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