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.