9/15/09 Our Chris is home!

Chris has been home since Thursday and we could not be happier. Happier and busier. 

Tim and I picked up Chris last Thursday and we have been on the go ever since. He was welcomed home with a big banner made by the girls with Aunt Jenn and we could not skip the cardinal and gold balloons for USC. The girls came home from school shortly after and I am still not sure who was more excited, Chris, Caitlin, Regan or Napa (our yellow lab). One of our neighbors brought us the most delicious dinner to help us celebrate, thanks Charlotte.

 Chris was pretty tired after that so we got him set up in his hospital bed which for now is in our family room. I was so worried about him falling out of bed that I decided to sleep on the couch in the same room. Regan AND Napa decided they wanted to sleep near daddy too. So maybe not the most restful night but Chris said it was still better than any night in the hospital.

From that day on it has been a blur of visits from friends, family and neighbors. On Monday Chris began his out patient therapy at St. Jude's in Brea. While this is a bit of a drive from Huntington Beach (approx 30- 45 minutes away) this is the best in the area and where Chris wants to be. He will have therapy for about two hours, three times a week. This will keep us all on the go, now that school, Daisy's, soccer, art and gymnastics are all in full swing.

We are happy to have daddy home and cannot thank his buddies, Paul, Randy and DJ for creating and installing the coolest ramps I have ever seen (my SIL calls them sexy!). Our hallway is narrow between the family room and dinning room with the only access to the down stairs bathroom......so they created a draw bridge that Chris can raise and lower when he wants to go into the dinning room or bathroom. It is the coolest thing ever. It feels like everyday is getting easier and am so grateful to my family who have REALLY stepped up to be here for us to help with all aspects of our day to day living.

The paperwork roller coaster continues. We were told by one source that we were denied for medi-cal and told we were approved by another source all in the same day. We are still trying to sort that out. The bills continue to pile up, I have stopped opening them as it is too overwhelming to even grasp the amount they are requesting. It keeps me up at night.

I continue to be encouraged by Chris' physical abilities and I know that in therapy it will all be fine tuned. His goal is to walk on his birthday, one month from now. You know I will keep you all posted.

Love and gratitude,

Christy

9/6/09 Good news and more good news

Hello all,

I just came back from returning Chris to St. Jude's. We had a successful home visit!!!!!!! Tim (his brother) and I picked him up at 9:00.Of course his paperwork was not ready, nor was his meds for the day, so we had to wait around for an hour while the nurses scrambled to get all this. Poor guy had been awake at 5 am (as was I) ready to come home.

We had the best day, just being at home, all together. Tim and Jenn arrived from Washington D.C. on Saturday, so the four of us sat in the backyard reading the Sunday paper. The girls were content to stay out of the heat and played inside. At first I tried to make them play outside, so Chris could be near them but he said just hearing them in the background was enough to please him. After awhile the heat became too much for the rest of us, so we moved inside. I recorded the USC game because Chris didn't get that channel in the hospital. Yes, he already knew it was a blow out but was still entertaining to watch. Go Trojans!

If I described the rest of the day it would sound hum drum to anyone else but for us it was a pleasure to be under one roof, enjoying a lazy Sunday. We had permission to keep daddy until 8 PM. After Tim cooked his mom's baked ziti recipe, as requested by Chris, he looked exhausted. I had a feeling he was ready to go back and go to sleep. He said his mind didn't want to leave but his body did. As soon as we announced that, Caitlin had a meltdown, she wanted daddy to stay. I thought I had made it clear to her that this was just for the day. She made a huge production of crying and clinging to him. I am sure that did not make it any easier for Chris to go.

He will be back for good on Thursday and now I know we are all ready. We were able to get his wheelchair into the house and he fit through every door way necessary. We even got him up the huge step into the dinning room and kitchen. We ate dinner at the table, as a family. Ah, the simple pleasures.

On another good note, Chris had a second MRI done yesterday on his brain. I didn't share this with many because I just couldn't bare the thought, but they want to make sure he had not had stroke when he hit the water. I am just finding out now that both arteries were clogged when they went in for one of his neck surgeries (not sure if it was the first or second). They were suspicious that this was the reason that his left side is not moving yet. I only learned of this yesterday morning and have been sick to my stomach ever since. We just happened to run into his Dr. this morning when we were checking out and she looked at the reports super quick to let us know, all is well, no stroke. Hopefully that just means it is a matter of time before the left side moves.

I am off to dream of Chris walking. Good night to you.

Love and gratitude,

Christy

9/3/09 Not so cheery today

I am finding that I don't want to write if I don't have something positive to say. I am just that kind of person, normally the glass half full kind of gal.

This week has been difficult. I have been drowning in the social services red tape. I keep thinking I am done and then I get a new form or question. I honestly don't think my patient advocate knows what she is doing, but what can you do when the these people are assigned to you. If I could afford a lawyer to do this paperwork for me, I would probably be well off enough to not apply for all this stuff.

Chris has been nauseated for the last three weeks but it has been really bad for the last few days. Therefore, he does not want to eat, therefore he is very weak. He has already lost 22 pounds over the last two months. Tuesday the therapists ran some tested the strength on his left and right leg. The right leg (the one that moves) has gotten stronger, yeah! The left leg (which hasn't moved) has some how gotten weaker and the Dr.'s are stumped as to why. This morning they decided to take some blood and run some tests. They are doing an MRI at 4:00. I am feeling guilty for not being at the hospital. The girls have been struggling for a couple of days, school started and this morning Regan called me a jerk. She then burst into tears and said she didn't know what the word meant.  (and yes, she got a BIG time out for that one.) It definitely has been a challenging week.

OK, in the middle of typing this Chris called and cheered me up, AGAIN. We really do help each other and I think we make a great team.

Caitlin is off to art class, so I must log off now. Sorry for the not so cheery entry today, Hopefully tomorrow will be filled with better news.