Sunday, January 1, 2017

Happy New Year 2017

Tim and I having a date at the Flour House in Princeton.
  I love the ambiance of this little bakery/coffee shop.
My dear JJ.  Pray that 2017 will be her year for healing and
getting her life back.

2016 started on the heels of a rough fall 2015 with

JJ's health issues going sour and three hospitalizations.  She crashed in April on all fields - GI pain, depression, seizures and spent 9 days in another hospital scenario.  We seem to have gotten into a vortex that we can't seem to pull out of and move forward with her.  I kept her home this year to keep the stress at a minimum.  She gained weight up to 125 lbs and grew another 3/4 inch, much to her delight.  In the fall she started sliding backwards again - the seizures returned over the past 2-3 months on a weekly basis.  We tried another seizure medicine but couldn't get past the lowest dose due to severe depression, suicidal feelings, abdominal pain and weight loss.  She still is slipping down on her weight and is down to about 114 again.  It is very discouraging.  We are frustrated with her current GI, who never seems to offer much hope of improvement and doesn't really try anything new either.  We have started at another GI's office, and have been waiting 2 weeks since our visit to have all her other records gathered and reviewed.  Our current GI seems to look at her through Crohn's glasses only, look at her labs and past scopes, and say, "oh looks like her Crohn's is in remission" and then don't try to figure out what the problem is.  My biggest pet peeve is the diagnosis IBS.  It really is a catch-all for "I don't know what the heck is wrong, so I'm just going to throw antispasmotics her way and hope she gets better."  We've tried all the traditional IBS meds, but most of them increase her seizure activity.  Their answer for her weight loss and rectal pain was a painful rectal ultrasound, in spite of her abnormal MRI, and not only that, but they wanted me to figure out who could do it.  I've given up hope that the original GI will ever move forward with her. In January she will see a new neurologist as well, since she's pretty much blown through anything the current neurologist feels she can offer.

CC, LE, me, JoJo, JJ
CC finished her first semester with high standing - As and Bs.  She is feeling much better about school.  She isn't having as much back pain, but seems tired all the time.  We took her to the doctor over Christmas break and found some things out of whack, and have made a few changes in her medications.  Hopefully this makes a great improvement in her life.  On New Year's Eve, she ended the year with a bang, literally, when she was involved in a motor vehicle accident which totaled our beater van.  Fortunately only her pride was hurt.

LE is on the right between cheers.  Isn't she cute?

LE had a great semester overall.  Her grades are outstanding - the best I've seen for her. She is making friends, was a cheerleader for boys basketball, continued her flute at school and with Music Suite 408.  Just before Christmas break, she found out that she was invited to be in the area wide Junior High Honor Band.  She had many concerts this fall and Christmastime and was in a school wide Christmas musical with a solo part.  She has grown so much in her flute skills and actually thanked me for making her keep with it.

Celebrating JoJo's 10th birthday in November.

JoJo is thriving at Princeton Christian Academy as well.  This semester he was involved with basketball, which was a very good thing.  I loved the coaches and the whole atmosphere of it at PCA.  Joe is also busy with his violin and has started doing percussion with his school band.
Tim had his second surgery in September, a total ankle replacement.  He is now out of his boot and walking unassisted, but he is still having a lot of pain in his foot.  He does therapy 3 times a week.  They said that he should be able to do light duty in February.  I hope that his foot stops hurting by then.  They also said he'd be back to full duty in April.  We are waiting for a call from a place that does orthotics so that he can get some, but there seems to be a hold up due to the holidays.  We're hoping that these help with his foot pain.  In the picture to the left, he is eating at a the Naf Naf Grill in Orland Park during one of our trips to see his surgeon.  He really enjoyed this.

We lit the Hanukkah candles this year.  It is a small thing, but reminds us God has things under control and He is our light when the world is a dark place.  This Moses bush on the right also reminds me of God shining hope in my life when things are overwhelmingly dark.

Tim's father passed away peacefully just before Thanksgiving.  We were able to see all of the Gales and many other family friends that week.  Christmas day was spent peacefully with Tim's mother and a local friend we invited to share it with us.  Randy has been very good to reach out to Tim during his convalescence.

One last mention before I close, is that two close family members were diagnosed with cancer this year.  My 48 year old sister in law was diagnosed with breast cancer and underwent chemo and radiation and surgery.  My 19 year old nephew was diagnosed with Ewings Sarcoma over Christmas break.  He underwent surgery just before Christmas and is suffering as he waits to see the oncologist for further treatment and answers this month.

Tim's dad passed away just before Thanksgiving. 
Here is a picture of all the Gale cousins gathering for Thanksgiving. 
Being near family in times like this is wonderful.

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!!!