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.


... chasing slow said...

We will continue to pray. I'm so sorry that you are still in a battle. I can relate a little (but it's my own battle) and cannot compare to that of a mother's heart with a child's health battle ((hugs))

I did want to share that I read another blog who has a daughter with the exact syndrome you are mentioning. If you want to read up, her blog is:

May you feel the Father's guidance.

John said...

Hi Carol, I really feel for your family, you are going through something nobody should go through. The things I am going through are miniscule at best. My hope is one day this will go away and you all can live your lives the way you should. Hope this makes sense.

Carol said...

Thanks to both of you for your concern. You are both considered friends.