?
Fortunately he seems to be thriving, also demonstrating there are no holes in his programming and that his recovery is real. Out of his comfort zone of the same kids, school, neighborhood, and community. It amazes me how he has the confidence and adaptive skills to adjust to EVERYTHING being new.
The cleaner environment seems to help HIM in addition to Sydney, as he does struggle with his bacterial load, including a lyme co-infection Mycoplasma fermentans. He is asymptomatic about 95% of the time (tic-free, headache free).
Leo continues to love sports, loves playing basketball and baseball. Still amazes me he can do it and CHOOSES it after he had such a hypersensitivity in his face for everything, let alone flying objects. He is actually good at it! And again, with completely different kids in a different league/culture. Another adaptation.
Leo had a very successful class birthday party (just the boys) at our local gym. I can't believe he is 11 and that puberty is around the corner. Our next milestone. Grandma visited and so his birthday celebration was big in spite of being in transition.
We are still in LYME HELL with my 8 yr old daughter, but she has made progress this past year. We are beginning year 2 of her treatment. My goal is that she is pain-free by year 3 - seems to be a fair marker. So, I spend all day doing the things you know i am doing as a parent with a special needs child.
The kids play every day with the neighbor kids in our new cul de sac. It's so surreal to me, how happy they are running around, knocking on doors. Going back and forth between houses. A really really nice group of kids (so far, I am in the honeymoon phase!)
The kids have their own room, and as you can imagine they relish their new TURF. It's very cute how they are coming into their own as they mature.
I unpacked my homeopathic school books - I hope to start studying as things calm down settling into the new house. It'll wax and wane as Sydney's needs vary.
All in all I am happy with the new year, and hopeful that Leo will continue to thrive and that Sydney continues making progress toward recovery.

Thursday, September 10, 2009

Living With Choices

This is my first post since our move. My family and I moved out of Lymeland across the country to the beautiful Pacific North West. No matter how you slice it, moving is hard even when things go as planned don't you think? My husband lost his job over the winter, so we decided it was a good time to look for jobs out of Lymeland. Fortunately, we were able to do it, and got out.

We are still adjusting to our radically different lifestyle - from living on 3 acres in the middle of the woods in a small town to a city apartment up 2 flights of stairs. I am having college flashbacks that's for sure! We hope to sell our house back east soon, and then we'll see where we stand. It gives me perspective to live like so many people do all of their lives with kids and dogs, in a much smaller living space. We really had it good living in a house where I could just open the door to let the dogs outside, the kids could come and go as they please. Now I abide by the poop schedule along with the school schedule.

As we drove away from our house for the last time it felt right. Not that I wasn't crying a bit, we all were, but it was grief just as grief is, nothing else like regret, uncertainty.

Although our lives are all harder for the time being, I am relieved that my kids are out of a Lyme endemic area. I had to face the music - my kids are SICK. My kids have weak immune systems, and will probably be this way for the rest of their lives. I have a hard time accepting this fact, something I work on each day.

A practical decision. Getting Sydney better is one thing, but then once she is "better", keeping her in the same place like a sitting duck was just too much for me. And for Leo too - he has shown positive results to some of the Lyme coinfections, but is basically asymptomatic at this point. He had the facial tics, but they are gone for the time being, and maintain him through Rifing, homeopathy, and an anti-Lyme herbal regiment. While I am ecstatic to get to the root of the tics, I have to keep up with the program to keep him healthy. A delicate balancing act - us moms all seem to have one.

Both kids continue to have naturally low Ig levels which is part of the issue with them keeping bacteria under control - strep, lyme, the coinfections like Mycoplasma, Babesia, and Bartonella. They are high with strep every time we test! The facial tics seem to be my barometer to illness for them. I'd prefer something else, but at least I finally know and the guessing game begins.

Some good news - Sydney had a major jump in improvement over the summer, counter to what I predicted happening with the toll and stress of moving. We continue to have her on 4 antibiotics along with homeopathy for support. We are SO RELIEVED.

As the ILADS doctors say (they are the DAN of Lyme docs), "There is no cure of these diseases. Antibiotics work to cut the population down to a point where the immune system can take over. This is where herbs and homeopathy come in for support." So that is what happened - we did a trial on herbs and that appears to take the credit for some of her chronic pain disappearing. For instance, her sore throat that she had for 10 months is now gone, courtesy of a modified Cowden protocol.

The kids are adjusting nicely to their new school. It is hard though, especially for Leo as a 5th grader. All these kids that have known each other forever. His new friend Kevin that he met over the summer hasn't played with him yet at recess. He is nice to him and says hi, but that's it for now. I know it hurts Leo, but he doesn't admit it. He keeps reaching out, playing with different kids in the "jock" group so far this week. For Sydney, it's so much easier as anyone with a girl knows. And she is younger, in 3rd grade.

I am hoping that what we'd done with Leo will not crumble putting him in a completely new setting on all levels. A temporary home, a new school, all new people. It was really the only truly hard thing to leave behind - knowing our old team was just minutes away if we needed them for an intervention or for tutoring . We had to weigh in on the cost/benefits - we now had to make a decision that had Sydney more in mind than Leo.

It's been heartbreaking seeing him miss his old BFF. They are very cute on the phone and on video chat. Validating on how deep of a friendship he can have. He was SO sad, and still is. I am sure it just takes time. I felt bad for his BFF too, his parents tell me he is having a hard time. A little displaced at recess, just walks around alone sometimes, not sure what to do. They were inseparable for 2 years. It's been great talking to Leo about friendships, and to teach him about long distance ones, and how you need to adjust for phone conversations. It's been a learning experience for us all. He wrote a lot of letters and emails, which seemed to inspire him and make him feel good.

Who knows where we'll end up or how the school year will end. My hope is that Leo will have a couple good friends to go to middle school with next year. I am anxiously awaiting his standardized testing scores from the spring - hopefully they'll be validating or be telling on what we need to work on. As his old clinical supervisor says "The testing is like a test for ASD. All it does is test for inferences." I know this isn't his strong suit, but hope he tests in the normal range like he did last year.

The husband is tolling away, his new job is great but overwhelming and beyond busy. It will be like this until next year. We also have one car, so public transportation is beginning to take a toll too.

For me, I am still doing the settling in errands and chores. On major medical duty - getting doctors set up, etc. I am a bit isolated in the apt, not in a neighborhood street yet making friends. But, I've met some really nice parents so far, just don't have that consistency yet. Time will tell.




Saturday, August 25, 2007

To Do List for fall

Gearing up to fall...

1) WARNING: About to Overshare...

Manage my newfound facial hair (I'm 42). I'm "loving" my new hormone profile. I am a natural blonde, and this soft furry mustache has sort of snuck up on me. I wonder if people have noticed! I've begun plucking the obvious ones, and I have to figure out the pros and cons to waxing. At least it's blonde though. I have a few long hairs that pop up now and then on my chin, I call them my witch hairs. They freak me out! Advice needed!

2) Figure out how to make an income that will support the kids in the event that disaster strikes. I can't even type the scenarios I'm thinking of! A friend's husband, at 43, died suddenly, and I consider it a wake-up call. I need skills people! I had a career in marketing which was quite lucrative before kids, but I'm basically worthless in that field now. My teacher salary barely pays for food, so I'll have to think of something. I am studying homeopathy on my own, but that would be a long shot and years from now as something to support a family.

3) Continue my obsession with High Schools. For starters, I began perusing the Newsweek High School Ranker. The cool part of this, is that if you click on "state" or one of the other columns, one can see the info that way. I don't particularly agree with the criteria, but it's gotten me to start thinking about criteria that's important to US.

Do we move? If so, probably middle school. Will our current town be appropriate for Leo and Sydney as teenagers? Our town is quite conservative, religious (many Catholics live here and we aren't Catholic). I don't want them to feel left out - it's already hard enough to be that age. Perhaps a place exists where being an individual is easier. We need a bigger house anyway - we are growing out of it, and the kids will soon no longer be able to share a room....