Tuesday, December 15, 2015

Crap! Something else to worry about!

Starting last summer ds (9) had a tick bite.  He pulled it off himself and told me about it a few days later.  It was on his scalp.  Within a short period of time I found an enlarged lymph node on the same side of his head behind his ear.  I took him to the doctor, who did a strep screen (negative) and she said that it was nothing to worry about.  I waited until October and it was not getting better.  The bite area was still sore and slightly raised and the lymph node was still big.  I took him back to the doctor and she did a few blood tests and sent us to see a surgeon.  Last month I took him to the surgeon and he put Josiah on Bactrim Suspension for 10 days, which we finished a couple of days ago.  It did nothing.  The lymph node didn't change.  However, now for the first time, I see a red rash around the bite site, and it seems maybe he is losing some hair there.  Crap!  Why can't things be easily figured out in my kids and be treated normally without issues or just go away like normal kids' problems do!
This was taken in August.  I measured it today, and it is unchanged.

Currently I've called the doctor's office again to see what she wants me to do.  Pretty soon they will all know me by first name!!! 

Monday, December 14, 2015

Birthday, Thanksgiving and Medical Stuff

Happy Thanksgiving and Happy Hannukah! Today is day five our our Messiah's eight days of remembering what God did when he provided the miracle of the oil for the lamp in the temple.  Our family enjoys lighting the candles. Each night we remember that Yeshua/Jesus is the light of the world.  Each night we add one more candle.  We light them while eating a meal together as a family.  I love having our meals together and focusing on God and on each other.  This year we also added a tradition of each of us taking one night to gift each other with a small gift.  Since there are six of us in the family, six of the eight days was covered.  Our kids made rubber band bracelets, pictures, bookmarks, and other small toys for all of their siblings and parents.  This will replace our "stocking" tradition from Christmas.  They have the choice whether they want to give each other gifts on Christmas as well.  We are not putting up a Christmas tree this year, as we often have not over the past 7-8 years.  I do enjoy a Christmas tree, but our house is not big enough, and it often changes the mood of the holiday to a "presents" focus, so I don't really mind.  We do give a couple gifts to each child on Christmas, and they also open gifts from their grandparents and aunts and uncles.  We just enjoy Hannukah a little more and a little longer.

Since my last post, dd2 was in the hospital for 5 days and recovered quite nicely.  Currently she is weaning off of prednisone and is starting to get some of her previous symptoms back.  She had one day of being pain-free in her abdomen, but now that has returned as well.  Since last night she got a virus that her dd3 has been fighting so that is muddying the water with more joint pain, fever and sore throat. If her symptoms return, she will have to go on the stronger Crohn's med.

This week, dd2 saw the rheumatologist.  He feels she has hypermobility syndrome.  Reading about this syndrome makes a lot of her symptoms make sense.  It can be caused by a genetic defect that I think may run in our family called Ehler-Danlos Syndrome.  I see features in all three of our girls.  This has made me start looking into dd1's symptoms and now I have some suspicion that she may have something like dysautonomia.  It is a symptom of Ehler-Danlos too.

Ds turned 9 last month on the 10th.  We took a couple of his buddies to a water park at a YMCA after church.  They had a good time.

Josiah is in the middle of both pics.  We went for pizza afterwards.

Sunday, November 8, 2015

Daybook Entry

For Today... November 8, 2015

Outside my window...  the sun is shining, the air is cool.  I'm loving our beautiful fall.

I am thinking...  if something doesn't work soon in improving my daughter's health, I am gonna go crazy.

I am thankful...  for the good weather, good kids and good friends.

In the kitchen...  yummy pumpkin chocolate chip muffins.

I am wearing...  jammies.

I am creating...  nothing.

I am wondering...  how we will ever get Pumpkin better.

I am reading...  The School for Good and Evil and listening to Gone with the Wind on audiobook.

I am hoping...  the GI docs will help us move on to a medication that works better for my daughter's Crohn's disease.

I am looking forward to...  heaven.

Around the house...  my two girls are sick, and I have no motivation to clean or cook.  I'm overwhelmed with Pumpkin's health issues.

One of my favorite things...  a beautiful, crisp, lazy fall day.

Highlights from this past week...  I'm working two days a week now at Ready Care in Sterling.  Little Buddy had a basketball game yesterday morning, and did a fabulous job playing in a small ensemble in the afternoon - A Theme from Jurassic Park.

A few plans for the next week...  playing things one day at a time, hoping Bunnies doesn't get too sick.  I'm not sure I can handle any more health issues.

Friday, August 28, 2015

Summer Happenings and New School Year

Time for an update.  Sorry I left you all on such a downer post.
Jaedyn, Josiah, Ciara and Eliana

We had a fairly good summer.  Once we got past a few weeks of mugginess, the weather was great.

I have a garden that isn't the best, but it has been fun and I'm learning.  It sat fallow for the past couple years before we moved here.  Cucumbers, carrots, melons have done well.  Most of my tomatoes didn't do well.  A few cherry tomatoes only.  One green pepper plant survived.  On my deck I have (or had) spinach, lettuce, oregano, basil, two cherry tomato plants, which all did well.  I used bags of garden soil laying on sides with squares cut out for the plants to grow.  I've just replanted hoping for a fall crop.  In the garden I just planted a bunch of beets, broccoli and lettuce.  I have some potato starters up here on the deck but fear I started too late...  Lastly, snow peas did well in the flower garden, that is, until the bunnies found them.  :(.  I worked as camp "nurse" a couple of weeks too.

Elli in orange with her flute at the spring concert

Elli went to two camps here at Menno Haven, participated in the summer band program, and took swimming lessons.  She loves the water and swam for hours here at the pool.  Elli's flute has improved a lot.  Her attitude towards schoolwork and being helpful around the house has really improved also.  Now that she has started sixth grade, I can see a big difference in how she comes home and gets started with her schoolwork and music practice.  It really delights me.  This year she gets to do choir, and is hoping to be asked to be part of an early morning ensemble, but I'm not sure if she's quite ready for that yet.  We'll see.
Josiah performed at the Maud Powell Arts Festival this month.
Josiah went to one camp here as he is only 8.  He helped with the garden and both younger children participated in a biweekly junior master gardener program.  He took swimming lessons and has progressed to jumping off the diving board and swimming in the deep end.
He has continued with his violin through the summer and especially enjoyed doing group lessons.

Jaedyn had a rocky summer.  She started out working the first 5-6 weeks in the kitchen at camp.  However, the doctors kept asking for her to get a bunch of tests done and she had so many appointments, then the work load and heat were tearing up her guts.  To top it all off, her left leg started swelling up.  Ultimately, we discovered that she has primary lymphedema.  Now she has to wear a hip high compression stocking every day for the rest of her life.  She never seems to get a break.  Her boss told her to take a week off when her leg got bad, but then never let her return.  Later in the summer, she started doing housekeeping with another lady at the camp, and that seemed a much better fit.  She earned enough to buy herself a laptop computer.  In August we took her to Wisconsin for Camp Oasis.  She loved it.  Unfortunately, she started having night seizures again and had to come home a day early.  This was a real blow after everything else that happened this summer.

Jaedyn and Ciara are finishing their first week back to school.  Both teen girls decided to not go to public school and are happily engaged at their former private school.  I'm really happy about this.

Ciara on left and Jaedyn in yellow at their spring banquet for school.  Pictured here with friends Elisabeth Porter and Ivy Brown.
Ciara worked doing housekeeping and gardening with a friend this summer.  She has started medicine for her anxiety and went to counseling all summer.  She is in a much better place now emotionally, and was actually excited about starting school as a senior this year.  We're doing college shopping now.  She has another ACT in October, and we'll go to Kansas to visit Bethel College in October too.  Oh, and we put in the requisite 50+ hours of driving so she will soon get her driver's license!
At the St Louis Zoo in the heat in July
Tim has worked at Camp Menno Haven for a full year now.  The summer was especially challenging for him as he doesn't like to act the role of boss or to have to confront negative behavior.  He had two full time summer staff this year, but he had to let one go.  He is pretty tired now and is happy for a break in the schedule.  I think he'll be glad when he can shut down the pool after labor day.  It is a lot of work.

Monday, March 30, 2015

Health matters, I suppose.

It's time for my weekly Daybook Entry, but I suppose I'm not really in the mood.  I'm frustrated.

This past week we officially ended our whole 30 strict plan.  On Tuesday we reintroduced legumes with peanut butter and with beans in the chili.  One daughter and I had diarrhea.  Not sure if it was related.  On Friday we reintroduced gluten-free flour.  This really sent me for a loop.  I felt in a fog and drunk most of the day and had to sleep it off.  I was surprised.  Sunday I slept a good portion of the day as well - exhausted.  I seem to only get good days every other day...  I should be feeling great.

Overall I've lost 22 lbs and my clothes fit well again.  Some of my jeans are too big.  If I stay on plan, my thinking is clear, when I'm not tired.  Taking Lifelong Vitality supplements from DoTerra really help with my clear thinking and energy, but I'm almost out.  I won't have more until next week 😞.  It is frustrating to feel like I have to stay on this strict diet or feel poorly.  I guess I should be grateful that I can feel better by eating on plan, but I really am tired of having to do so much cooking!  I want my lifestyle to be more convenient - to not have to plan every meal ahead of time!

In spite of all this hard work, Jaedyn has not gained any more weight and is still sick frequently - daily.  Eliana is sick once a week too.  This stresses me out - and perhaps that is part of me being exhausted and foggy-brained.

Regarding Jaedyn, she had her colonoscopy last week.  She sees her GI doc for follow-up on Thursday.  She hasn't gained weight - lost two pounds.  She sees a new pediatrician next week.  I could not put her in with the doc who has 30-40 patients a day.  He did a very weak well-child exam on Josiah last week.  No way!  Problem is, I will have to take her to Peoria to get in with a pediatrician!  Such is my life.  No wonder I can't see myself going back to work!

I still haven't figured out what to do about school for her.  I guess we just try the public high school.  I wish life was easier, fair and encouraging 😭.

Saturday, March 21, 2015

Daybook Entry


For Today... March 21, 2015

Outside my window...  the sun is shining, the air is warm, the frogs and birds are chirping.  Yesterday I saw a couple of robins!  I put up some hummingbird feeders, but I'm probably a couple weeks early, at least...  Wishful thinking!

I am thinking...  we enrolled the girls into the public high school for the fall.  It was a real blow to all of us that they won't take any of the private schooling credits that they did this year and they will be set back a year.  It is crazy that they have to repeat classes that they got As in, but overall I think it will be a good move.  My oldest daughter would have graduated next year, but she really wants a public high school experience more than she wants to be done with high school.  I don't think she is quite ready to face real life in a year anyway, so this is a good move for her.  My second daughter already got an extra year when she was five because she wasn't ready to start school yet, so this was way disappointing for her.  I think it will be good for her to have the extra resources a public high school can offer, but I'm sad for her that her hard earned As and Bs this year won't mean anything and that she will turn 20 just before she graduates.  I am still deliberating this for her.

I am thankful... for the nice weather and for a week without any major illness in the family.  Even my in-laws had a good week health wise.

In the kitchen...  we made special crepes this morning with apple compote and blueberry compote, almond butter and bananas.  Yummy!  Last night we welcomed in the Sabbath with a fancy table, meatballs and veggies.

I am wearing...  blue jeans and a light green family reunion t-shirt.

I am creating...  a bird-attractive area around my back deck and in my front yard.  I put up new feeders this week and bird baths in the front and back.

I am wondering...  how to fix my daughter's dress for her play next week.  The back doesn't close and so I will have to sew in some material so that her back doesn't show.

I am reading...  I finished Skellag and started Brisinger on audiobook.

I am hoping...  the GI docs will help us move on quickly to a medication that works better for my daughter's Crohn's disease.  She had scopes done this week on Wednesday.  Her next appointment is April 2.

I am looking forward to...  more green things springing up, seeing my girls perform in their plays, riding bikes with my kiddos.

Around the house...  my 10 year old daughter is reading on my bed, preparing for a book report about Pocahontas.  My son, 8 years, is dealing up Skip-Bo for us to play when I am done.  My 15 year old daughter is knitting in her room.  My 16 year old daughter is in her room doing something with writing or drawing, I imagine.  My husband is cleaning the garage :).

One of my favorite things...  a clean house on Saturday and nice weather to bicycle with!

Highlights from this past week...  We took 10 yo daughter to a new doctor to establish care on Monday.  On Tuesday I helped my 15 year old do a clean out for her scopes on Wednesday.  On Thursday I went grocery shopping.  On Friday I got to stay home and clean house, then take my son to the eye doctor for a school mandated checkup.  We found that he couldn't see certain shades of green and that he has a mild astigmatism, but he doesn't need any glasses.

A few plans for the next week...  Church on Sunday, prepare for Passover and week of unleavened bread next week, appointment for our son on Thursday at above-mentioned doctor.  Hopefully I can get the taxes done!

Thursday, March 12, 2015

My life perspective today

FOR TODAY...  March 12, 2015
Outside my window...  the sun is shining and the snow is almost gone!  It will be in the upper 50's today - the warmest it's been this year.  Monday is supposed to get up to 68!
I am thinking...  about my daughter's struggle with school and her feelings of inadequacy.
I am thankful... for my new computer!
In the kitchen...  I've come into a rhythm.  I've been doing a Whole30 program with the entire family and we are halfway there!  It is going much better than I had anticipated.
I am wearing... jeans and a long-sleeved brown and orange sweater.
I am creating...  organization out of chaos, a healthy family, self-esteem in my teens.
I am wondering... whether the changes we are anticipating for my daughter's medical regimen will make a big difference in her life.
I am reading...  SkellIg by David Almond.  A very good story.
I am hoping...  Princeton High School will have a good school option for both of my girls next fall and will take their credits from previous school work done.
I am looking forward to...  being done with my PA license renewal and being done with my taxes!

Around the house...  I moved the rats into Joe and Elly's bedroom.  I got tired of smelling their cage in our small living room.  This seems to be a better arrangement.
One of my favorite things...  green things growing where there has been cold, dark winter for so long!
Highlights from this past week...  We got my father-in-law home now to the new apartment.  My mother-in-law has been sick with a stomach bug, but my father-in-law seems to be doing very well.  My two youngest were both in school all week, although my youngest daughter still has cold symptoms and can't hear for the pressure in her ears!
A peek into my day:
From my back deck.  Much of the snow has gone and a little green is starting to show!
My oldest daughter loves to draw using her Samsung Galaxy

The sun is shining into my kitchen and making everything cheery!

Friday, March 6, 2015

A peek into my day...

Seeing... the beautiful sun shining in the windows!

 Hearing... the tinkling waterworks and hum of my diffuser and the wind blowing outside.
 Smelling... elevation and grapefruit essential oils diffusing, trying to wake me up and make me more cheerfully motivated!

 Tasting... a cup of decaf with ghee
 Feeling... sleepy, hopeful, glad for a partial day without the kiddos.

 Time to clean the ratties' cage and complete my license restoration application so I can eventually work again!

Sunday, March 1, 2015

SWD March 1


FOR TODAY...  March 1, 2015

Outside my window...  there is a couple of inches of snow on the ground. The juncos and finches are enjoying the feeder on my back deck.

I am thinking...  it will be nice when my new computer is set up so I can post pics again!

I am thankful... that I have nothing too pressing to do today because I am warn out!

In the kitchen...  my kitchen needs attention badly as I have been so busy that I am not keeping up with everything, sadly.

I am wearing... church clothes but snuggled into bed to try to get warm.

I am creating...  an appreciation in my family for nutritional foods (although no one much appreciates it right now as they are withdrawing from all the adulterated foods they are used to).

I am wondering...  how I can get on top of the sled of my life instead of continuing to be dragged behind plowing through the snow with my face.

I am reading...  The Shining Company by Rosemary Sutcliff.

I am hoping...  Princeton High School will have a good school option for both of my girls next fall and will take their credits from previous school work done.

I am looking forward to...  resting today and a new women's group I am a part of on Thursday evening.

Around the house...  my two youngest are playing Wii in the living room.  My two oldest are doing homework.

One of my favorite things...  birdfeeders and birds.

Highlights from this past week...  We had our first visit to Chicago to see DD#2's new pediatric gastroenterologist.  We really liked her.  DD#1 is having female problems, so I took her to see a GYN.  After we get lab results tomorrow, we'll hopefully get started on a solution.  DD #3 was sick Monday and Tuesday with a sore throat -viral.  DS was sick all week with an intestinal bug.  I had parent teacher conferences for the two youngest.  They both are doing very well.  We got a new computer from Best Buy!  We moved DH's parents the rest of the way into their new apartment yesterday.  However, my FIL ended up back in the ER and was admitted back in to the hospital for a few days due to heart failure exasperation.  He then needed moved back to the rehab program a few days later.  Hopefully he'll be able to go to his new home in the next couple of weeks.

A few plans for the rest of the week:  get stuff done that is stacking up on me and help my MIL get settled at her new place.

Monday, February 23, 2015


A mother walks a tightrope juggling
In the air are various responsibilities.
She runs up and down the tightrope as needed to keep each item in the air.
Food for the family
And healthy meals,
Homeschooling a child with chronic health issues.
Driving two children to school at different times,
Later picking them up.
Appointments to doctors,
Never-ending laundry,
Keeping the checkbook.
Another child home sick, again and again.
Soon she wearies.
Things drop here and there.
She cannot keep them all in the air.
She forgets to pick up the kids.
She misses the PTO meeting.
No time for her husband who works long hours.
Why do the kids keep getting sick?
Keep everything in the air, mother.
You can't let them drop.
The stress of it all burns her out.
She can't keep up.
The inability to pay all the bills puts her off balance.
How could she possibly hold a job and keep all these things in the air?
She feels disaster is looming.
Each day she picks herself up,
Keeping it all going.
The weight is tremendous, but she cannot stay down.
Breathe, mother!
Then one day she realizes something.
She does not need to do it alone.
Her God is holding things up in the air
When she lets Him.
When she asks.
He is giving her grace
And wisdom
And strength
If she comes to Him
And asks
With the faith of a child.

Friday, February 20, 2015

Daybook Entry 2-20-15


The Daybook is a blogging exercise I used to indulge in during my early blogging years.  I came across it again today and was inspired to use the template pounce again to get my blogging re-kickstarted.

FOR TODAY, Friday February 20, 2015

Outside my window...The wind is blowing snow flurries around and many little birds are enjoying the birdfeeder on my back deck.  Warmer than yesterday, the temps will get up into the 20s today. Yesterday it stayed below zero all day.

I am thinking... I really enjoyed the new Bible/book study that I took part in with some of women from my church, from another local church, and the staff here at Menno Haven. I was hoping to find a reason to fellowship with the women from the other local church, and this will be perfect! 

I am thankful... For a warm house and that I did the shopping yesterday so my cupboards are full today! 

In the kitchen... Lately we've been going to a major transition in the way that we eat. We have almost completely eliminated dairy from our diets. We are eliminating all grains, sweeteners, processed foods, etc for the next 30 days.  It is called the Whole 30 program.

I am wearing... Long underwear, black cords, red turtleneck,  grey, red, black and white striped sweater

I am creating... A healthy family, a clean house, and a blog entry!

I am going... To take Jaedyn to school in a few minutes.

I am wondering... If we will ever find a good school solution for Jaedyn.

I am reading... It Starts with Food by Dallas and Melissa Hartwig, and finishing book 5 of The Viking Quest series by Lois Walfred Johnson.  Both excellent reading.

I am hoping... To get to the point that all my kids will be in school and thriving.

I am looking forward to... Seeing what good changes the Whole 30 will bring to my family.

I am learning... About nutrition and healthy diets - quite contrary to common medical advice.

Around the house... The rats are happy in their clean cage.  Joe is in the clean living room on the couch watching The Hobbit DVD because he has a stomach bug.

I am pondering... what to do today.  I don't have much motivation.

A favorite quote for today... "The only ill will you will see here is that which you bring among yourselves." Gandalf to Thorin Oakenshield upon entering Rivendell.

One of my favorite things... My Bible.  I got it for my 16th birthday over 30 years ago.

A few plans for the rest of the week: Tonight starts Sabbath.

A peek into my day...

Friday, February 6, 2015

Taking care of David

My in-law's are the main reason we made a major disruption in our family to move back to Illinois.  My father-in-law, David, had a stroke back in 2010 just as we moved to Alaska.  He recovered fairly well, but has struggled with memory issues and a general health decline since then.

My mother-in-law, Margaret, has been caring for him along with a close knit community since that time, but the burden of his care has become to much for her.  He is 82 and she is 78.

I was coming and staying with David once a week so that Margaret could have some time out of the house.  We also shared supper with them once a week.

About 2 weeks ago, David had to go to the ER by ambulance because he couldn't breathe.  He ended up being intubated and transferred to a bigger hospital.  He recovered nicely from CHF and Wednesday night I helped bring him back to a local facility where he is getting therapy to help him get his strength back so he can go home.    He no longer is short of breath or needing oxygen.  It is sad to visit him in the evenings though because he gets confused and seems quite unhappy.  I think we will have to visit him frequently the so Margaret can get home and get rest.

Margaret and David will be moving to another home soon.  It will be hard for David again due to another change, but he will hopefully be back with Margaret and feel at home again quickly.

Friday, January 23, 2015

A Year Later!

How do I even summarize a year? I guess it's time that I tried. I was so busy with working full time and taking care of my children, and I was so tired of writing the same thing over and over that I lost interest in blogging for a while.

In July , we felt the Lord's clearly directing us to move back to my husband's  hometown in Illinois . My husband and my two oldest girls left in August so he could start his new job. My two youngest children and I stayed back in Alaska waiting for the Lord to sell the house, which he did supernaturally. It was a very stressful time nonetheless.

 November 1 my two youngest and I finally made it to Illinois. We have finally adjusted to the new routine.  Already I've made some new friends, which is quite miraculous for me. Usually takes me years to establish the kind of friendships I've made here already. I'm very thankful for this.

 Tim is working at Camp Menno Haven as the maintenance director . We love Camp Menno Haven . It's a beautiful place to live and wonderful people to work with. Josiah and Eliana are taking the school bus to public school each day and that transition has gone well . They started public school in Alaska which was a very good experience as well. The two older girls have been doing a small private high school, which is working out well for Ciara, but a little overwhelming for Jaedyn, who is now doing school part-time and doing some homeschooling as well .  I am not working at this time, but perhaps I will try to find an urgent care clinic to work part-time at this spring.

You may have noticed that I changed the name of my blog since we are no longer up north following that dream.