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.

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.