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Updated: 2018-03-06T00:50:26.490-08:00


Taking it Off...


I can't believe I am about to say this, but...
I have not had bread or pasta (gluten)
March 3.

People I was a junkie.
Worse than a junkie.
I can honestly say that
I do not miss it at all.

I am feeling so much better.

During my whole 30 (March)
I lost about 14 pounds.

I am now happy to say that I am down
a total of 33.5 pounds. Another 20 pounds gone.
Feelin' good.
Feelin' good!

I am still trying to eat as Paleo-esque
as possible. Non-processed. But I 
did add back in dairy. Because I 
love dairy. Love.


My {First} Whole 30


Based on curiosity I purchased this book:And I am proud to say that....What is Whole 30 you ask? No sugars and sugar substitutes (syrup/honey included)No alcoholNo grains {including corn}No legumesNo dairyNo white potatoesNo preservativesWhat you can eat are fruits, veggies, minimally processed meats, and a few nuts and fats.  That's the long and short of it.The Whole 30 is a way to focus on HEALTHY eating habits, healing the body and the gut, and eliminating potential trigger foods that one might be sensitive to. The SAD {Standard American Diet} is full of toxins, chemicals and generally unhealthy uber-processed foods. It is 30 days away from the SAD. The Whole 30 stresses that this is not a "diet." The program wants you to notice how you feel, and not to focus on weight loss. No scales are allowed for the full 30 days. I did step on the scale.That was my one cheat.There were NO food cheats.I admit, I totally did this hoping to lose weight. BUT there were other things that I needed to take care of such as; my carbohydrate addiction to all things bready... and my sugar dragon {treeeats, coffee creamer, SUGAAAAR!} I needed to cut ties completely in both these arenas. Also? I suck at eating veggies, so this helped my try new things {and actually like them!}Today is Day 31.Did I wake up and pour myself a bowl of sugar laden cereal?Nope.Eggs, avacado and sweet potato is my new thang.I DID splash my coffee with a REAL milk.It felt scandalous. Before the Whole 30 I was addicted to the chemical-laden, artificial-flavored creamer I wouldDUMP into my coffee {to the point it was almost 1/4 creamer}...It was baaaad.This is the point of the Whole 30.  To change the way we view food. To know what we are putting in our bodies.  Sodium nitrate & benzoate, aspartame... the list goes on.Why are we eating these things?Ignorance is bliss, but it can also mess you UP!Did I lose weight?Yep.  I lost 14.5 pounds. In 30 days.Could I have lost more on a calorie restrictive diet?Sure. But I would have been a cranky mess.A cranky mess eating a bunch of low-fat, chemical & sugar-laden crap.I was not hungry between meals. Sometimes I had to remind myself to eat. {what?}As I got further into the program, my cravings for sugar subsided.I could watch Molly bake brownies, and walk away from them.Heck, I sliced brownies and treats for them, and did not want them. At all.Not even a crumb.I did not count carbs, calories, write anything down.I just ate.Real, whole, nourishing food.No shakes, powders, pills or supplements.Just healthy eating.My body and mind felt great.Also? My kids were exposed to new {healthy} foods.We have found some new items we can add to our family menus!I did cook separate meals for Todd and the kids,but it was not that big of a deal.I kept my meals very simple, there was not a ton of prep work involved{other than making my Whole 30 approved mayo and dressing}.So today, I will work on adding dairy back in moderation and noting how I feelwhen I consume it. I am still unsure if grains will become part of my diet again...I still think that is a slippery slope for me.Anyway, this was my first journey into the Whole 30 and I did iiittttt!Will I do it again?Yep.Planning on May 1.Anyone else want to join in?[...]

End of Summer/ Fall 2013 Update


Ye old neglected blog.Here is a bulleted, brief update:I am teaching first grade after 13 years of teaching 2nd grade.First graders are way littler than second graders, but they tell you they love you.My mom has been quite ill, found to have suffered a heart attack, and had major abdominal surgery. She still has a potential heart surgery in front of her.My grandpa's passing this July has left a huge void in many areas of our (my mom's and my family's) lives. We are learning to cope. Kyle has taken this loss especially hard.Kyle is in kindergarten now. One day he decided to stay home with grandma, and purposely missed the bus. I could elaborate on this but I am bulleting.Molly is a 4th grader. God has healed her from all the craziness of this past year. Minor issues still linger, but nothing like what we were dealing with. God is faithful. So faithful.Ryan is a 3rd grader. He is starting to style his hair with gel. Watch out world. He also requested his very own hairbrush because he is growing out his hair. Again, oh boy.Audry is bossy and cute. A lethal combination. She is going to Open Arms preschool 3 mornings a week, and spending some time with grandma and Aunt Jenni.Todd got a new job this summer. A good job. An awesome job. Like the awesomest in our 14 year marriage career kind of job. Kind of feel like I am jinxing it by even mentioning it. Lead carpenter, doing what he loves.I feel an overwhelming sense of life zooming by too fast, but a good grounded feeling like God is leading us into a time of calm and stability.Sooooo that is a brief update of this little corner of the world. I should be better about blogging here, I really should....maybe I will?! I am non-committal, let's just leave it at that.Feeling this one tonight:"One Thing Remains"Higher than the mountains that I faceStronger than the power of the graveConstant through the trial and the changeOne thing… RemainsYour love never fails, never gives upNever runs out on me On and on and on and on it goesIt overwhelms and satisfies my soulAnd I never, ever, have to be afraidOne thing remainsIn death, In life, I’m confident andcovered by the power of Your great loveMy debt is paid, there’s nothing that canseparate my heart from Your great love...[...]

Eulogy for My Grandpa 7/19/13


I had the honor of speaking yesterday at my Grandpa's funeral. I wanted to post a copy of it to my blog, so I won't ever lose it; and my kids can access it when they are older :)I’m blessed to have grandpa in my life for 36 years. Not many people can say they knew their grandpa that long!Grandpa was surrounded by people that adored him: his wife, children, grandchildren, great-grandchildren, brothers, sisters, extended family and friends.Today I’d like to speak about the time he spent with my family; myself, my husband Todd and his great grandchildren; Molly, Ryan, Kyle and Audry.First of all, I lived in the same city as grandpa and grandma for about 30 years. That made it easy to see lots of each other!I have so many great memories from when I was small, many of them centered around their family home on Upton Ave in Bloomington. I love gardening, and I attribute my green thumb to my grandma and grandpa. At a young age I learned the names of flowers and vegetables, what a weed was and how to effectively pull it. I also learned the names and daily habits of the countless birds in their backyard. I even learned how to have a love/hate relationship with squirrels just like my grandpa. I could go on and on about childhood memories spent there.... but the one thing I will never forget is the sense of security, warmth and love that flooded over me every time I pulled into that driveway. I still drive by that house just to remember.When I got married, Todd and I bought a house 2 blocks away from Grandpa & Grandma. Todd quickly understood why I loved Grandpa & Grandma so much. Grandpa and Todd were both obsessed with lawn and yard care and they were fast friends.Great grandchildren started arriving. Molly in 2003 and Ryan 17 months later.  From day one, Grandpa & Grandma were SO involved in our children’s lives. We could walk to each others houses for goodness sakes. They would walk to us, we would walk to them. That is the way it went for about 5 years until we needed a bigger house because the kids just kept coming.Our kids have called never called Grandpa & Grandma by the last name Tverberg. They were called Papa & Grandma Woodsie. This name comes from way back when Molly was small, and we had so many grandmas and grandpas it was sometimes hard to keep them all straight!At Grandpa & Grandma’s house there was a play set with a little old cloth log house and woodland creatures. My cousins and I grew up with it and adored it, and our kids loved it too. Grandma always called it the “Woodies.” When we would tell the kids we were going to Grandpa & Grandma’s Molly would say “the one with the Woodises?” Eventually it just transferred to Papa & Grandma Woodise. That is how my children know them.Kyle and Audry came, and so did grandpa and grandma.My mom has watched our children throughout the years, while Todd and I worked. It was a running joke for many years that they all spent more time at our house than we did. We would come home from work and my mom, grandpa and grandma and the kids would be living it up at the house. Such happy times. Lots and lots of time and lots and lot of memories...One of my all time favorite memories is from when Molly and Ryan were small. Papa tried so hard to get Ryan to talk. So hard. He would carry him all around the house, pointing to things and saying the name of the object. Well, needless to say, Ryan was a boy and had no interest in talking. One of the things papa would always point out to Ryan were ceiling fans. He would point and in his low, calm voice he’d say “round and round and round and round”. Well, that is the one that stuck with Ryan. And that’s all he said for a month I think. He sounded like a broken record..around and around and around...”I think I could speak for an hour about the various memories we created with Papa, but a few of our favorites include:Baseball. The boys almost pulling papa’s arms out of the sockets as soon as he ar[...]

Rest In Peace Papa Woodsie


Last Saturday night we had a great dinner with my Grandparents.Early Monday afternoon, 7/15/13, my grandfather became an angel.I got a call from my mom, who got a frantic call from my grandma.I called 911 and rushed to their home.The medics worked on him for 20 minutes,but he was gone.An angel.Married to my grandma for 64 years.I spent so much time with them, we livedin the same city for about 30 years. Even then,they were only in Eagan.We saw my grandparents so often.At least once a week, if not much more.He loved my children with such intensity.They loved him back with the same intensity.So hard.Such a hole left behind.Rest in peace our beloved Papa "Woodsie"you will be forever remembered and carried inour hearts with the sweetest memories.Until we meet again.Papa and 4 month old Molly.Gushing over baby Molly. He did this SO well.At our house on Vincent. We lived 2 blocks away from Grandpa and Grandma.We saw them soooo much. Molly 9 months.Easter 2004? Blowing bubbles with Papa at theirhouse on Upton Ave.Holding baby Ryan.  February 2005.Molly in the backyard of the Upton Ave. house.Molly spent lots of time there.Molly and Papa, Christmas 2006.Moving into our new house on Oakland. Papa helped! His old browntruck is parked in our driveway.Love this photo. The day we moved in, April 2006. Both of my grandpas arenow in heaven.Molly's 3rd birthday. Ryan in overalls.My grandparents, Sidney and DeLores, August 2006.Grandpa was always in the heart of the action with hisgreat-granchildren!Papa and Ryan. 2006.Such a happy man.He loved his great grands. They have spent countless hourson his lap throughout the last 9 years.At the Upton Ave house.Christmas. Our house. Papa playing with Molly.Ryan's 2nd birthday dinner.Molly and Papa.Molly's 4th birthday.Grandpa Tverberg and Grandpa Thompson.Both angels now.Books and Papa's lap were a perfect combination.Christmas Morning. They would always come and join us.Holding Baby Audry, May 2009.A common sight at our house. Ry's 5th birthday. Embassy Suites.Audry's 2nd birthday. Papa loved feeding his "beebs."Favorite photo. Always had time for his great grandchildren.Audry and Papa, summertime in the backyard.Lots of time was spent here too.Grandparents day at school with Molly.Kyle and his Papa at my brother's wedding 6/22/13. These 2 were always quite the pair.Kyle took yesterday's news the hardest.His papa loved him something fierce,and Kyle loved him back the same way.We love you Sidney Tverberg.Forever and ever.[...]

Molly's Mayo Clinic Visit (July 1, 2 & 3, 2013)


Molly and I headed to Mayo Clinic bright and early the first of July.I made these appointments way back in the height of Molly's illness at the end of March/ beginning of April. They book out that far. Even though Molly was generally feeling "better" (when I say better I mean that we are not at that scary place we were in March) I wanted to keep the appointments to see if they could figure out anything further for us.So the first chunk will be photos of the 16th floor of the Mayo building where we spent about 50% of our time. We had our initial consult with a pediatrician here, as well as a chest xray, blood work health/wellness consult and a neurology consult.Front entrance of Mayo. There are about 50 bajillion ways to enter this huge building.Molly at the 16th floor pediatric elevator bank. Recently remodeled and ah-mazing.16th floor Mayo Building.Child drawn tiles throughout the 16th floor. All with an animal nature theme.Elevator lobby again. The theme is Minnesota and nature.It really is quite awe inspiring to look at the detail that went into remodeling and makingthis floor a welcoming and comfortable place for children.Mural made with recycled materials. Love this first shotof Molly's big afro puff (she was turning her head.)Backlit glass mural. 16th floor- Mayo building.Pediatric lobby. It is massive. There are 4 doors in each cornerof the lobby that lead to different departments or subspecialties.I think we were called back through all 4 doors during our stay here.They also have it fully staffed with volunteers who give away books,tell jokes and show science experiments. Amazing.When we had our initial consult with the pediatrician, they had already reviewed Molly'sfull medical history. She talked with Molly about her symptoms and about they path she has been on since January of this year.The pediatrician said that they felt they had a pretty good grasp about what was goingon with Molly and that they had ordered tests to make sure they were not missing anything.They know that Molly is not making up her pain. The pain is very real and that thereis a range of pain they wanted to look at for Molly.She talked briefly about POTS (Postural Orthostatic Tachycardia Syndrome) and the range all the way up to Chronic Pain. Kids can be anywhere on the range, and Molly may be progressing through (and hopefully out of it.)I went to the hotel later that night and googled POTS and found this video wherea mother describes her daughters journey through POTS. I watched this and cried, because with only a few slight variations- this was Molly's journey. It all starts with a flu,and spirals out of control. allowFullScreen='true' webkitallowfullscreen='true' mozallowfullscreen='true' width='320' height='266' src='' FRAMEBORDER='0' />I could NOT get this video to embed! Grr.If you want to watch this mother's story (which is eerily similar to ours)It is about 6 minutes long. Again, Molly's journey with slight variations.Click here .Mayo tested for POTS with a table test on Tuesday to check Molly's autonomic nervous system.She also had a ECG and exercise test. All these were looking at how her body responded to positional/ stress changes by measuring heart rate/ blood pressure and sweat response. As far as I know all these tests came back normal, which would mean she does not have POTS at this point in time, although I wonder if that is what we were dealing with this winter?Photo detour...First hot dog stand experience.Lots of sculpture and fountains.Vitamin D time.Mayo Building (back gray building)Taking in the sights between appointments.Subway Level garden, Mayo building.View from 18th floor, Gonza Building.Down below, plaza where we ate outside a few times.Cutest silhouette I know.We did lots of sightseeing between appointments.There are many fabulous sculptures, and museums interspersed through[...]

My "Little" Brother's Wedding 6/22/13



Believing when it is Hard...





Still Dancing...


Two weekends ago, Molly's had her dance recital. In March, we wondered if she'd dance again.Molly loves dance.She missed lots of class time this year due to her illness.We spent lots of time praying for God to restore her body.To be able to dance.Well she danced.Moving still hurts her, but she dances anyway,and she is so pretty doing it!She was very hard on herself, not knowing the dances as well as she thought she should.I reminded her about her short stint in a wheelchair,and that changed her attitude real quick.The meds she is on seems to fog her thinking and processing.That could be a part of why remembering the dance is hard.She is excited for next year dance classes, which is a good sign.Here are some action shots of Molly dancing:Brandon Heath- Wait and SeeI was born in Tennessee, late July humidity, Doctors said I was lucky to be aliveI've been troubled since the day that I got here, Troubled to the day I disappearThat'll be the day that I finally get it rightThere is hope, for me yet, Because God won't forget, All the plans HE's made for meI have to wait and see, HE's not finished with me yet, HE's not finished with me yetI never really was that good in school; Talked too much, broke the rulesMy teachers thought I was a hopeless fool, all right.I don't know how but I made it through,It's one of those things that you gotta doI always had a knack for telling the truth.There is hope, for me yet, Because God won't forget, All the plans HE's made for meI have to wait and see, HE's not finished with me yet, HE's not finished with me yetStill wonderin' why I'm here. Still wrestling with my fearBut oh... HE's up to something, And the farther out I go, I've seen enough to know That I'm not here for nothin'...He's up to somethin'.So now's my time to be a man, Follow my heart as far as I canNo tellin' where I'm ending up tonightI never slow down (or so it seems), But singing my heart is one of my dreamsAll I gotta do is hold on tight.There is hope, for me yet, Because God won't forget, All the plans HE's made for meI have to wait and see, HE's not finished with me yet, HE's not finished with me yetHE's not finished with me yet, HE's not finished with me yetGOD, teach me to trust YouTeach me to follow YouTeach me about YouGOD, bless usGOD, lead us[...]

Preschool Spring Photos 2012-2013


Audry 3.5Kyle 5.5[...]

Audry's 4th Birthday Party in Pictures



Molly in May


These last months have been full of defining moments.Moments that I will never forget, that will be etched in my memory permanently.Sights, sounds, conversations, feelings and so much more.I think back to our time in the hospital.About how we got there in the first place.About how we were re-admitted the same day we were discharged, and how I felt like we were in a deep, dark tunnel... with no light in sight.The nurses who would comfort, the various specialists, theway Molly still tries to joke her way through a blood draw...The city view out the hosptial window and wondering if I will ever havea "normal" child again.The word "fibromyalgia" and "amplified pain" and "myclonic seizures..."Then I look where Molly is now.We are a world away from all of that.Thank God.She still sleeps with two ice packs.I have to help her get out of bed in the morning.She needs help getting in and out of vehicles.Going up and down stairs is hard.I need to have faith that we will never have to return down that road, and givethat worry to my God. Because the thought of returning to that space wouldtotally blacken out the hope that I am seeing in Molly's world now.We've seen her PID doctor, a pediatric rheumatologist at the Amplatz U of M Children'sHospital, and had a follow-up visit with our neurologist.All have been in agreement that Molly's symptoms look like an Amplified Pain Disorder.The rheumatologist did not think she had fibromyalgia nor Juvenile Arthritis.Her PID doctor was happy with her mobility after the neurologist added to two medsto her regimen. We have not had to see him for three weeks, we go back this Thursday.The neurologist said six weeks (we saw him Friday morning.)We are still sticking with PT sessions, and have been going every Friday.I still have an appointment scheduled at Mayo Clinic in July, and intend on keeping it.I do not think a completely fresh perspective can hurt.Today Molly went to a fun birthday party with a bounce house.Of course she was NOT going to miss that! Well, she is hurting tonight.Seems like her back is spasming, and her tremors are back slightly.In the midst of all the fun, I think she forgets and just goes for it!That is good, I do not ever want her to lose that spunk.Never.I found myself full of anxiousness tonight while trying to get her to bed.What if she is even worse in the morning?What if this is a super long night?What if she cannot go to school tomorrow?I just need to give it all to God, because it is all out of my control.So hard, yet so necessary.Day by day, trial by trial, we'll keep trudging through.[...]

A Lil Spring Might Help this Situation...


It is April 22nd.This is the current state of affairs outside my window.This is so.not.okay.We are on the snowstorm-a-week plan.It blows.The boys are chomping at the bit to get outside.We have Nascar races in every nook of the house,note the bay window below.We need fresh air and sunshine and warmth.Like last year on the patio.Camp Kota 2012Part of me wonders if warm weather would have set in earlier...would Molly be in a different place?I know the long, drawn out winter is hard on me...probably is for her too.Molly's urinalysis came back clear.Sigh.Good news.Her walking is markedly improved from where we were.I think the meds the neurologist put us on really helped.We are also having wicked side effects.Intensely sore gums for one.We are also encountering horrible stomachaches (randomly with no pattern.)The numbness is still a huge issue. Her lower arms and hands will lose feeling sporadically, andshe has not felt her feet for quite some time.We go back to see the neurologist early next week.Hopefully he will have some answers.Molly went to dance tonight and did all three sessions (ballet, tap and jazz).I watched her though the window, and she was really trying hard to keep up.She has missed so much dance and is behind in learning her routines for the spring recital. She is tenacious,She wants to perform June 1st.I think she just might do it.[...]

New Screening


This has been the longest gap in posting since our hospital stay.Life had gotten the better of me this past week,but now that my Master's Program is complete I feel like a huge weighthas been lifted off of me.So glad that I just stuck with it and plowed through,feels like a great accomplishment during such a hard stretch of life.Since beginning the medications recommended by our neurologist last Wednesday,Molly's mobility has increased.Her walking has been such a pain filled experience for quite some time,and either the meds or her own body healing (hard to know) arefinally allowing her to move about much more freely.If we were dealing with a form of dystonia in her feet, I am not seeing that anymore.She is still having stiffness in the morning, where I need to physicallyhelp her out of bed, but she warms up much more quickly than thepast few weeks.She has been going to school 1/2 days in the morning and cominghome in the afternoon and resting, oftentimes she'll sleep for hours.We'll be trying to add more time back into her school schedule next week.Yesterday we went to see our PID specialist who was impressed at her jointflexibility and mobility in general.I expressed my concern that Molly was still having the issues of numbness in the areasbelow her elbows and from her knees to her feet. He did a series of tests where her eyes were coveredand checked her for loss of sensation.First with a cotton ball, which she could not feel at all.Next with a probe with a sharper end, she still could not feel the more intense poking.Concerning.He spoke about peripheral neuropathy.He orded a UA so do a screening for porphyrin.So in my late night reading free time I researched about why he mightbe screening for porphyrin in her urine.I came across many readings, but connected with the symptom checklistfrom the Mayo Clinic. I bolded the symptoms that Molly has/is/was displaying.Acute porphyrias. These include forms of the disease that cause predominantly nervous system symptoms and, in some cases, skin symptoms, as well. Acute porphyria attacks are rare before puberty and after menopause in women. Signs and symptoms may last one to two weeks. Possible signs and symptoms include:InsomniaAnxiety or restlessnessSevere abdominal pain ConstipationVomitingDiarrheaPain in your arms, legs or backMuscle pain, tingling, numbness, weakness or paralysisDehydrationExcessive sweatingSeizures- (I like to call them tremors)ConfusionHallucinationsDisorientationParanoiaRed urineHigh blood pressure I am cautious in saying anything about what I think she has or does not have.I have read more medical stuff on the internet that I care to divulge. Her symptoms fit into so many different categories, but this numbness is scaring me.We will wait and see the results.PS This post is sponsored by Kyle who thought it was appropriate to wake up at 4:30am, get dressed, use the bathroom, and start playing computer games by 4:47am. He allowed me the time to finally post an update by waking me up extra early. Thanks buddy.[...]



Molly and I are reading devotionals each night at bedtime.I was given the book Jesus Today by a dear neighbor of ours.I love this devotional, because each night we read it really seems to address thingsthat have come up during our day. Molly and I have had some fantastic conversationsaround this book, and the bible verses that accompany each passage.Last night's reading was the most spot on yet. As I was reading it aloud to Molly, I could have stopped and criedat the reaction she was having to each and every word.She made me go back and reread parts, words, sentences and the whole thing several times.It was powerful to see her react to it the way that she did.Here was the reading: Keep your eyes on Me! I Am with you, taking care of you in the best possible way.When you are suffering, My care may seem imperfect and inadequate.You seek relief, and I make you wait.Just remember: There are many different ways to wait, and some are much better than others.Beneficial waiting involves looking to Me continually- trusting and loving me.Thank me for this time of neediness, when you must depend on Me more than usual.Do not waste this opportunity by wishing it away.Trust that I know what I am doing - that I can bring good out of everything you encounter,everything you endure.Don't let your past or present suffering contaminate your view of the future.I am the Lord of the future, and I have good things in store for you. I alone know the things I am planning for you - to give you hope and a future.Lamentations 3:25, Isaiah 40:31, Romans 8:28, Jeremiah 29:11Text from: Jesus Today by Sarah YoungMolly's mood seems to be improving.She is not having the horrible tremors she was early last week.Her walking seems a bit faster, and less pain filled.She has developed a sinus infection again and is on antibiotics.We are neti-potting (is that a verb?) like crazy over here, she is actuallyable to do it herself now. Man that girl can get some gunk going on up in those sinuses.She is still complaining of the "electric shock" feeling in her extremities, with a rapid numbness taking over after the shock.This is still the most concerning part for me.She keeps telling me she is trying to be as normal as she can, even with the hurt. She is so brave.We still have great hope for a normal future.Always hope.[...]

Positive Things


Driving to our 3:00 PT session yesterday Mollysaid, "I miss Children's Hospital."She talked about all the good parts of the hospital;the activities, the dude, the nursing staff, her doctor.She said she was going to start writing about it so she'd never forget.I am glad she has good memories of it.She enjoys going back down to Children's for her PT sessions,which will be twice a week starting soon.She is on a never ending search for "the dude."Yesterday I bought her a Children's  t-shirt from the gift shop.She loves it.Slept in it and still wearing it this morning.She also has decided that she wants to be a nurse or a doctor.Positive things.Fun things to do while we spend time here.Search for "the Dude," look at all the sightsmade just for kids, and search for "the Dude".Her PT session with Andrew went well.We started by explaining how much fun she had the last time,but also about how much pain she suffered after having all that fun.The session was still great, but not as nearly intense as the last with Kat.Andrew got out his ipad and taped her walking in the halls.He'll show her how she looks different from week to week.He would start singing her these crazy, silly songs to get herto walk faster. He was singing loudly, and about it made her walk faster because she wanted him to stop :)She did some monkey bars, and walking exercise where she had to try andkeep her balance with her feet flexing over walking domes. Her feetare so rigid (she still has numbness) so this was a great activity for her.It's fun to see the PT's think on-the-fly and tailor her work to exactlywhat she needs to work on (which is so different from day-to-day.)Walking domes Molly and Andrew used.Molly's EEG came back normal from the neurologist.Good news :)We started on the two meds the neurologist added to our regimen.We are only on day 3, so too soon to tell if they are having an effect or not.Molly did school the last two days of the week (half days).We are going to try and add more time to her schedule over the next week.We'll see how that goes.She's had better nights too. Not so much involuntary jerking, and more sleep.Next week we are full of appointments too.Chiro, PID Dr., PT and work and school.Looking forward to a time of normalcy.I believe we can get there.[...]

Neurologist Appointment


A month ago today we were admitted to Children's Hospital. I do not even know how we have made it through this last month. I think of all that has happened, and all that is still happening and I cannot even believe were are a month out from that point.Today we had our neurologist appointment.My lovely friend Sunny came and took notes for me.I walked out of there in a daze and so thankful she wrote it all down.We had our meeting and then an EEG.She had a hard time with jumpy legs while sitting in the chair.Waiting on results.We talked about lots of things. Here is where I am going to cut and paste my Sunny's notes.Thank God for Sunny.Sensory Abnormalities:He said a lot of times things like this “start” due to a virus. Is this what Molly has? Not necessarily, but she does show some of the signs.2 kinds of headaches: chronic pain syndrome headaches and migraines. He mentioned he believes Molly’s are chronic.He mentioned something about Myoclonic seizures:Myoclonic seizures or twitches are brief contractions, or relaxations, of a muscle or muscle group,  resulting in a sudden, jumpy movement. Positive myoclonus is characterized by muscular contraction, and negative myoclonus by sudden muscular relaxation. They may be the symptom of disease, especially if recurring, but they may also be nothing to worry about. Many neurological disorders, including epilepsy, are capable of causing such seizures.Most people have experienced these seizures of some form. Hiccups are a myoclonic seizure of the diaphragm muscle, for example. People also commonly experience one called a "hypnic jerk" shortly before falling asleep, and such instances are no cause for alarm.He kept talking about people who are typically very active people have a hard time “not” being active. Sometimes if they are forced to not be active, this can cause a downward spiral of things.  *For example when we are active, there are certain endorphins that are released as natural pain relievers. When our activity level decreases, our bodies may not have a chance to release these pain relievers, therefore causing our body to almost go into a mode of “protection”. The brain not wanting to go back to “normal”.Dystonia -- Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are multiple forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no fewer than 300,000 people in North America are affected. Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.Dystonia is a chronic disorder[...]

Keep on Breathing


We had an unscheduled appointment today with our PID Dr.Molly woke up at 2am last night saying she felt like she needed to be sick.So I set up camp on the floor of her bedroom.She was writhing in pain.We tried a hot bath at 2:20am.No go.I got out the emergency Zofran to see if that would calmher stomach.No go.So I rubbed her back and just talked to her until she fellback asleep at 4:30 am.Even through her sleep she was crying out in pain.I am so over pain.I went to work and left Molly.Her response to me as I left,"Don't worry mom, I'll remember to keep breathing."Sigh.I called her PID Dr. and mentioned the overnight stomachacheand he wanted to see her. Thank goodness my grandparentscould come and watch Audry and Kyle so Todd could take her.She had a 2pm appointment in Mpls.So now she is on Prilosec.Another med and no answers.I am over pain and meds.I just want my 9 year-old back.Without pain.And meds.How on earth do you remove dairy, gluten, and wheat (among other things) successfully for 2 weeks and then need Prilosec? I just do not get any of this.On a happier note, I got all of Molly's natural remedies her Naturopathic Doctor recommended. Tomorrow morning we will head to Noran Clinic for a 6:40 am appointment.We have not seen a neurologist yet, so I am hopeful.And let me tell you, after 3 months of no answers, it is hard to be hopeful.Molly is still suffering with numbness in various parts of her body.Most notably her feet. Her walking is very worrisome for me. When she tries to notwalk on her tippy toes, her feet either turn too far out, or in (knock kneed).I don't know if her muscles are atrophying that way, or if she cannot feelsensation to notice she is walking wrong.I hate reminding her;"walk with flat feet""turn your feet in""watch your knees""back straight""don't drag that leg behind you"I need a live in Physical Therapist.Some days she is crumpling up, other days she looks better.You just never know what kind of Molly you are going to get on any given day.I lay in bed praying over night that the first call I hear in the morning isthe latter.So anyway.There is today's update.Prayer Requests for this Day:1. Our appointment goes well with the neurologist tomorrow morning.2. The winter storm warning we are under, will not hamper our travel or appointment.3. That Todd's Workman's Comp Claim comes through. It's now 3.5 months with no pay. To say things are "tight" is an understatement.4. That I can hold it together for 3 more grad school classes. I present the next 2 Wednesdays.I am not a lover of public speaking.I will update after our neurology appointment tomorrow.[...]

Water Breaks


I feel like our family is running a marathon.A marathon with no definitive finish line.We get stops for drinks of water along the way,then start running again never knowing when the next water break will come.Weekends are a water break. Just because I can be here for her.A good hour with no yelping is a water break.Humor from Molly is a water break.An encouraging word or prayer is a water break.Bedtime is the longest water break.Thank goodness she sleeps soundly most nights.When the house grows quiet, and the demands of this day have passed,it is hard for me to relax. Because I know the marathon starts againin the morning when the calls of "Mom" creep from her bedroom.She cannot get out of bed on her own.This begins the next marathon day.Having four healthy children seems such a distant memory for me now.I really took my life for granted.Yes, I was busy.But we had our health.I will never again take a cold, or the stomach flu or any minor illness for granted.I would worry and worry and worry over those petty things. My perspective has definitely changed.For good.I went to church again this morning.This time without Molly, she was hurting too bad to come.Church is a water break.Especially this morning, alone.Time to breathe.Just sit, breathe, listen and pray.I know that God gives me the water breaks when he sees me floundering.And trust me, I am doing lots of floundering.More as the weeks drag on.Here comes the marathon of another week.Oh Lord be with us.Peace I leave with you; my peace I give you.I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. - John 14:27[...]

My Insurance Company Hates Me


Phew.Ok. I think we are headed in the right direction after apainful detour.So we are scheduled to see a pediatric neurologist Wednesday morning at 6:30 am.What?I am not complaining (well maybe a little) because we will have to be outthe door by 6am to make it there my 6:30 am. Or maybe a bit earlier.Rheumatologist? Was going to refuse to see us because of her fibro (that I do not agree with)diagnosis. I found that out Friday morning and work, and it knocked the wind outof me. Then I got mad and asked for our PID doctor to call and get us in.He did.But the first available appointment is in May.We are on the cancellation list. Sigh.Also? We are scheduled now for PT twice a week.How on earth am I supposed to work and get her to all these appointments?Thank you to my almost-sister-in-law Anne for getting Molly to our chiro last week.It helps that my whole entire family sees Dr. Cory, so anyone can show up with Molly in tow and it is all good. Family is good.So I have been reading about Amplified pain disorder.When I called my PID Dr. last night to see if I could give Molly a bigger dose ofValium (ugh) he mentioned that there is an article he'd like to show me about a studyon this disorder.I think I already know what he is talking about because after 10pm, all I do ispretend I am a Dr. trying to self diagnose my child.If you are in interested you can read here about the AMPS program out at theChildren's Hospital in Philadelphia.Anyway the long and short of it is that it is the only program of it's kind in the US.It's recommended that children in the program get 6 hours of OT/PT per day.I am kind of obsessing over it right now, thinking how we could make anything like that work for her here and now. The symptoms of AMPS sound like Molly.Especially the new symptoms of itchiness and numbness.I don't know.Oh and also? I submitted e-paperwork to the Mayo Clinic in Rochester today.I am getting my money's worth insurance wise this year.P.S. Poor Ryan has been so stressed out. For those of you that KNOW Ryan he gets cold sores when stressed. Well, he has had a constant cold sore episode since Molly fell (very) ill. He ran out of meds (they actually expired and were not working anymore). So I had to take him to Urgent Care today. I feel like I live at medical institutions. Anyway, my insurance company will love me even more because his RX (zorvirax) was $879.00 for a 10ml tube. Good thing they cannot quit the Fortner Family.[...]

Falling Apart Together


I am laying on the floor in Molly's room.It was a bad day.I feel like we are back in the hospital.Bad.Bad as in we needed Tramadol and Vicodin around the clock.Bad.I worked and that was hard.I just want to be with her.Lots of pain, a crumpled body, tiptoe bent leg walking, tremors, numbness, jumpy legs, back pain.No one deserves this.  Especially a nine-year-old child.I want it all to go away.My poor baby.No school today.Just hurt.Our friends brought dinner, and that was her bright spot.Love friends.She got overtired tonight and lost it.Sobbing, limb involuntary jerking, gagging kind of "lost it".For about 40 minutes. I couldn't calm her down.I tried everything.Nothing worked.She blew through a box of kleenexes.Then I lost it.Then she tried to calm me down.We were quite the pair.Heaving and sobbing.I think my eyes are swollen shut from crying.Hers too.Then I rocked her.I told her this was not fair.That I would take it from her if I could.That I love her more than anything.That we'd beat this.That I would never give up on her, andshe should never give up on herself.That is was okay to fall apart, aslong as you got yourself back together again sometime.She rubbed my cheek as we rocked.My girl.Why?Why?WHY?Is this happening to her?Why can't we find her answer?Why why why why why????????I am trying to suck this up and be strong.But I feel like I am wearing thin and there is no end in sight.So tonight I am falling apart.Tomorrow morning I need to get myself back together again."Worn"10th Avenue NorthI’m Tired I’m wornMy heart is heavyFrom the work it takesTo keep on breathingI’ve made mistakesI’ve let my hope failMy soul feels crushedBy the weight of this worldAnd I know that you can give me restSo I cry out with all that I have leftLet me see redemption winLet me know the struggle endsThat you can mend a heartThat’s frail and tornI wanna know a song can riseFrom the ashes of a broken lifeAnd all that’s dead inside can be rebornCause I’m wornI know I need to lift my eyes upBut I'm too weakLife just won’t let upAnd I know that you can give me restSo I cry out with all that I have leftLet me see redemption winLet me know the struggle endsThat you can mend a heartThat’s frail and tornI wanna know a song can riseFrom the ashes of a broken lifeAnd all that’s dead inside can be rebornCause I’m wornMy prayers are wearing thinYeah, I’m wornEven before the day beginsYeah, I’m wornI’ve lost my will to fightI’m wornSo, heaven come and flood my eyesLet me see redemption winLet me know the struggle endsThat you can mend a heartThat’s frail and tornI wanna know a song can riseFrom the ashes of a broken lifeAnd all that’s dead inside can be rebornCause all that’s dead inside will be rebornThough I’m wornYeah I’m worn[...]



My mind is flooded with information, conversations and images from our long afternoon.Molly and I headed to our PID Dr. for a 1pm appointment.First thing, it was so nice to walk around without heavy jackets weighing us down.We chatted a bit in the van about what the day held.Molly asked if we could have a "Molly is Better" party when she started to feel well again.I told her that it was a fabulous idea and that lots of people would probably want to come to her party.She said she was inviting her teacher for sure.Cute.She finally started to talk to me about her feelings over this whole thing."You know mom, I thought the hospital was supposed to make me feel better.When I got out the first time, and had to go back? That was hard because in my mindI was supposed to be all better. Then, when I got out that second time, nothing.I am still not well."Phew. Glad she finally let that out.She has been noble as they come with dealing with this entire saga.I told her that sometimes things do not work according to our plan or timing.Sometime there is nothing we can do to control what is happening to us. That God has a different plan for a good reason, and somehow and insomeway we will be changed for the better because of it.I think she understood.Dr. Marker did a bunch of work on getting all her limbs to extend fully.It takes awhile to get them all straight.Then he started checking out her reflexes, and all the numbness she' s encountering.He is referring us to a pediatric neurologist.Thank goodness it is coming with his referral, because otherwise there would be a 6 month wait.It is sounding like they will have a space for us next week.I need to call in the morning.He also faxed in all the paperwork to the U of M so we can get our rheumatology appointmentscheduled. We are sticking with the meds we are on nowuntil we see the neurologist.We'll see him (our PID Dr.) again next Thursday afternoon.Then we were off to the pain team.Took us awhile to find them, but we did.We did a lot of talking about Molly's medical history, but they were the onestelling the story, seeing if she or I had anything to add to it.Molly tried a bit of biofeedback, then learned about some breathing techniques totry and help her manage the pain. Waiting to hear about how and whenthe next session will go. They'll be getting in touch with us.Final destination: Physical Therapy.We saw Kat again today, and Molly was dragging by the time she walked in.She had been all over Minneapolis Children's already, even trying to do stairsinstead of taking the elevator to try and get stronger. She also went on a pretty comprehensivesearch for "the Dude"... but could not find him.Molly in the Star Studio at Minneapolis Children's(no Dude to be found...)I shared with Kat that our PID Dr. wanted Molly to do range of motion stretching because that is whereshe was really struggling (to straighten and lengthen any part of her body.)We worked on that for 15 minutes.Then Kat had a different idea:The lycra swing.Here is an example of what one looks like:Molly's was purple as in "I love this purple thing!!" had more material and was super stretchy. Molly lit up when she saw it.I do not even know how to adequately describe all that Molly did in this thing.She was like the "old Molly" or should I say the 2012 Molly.She was twisting, balling up, stretching out, pink cheeked, getting her legs under herto frog jump, kick out and back in a fully extended swinging motion, did a back flip and lan[...]

Labs are In...


So we have 2 more normal lab tests.Normal, as in the middle of the lab norm normal.Of course that makes me happy.At the same time I am frustrated.How, when your body is so messed up,can tests continue to come back clean and normal?Of course I want normal test results,but I also want to know what is going on with Molly.Frustrating.Beyond frustrating.Molly has a chiropractic appointment the morning, and then needs to rest for our afternoon.We meet with our PID specialist at 1:00.We have our first Pain Team consult at Children's at 2:45.Then PT at 5 pm.Looks like we'll be eating in the cafeteria at Children's for dinner.I am hoping to look at some different medication options tomorrow.I just don't feel like we have a good fit on meds...or maybe we do.I wish I knew.I have been searching for a pediatric rheumatologist.My health system has 6 rheumatologists, when I called I was told they do not take patientsunder age 15. Great.Then I called down to Children's. Their rheumatologist is not taking new patientsbecause her partner is on maternity leave. They are booked out for months and months.They referred me to the U of M Pediatric Subspecialty Clinic right by myold Augsburg stomping grounds. If you know me, you know I hatedriving downtown..but knowing it is by Augsburg makes me feel better.And? For the record? I am an expert at getting to Children's Minneapolis.I could drive there with my eyes closed. Also? That parking ramp is expensive!Cha-ching.But I digress...Finally the U had openings.Her medical history is being faxed, and then they will contact me to make an appointment.When I asked, they were already booked a month out.Praying HARD for a cancellation so we can get in sooner.I am also thinking about finding a pediatric neurologist.Molly has been having spells where parts of her body tremor, and then go numb.Tonight her right hand is numb and cold to the touch.She is so nonchalant about it:"Well I sure hope it (hand) works tomorrow. It is my right one you know. I need to get some writing done..."I did page our Dr. just to let him know about the numbness.He said she should be fine until tomorrow (when we see him), and frankly I am glad he said that. I am tired.The other symptoms she's been having are horrible itchiness with no rash,a numb right ear, and sweatiness on the back of her neck and palms of her hands.I wish someone could look at all these symptoms and say,"Hey... I know what is going on and here AND know how to fix it!"That would be ideal,but instead I'll ask about a good neurologist tomorrow.I am down to my final three grad school classes.It is amazing to me that I got that darn paper done (well, revisions are still needed..)all I can say is I must have God as my auto-pilot, because I honestly do not know how thingsare getting done. The next two Wednesdays I have presentations (that I need to get done...)but then that is another "big" thing off my plate. I am excited to be done...... but I will miss my St. Mary's cohort.Thank you all, they were happy tears, I promise :)Look what they did for Molly:A gift from my St. Mary's grad school cohort.She loved the pillow and ESPECIALLY the journal and cool pens.Now if we can just get that right hand working :) You can see its numbness in the photo.God is showing me so many things in this unplanned road we are taking.Appreciate every good moment.Soak up the love from others, they can sustain you.When your chest is about to explode from anxiety; [...]

Keep on Keepin' On...


For those of you who read my lunatic post:I did call the doctor and request more blood work.I actually left a long message for his nurse late on Sunday night.It probably was a 5 minute message.I said I did not think she had fibro, and that I am a late night diagnosis searcher on the internet- and that I came across polymyositis and wondered ifshe had been tested for it. And on and on and on.A bit lunaticish, but I don't care.I got a call back by 9:30 am yesterday morning from his nurse.Molly has had lots of blood draws through this whole ordeal, and one of them have been CRP tests (see below) Which have always been in the normal range.He did go ahead and order 2 labs to look specifically to look for muscular issues:1. Aldolase is a protein (called an enzyme) that helps break down certain sugars into energy. It is found in high amounts in muscle tissue.2. A C-reactive protein (CRP) test is a blood test that measures the amount of aprotein called C-reactive protein in your blood. C-reactive protein measures general levels of inflammation in your body.High levels of CRP are caused by infections and many long-term diseases. But a CRP test cannot show where the inflammation is located or what is causing it. Other tests are needed to find the cause and location of the inflammation.So we should have results back on those today.These tests alone cannot diagnose polymyositis, there normally is a muscle MRI, electronic muscle stimulation (testing) and finally, a muscle biopsy.I just want answers.I hope she does NOT have polymyositis.But I just want more answers.I am also calling a rheumatologist today.I read all about all 6 Dr.'s in our system looking for a good fit.Hoping there is one, I need someone to figure precious child out.Three months is too long to feel like junk.Yesterday she went to school in the morning.She was anxious, but I think she did well.She told me it took her lots of extra time to walk place to place.Her brother helped her get up the stairs on the school bus.Her girlfriends were very caring, so I've been told.Todd picked her up before lunch and brought her home.She ate lunch and promptly passed out until I got home from work.Then we went for her blood work.Then to see Dr. Cory (our chiropractor)Then to dance class.Molly has been missing dance something horrible.She lived for Mondays (the night of her class.)I think she'd been there once in the span of three months.Last night she went and watched.I think she smiled the entire time.She tried to stiffly dance along the back wall, holding onto the barre.She had a great time.Again, her friends - so loving. She peeked out of the door and told me,"This is the most fun I've had in a LONG time!"On the way home she said,"I can't do anything in there anymore mom.My body just doesn't let me.But in my heart, I am still a dancer."Sigh.Sometimes this is just too heartbreaking.Why is this happening to her?Her spirit still shines even though her body acts dull.As I was getting her out of the shower last night, she started singing this:"poly-poly-my-o-tosis---they just can't find her diagnosis..."She looked at me with a huge smile.Seriously this kid, it was actually a catchy tune.I think she listens to every conversation I have.I love her.Keep praying![...]