Tuesday, April 26, 2011

transportation, a new job, and Keto

Yesterday was a stressful, but blessed day. It seems many of my days are laced with my own emotional outbreaks and sprinkled with life's solutions. Per my prior blog Mike called me very upset due to Jude's first medical transportation experience. Everyone who knows us knows that Mike needs to work. He needs it for his own health and to help our family. I have been the only working parent since 12/08. We wouldn't give up our life of caring one on one for Jude unless an amazing opportunity has presented itself. Mike is pending a job with the Dallas Cowboys. It could very well be the very answer to our prayers. Not only do they want Mike for his abilities, but the person he has interviewed with has been amazingly supportive about Jude's situation. According to his phone call from the headquarters today Mike has the job he is just pending the final pay results. So as a test run Mike set up transportation for Jude to therapy today. Jude will start school in September, but prior to that he has to get to his physical therapy. The driver was late.......so Mike called. The driver was even later ....... so Mike panicked. Finally the driver arrived. They had to strap Jude in, with his nurse, and with Mike. Mike was very stressed.......but in the end everything worked out. Mike felt comfortable with the driver and I think he was able to breathe a little easier at the end of the day. Our nurses have full signed releases to issue treatment to Jude, but they cannot transport him.

Emily is doing better. She stayed home from school yesterday because her legs were hurting so bad, but she went back today. They have the TAKS test today and tomorrow which has stressed her out. She always gets commended or close when she takes these tests, but she still stresses. I really think it's sad that the TX educational system focuses solely on these tests now. They seem to solely go to school just to learn the information on these tests and nothing further.

I am calling the neurologist today because Jude seems very over medicated. It's a catch 22 because to properly control his seizures he must be medicated, but then he doesn't learn anything. Jocalyn will be happy to know we are talking to the doctor about the KETO diet. It scares me because Jude already takes a medication that can affect his kidney's and liver, but if it works this may help him wean off the medications a bit.

The weather has yet again been a beast in TX. Yesterday we had 15 tornado's touch down in our surrounding areas. We also heard Arkansas got hammered last night and is expecting more today. Prayers to those affected by these storms.


claire said...

I've seen a lot of great things happen for kiddos who go on the keto diet. I think the med ratio changes and there are less potent medications, plus children are not on the keto diet forever (i don't think?)

Best of luck!!!

jocalyn said...

hooray! kendall was on it for 18 months, weaned from 4 seizure meds, and is doing great!! with the g-button it will be a piece of cake.

check out my most recent blog. just want you to stay abreast of nursing in the schools...especially if you get dependent on your nursing hours for a job. it would be worth making sure your district will allow your nurses to go along with him...and GET IT IN WRITING!!!
otherwise, you have a seperate nurse at school from the district or different contracted agency.

Katy said...

We have a woman who lives here who is a complete KETO advocate. Her daughter developed a rare seizure disorder around age two and was having so many seizures she was barely able to swallow. Now she looks completely normal again. Good thing is that it isn't forever, so if it's not good for Jude's kidneys or liver, you don't have to keep doing it.