“Hang in there, Joan!”

Ah yes, my favorite line from the movie Frozen.  If your name is not Joan you may have missed it, but not me. Caught it the first time and I’ve repeated that line to myself a thousand times since! 🙂

Heard a psychologist say recently that a person who doesn’t share their prayer needs, out of fear that others are tired of hearing from them, is caught in a shame trap from being traumatized from the past. Ok, might be me, so in a step of faith I’ll proceed (knowing I need help in “hanging in there”).

I also need to update all of you who have been doing an incredible job at praying for our family – so appreciated, those prayers are being felt for sure. We are wrapped in medical needs at the moment. So many appointments, all the while trying our hardest to dodge the Covid ball with its ugly spikes!

This morning, very early, I went to get my own blood work completed. Yup that is right. I do try to keep a little up to date on my own health care. The lady checking me in asked what my occupation was. I said, “Oh just a caregiver”. She stopped her keyboarding, looked me directly in my eyes (between hair and mask, nothing else on my face on which to focus) and said, “That means you are everything! I am putting you down as an Essential Health Worker.” Woo-hoo, I finally reached that status!

Anyway, Matthew update!  We survived 5 days at CHOP! He did his first phase for the potential brain surgery to control seizures. It was quite the time but all in all he did well. Enough info for the doctors to say they want to move on to next stage. But Ron and I are asking if we could put it on pause for a moment. We feel we can control Matthew’s seizure’s enough with the medication he is on. If his little spasms cause him to space out a bit, we can still get his homeschool in – just takes a little longer. Because of upcoming holidays and Covid on the rise, we really don’t want to be in the hospital right now. And there is another issue: He is being started on a drug for attention deficit and we need to do just one new thing at a time. So, new med starting today. Pray that he tolerates it and that it would help.

Kari is top priority right now.  Between her seizures and infections, we need to get to the bottom of things. We’ve dragged the poor girl to 3 appointments in the last 2 days (she hates wearing a mask, but now seems resigned to it).  At her first visit, found out she needs surgery soon to change the battery on the VNS device she has implanted to minimize her seizures. The last few months the VNS has had to work overtime, which drained it more quickly. My prayer is that it only needs a new battery and that the wires around the vagus nerve are still good (keeping the surgery minor). Regarding her kidney/urinary tract, she has three tests scheduled for one day and at one place – so sweet that she doesn’t have to be dragged all over the place. In the meantime, she is on long-term antibiotics to control infection. She is quite the fighter.

My parents too have much to struggle with daily. With the pediatric wing taking so much time and attention, we feel like we are not giving them what we used to. Fortunately, they think otherwise. We keep praying for them as well, as I juggle mom’s up and down condition and watch dad taking backward steps in his health – but he is 88 so I guess that should be expected. Thanks for your prayers!