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Posted 2018-09-24T19:36:20Z

Therapies, Supplements, Food Allergy, and Surgery

Our family has been so busy!  I keep telling myself that things are going to slow down, but I am coming to the realization that this is our new reality and things are just going to keep picking up.  I am trying so hard to balance activities the kids enjoy, with therapies and appts, and quiet family time.  It's tough and I know it'll never be perfect!

BEN is doing so well in school!  He loves it so much.  I walk him to his classroom every morning and hear "hi ben!" from both teachers and other students throughout the halls.  He is becoming well known and has lots of friends.  At the homecoming parade last week, a kid yelled "BEN!!" and waved from her float as she went by and another kid said hi to Benny at the cross country meet the big boys had this past weekend.  The boy told me that he was in Ben's class.  This is so heartwarming for me.  I have worried so much about how he would do in school.  This smart little cookie even knows his way around the school (a little TOO well).  A few weeks ago, his teacher let me know that instead of waiting for his para to come get him after therapy, he walked straight back the classroom by himself.  We're working on waiting - which is so hard for him.

We finally have respite care set up for Ben.  We are meeting with his new provider tomorrow afternoon.  He is eligible for 20 hours a month, or 60 hours a quarter.  It doesn't matter how we use them, but they cannot carry over to the new quarter.  I'm hoping that maybe I'll be able to use some after school, so he has someone to keep him entertained while I make dinner and help the bigs with homework.  This is his worst time of day.  He holds it together at school and unleashes it as soon as he gets home - or sometimes even when he gets in the car after pickup.

We are also in the process of getting him signed up for Medicaid, which we so desperately need to cover the expense of his therapies.  We had his initial evaluation for OT (occupational therapy) and PT (physical therapy) last week.  Once the bigs are done with their fall sports, Ben will go once a week after school and get both at the same time.  I still need to get his speech eval scheduled.

I still haven't filled the prescription for his rescue seizure drug that he needs at home and at school.  I know I should, but I'm waiting for the "closure" from his video EEG and MRI telling me he actually needs it.  I had originally scheduled it for October, but Justin reminded me that it was harvest.  He's too busy with work during that time to be able to take time off to stay with the other kids while I stay at the hospital with Ben.  I rescheduled it for the second week in December.  We will check in on that Monday morning and he'll have his MRI on Wednesday before we go home.  It'll be interesting to see if his brain is healing, getting worse, or staying the same.

Mr. Big Foot was also fitted for new SMOs last week (hallelujah!).  He got his last ones a year ago in October and is well overdue for a new pair.  He picked (I picked) blue camo for his new print.  He'll have 2 straps this time (he only has one right now) and it sounds like they will be padded, so hopefully they provide him with some more comfort.  His orthotist said he definitely still needs them and they seem to be working well and doing what they are supposed to.  His feet/ankles collapse when he doesn't have them on.

JACK is struggling....with just about everything.....and it all hurts my mama heart.  Attending school this year, while being sick, has really thrown things out of loop.  I think he enjoys school once he's there, but getting him there is tough.  Since it is a huge trigger for him, he's angry every morning before we leave and often sobs in the car to not make him go and to let him be home schooled again.  He tells me he's depressed and super anxious.  He's struggling with the pace of school.  His brain can't keep up.  He often forgets homework, books, or papers I need at school.  He is struggling to complete assignments and is often very confused as to what he's supposed to be doing.  This is so unlike the old Jack who always did wonderful work in a timely manner.  He served Mass a couple of weeks ago and I watched him struggle to remember what he was supposed to be doing, when I know how seriously he takes it.  He knows what he's supposed to be doing but just can't remember.  He can't even follow one step directions anymore.  If I need him to do something, I pretty much need to walk him through it, start to finish, or it won't get done.  I just don't have time to do that, so he suffers.  He's lost joy in activities and sports he used to love, because they're either "too hard" or his body gets "too tired" from doing them.  It's hard to watch.  Several weeks ago, after an entire day or him telling me how much his body hurt, he was crawling around the house for an afternoon and bracing himself on every wall to get around.  Last week, while practicing spelling words before school, he was getting frustrated because his hand was shaking and he couldn't write his words properly.

After all of this, I decided it was time for a visit with his LLMD (lyme literate medical doctor).  Since she's in Minneapolis and I couldn't pull the other kids from school to get him down there, I did a phone appt with her last Thursday.  She's convinced his brain is quite inflamed and that it's impeding his function in school and at home.  She also said that we really to to get more aggressive with his lyme herbs - although slowly so he doesn't herx or flare (the worsening of symptoms).  She prescribed more supplements and I ordered them this morning.  I'm anxious to get him started, so that hopefully we see some improvement soon.

I also started taking Jack to the chiropractor.  He complains all the time that his body - especially his feet and neck - hurt.  I know it is the lyme (the parasites loves joints and tissue!), but I'm hoping the adjustments give his body some sort of relief.  Fingers crossed!

LUKE has been doing really well.  He loves school and often asks me to take him early so he can read or work on word searches with the big kids.  After really struggling with his reading last year, it's finally clicking and he's reminding me every night that he needs to read - and he's getting it done!  A couple weeks ago, we finally had allergy testing and it confirmed that he is allergic to cashews.  It's not a wildly popular nut, but we're having to be very careful when reading labels.  He's good at it and Jack helps him when I'm not around.  He was also tested for peanuts and hazelnuts, but those are fine.

JACK and LUKE have been super busy with fall sports.  Jack is doing flag football and Luke is doing basketball.  They both, on a whim, decided to try cross country this year.  While they both enjoyed it, Jack is definitely much more in love with it than Luke.  He wants to run everyday now and loves it because he can "run free and feel the wind" in his face.  Luke just wants to play rough and tumble sports. :-)

SAM Man is doing much better than before.  It was a tough transition for him to go from brothers being around all day to play with to just mommy.  I haven't had enough time for him, but we are enjoying our quiet time while the bigs are away at school each day.  There have even been days where we've run errands at 5-7 stores in 2 hours and he hasn't melted down at all!!  That right there is a miracle!  

He went with me to my first chiropractor appt a month ago, because I wanted him adjusted, but he wouldn't let the dr touch him and still hasn't.  I'm hoping we eventually get to that point!  I know he could benefit from it and it would help him sleep better.

I also finished his big boy room last week and he is finally in an actual bed and not just a mattress on the floor!

I'm doing ok - basically holding it together.  Last month, after I lost the use of my legs for a morning, I scheduled an appt locally with a dr just to check on things.  After checking over a few things in her office and seeing me fail the drunk driving "close your eyes and touch your nose" deal (I couldn't touch my nose with my left hand), she ran blood work (all normal), scheduled a brain MRI (normal), and referred me to a neurologist, assuming she'd run an EEG.  After the MRI came back normal, I cancelled the neurology appt.  I know this is all lyme disease and my blood work shows it.

During that same initial visit with the dr. I addressed concerns for a large bump that was growing above my belly button.  I knew it was an umbilical hernia and she confirmed it.  I met with the general surgeon a couple weeks ago and I will have surgery next Monday to repair it.  I was told it should take about 4 hours from start to finish.  Justin is taking the day off of work to drop me off and pick me up (and watch Sam).  It's an outpatient surgery and shouldn't be too big of a deal.

I started seeing a chiropractor about a month ago.  I am in constant pain.  Some days are worse than others, but it never goes away.  I thought maybe if I got adjusted, I'd start to feel better and I did initially.  I had more energy, was moving around better, and even painted and decorated a bunch of rooms in our house.  It's slowly gone back downhill again to where I was before I started going.  I'm tired, my whole body aches, my shakes are back (especially in my hands), the spots in my vision are driving me bonkers, and all I want to do is sleep.  I don't sleep well at night, because I'm tossing and turning from the pain. I've lost brain function as well.  I'm constantly forgetting things and just can't put thoughts together....unless I'm writing. :-)  My chiropractor thinks my body is probably too inflamed (hello lyme disease!) to be able to be adjusted correctly and to absorb nutrients and minerals properly.  I'm going in tomorrow for a computerized body scan.  I'm hoping to get some answers as to what is going on.  I'm tired of feeling like crap.  I want to enjoy time with my kids again.  I want to start running again, so Jack and I can do it together.  I just want to be able to function and not just "hold it together".

So that's our busy life!  Thank you for continuing to stick with us and our story and muddle through my rambling.  It's healing for me to put everything down in this journal.  My hopes in sharing our family's intimate details is to spread awareness and education for all that we are going through - lyme disease especially.  Know that not every child/person who is doing poor work or not able to follow directions in school, is actually a poor student.  Not every child/person who declines a food or treat is a picky eater or someone being rude.  Not every meltdown you see is because of bad parenting.  And not every mom who is holding it together on the outside, is actually holding it together on the inside and "doing fine".  Many disabilities and illnesses are invisible.  We all cover them up just to make it through our days. 

Till we meet again -


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