"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Sunday, October 13, 2013

September Wrap Up

I have been doing monthly updates lately but here we are well into October and I'm behind!! September was a fun and busy month and pretty good seizure-wise also. Luella only had three seizures in September and they all resolved on their own without the need of her rescue med! We were fortunate to have a couple longer seizure-free runs in September - one 11 days and one 15 days! I can't say that we feel free to go anywhere or do anything with Luella - there is always that thought of when the next seizure will happen - but it is less stressful on our entire family when we can go out as a family and enjoy spending some time together without Luella having a seizure! I have gotten a little out of my own comfort zone and have done some things I probably wouldn't have done with Luella in the past. We walked though a corn maze as a family and Luella and I took an hour long bus trip to a pumpkin patch! September was a lot of fun!

Luella started ECFE (Early Childhood Family Education) again. She is so excited to be back at school. ECFE is just once a week for 1 1/2 hours and I am there with her most of the time - the parents do separate for a short time to the next room so she gets her time at school without mommy too! :-) A MOPS (Mothers of PreSchoolers) group has started in our area so Luella and I have been going to that as well once a month. Grandma Johnson goes with Luella to help keep an eye on her. It's so fun to see Luella get excited about going out and watching her play and interact with other children (besides her siblings).

I would like to ask that you keep Luella in your prayers this week as she goes to our local Children's Hospital on Tuesday for a procedure to see how her bladder reflux is doing. Luella has vesicoureteral reflux (VUR) - something we've known about since her first few seizures were triggered by UTIs. She was tested then and diagnosed with VUR. Bascially Luella's urine backflows to her kidneys which can cause frequent infections. On Tuesday she will have a nuclear scan done to see if things are improving. She will have to have a catheter and a radioactive tracer will be injected into her bladder and then they can watch to see where the tracer goes. The last time Luella had this done there was some improvement on the right side so we are hoping to see that on the left side this time. Typically children outgrow this type of reflux but if they don't surgery may be required. This is not a pleasant test. Luella screamed the entire time last time she had this done. That was in May of 2012 so I'm hoping that since she is a little older I can better prepare her for it and it won't be so bad. Please say a prayer that things go well for her!

Also I wanted to give you all a heads up that November is Epilepsy Awareness month! Get out your purple and wear it as often as you can!

Below is a short video slideshow of some pictures from September.




1 comment:

  1. Darling fall pictures of Luella! Way to be brave with the corn maze :) I've had visions of us with Ben having a seizure in one and not being able to find our way out. Ha! That would be fun :)
    The best to you guys tomorrow with your appointment. You'll be in our prayers.

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