Thursday, October 20, 2016

Fall Days

DH, JJ and I


The kids are back in school now.  LE and JoJo are going to the private school they started last spring, and it is still going very well.  School wasn't an option for JJ this year, neither public nor private.  The public school won't take any of her credits she has already received by homeschooling or from the private school.  The private school wasn't a good fit.  This year we are homeschooling and it is going well.  It's a very good thing we did this, as her attitude is much better.  She is self-motivated to get her homework done, and she seems overall happier.  It also allows for her to go to her doctor's appointments without getting too far behind.  She is taking US History, English 3, Algebra 1.5-2 (review and will move forward as she comes to new material), Life Skills, and for science Oceanography and Ecology this semester.  We're reading Peace Child now by Don Richardson, and she's finished Stink Alley so far.  She also got her learner's permit.

CC in front of her dorm when she first got to school.

CC is in Ohio attending Bluffton University.  She was not well the first 3-4 weeks and became very home sick.  She is a little healthier now and seems to be holding her own much better.  I brought the 3 kids out to see her the first weekend of October and that was a real blessing to her.  Sadly, I think she is still having issues with back pain.

First checkup after DH'S second surgery.
LE's Houl-loween concert with her flute ensemble at Music Suite 408. 
She is the second one from the right.

A very busy me drives over 3000 miles a month going to work twice a week 50 minutes away, taking the younger kids (LE and JoJo) to school and music lessons, taking LE to doctors and PT sessions, taking JJ to doctors appointments, and also DH to his surgery, picking him up after surgery the next day (in Oak Lawn - two hours away), to PT, and follow-up appointments.  My house is a cluttered mess and it makes me crazy.  I spend most of my free time, very little of my time is free, cleaning the kitchen.  I never seem to catch anything else up, except the laundry, although I am behind on it now.

JoJo and LE

We moved my father-in-law to the nursing home this week.  It was sad, but he is adjust well.  He is a real trooper.
LE, me and JoJo at Tanners Orchard


This weekend I took the kids to Tanner's Orchard.  I just took the younger two as JJ wasn't feeling well enough to go.  She's been suffering a lot lately.

Sunday, June 26, 2016

A summer update

I have found that it's hard to blog when the kids are sick and nothing seems to be going right.  I am surprised however, that it has been 6 months since I blogged.


In February things came to a head with Elli, she admitted that she had been eating gluten because she did not like going to her new school.  She had no friends and she was being bullied.  When she ate gluten it made her sick, so she could say that she wanted to stay home because she was sick.  I decided to change schools for both of my youngest children.  This proved to be a very good move.  Elli was no longer bullied.  She was able to get involved with the school play and choir. She continued band at her former school until the end of February and went to Contest.  She got a I in both her flute solo and her vocal solo.  She started doing flute at Music Suite 408 in Peru after that. She got a very good part in the school play "Little Women" as Jo March, as the narrator. She was still sick fairly regularly, but went to school much more regularly.  This month she had some more allergy testing and found out that she is allergic to corn.  Taking that out of her diet, I think, has made a big difference.  She isn't sick as much.  It is tricky since she can't have gluten either, but I think it is worth it.

Elli with some of the cast for Little Women.
She's in the teal dress.

JoJo didn't like his new school at first because it was "harder".  He still pulled off all "A's".  I felt that the other public schools were not challenging him.  He proved this by catching up with his new class in only a few short weeks.  He never had homework.  He was part of the recreational soccer program in the spring.  He continues to do well in violin.  He loves to play board games and computer games.

JJ left and CC right during their spring play.

JJ had another rough time this spring.  Her seizure medicine continued to play havoc with her ability to focus in school and it became even painful to write.  She became very depressed and even got suicidal.  I had to pull her out of two of her classes that were just too overwhelming for her.  She ended up in the hospital for 9 days.  It was horrible for us to see her so low.  After that I realized that it was likely her seizure medication and her neurologist agreed.  We slowly weaned her off that medication.  In the meantime, she was on antidepressants.  The first one made her dizzy and made her stomach hurt.  We switched her to another but it took her appetite away and she was very spacy and mean.  Now we have her off of all three of those and I think she is doing much better.  She doesn't think so, but I can tell.  We are working on getting her English 2 completed this summer, and she can focus on the reading and discussions well.  Hopefully we'll get some writing done this summer too.


JJ continued in a special ensemble group and participated in the play at school.  She did well in spite of the mean medicines!

CC and friend at their formal.
CC finished her senior year and graduated May 28!  She has chosen Bluffton University and will study Writing and Art.  She has earned a few nice scholarships.  She has met her new roommate and is psyched about starting.  She doesn't even want to wait out the summer, but she has to.  She may have finally gotten a job.  She has not had much luck until this week.  She may have a job at Liberty Village as front desk receptionist.  I think this is a good place for her.

DH will have surgery tomorrow, finally, on the ankle that he injured December 26.  It will be a two part surgery with a fusion of part of his ankle, followed by an ankle replacement in 8 weeks.  He isn't looking forward to this, but is looking forward to being able to walk again.  He still can't bear full weight on his right foot after 6 months!

I think I might have something going on with my esophagus.  If I eat bread or dry cookies, hard boiled eggs, etc, they seem to get caught in my esophagus.  I have put it off for a year probably, but it has been getting worse.  Perhaps due to my stress.  Who me, stressed?  Unfortunately it isn't helping me lose weight, but I guess that is a good sign too.

Thursday, January 28, 2016

Time drags on

JoJo (9) had his surgery last week.  We had to wait from 9 am to 4:30 pm in the preop area, which was very frustrating.  The surgery took about 20 minutes and we were finally on our way home after 6 pm.  He did well.  Much better than I.  From about 1:30 pm on I was boohooing.  The stress of waiting and not hearing anything from anyone about when we were to start and feeling uncared for was too much for me.  I'm so sick of medical crap, and that just sent me over the edge.  Today someone called my husband with the pathology report and said that it was due to inflammation secondary to an insect bite.  The thing is, that bite happened in July.  I just don't buy it.  I feel like they are feeding me lines.  His head is healing well and there is very little inflammation left.  The lymph node may be getting smaller too.  He caught a cold.

Elli (11) saw the pediatrician this week because she has missed so much school since we moved here.  She has missed like 28 days now in 15 months.  The doctor thinks it might be due to her allergies.  She recommended that we restart her Claritin and Flonase and is sending us to ENT, to an immunologist and to the same geneticist that Pumpkin (16) is seeing to see if she has hypermobility syndrome too.  The latter two referrals I requested.  She missed a half day on Monday for this appointment.  On Wednesday she was woken in the night 3 times with diarrhea.  Yesterday she was so dizzy she could barely walk and her stomach was upset.  She had to stay home from school.  Today she was nauseated in the morning but went to school anyway.

Pumpkin (16) had a sore throat on Monday and Tuesday with foul sinus drainage.  Since yesterday her sinuses have been flowing like crazy.  Poor girl.  She is so stuffed up.  She has been doing well GI wise, though and holding her weight until now.

CiCi is hanging in there.  She wrote a short children's story yesterday.  It was really cute about a baby penguin who became a bowling ball.  The picture was cute too.

Thursday, January 21, 2016

Things are looking up

Tim is doing PT and is allowed to bear weight as tolerated.  He is doing sit down jobs at work.  He can't put much weight on it, but we feel things are moving forward.

JoJo is having surgery today.  I think it will be a biopsy.  We're waiting for them to take him back now.

Elli got sick again this week.  She made it back to school yesterday, but wasn't completely on top of her game.

JJ is doing great.  I rarely hear a complaint out of her except that she doesn't want to do her homework.

CiCi has started stepping up to help more at home.  It's a real blessing.  In spite of her anxiety issues, she pulled off all As except one B in history.

My back is much better.

Friday, January 15, 2016

Rough winter

Our family still isn't catching a break.

JoJo is having surgery next week to debride the area of the tick bite.  He had three weeks of antibiotics (doxycycline) without improvement on either the bite site or the lymph node.  Well the rash did go away, but he has itchiness on his elbows and back now too.  The blessing in this is that he's not gotten really sick or other symptoms of Luke's disease.

Jae was in the hospital for 3-4 days in December for a 9cm clot in her arm.  It seems to be much better but not completely resolved.  She came home December 24.  The blessing in this is that she was home for Christmas, finally off steroids now, and keeping her weight on!

Tim, my dh, was in a 4-wheeler accident December 26.  He has not been able to use his right knee or ankle since then.  The blessing in this is seeing how his boss and co-workers are helping us out.  Also he's always home to help supervise the kids.

CiCi wrecked my van 4 days ago.  Now my ugly van is even uglier.  I tried to talk my Dhaka into getting rid of it, but it is still driveable so no can do.  The blessing:  CiCi and Jae came out with minimal scratches.

4 days ago I strained my back.  I didn't hurt much the first day, but having lots of discomfort now.  We're blessed with a freezer full of meat that I was picking up when this happened.  Tim got 3 deer this year!  Also, I'm thankful that my schedule had two days off work for me to rest.

Elli keeps getting sick.  Strep throat, abdominal pains, headaches, dizziness...  She's missed 10 days of school already.  We've got an appointment to try and figure this out.  The blessing is that I have a lovely daughter and we've had some good conversations lately, and she's currently back in school.

Hopefully we'll be out of this valley soon, but we're thankful to have our heavenly Father taking care of us along the way.
The van after the accident.

Tim's ankle a week after the accident.


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.