Danny just had a 48 hour EEG done as the doctors feel he's "pain" might be seizure episodes. I hope they got enough information so we know what's going on with Lil Man on a daily basis. They want me to increase his meds once again, but I'm now in the prove it mode. His liver functions have gotten all out of whack with these meds before so I'm not too excited about increasing them unless we come up with some proof and possibly other alternatives. My fear is if we start screwing around with his liver functions now and if he should need to be back on TPN after his spinal fusion/rods in May we've just added fuel to the fire as TPN also effects the liver. UGH!!!
Here is his dread locks of wires, all 25 glue to his head with glue that's "better then super glue". When they flatten his hair up you really can see how small is head really is. The top is so small because his brain doesn't grow so there is nothing pushing out the skull. I have infant hats that fit!
This time around they gave him a bandana to wear around the bandage holding all the wires in place. Now instead of getting the looks as if he had brain surgery they think he's had chemo. I just want to have a sign out saying there are wires glued to his head .... that's it no biggy! Here he is so cool........ready for Harley ride, I think.
After washing his hair of all the glue....well I thought I got it out. It still looks as if I dipped his head in white paint. I'm going to try to wash it tomorrow with baby oil and see if that helps get the glue out, UGH!
We had Avrianna's conferences with her teacher this week. She is doing so well and just shining in school. I'm so proud of her! Her teacher says she's a model student and that she a joy to have in class. Boy does she have them all fooled, LOL. I can't express enough how happy I am that she is not only doing so well but enjoying school. She is also excelling in her piano classes. I'm in awe of the music she can play and how awesome it sounds. Danny just LOVES listening to her play so I think that's an incentive for her :) She's a great BIG sister!!!
It's approx. 72 hours and we'll be in the sunny state for some much needed R&R time for the Osero's. The bags are packed, the RV is almost ready, and we just have to get the odds n ends things together on Friday. I'm to the point with packing up Danny's equipment and supplies up where we need wait till the day we leave as I use it daily. It's been a year since we've been able to get down there and we ALL are excited to get there. It is going to be so nice to have no plans, no doctor visits, no therapy, no nursing, no contractors......just US. With the economy we've decided to hold on to our condo and see if it's a better idea to just rent it out once in awhile and that way we'll always have a place to go to.
Dan's getting ready for racing as when we get back he will be in full force. So the car is getting it's tweeks and repairs done so once the track is open he'll be ready, set, go.
Please don't forget to pledge dontations to the MS walk I'm doing in April. Ever little bit helps so please support the walk and ME. Click on the link to the left of the blog page and that will get you to my personal page. THANK YOU!
The Importance of Rest for Caregivers
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