We had such a nice weekend, great weather, we got to spring forward so longer daylight hours.
I went to coordinate Tulsa Sibshops, it was neat to take enrollment and then go into the room and count 14 little heads, this is our 5- 8 year old. This is my age group that I co-facilitate and I love but I wasn’t sure where we would be at on J’s spine surgery so I made arrangements for someone to take it for me.
What did I do? I went to Kohl’s and purchased me some dress clothes, enjoyed a pedicure, so my piggy’s would be ready for warm/sandal weather. One of my missions for the day was to find a kitchen table, because the one we have only has a bench to sit on and it doesn’t provide any support for Jeremy and we needed one anyway. We have a really neat antique furniture store and he always has really nice items plus he’s currently got everything ½ off. I put Jeremy at the table with his little house in front of him and he played for hours, put things in the doors, shut the doors, which this is his favorite thing. This was one of them tears in my eye moments to see J sitting there playing and eating his pizza.
Jeremy has went back to having muscles spasms at night which isn’t anything new for us, he did this back when he was first trying to walk at the age of 5. He is definitely getting more tone, the PT explained this as his muscles don’t know to be floppy or stiff. We stretch him out really good, and I rub lotion on his feet/legs and massage him really well.
This week is Jeremy’s spring break, so he’s been a bum all week which he deserves the break. We went to PT session on Monday and he worked so hard, he was standing longer with less assistance, crawling better, sitting better. We see more progress each week.
We went back to see Dr. Confer, the Pediatric Urologist and like he said before the bladder is the last to wake up. We continue to intermittent cath J 3 times a day. He ordered an Urodynamics test to check bladder function, and Kidney Ultrasound to check the kidneys. We will go back to see him on April 20 for all the results.
Then tomorrow morning at 6am we are leaving for our home away from home Columbia, Missouri for a 1:40pm appointment with our super-hero, Dr. Dan. I am excited for him to see J, he’s made a great deal of progress. I don’t expect any surgery plans for future placement of the rods, but more continue with therapy, and come back see him in 6 weeks. I figured he should be able to give me a time-line of when we do need to get the rods done. I am excited because we are going to get to take some time to relax, see our Missouri friends and take 3 days to do it and do some shopping.
I have been getting frustrated thinking J has not made the fast progress he made in August and the fact is he isn’t where I want him to be. I want him to be walking to get his mobility and therefore gain back his independence the J before surgery. I pour my heart out to God, night, morning and throughout the day for spine & bladder health. If you look back over the PT evaluation of when we first got home and notes from Monday, J has made AMAZING, HUGE progress.
I pulled these 2 verses out of my daily promise box. When I come to work I turn on my computer, pull out a verse, focus and then throughout the day mediate on what it is saying. My attitude has been adjusted by these verses. I boldly come to the throne of God, not as a defeated child who is complaining, but because as a child of God, I have hope, can obtain mercy and find grace to help in time of need. I am expecting God to work every day in J’s body, some days I don’t see him working but I know he is working to restore his bladder and spinal health. Then as a child, I must wait patiently on God, and allow him to direct my path and into his love. Oh the promises, hope, love we have being a child of God’s.
“The Lord direct your hearts into the love of God, and into the patient waiting for Christ.” 2 Thessalonians 3:5
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| J at therapy, he was standing with minimal assistance |
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| J at therapy, riding the am-tyke |
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| Mr. Happy boy in the ball pit, throwing the balls out while I chased them. |
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