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The Sorby Family

Our family has many different diagnoses. This is our way to bring awareness to each individual and their needs along with keeping everyone up to date on what’s going on. [...] read more

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Posted 2019-03-26T19:09:11Z

Our way overdue update....

This blog post is way overdue!  There are days when I feel like my life is spiraling out of control and I hate it.  Admittedly, up until the last year, I was super mom.  I could handle anything life threw at me.  I was organized, always had homemade goodies for my kids, they were home schooled, and I was super organized, with a really clean house.  Yikes…I’m still processing through grief of the “old me”.  The “old me” would have kept up with this blog and lessened the stress on herself when the update is so unbearable.  I miss my “old life”.   It’s hard to let go of things that we can’t control, but I’m trying.

Our family has been crazy busy this winter. 

BEN – He is BY FAR the busiest member of our family.  Let me back up to last summer with him.  Right after school started, he had his round of yearly appts with his neurologist, endocrinologist, and physical medicine and rehab doctors.  Neurology wanted an updated extended video EEG and MRI, since it had been 2.5 years since his last one.  His doctor wanted an updated picture of the white matter in his brain, which has always been low.  His EEG was to see if we could finally “catch” the staring spells that he has, which are thought to be absence seizures.  Endocinology had drawn blood for Ben’s thyroid and his numbers were high.  He wanted us to have that rechecked to make sure that it wasn’t a fluke and that the numbers were correct.  PM&R wanted us to schedule a neuropsych evaluation for Ben to make sure that we get him the supports that he actually needs and can prepare him for where he needs to be in school.

Ben was finally approved for Medicaid this past fall (praise God!).  We fought hard to get it for him in MN, but due to income guidelines, he didn’t qualify, so we were never able to get him the therapy and supports that he needed.  We moved to ND and the doors have opened for him.  He has a respite provider that comes to our house Monday, Tuesday, and Wednesday afternoons.  She plays with him, works on life skills (like hand washing), and educational skills (like counting, colors, ABCs), while I help the bigs with homework and make dinner.  He loves his time with her.  On top of that, he receives speech in our town Tuesday and Wednesday afternoons and we travel a half an hour west every Thursday after school so he can receive physical and occupational therapy.  Fridays are our only day off from everything (which is why I look forward to them)!  Last Thursday, PT did his yearly evaluation and while they hadn’t scored his assessment yet, she told us that he is showing great improvement from where he was in the fall (YAY!).  The weekly trips are exhausting for the whole family (all kids pack in the car and go with), but knowing that it helping him makes it all worth it!  His therapist recently started doing PT with him in the pool each week.  Anyone who knows Ben, knows how much he loves water (and why that scares me so much).  It’s the arms flapping, huge smiles, and giggles kind of Ben love.  It really challenges his balance, which should help him when he’s on land.  After PT, OT works with him on dressing skills, so it’s a win win.

In early December, we were finally able to get Ben’s 48 hour EEG and an MRI done.  The two of us traveled to Gillette’s Children’s Hospital in St. Paul.  He did WAY better with this hospital stay than his last one (2.5 years ago), but it was still a struggle to get him to stay in bed all day.  He was video monitored, so he was only allowed out of bed for a 45 min break each day.  We weren’t able to “catch” any staring spells or absence seizures, but this EEG narrowed down the area of spikes to his left frontal lobe. In the past, all his EEGs showed spikes all over his brain.  When he has staring spells, he slows and turns his head to the right.  The left side of your brain controls the right side of your body, so it made perfect sense to me. The on call dr. recommended a couple of different meds for him to be on, but at this time, we have decided not to medicate him until (and if) they become much more frequent.  His MRI showed no change in the white matter of his brain.  He still is considered to have low white matter, but at least he hasn’t lost even more.  Due to a scheduling mishap, we were only able to see an on-call doctor during his visit, so we still haven’t met with his neurologist to go over all of this information.  Ben has another round of appts with doctors at the end of April, so it will be interesting to see if he has any different information at that time.

During Ben’s MRI, while he was sedated, we also had more blood drawn to check his thyroid numbers again.  They were still high, so he is now on a thyroid med.  They will draw more blood in April when he sees his endocrinologist, to make sure they are holding steady and that he’s still at the right dose.  During that same visit, I also scheduled Ben’s neuropsych eval.  It will be a very busy couple of days for him (and me)!

Ben is still loving school and doing well, although he has developed some defiance and aggression towards teachers, paras, and peers.  We are in agreement that it is probably due to his lack of communication skills and the fact that even though he wants so badly to be independent, he is still developmentally delayed and needs some added supports.  It has been extremely stressful for both Justin and me.  I’ve been trying everything to help him.  I’ve become even stricter with this diet and we have tried finding consequences at home, although he doesn’t really understand the cause and effect so it feels like we’re spinning in circles and nothing really works.  I finally decided I wanted to go the homeopathic route with him.  I found a good naturopathic doctor and took him there to see if there was anything that could be done, because Justin and I really didn’t/don’t want to medicate him for something like behavior.  We decided that his body needs detoxing and we’ve started him on a series of homeopathic sprays and pellets to help his body do that.  We also started using a CES (cranial electrotherapy stimulator) machine with him.  Actually, everyone in the family is using it except Justin.  I personally, have seen and felt the benefits of it.  An electrode is clipped to each ear lobe and when it is turned on, gives a slight buzzing sensation.  That sensation stimulates the brain with a current that treats anxiety, depression, anger, insomnia, and pain.  Ben wears them every night for a half an hour while he watches his favorite show, “Wheel of Fortune”.  We have also been making 1-2 visits an hour west to Fargo each week so Ben can have NANO SRT (stress reduction therapy) therapy done.  It’s a 7 visit series that basically heals the body from its stressors and puts it back into balance.  One electrode is attached to his middle finger on each hand and through frequencies and laser therapy his body restores balance and harmony and allows it to function better.  Now, I completely understand that this all sounds like “hocus pocus”, but we’re seeing healing in Ben.  Between the therapies and homeopathic pellets and sprays, it’s almost like he’s come alive more.  He started toilet training at school, he’s been much better behaved, and just recently, has become much more helpful at home.  Just the other day, Justin mentioned to me that Ben is walking more “normal” too.  This could all be a complete coincidence, but we had nothing to lose with trying something different to see if we could help him.  I’m a mom and I really don’t care how crazy I look if it’s going to help my kid!

JACK – Oh my smart and sensitive Jack……He had a really tough winter.  Just when I thought he was getting better, he’d fall right back into his hole.  We were dealing with severe anger and rage, frustration, lack of memory and his amazing imagination was gone.  He hated going to school and there were days when he cried when I hugged him goodbye and he begged me to just bring him home to home school again.  My heart sank every time I drove away and I would pray that he would have a good day and be “better” when I picked him up.  I was having a hard time treating him.  Funds are so tight when dealing with anyone who has Lyme disease.  Everything I need to treat him costs a FORTUNE.  We would get started on a protocol his doctor recommended, only to fall out of it once the meds ran out and we couldn’t afford more.  It was one step forward and 2 steps back.  We felt like we were walking on egg shells around him and to be honest, there were days I feared for his brothers’ safety because I didn’t know when his switch was going to flip.  There were days when I felt helpless because his body was in so much pain and there wasn’t anything I could give him to make it go away.  I’d catch him crawling around the house because his limbs were in so much pain.

In January, the CEO of the non-profit Jack received a grant from last summer, called me to see how Jack was.  She urged me to apply for another grant for him, so we did.  We were blown away (and I SOBBED) when not only did he receive another grant, but that his awarded amount was 3x what it was last summer.  Thank you GOD!  I quickly made another appt for Jack with his dr. in Minneapolis.  We hadn’t been able to see her because she is so expensive and insurance doesn’t cover ANY of his Lyme treatments or doctor visits.  Weather prevented us from making it to the appt, but we were able to do a phone call with her.  He still needs to get down to see her in person again, but it was a start for us.  She gave him a new suspected diagnosis of PANS.  PANS stands for pediatric acute-onset neuropsychiatric syndrome and it was brought on by his Lyme disease.  I’ve actually known that he’s had this for quite some time, but it was nice for a doctor to recognize it. (Only a parent with a sick kid could understand the excitement that goes along with diagnoses).  She gave me a huge list of more meds and supplements to give Jack.  I was taken back by the cost (it seriously costs about $300/mo to treat him), but with the grant Jack was given, I wanted to go for it and REALLY treat him this time.  I was tired of just treating one thing for a little bit and then having to stop because of money and then treating something else…..that wasn’t working for him.  For over a month now, we have been hitting his Lyme treatment hard.  He gets angry with me every morning and night when I shove a whole handful of pills and 5 different drops at him, but it’s making him better!  He hasn’t had debilitating pain in quite some time, his mood is getting better, and his imagination is back!  Earlier this winter, as an assignment, he needed to come up with an idea for a poster and couldn’t come up with anything.  It’s like our creative, imaginative kid was vacant.  He was getting really angry that he had to do this “stupid project”.  Recently, he had to do another one and he didn’t even need our help to complete it!  He’s still really struggling with his anxiety and depression.  We’re still struggling with getting him to enjoy the activities and sports that he used to and math, which was once his favorite subject, is still a battle.  I won’t stop fighting for him, because I completely understand what he’s going through and it’s a blessing that we have this disease to share.  I know that sounds utterly ridiculous, but when you have Lyme, no one believes you, so at least it’s something we can share with each other.

 

LUKE – Sweet Lukie always seems to be the “overlooked” child and I feel so awful about it.  He’s doing SO WELL in school.  We’re so proud of him.  He excelled in every subject when I home schooled him last year but I couldn’t get the kid to read.  He threw himself on the floor and cried when I pulled out a book.  “I can’t do it.  I can’t read” was his favorite phrase.  When he started school this year, I found out that the school pays them money for completing so many reading sheets.  Oh. My. Goodness!  That was Luke’s motivator!  There are days when I have to pull books from his hands to get him to do other things because he loves reading so much.  Heck!  I would have paid him last year if I knew that would get him to read!  No seriously though, he’s still the sweetest kid and always looking out for everyone else and we’re really proud of him.  Oh….and sports…..Luke is still ridiculously in love with all things sports.  He asked me the other day if I would come and watch him play basketball when he gets older.  “Mom, will you come to all my games and watch me play?”  His lifelong ambition is to be in the NFL.

 

SAM – I don’t know how our baby grew up so fast.  I recently mentioned to Justin how grown up he’s become.  He’s quickly bypassing his older brother Ben and that’s the hardest part, at least for me.  Right after Christmas, Sam decided he didn’t want diapers anymore.  That was it!  There was no “training” involved and a couple days later, we moved the diapers out of his room.  His street smarts are killing me and I can’t wait to see if this kid grows up to be a lawyer or president.  You should hear this kid’s negotiating skills!  And bedtime!  Oh man, can he milk a bedtime routine better than any of his brothers.  He constantly keeps us laughing and I’m just glad he’s (fairly) easygoing and I can bring him everywhere with me.

ME – I’m not even sure where to begin with me.  I’m a mess.  I had surgery in October to repair an umbilical hernia that I’ve had for years.  At that same time, I had started a treatment program through a chiropractor and was very hopeful I’d finally start to feel better.  After a month, I was no better and possibly even worse than I was before.  I decided to quit treatment (again!) for myself and focus on healing our kids.  The cost was just too much to bear for something that might not work, while I was trying to find the right fit for Jack.  The stress of the holidays made my Lyme horrible.  There were days I would lay on the kitchen floor, in the fetal position, crying hysterically because my body was in so much pain that I couldn’t move.  My heart palpitations were making it difficult to breathe and my body was shaking so bad that I couldn’t do anything all day.  Needless to say, our Christmas season this year was not good.  It was very good to turn the page on the calendar and start a new year.

Besides my horrible Lyme symptoms, I’ve had some very severe digestive issues happening since probably October.  I have put on 20 lbs since this fall (after losing 40 just a year and a half ago) and I eat cleaner than anyone I know.  It has now gotten to the point where I feel better when I don’t eat anything and I actually have a slight fear of eating and food because everything I eat makes me really sick.  I can wake up with a flat stomach and by the end of the day I look 9 months pregnant.  I have terrible stomach pain and I’m nauseated constantly.  There have been many nights of me doubled over on the floor contemplating a rush to the ER.  After the last episode, Justin finally convinced me to go see a gastroenterologist.  I did in late February and she recommended an endoscopy and a colonoscopy.  I had those procedures done last week.  Biopsies were taken from both procedures, but the dr. said everything looked good and everything came back normal.  He did say he found a hiatal hernia (part of the stomach pushes through the diaphragm muscle) when doing the endoscopy, but I will find out more about that during my follow-up appt.  I am also waiting on taking an at home breath test to test for SIBO (small intestinal bacteria overgrowth).  I asked for the test during my initial appt, but I have been dealing with sickness at home and unable to do the prep period for the test, so I am waiting another week until I can do that.  It is basically a 3 hour test where I breathe into test tubes after ingesting a lactulose solution.  My breath over the 3 hours will be compared in the lab to see if I am positive for SIBO.  Amazingly, I felt better than I have in months when I was prepping for my procedures.  I couldn’t have anything but liquid for 2 days prior.  As soon as I ate on Monday after everything was done, I was feeling awful again.  It’s sad when you feel better not eating anything than when you do!

Right now, the digestive issues have overtaken most of my Lyme symptoms.  I still have awful internal shaking, unbearable headaches, and a drunk feeling.  I still have days where my pain is so bad it takes everything to get out of bed.  It’s a constant battle of which symptom is going to be the worse on any given day.

 

On Friday we get to celebrate Jack as he is confirmed.  We are all looking forward to something to celebrate and not focus on all the illness that has plagued this house for the last month!  We’re excited that the weather is turning warmer and that the enormous amount of snow is going down.  We can’t wait to open the windows, air out this house, and get outside and into nature more!

As always, I don’t share our struggles for sympathy or attention.  I share them to not only keep you updated on our lives, but to share and educate on the different diagnosis and diseases we have.

Until we meet again,

Sara

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