The wait is almost over…tomorrow is Tuesday and the long weekend is over. Tomorrow may very well prove to be a very busy day, and I welcome it. This weekend has been hard: I have watched Joel take a few steps backwards and I am hoping physiotherapy will have some ideas of how to approach this. He has not been super co-operative with the hospital staff but it could be far worse. For the most part he does what he is told to do, “Joel I need an arm for your blood pressure.” However when someone says, “Joel can I look at your belly?” Well let’s just say it isn’t a good idea to try and lift up his shirt then. I guess if he feels there is a choice in the matter then he’ll pick don’t touch me every time.
I think there were 2 major meltdowns today and they were doozies, still it was less than the day before. He definitely has part of his face that seems to have a tiny bit of paralysis and he really avoids using his right side. His tummy is still really distended so back on the med he can’t stand. I was hoping they would come up with a different med, I guess we will just have to wait and see. Other than that not much to report on. I am hoping to talk to oncology tomorrow as I have some questions rolling around in my head. I am also hoping that pathology has it’s final report in.
Joel had a great visit with his brothers and sisters and Gramma and Biba today. The kids had him giggling which is like honey for the soul. He told me he likes it when Daddy, Elijah, Taliah, Joshua, Hannah, Gramma, Biba and Uncle Kyle come to visit him. Obviously he is missing them terrible.
As for this week the Neurosurgery team is pretty sure Joel won’t need a shunt but will have to do a scan to be sure. He will probably get his lumbar puncture this week. It also sounds like his bandage will come off and his staples removed. Physio will start up again. We will see speech and I think someone from Ophthalmology. Of course tests results should start rolling in. I am told that is just the tip of the iceberg when it comes to how many people are on the medical team. If nothing else it should prove to be an interesting week.
I’ve mentioned how I tend to be a worrier, I read this definition of worry this past week and thought I would share it.
“Worry is a small trickle of fear that meanders through the mind, cutting a channel into which all other thoughts flow.”
I cannot tell you how much that describes my previous thought patterns. Did you notice that…..that eight letter word starts with a p and ends with an s. Just in case you missed it somehow; I cannot tell you how much that describes my PREVIOUS thought patterns. It has to do with all those prayers you all are praying. Some of you I know have been praying for years and are veterans at praying and I know some of you prior to this could probably count on one hand how often you’ve gone to God for something. I just want to say it is real. Prayer works there is a real God listening. I can’t possibly begin to answer all the tough questions of this world and the why did ____ have to happen. I can’t tell you what Joel’s outcome will be but I can tell you that I am sitting here in Joel’s hospital room in the presence of answered prayers. I am not a basket case of worry, I have peace. I can look at a week full of test and talks about cancer, radiation and chemo and not get all worked up. I have peace. Now don’t misinterpret my lack of fear and worry with an absence of concern. I am totally concerned with how this is going to end up, how Joel will cope, how the other kid’s are managing, how my parents are doing with all the kids, cats, guinea pigs, gecko, rabbit and of course the huge St. Bernard puppy. While I have concerns there is no fear it doesn’t eat away at me.
“And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.” – Philippians 4:7
It really has to be God’s peace, if I am someone who can loose sleep over small things, how is it possible for me to go to sleep beside my 4 year old boy who less then 2 weeks ago had a cancerous brain tumor removed in an almost 11 hour surgery who faces months of treatment and recovery, it can be nothing but His peace.
Thank you all again for your prayers and emails; the love and support is so encouraging. You have no idea how it lifts Dave and I up to check our email or this blog and find words of love, encouragement and prayers. Thank you and blessings to you all.Pin It