WOO HOO A full nights rest

Well it's been exactly a week since we cut Chris off from all meds and last night was the first full night of rest that all of us have gotten since the hallucinations started. The hallucinations scaled down to night terrors by Saturday night then last night nothing at all. I can't tell you how good that felt (for Chris and his mom and myself).

One of the therapists at St. Jude's showed me how to calm Chris down at night called "healing touch". It is the most simple thing but I just lay my hands on Chris, starting at his feet, hold for two minutes and then move up the body. By the time I reach his shoulders he is asleep. That and the ambien give him a good nights rest. At last something I can do to help him feel better, an easy, wonderful way.

Chris continues to get frustrated with his progress, he wants to be walking yesterday. ( I can't blame him). It is so reassuring when we have a visitor who hasn't seen him in awhile come over and say "hey you weren't doing that last time I saw you". Today as we drove in the car he was able to clasp his hands together easily and he commented that last week he struggled to do it by himself. So every week, every day, baby steps are happening.

Last Thursday my meeting with the lawyer did not go as well as I thought. I assumed (silly me) that I would go in, fill some paperwork out, re-apply for MediCal and be done with this part of the nightmare. Ah but no, the lawyer proceeds to tell me that even if we re-apply for MediCal, it won't be retro active because we were denied the first time. Meaning, no coverage for the accident. I was devastated, cried for the rest of the day. I am going to get on my soap box for a moment. How can a person live here their whole life, pay taxes, contribute to society but be condemned when they need help. But if I were to have arrived here from another country they would give me MediCal. How is this right? I tried to buy insurance and they wouldn't sell it to Chris because of a pre-existing condition. Where is the justice? So this part of our journey is still to be ironed out.

On a happier note, the girls are really excited about Halloween. Regan wants to decorate the house more and more. It's not spooky enough she says. Caitlin is going to be a USC cheerleader, surprise, surprise, it is SO her. Regan is going to be a lamp, yes, thats right, a lamp. I love her four year old mind. Thanks to Aunt Jenn for creating her costume, light bulb and all.

My love and gratitude to you all,

Christy

More downs than ups this week

For the last two weeks Chris has really not been himself. He is uncomfortable most of the time. Then last Saturday, he started having hallucinations at night (every night since). It is very frightening to hear him scream out that something is on him or that he is trapped in a box. It is a reaction to some of the meds he is on. There is some discrepancy as to which med it causing this, just depends which Dr.  you talk to. He also has insomnia, so during the day he is exhausted.         ( Which means most of the time, he is pretty cranky)

Due to these issues, we are taking Chris off of all meds and see what happens within the next 24-48 hours. If there is no improvement, I am very sad to say he will need to return to the hospital. Chris is adamant about not going back and it would break my heart to tell the girls that daddy has to go back but if that is what it takes to get him feeling better than that is what we are going to have to do.

I am feeling very much like a single mom these days and I don't like it. My hats off to any woman who is a single mom. Although the girls have been pretty resilient it is still hard for them to understand why daddy isn't quite himself.  I am getting some great tips from a child psychologist and attempting to maintain a "normal" life style for them.

I am off to meet with the lawyer tomorrow to re-apply for MediCal. Hopefully this will be easier the second time around and with someone who does this for a living. If this doesn't work, I honestly don't know what we will do.

I am off to read Fancy Nancy to two little girls who do not want to go to bed yet.

Love and gratitude,

Christy

The Birthday Boy Walks

I know this is a long over due blog. I thought I would have more time to write once Chris came home from the hospital (less driving) but I am actually on the road more between dropping off/picking up both girls from school and Chris at therapy three times a week.

SO, the good news is CHRIS DID WALK!!!!!!! I will try to get a picture posted. The staff at St Jude's re-hab knew it was Chris' goal to walk on his birthday, so they put braces on his legs, hoisted him up and he pulled himself along two parallel bars (with someone standing behind him). I was not there to witness it (Regan's school had Muffins with Mom morning) but both Chris' parents were there to see it all happen. Don (FIL) called to tell me and we were all bawling like babies. I know this was a significant morning for Chris, as his progression has slowed down a bit, this really gave him hope for the future.

The nurses warned that the honeymoon would end, once the novelty of being home and starting out patient therapy started. I think we have hit that point. Chris is uncomfortable in his rental wheelchair because it is not made custom to him (which normally wheelchairs are custom made). Once the custom chair is ordered, it will still take another 3 months for the chair to arrive. St Jude's will not order a chair until we have insurance and thus far we have not been approved for MediCal. This process is so frustrating!!!!!! We have decided to hire a lawyer to do our reapplication because we are loosing precious time to get MediCal, the bills are stacking up and the phone is starting to ring from those trying to collect from us. It is enough just trying to keep up with the day to day needs of Chris and the girls but to add the amount of chasing around social workers, medical bills and Dr,'s it's overhwhelming. I am tempted to just buy Chris a chair (they start at $5,000) and try to get reimbursed once MediCal eventually (hopefully) goes through. I am researching to see if they would reimburse us or if it is better to wait.

I don't mean to be Debbie Downer this morning but these are the realities that we are facing right now.

I would like to once again thank our wonderful neighbors who continue to cook meals for us, they are such a blessing. The support from our friends and family ( and our faith in God) are really getting us through this. The visits, the cards, every little thing is so special to us. I look forward to the day when I can return all this love and kindness. I cherish the day I can be the giver instead of the receiver.

My love and gratitude to you all,

Christy