We were scheduled for our 2 month review on June 6 with the Oklahoma Health Care Authority to determine if J would continue to qualify for nursing. I will be honest when I say, I hadn’t given it a second thought and wasn’t worried because things haven’t changed but was left with the perception that Jeremy may not qualify. This forced me back into fight or flight mode. We finally heard yesterday that Jeremy does in fact qualify from July 1, 2011 to December 31, 2011, for 12 hrs a day/7 days a week and that we won’t have to do another review for 6 months. Thank you GOD.
The next week Jeremy was diagnosed with his 5th UTI, why and we have to figure this out. I don’t think it’s the sterile technique we are using but there is always room for human error. I do research in Jeremy’s conditions, always have, always will, will continue and not apologize. I am his biggest advocate and making medical decisions for my son. I got with our catheter salesman and we tried many different closed systems and decided on the MTG EZ-advancer. We got them yesterday and I love how easy they are to use, they come in a neat little kit all together and I think this is going to be as sterile as we can get and comfortable for Jeremy. I started talking to 3 of my families who have to catheterize their child but their children are not having to be treated for UTI and the common denominator was, they irrigate the bladder with normal saline on a regular basis. I quizzed Dr. Confer, J’s urologist and made several suggestions toward the care of Jeremy with each one being shot down, with no we don’t do that, no we don’t need to do that. I felt defeated, like nothing I said mattered, so we aren’t seeing him anymore and will start seeing Dr. Oran Miller who does in fact recommend irrigating his bladder.
It was time for us to see our Neurologist, I think J’s seizure activity as increased. There was 1 night that Jeremy’s head and upper limbs were shaking in bed, it didn’t last long, he was fine after but the next day he was exhausted. Jeremy re-building muscles and has went from low muscle tone to extreme tight. He is so tight that he is rotating his one knee inward, that is not good for his development and it’s preventing him from being able to move. Dr. Cyrus increased his bacoflen to twice a day, once in the morning and once at night. We went back to Dr. Steve Miller the first Neurologist in Jeremy’s life today had a good visit and forget how hard it is to go over Jeremy’s history. I always liked him, found him easy to talk to. He is going to do an EEG and we are going to do Botox injections, if Jeremy continues to be tight we may need to do surgery to release the tendons.
I got to go out and eat with a friend who I’ve not seen in 2 plus years. We have so much in common, her 4 year old son is the only other boy that has the probable “FG syndrome” in Oklahoma. It was like me going back 8 years when Jeremy was 4. It was neat to see him because the last time I seen him he was in the hospital battling shunt issues but Saturday he was a happy, healthy, active and ornery little boy. I was able to tell mom he will probably outgrow that because Jeremy did. We had a good lunch, good visit and I got hugs and kisses from a sweet little boy. We decided that we need to get the boys together sometime and let them interact with each other.
I am making plans for our return visit to see Dr. Dan for a 3 month check. I can’t wait to see his face and think he’s going to be pleased. I’m going to make this a 3 day trip to have some fun and relaxation. Motels with indoor/pool-hot-tub is just the ticket, some shopping in Osage Beach at the GAP outlet and baby we are sit. We are going to visit the Orion Space Museum in Camdenton, I goggled it last year but we never did make it there and I think Jeremy will have fun there. I will probably take Jeremy to Miner Mike’s, we had fun there last year and Jeremy really liked the indoor roller coaster and I get to ride with him. We will get to see Dr. Dan, Holly, go to the hospital to see all his girlfriends who just LOVE Jeremy and I can’t wait for them to see him and him see them.
Jeremy has been initiating standing on his own all week, you sit him down and he stands up because this is typical Jeremy behavior, I can stand now so I’m going to keep doing it. It has been neat to watch him this week. He was using his upper body and tried with all his might in Dr. Cyrus office on Wednesday to take a step but he just couldn’t get his legs to move, well today that has all changed, in Miller’s office with me holding just his hands he took a few steps, he was able to maneuver his legs. When we got home Misty the HTS he did the same thing with her, she said he was all over the gait trainer this morning and liked it. He is getting there.
“Whatsoever is born of God overcometh the world: and this is the victory that overcometh the world, even our faith.” 1 John 5:4
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| J signed his paper, "J" |
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| You can sit me down, but I'm going to stand, because I can.... |
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| J with his guitar |
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| J on his trampoline |
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| J with his favorite thing |
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