Getting back to life...

Last week we took the week off, which was a break well needed for Hudson as well as myself. I rarely cancel his therapies, so not running last week was huge in recovering from the flu.
Now we are back to "normal"...Hudson's normal...which means we went to P.T. yesterday, Oral therapist was at the house as well, today we go to Children's for a clinic visit with dermatology, get the 2nd seasonal flu vaccine, and pick up prescriptions. Wednesday- O.T. at the house, Thursday- O.T. at the house, Friday -Oral Therapy at the house, swimming at the YMCA. Yes, this is our normal...besides keeping up with Hunter and Hailey's schedules and homework, and having Paul out of town all week...this is us back to our typical week. I hope I don't sound like I am complaining, cuz I'm not...I am grateful to all of the therapists that truly care for Hudson and our family. I have had several call me to see how were recovering, and one special O.T. offering to shop for me, bring dinner, or clean my house! In never took her up on it...because I never want to put anyone out of there way, or admit I may need help...but the offer was sincere, I know that had I accepted, she would have been here. God has blessed us with more than just therapists, and Hudson, I believe, has blessed them as well!

Hudson is doing well...he is still coughing, as he was before the H1N1, I have stopped counting the weeks though...I think he has had this cough for 8 weeks? Poor kid has the thickest mucous draining out of his mouth at times...I seriously can't believe he is not gagging and vomiting on this. With his pukey-history, I am stumped that he has not been throwing up...for months now! OK, I won't press my luck...but nice to have one less thing to deal with!
I want to mention the tamiflu...when we were given the script, I was told there was little known about side effects becasue it has just recently, with H1N1, been used. We were told of one, which was hallucinations. Didn't think much of it, in fact, I will admit I was thinking....if Hudson did hallucinate, would that be so bad? It's not like his reality is that great, right? Well, once we were home from the hospital, I noticed he would wake up screaming, not in a hurt way, more of a  "dream state" or maybe a hallucination? Well, I am thinking so, and apparently it wasn't  too fun, because it happened every night until he was off the tamiflu, and then it stopped...just like that! So, if any of you have to give tamiflu to your kids, just a heads up on the possible reaction!
As per our plan with Dr. S, I took Hudson off the Leucovorin. This is a med to treat behavioral issues associated with seizures, and Hudson was put on it when he was having unconsolable crying jaggs that made me feel helpless and wanting to rip my hair out...he would cry for hours, for no apparent reason, and nothing helped, and he would usually stop crying when a would have a huge cluster of seizures. I was told he could be taken off cold turkey, no weaning, and so I waited until we were compltetly over the flu. I am not sure if it was a coincidence, but he was off for only 2 days, which doesn't seems like enough time to really know, but for those 2 days he started crying jaggs in the evening, for no apparent reason. Not as severe as prior to geting on the med, but the 3rd day I started him back on the Leucovorin, and no inconsolable crying jaggs since! I was just hoping to get rid of one less med, but apparently he may need this one!

Seizures are still going strong...as seen in the last post...about 3-5 a day...sometimes he has what looks like the start of a tonic, but ends up looking like a startle (never holding him tight) but he just cries when this happens, as if he gets scared and is aware of what was about to happen. Poor kid, sometimes I think I could cope better if I didn't have to see him seize every day, it crushes so much hope, it robs us of our son, who is jailed by these beasts...why does any child have to endure seizures...just not right.
That's it for now...