So Much To Be Thankful For

As we close out the year, I have to say this has been Jack’s best year EVER! It’s the first year he hasn’t stepped foot (or wheelchair) inside a hospital. Part of the reason we avoided the hospital this year is because we chose not to return to St. Louis Children's Hospital for Jack’s annual checkups – which always involves multiple appointments at the hospital and at least one procedure in Same Day Surgery. Add to that the fact that Jack has been amazingly healthy and, the end result is a fantastic year for all of us. When Jack has a good year, we all have a good year.

This year I had the good fortune of spending a few days in Las Vegas with my fellow sorority sisters – women who “live the life” and who I count among my best friends. I also made my first trip to New Jersey/New York for my sister’s graduation from Columbia University. Lastly, we took our first family vacation together since before Eric was born and spent five wonderful days in San Diego. It was so refreshing to travel for fun this year instead of for doctors’ appointments. And what better way to finish the year than with Jack’s room makeover and the joy it has brought him. While the year was not completely without sadness due to my mom’s brain cancer diagnosis - my mom has thrown the statistics out the window and is still with us with no tumor recurrence. That is truly remarkable!

Last January, I shared with you the following:

So, I begin the New Year still somewhat lost, but with the resolve to let go of the need to always have a plan … to allow myself to simply enjoy the journey and not worry about the destination. I resolve to live life, not merely exist. I resolve to look at the view.

I end this year not lost, but refreshed and uplifted. I desperately needed a good year for Jack and I am so thankful to have received it. It’s amazing what good health and staying away from doctors will do for one’s mental well being. I didn’t merely get through this last year – I enjoyed it and I soaked in the view. I feel prepared to tackle whatever 2008 brings (not that I'm asking for any challenges).

I am thankful for so much this year – for Jack's good health, the opportunity to spend time with family and friends and the gift of some very special people who gave Jack the room of a lifetime. So ……… you know me and how much I love to create montages :-) If you can stand to watch another one, I share with you all that I have to be thankful for this last year:

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HAPPY NEW YEAR TO EACH AND EVERY ONE OF YOU AND THANK YOU FOR SHARING OUR JOURNEY AND SUPPORTING US ALONG THE WAY

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Your Dash

Today's Food for Thought:

Your Dash


I've posted this link before, but it's such a powerful message and a peaceful way to spend a reflective minute and a half.

Christmas "Fun"

We had a very nice Christmas and hope you did too. Christmas Eve didn't go as planned, however, because Jack's ventilator decided to stop working just as Mark was getting ready to bring him to my sister's house. The other kids and I went to Christmas Eve Mass and the plan was that Mark would meet us at my sister's house for dinner. Mark called me because the vent wasn't working right -- it wouldn't deliver any breaths when it was hooked up to Jack and it wouldn't turn off at all. Mark put Jack back on his other vent and then called Apria Healthcare and told them to bring out a replacement vent. Well, for my friends who also have to deal with Apria on a regular basis, does it not surprise you that Apria tried to get away with telling us they would bring a replacement vent the day after Christmas. Wrong! The RT told Mark "you do have one working ventilator sir". HELLO, we have a back-up vent for this very reason. We asked him what we were supposed to do if our back-up vent went out and we then had no back-up? We stressed the fact that we pay for two vents for a reason and he'd best get us a new vent now. We then got a call telling us that they didn't have any ventilators in their warehouse. Okay, so the only company that provides the entire Phoenix area with ventilators has NO back-ups in their warehouse? Mark's exact words to the guy were "that's B.S.!" Supposedly, they had a vent in another office, clear across town and he didn't have a key to get in the office. Let me get this straight ... the RT who is on call has no access to the only facility that allegedly has the only back-up vent in the entire valley. Are you believing any of this? Me neither. After multiple phone calls and our refusal to budge on the issue (and me already mentally composing my letter to the newspaper, the Department of Health, and every other conceivable person I could think of) ... the guy finally agreed to bring us out a back-up vent. (I'm not sure how one magically appeared.) Needless to say, he didn't have much of a Christmas spirit when he arrived at our house at 11pm on Christmas Eve! The really scary part is that it took over an hour for someone to return our phone call after reporting that we had a malfunctioning ventilator. If we were strictly Medicaid and didn't have private insurance, we wouldn't even get a back-up vent, so we would have been bagging Jack for over an hour before we even got a phone call and who knows for how long before they would have gotten us another vent. Apparently, Apria doesn't understand that a ventilator is LIFE SUPPORT and requires immediate action. Anyway, we survived our Christmas Eve crisis and everything worked out in the end, but Mark and Jack missed out on spending Christmas Eve with family.

Thankfully, Christmas Day was relaxing, fun and uneventful. Here are some pics:

Jack and his cousins and sister hanging out at the park after Christmas dinner

The cousins playing a little basketball


Christmas Eve -- hanging out in Jack's room wrapping all the gifts (and waiting for the Apria guy)

Eric leaving his Aunt Joan's house -- so happy about the size of his gift

Christmas Blessings

The light of the Christmas star to you
The warmth of home and hearth to you
The cheer and good will of friends to you
The hope of a childlike heart to you
The joy of a thousand angels to you
The love of the Son and God's peace to you.

An Irish Christmas Blessing

Wishing you all a very Merry Christmas!

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A funny version of the 12 days of Christmas

My little nerd

Eric discovered a new "toy" this weekend ... a calculator. He gets so excited when he adds two numbers together and gets an answer. He's been adding numbers all day. He was cracking me up, so I got my camera and took a short video clip of my little nerd:

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And here is what he thought about me sharing the video:

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(How can I NOT post that ... it's too cute!)

It's been a quiet weekend and I've been stuck at home for most of it. Mark is studying for his Series 7 license. He has to take the test on the 31st, so he's at work all the time and that leaves me stuck at home. I still have Christmas shopping to do and I'm running out of time! Kristi is coming this afternoon and staying until I get all my shopping done. Hopefully, I'll be done in a few hours. My brother and his four kids are in town from Columbus, Ohio. No one else is coming into town, so we don't have quite the crowd we had last year, which is a bummer because it was fun to have everyone together.

Good news for my mom ... she had her 2nd post radiation MRI (~ 6 months post surgery) and she is still "clean" (no tumor growth). This is really remarkable given the type of tumor my mom has. She is definitely defying the odds! We can now relax for another two months.

Hope you are all having a quiet and restful Sunday.

The List

Despite the fact that I said no lists this year, I was presented with Eric's list last night. Anyone know where I can find a "spider costume that lets me climb walls"? And, what about a "toy house that is a copy of our house"? Where does he come up with this stuff! No doubt, he'll be disappointed come Christmas morning.

This week isn't turning out to be as low key at work as I had hoped, so it looks like I'll be part of the insanity at the malls this weekend. Deep breaths ....

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Speaking of Jack's inability to talk, I received Jack's "Augmentative and Alternative Communication Evaluation" in the mail today. This report is what we hope convinces the insurance company that it needs to approve and pay for the eye gaze system. We should get the pre-authorization (or denial) fairly quickly. I'm really not too worried that it will be denied based on prior experiences with insurance paying for aug-com equipment.

The report states, in part, that "Jack's greatest communication strengths are his ability to indicate his understanding of what is spoken to him by facial expressions and eye gaze. The most significant weaknesses are his inability to use speech to express his needs, interests and wants due to severe dysarthria and his inability to independently communicate using his Augmentative Communication Device."

I now have a word to describe Jack's inability to speak -- "Dysarthria" -- which is "a motor speech disorder caused by paralysis, weakness, or inability to coordinate the muscles of the mouth."

This supports what I've believed all along, that it's not that Jack doesn't have anything to say, it's just that he can't get his mouth to say it. His muscle weakness is so severe that it even affects the muscles of his mouth and face. Well, at least he can still smile :-)

Today we had our every two month meeting at the house with the representatives from the vent dependent program, the nursing agency and the Department of Developmental Disabilities. Of course, everyone was blown away by Jack's room. You just have to picture Jack laying in his bamboo hut bed with its leopard spotted sheets and he has this big ol' grin on his face -- thinking he's the king of the jungle! One of the women who was at our meeting today made the comment that Jack is the "happiest sick kid she knows." Isn't that the truth!

Well, it's late and I need to catch a few hours of sleep before I face another day of demands. Have a great day my friends and stay warm.

Ciao.

Enjoying the Season

In the spirit of enjoying the Season ... the kids decorated cookies today with their cousins and friend Sara. We are down to the last week and I've yet to get my Christmas shopping done. I just can't force myself to go near a mall on the weekend. Work should be relatively low key this week, as most my big deadlines have come and gone. The plan is to get out of the office earlier and do some evening shopping. The mall should be less hectic, yes?

I have to give a short commentary on the Newspaper article. I wish they had elaborated a little more on Jack's medical condition. No where does it mention that he is ventilator dependent, which is the main reason he receives all his therapy and schooling at home and why it is difficult to get him out and about much. People who have read the article (and who don't know Jack) have asked why Jack doesn't talk or go to school since, as far as most people know, the majority of children with MD are much higher functioning than Jack. However, Jack has a very rare form of MD called "Muscle-Eye-Brain" congenital muscular dystrophy and it not only severely affects his muscles - he also has defects of his eyes and brain. I really have no idea why Jack can't talk, it makes no sense to me. I suspect it's a processing problem. There is a lot about Jack's disease that I don't have the answers to, mainly because I haven't asked the questions. Jack's neurologist has always been very good at taking her cues from me. She's never told me more about Jack's condition than I've asked. In the beginning, I didn't ask because I didn't want to hear it. Now, I don't ask because it doesn't really matter.

Anyway .... I veered a little off topic there! One more thing on the article, I had to chuckle at the statement that Jack's therapists have told me that Jack's brain is functioning. I'm not sure where they got that from since it's the other way around. I usually have to remind the therapists that Jack understands, even if he can't talk. Regardless, the article really wasn't about Jack (I'm just neurotic about details), it was about Room for Joy and the wonderful work they do and from that perspective, the article was well written.

Have a great week and enjoy the sights and sounds of the Season ... and for all my Midwest/East Coast friends and family, that would include all that wonderful ice, snow, sleet, and mud! Gotta love living in the Valley of the Sun this time of the year :-)

Christmas Spirit

Eric came up to me last night when I was sitting at my computer and asked me if I had the Christmas Spirit. I asked him what he meant. He told me "the parents in Polar Express didn’t have the Christmas Spirit so they couldn’t hear the bell ringing."

If Eric had asked me that question a couple of weeks ago, my answer would have been different than it is today. I really love Christmas time. I love the sights, the sounds and the smells of Christmas. Yet, anymore, Christmas seems to be more work than fun. Granted, it probably has something to do with the fact that I’m the parent now, not the kid. But, I’m really tired of lists and “I wants” and the running around so that I can check things off the list. I just want my kids (and everyone else) to be happy about the Season, not the presents under the tree. So, yes … I’ve been a bit of a Scrooge the last few weeks and really not much in the Christmas Spirit. I certainly wasn’t hearing any bells ringing.

Then there was last weekend. A weekend together as a family, all of us, with no worries about what housework needed to be done (because we couldn’t go home) and no worries about work (because going into the office wasn’t an option) and no worries about how much money we were spending (because the weekend was paid for). Last weekend was all about enjoying the Season. And, enjoy we did! But, the grand finale … Jack’s new room, was the greatest gift of all. It was a gift from complete strangers who gave of their time, their talents and their hearts to make a difference in the life of a little boy. Room for Joy exemplifies the Christmas Spirit and, because of them, my Christmas Spirit has been renewed. In fact, I dare say that every time I walk into Jack’s room . . . I hear the ringing of a bell!

The Reveal

WOW! What a fun weekend with an amazing finale. Jack's new room is incredible and pictures cannot begin to do it justice. The "Reveal" was overwhelming to say the least. I can't tell you how many cameras were flashing when we walked into the house. I didn't even get a chance to properly thank the people who gave up their weekend and gave of their hearts to give Jack a room of a lifetime. The room has a surround sound system that plays the continuous sounds of birds and every so often a thunderstorm plays with the sounds of lightening, thunder and rain (just like the Rain Forest Cafe). There is also a water fountain and lights and the ceiling ... it's beautiful with tree branches, leaves and vines with birds and snakes hanging on the branches. It's just AMAZING! In addition to doing Jack's room, they found time to put up and decorate a 9 foot Noble Fir Christmas tree for our living room. My head is still spinning with the excitement of the evening and I'm sure I'm missing something. But, for now ... here is a montage showing the before room, our weekend activities and the finished room. Enjoy!

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THANK YOU ROOM FOR JOY!

Room for Joy Weekend

This weekend is THE weekend for Jack's room makeover by Room for Joy . We're excited, they're excited, everyone is excited!! We will be out of the house by 10am tomorrow (Friday) and we return at 4pm on Sunday for the reveal. We are being put up in a nice hotel and all our entertainment and meals have been arranged. We'll be busy with Zoo Lights, IMAX, Rain Forest Cafe, A Christmas Celebration and restaurant hopping. I really could get used to this!

There will be several newspapers covering the story, along with their camera men. Very cool! While I'm not one for the limelight ... this is going to be so awesome for Jack and both he and the wonderful Room for Joy organization deserve as much media attention as they can get. (I'll just hide in the background.)

Of course I'll have my camera with me documenting the entire weekend. Check back on Sunday (Monday for you East coast people) for the "reveal". Until then . . . have a happy weekend my friends and remember to enjoy the moment.