So glad to hear that the tests went good. You and your family are doing a wonderful job. Thank you for sharing your journey to us. You guys are in my thoughts and prayers. God bless you.
No place like home and your own surroundings -- hospitals are def not restful places. I always spike a bit of a temp whenever my discharge is pending or past due. My seeing Daniel's smile invariably has the ability to lessen my physical and emotional pain some. Tonight, all of my joints are bothering me - which usually happens when my muscles are more spastic than usual. Anyways-thrilled to know that all went as well as it could. Thinking of you.
I used to work in neurophysiology in a UK children's hospital & one of my jobs was removing the electrodes. Acetone works really well if you have trouble getting the glue out of Daniel's hair in future. The problem with EEGs is that they can be so hit & miss. Although during sleep, you can get indicators of potential seizure activity, especially when dropping off to sleep & waking up from sleep, so that will have helped with the EEG running over night. But it can be so difficult to catch seizures to see if new stuff is happening while the person is awake. I totally agree with you not staying the 2nd night, you have to take into consideration the patient's condition. You mentioned that Daniel had a bit of a fever, I would take my child home too if they had a fever & were only in for a test that can be so hit & miss. Like you said, you can go back again if things change. But I'm glad things haven't got worse for Daniel.
Julie: isnt there some program that gives a fulltime caretaker like you a govt check of sorts for the work you do, even if you are the mom? I could be wrong but I thought there was a program. Maybe that could help with all the bills. I hope you schedule in ME Time for you. You deserve it. Daniel, and the other kids, are so fortunate to have You in their lives.
I have hydrocephalus and also Spinal Bifida.. I had the same thing done last yr due to a shunt malfunction that I have had for 37 yrs,, meaning the shunt it finally was not working right so my doc added a new shunt and come to find out I am not allowed to have novocaine at my dentist appts due to it can cause me to have seizures.. I was a lil freaked but it is what it is. Ohh as I mentioned that surgery was my 94th one..Not all for the same thing ..I have had things to be repaired and fixed and added.They did my hips 15 times in my life time and they are still dislocated so we stopped those when I was 12 and I am now 49 and doing pretty well. Ohh I plan to start blogging once a week starting Friday.
Julie: I never comment on your videos. But I wanted to say that you are amazing! I love seeing Daniel's smile!
Glad to hear that he is doing ok Julie. My prayers go out to all of you. You are one strong, beautiful woman. :)
Awesome. Big hugs for my Astronaut.
You are an amazing family! it is such a fulltime job looking after Daniel and must be so exhausting. I admire you so much. happy Mother's day Julie.:)
So good to see him smiling :)
Great video juile you do a great job on your videos
Daniel is so amazing. Always smiling no matter what. Glad everything is the same or even a bit better. It must be hard to get a baseline on him .
Good to hear that all seemed okay...
Nice video. Thank you for sharing with us..
Take care and have a wonderful day..
Glad everything worked out well Julie.
So glad to hear that the tests went good. You and your family are doing a wonderful job. Thank you for sharing your journey to us. You guys are in my thoughts and prayers. God bless you.
big thumbs up for things going well
wonderful!!!
Staying in the hospital is no fun. I am so glad I got to come home yesterday
No place like home and your own surroundings -- hospitals are def not restful places. I always spike a bit of a temp whenever my discharge is pending or past due. My seeing Daniel's smile invariably has the ability to lessen my physical and emotional pain some. Tonight, all of my joints are bothering me - which usually happens when my muscles are more spastic than usual. Anyways-thrilled to know that all went as well as it could. Thinking of you.
Hope you sleep well. Hugs to Daniel
What is the music around the 9 minute plus mark? It is beautiful
I used to work in neurophysiology in a UK children's hospital & one of my jobs was removing the electrodes. Acetone works really well if you have trouble getting the glue out of Daniel's hair in future. The problem with EEGs is that they can be so hit & miss. Although during sleep, you can get indicators of potential seizure activity, especially when dropping off to sleep & waking up from sleep, so that will have helped with the EEG running over night. But it can be so difficult to catch seizures to see if new stuff is happening while the person is awake. I totally agree with you not staying the 2nd night, you have to take into consideration the patient's condition. You mentioned that Daniel had a bit of a fever, I would take my child home too if they had a fever & were only in for a test that can be so hit & miss. Like you said, you can go back again if things change. But I'm glad things haven't got worse for Daniel.
How old is Daniel now
I hope daniel does not die,it would be really sad to lose him..praying with all my might for him. (^_^)💜
Julie: isnt there some program that gives a fulltime caretaker like you a govt check of sorts for the work you do, even if you are the mom? I could be wrong but I thought there was a program. Maybe that could help with all the bills.
I hope you schedule in ME Time for you. You deserve it. Daniel, and the other kids, are so fortunate to have You in their lives.
like you
I have hydrocephalus and also Spinal Bifida.. I had the same thing done last yr due to a shunt malfunction that I have had for 37 yrs,, meaning the shunt it finally was not working right so my doc added a new shunt and come to find out I am not allowed to have novocaine at my dentist appts due to it can cause me to have seizures.. I was a lil freaked but it is what it is. Ohh as I mentioned that surgery was my 94th one..Not all for the same thing ..I have had things to be repaired and fixed and added.They did my hips 15 times in my life time and they are still dislocated so we stopped those when I was 12 and I am now 49 and doing pretty well. Ohh I plan to start blogging once a week starting Friday.
Thank you:-)