Presenting . . .

ERIC

The kids in Eric's class are giving presentations this week on an animal of their choice. For reasons known only to Eric, he chose the "poison dart frog". I was able to go watch him present today and get it on video. I thought he did really well, although he gets quiet towards the end, so he is hard to understand.

He looks so grown up!

and, would you believe that one of the kids in his class showed up with her dad and his computer and did a power point presentation. This is FIRST GRADE PEOPLE! A power point presentation in First Grade . . . ridiculous!

Status Quo

The status quo seems to be the norm around here. Not that I’m complaining … really. It doesn’t appear that the month of March “got” Jack. Do I dare say that we’ve made it through the entire Winter without nary a sniffle? In fact, we’ve not even had to bump Jack’s Pulmicort up to 2x per day, which we typically have to do during the Winter months. It was a “healthy” cold and flu season all the way around – the flu bug somehow managed to completely miss our house this year. Now, if I was the superstitious type, I’d expect the god of sickness to immediately swoop down and throw up all over my house just to show me that I’m not so lucky after all. But, I’m not the superstitious type, so I’m not too worried that I just jinxed myself.

The status quo of non-crisis is a good thing, no question. The only down side is that when your mind isn’t occupied with just trying to get through the crisis of the day, it has too much time to think. The last few weeks have been emotion packed for me. Between putting together the CMD video and recently being asked to talk with parents who were in the same decision-making situation I found myself in nearly 10 years ago, I’ve been doing a lot of thinking lately.

I’ve transported myself back to where I was this time ten years ago. March 7^th marked the day - ten years ago - that Jack officially became vent dependent. The last week in February he had been discharged on nasal CPAP following a three week hospital admission. It was this discharge that I had my first experience with nursing (the pig farmer, if you recall). He didn’t last too long at home and I remember the Saturday night we finally gave in and took him to the emergency room. I was adamant that he was not going to be admitted again. Unfortunately, the doctor took me to heart and never even got a blood gas on Jack that night. His sats were fine (he was on O2 via nasal cannula), so they sent us home with an antibiotic. Sunday morning, Jack was as white as a ghost and so, so worn out. We forced ourselves to take him back down to Children’s ER where someone had the sense to get a blood gas. When his CO2 came back at 120, things started happening … and fast. Jack was intubated March 7^th and from that day forward he has never been able to “fly” completely off the vent again. Jack wasn’t trached until May 19^th and I clearly remember the day I signed the consent form. I joked with Jack’s cardiothoracic surgeon that I finally “did it”. I think they scheduled the surgery within seconds of me signing, just in case I changed my mind. They tried to get us to agree to the trach months before, but I couldn’t force myself to do it. Jack was discharged on June 8^th. I don’t think I cried once during those three long months Jack was in PICU. I was too angry to cry. I was emotionless the day of Jack’s trach surgery. The surgery was at two in the afternoon and I was barely able to see him after he came out of surgery before I had to hurry off to Mary’s Kindergarten graduation. It was surreal as I sat there watching Mary sing and dance with her Kindergarten class while Jack was lying in a hospital bed breathing through a plastic tube stuck through a hole someone had just cut in his neck.

It seems like forever ago and yet it seems like just yesterday.

So, what was I saying about the status quo? Oh yeah … it’s a good thing. Except for the thinking part. I wish I could just.stop.thinking. You’d think (there I go thinking again) that you could get to the point where you just let it go once and for all and move forward. Ten years into this and I can’t seem to get there. It’s those darn triggers. They take you back at warp speed to where it all began. It never gets easier to go back there.

And on that note, I think it’s time to call it a night. If things go as planned tomorrow (actually, today), I hope to have something Eric related to share with you.

Thanks for checking in, thanks for caring.

Cure CMD Video

Edited to Add: the question I ask at the end of the video regarding why Jack can't talk, I don't really expect an answer to. I was just asked that if I could ask one thing of either the medical profession or scientists with regards to CMD what would it be. So, I just came up with the question I've wondered about for years. Susan, (Ainsley's mom) just shared with me information she's learned regarding how cerebellar anomalies may affect speech processing. The processing issue makes sense for Jack because he's not making a lot of progress on the eye-gaze system either. We've removed the physical barrier to communication by getting him the eye gaze system and he still has trouble "talking". I doubt Jack will ever communicate with me in the traditional sense. But, I can honestly say that I've never really felt like Jack and I aren't communicating. It's just a different kind of communication ... between souls.

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Here is a video I put together at the request of Cure CMD. It's a video that addresses specific questions they wanted answers to and is being shared primarily with physicians and scientists who work in the field of congenital muscular dystrophy. It's not a feel good video, it's just an "It Is What It Is" video.

Lessons Learned

I don't really have much to share or report, but I wanted to bump the post with Jack's not-so-pleasant-to-look-at x-ray. I thought I'd share a really neat article I recently read. It's written by a PICU Intensivist and is titled "Lessons learned in the life of a pediatric intensivist". We should all be so lucky to have physicians like this care for our kids (for those of us whose kids tend to spend more time around doctors than the "typical" kid). I'll admit that I'm a little weird because I like to read medical journals, website, articles, etc. This article was recently posted on the PedsCCM website (the same website where my "Dear Future Physician" letter is posted. I have connections -- the webmaster is one of Jack's former docs).

Here is a link to the article: Lessons Learned (it's short and a very easy read)

There are lessons in this article that can be applied to anyone's life, not just physicians. I especially like Lesson No. 5.

Jack is doing fine. He tolerated sitting in his chair the last two days. We are giving him Motrin at the start of the day, which seems to be helping. Just knowing he doesn't have a fracture takes the fear factor out of moving him.

Until next time, always remember that . . .

Life is a succession of moments. To live each one is to succeed.

Ortho Appointment

We saw the orthopaedic doctor, got an x-ray and found out that there is no fracture and no issue with the hardware in Jack's pelvic bone (see picture below to see the huge anchor screws in Jack's pelvis that scare the crap outta me). While it's good there is no obvious issue, it still leaves us with "why is he crying when we move him". The ortho thinks he may have some inflammation in his hip joint, called synovitis. I use the term "hip joint" loosely because the hip that hurts is completely dislocated. It's been dislocated for years, a consequence of Jack's disease. Because Jack won't ever walk, there is no need to fix the dislocated hip. The Rx is Motrin. If it's not better in a few months, we'll investigate further. Jack tolerated everything well, the only part he didn't particularly like was when the ortho twisted his hip (ouch!) So, we wait, watch, and give him Motrin.

It's always scary seeing Jack's x-rays. His hips/legs don't even look human they are so messed up. Bleh .... just another reminder of what his damn disease is doing to his body. Below is a picture of an x-ray taken after Jack's spinal fusion surgery. I've shown where his dislocated hip is (you can't really see anything, just a black space) and you can also see what I mean when I say his bones are the size of a pencil (see femur bone).




The kids are back to school tomorrow after a two week Spring Break. I enjoy their Spring Break as much as they do. Now, it's back to the morning madness and homework struggle with Eric. Oh well, I guess all good things must come to an end.

Thanks for checking in on Jack!

Light Show

Edited to note that all references to "yesterday" actually mean Wednesday. It was after midnight when I wrote this post, so I was living in Thursday when it was actually Friday :-)
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Mary gave me a hard time today because yesterday was her 16th birthday and I didn't post anything about it. My only kid who reads my blog and I don't write a birthday post for her. Sorry Mary! (I assumed posting the birthday party pictures would suffice - apparently not).

Hey everybody, yesterday was Mary's 16th Birthday!

Mary is a nervous wreck because she has to go out on the highway with a driving instructor for three hours tomorrow. She has two 3-hour on-the-road sessions and then she can get her driver's license. The instructors are former cops, so I'm sure they are a bit intimidating. I'll be so happy when she can drive because I won't have to rely on others to get her where she needs to be anymore. It's such a sense of freedom for both Mary and me.

Jack is still having issues with his hip or leg. So, we'll be keeping the Monday appointment with the ortho. He is fine as long as we aren't transferring him in and out of his chair. It's too bad because Mark's brother who lives in Alaska is coming into town for the weekend and now we won't be able to get out of the house, all of us together. Such is "the life".

I thought I'd share a short clip of the light show Jack and I watched from his bed tonight while listening to Pachelbel (with ocean sounds). Jack has sound activated lights mounted on his wall (amongst the tree branches). It's a very relaxing way to fall asleep. If you listen carefully, you can hear Jack expressing his delight with the light show.

Make photo slide shows at www.OneTrueMedia.com

Happy Friday Friends!

Titleless (because I can't think of one)

Well, I really liked both pictures and didn't want to have to pick just one - so, I decided to get both. (I'll pay the printing cost for one of them). I'll have one for home and one for my office. Thanks for your input, I agree that the black and white is most true to the original print, but the color print is so unique because it really is a painting of my kids and I think looks amazing.

Jack continues to do well, but we are worried about his leg and/or hip. On Sunday, when we moved him from his wheelchair back to his bed, he started crying. We never could figure out why. On Monday, Kristi called to tell me he cried pretty hard when she put him in the lift sling to move him to the bath chair. It's possible we are dealing with a broken bone somewhere. Jack's bones are like pencil lead - literally. Because we can't see any obvious swelling and because he only cries if we move him - we are keeping him in bed and we have an appointment with the ortho on Monday.

I'm working on another blog thought. It's intense and it's in my head waiting to be written based on some encounters and conversations I've had in the last few weeks. Stay tuned . . .

Happy St. Patrick's Day

May your blessings outnumber
The shamrocks that grow,
And may trouble avoid you
Wherever you go.
~Irish Blessing

And my favorite ~

Some may say the glass is half empty,
Some may say the glass if half full,
But the Irish will forever say
"Are you gonna drink that?"

Slainte!

The Painted Picture is Up

Doni has finished painting my picture. Go HERE to see it. Let me know which one you like best - the one in color or black and white.

Thanks again for all your votes!

Birthday Party Pics

I think it was a "Happy Birthday" all the way around!

Kind of Cool

It's a little known fact that Mark co-wrote a children's book called "Math Play" which was published back in 1997. It's not made the New York Times list of top sellers nor has it made us rich, but it is kind of cool to have a book published (I'm just guessing since I have never had a book published). Unexpectedly, Mark received a new and improved copy of his book from the publisher this week and much to our surprise, the book has been translated and published in CHINESE! How cool is that? Just think of all the royalties!

Original version
(circa 1997)

Chinese version (circa 2009)

On the home front, we are enjoying a lazy Saturday and gearing up for birthday parties tomorrow. We will be celebrating Eric and Mary's birthdays. It's always fun to get together with family and something I really missed during the years we lived in St. Louis.

Speaking of which, here are a few more pictures from our visit to St. Louis.

braving the cold to look for bugs with Peggy

Happy Saturday!

Happy Birthday Eric

Today is Eric's 7th Birthday! It's hard to believe. He was in tears last night because he doesn't want to leave St. Louis (reminds me of another one of my kids (Mary)). We've had a great time hanging out with Peg.

Here are some pictures of the birthday boy from our time in St. Louis.





It's time to pack up the computer and head to the airport. Have a great day!

My Picture Won

My picture got the most votes on the Blog Contest. THANK YOU all ... you rock!

STL Bound

Eric and I leave for St. Louis bright and early in the morning (which is only a few short hours from when I'm writing this). Eric seemed a little worried this evening when he asked if we were driving to St. Louis. I assured him we would be boarding a plane and arrive in 3 hours - not 30.

I'm looking forward to just hanging out with my wonderful friend Peg and not having an agenda. Although, it wouldn't seem right if I was in St. Louis and didn't spend some time at St. Louis Children's Hospital. So, I do have plans to have lunch with Jack's neurologist on Monday. Other than that, I plan to sleep, eat, drink and be spoiled by Peg.

Speaking of which, I'm not sure if I should be concerned that when I told my boss I was going to be off for a few days again, his comment was "and the drinking continues."

Well, as a matter of fact . . .

(btw, my boss is my age and he is Irish ... he speaks from experience.)

I'll have my camera and my computer with me and will update if I can.

Ciao and have a great week my friends.


P.S. what's wrong with this picture ... I'm packing coats!

Cure CMD

Posted at the request of Cure CMD

Cure CMD is a nonprofit 501 (c) 3 advocacy group launched in summer 2008 by 3 parents whose children have CMD. Cure CMD’s mission is to target research dollars to accelerate the fight towards finding therapies and one day a cure. Each donation to support Cure CMD’s efforts is tax deductible.

You can help support Cure CMD today by:

• Join Cure CMD on facebook as a cause. Get 10 friends to join you. We want to build a cause community of 5,000 by December.
• Place Cure CMD on your facebook page as a profile.
• Use Good Search to do internet searches. Go to www.goodsearch.com, choose Cure CMD in charity box. Each internet search gives Cure CMD a penny.
• Be a benefactor for the CMD Family conference in August, $10 donation through Cure CMD website (check or paypal).
• Go to www.curecmd.org to read our stories

Your support will allow Cure CMD to reach its 2009 goasl:

1. a CMD international patient registry
2. the first Cure CMD research grant for 50K
3. partial funding for first scientific CMD conference, “Therapeutic Targets in the CMDs”, Emory, July 2009
4. funding for CMD Family and Affected Person conference, August 2009, Children’s Hospital of Philadelphia. The conference focus is on advocacy, networking and scientific discoveries to may slow disease progression. This conference presents the first opportunity for many child and adults with CMD to meet someone else with the disease.

To help us fund the CMD Family and Affected Person conference:

1. Send us 2-3 vendors that you can contact for funding in your area. A vendor how-to packet has been put together to make this easy for you. Vendors have been very responsive as they are looking for cost effective ways to expand their market in down economy.
2. Contact friends and family. Be a benefactor ($10 with mention in conference brochure) or sponsor an individual at the conference ($100).

If you have questions or would like a benefactor form and/or vendor packet, contact Trish and Lucinda at info@curecmd.com

Thank you for your support,

The Cure CMD team

Need Your Vote

I've entered the above picture in a blog contest. If my picture gets the most votes, I will win an 11x14 painting of the picture which will be done by the blog author, Doni (who does amazing work with painting of pictures).

Please take a minute and vote for picture #1 in the comment section here:

Vote Here

The Blog author has to approve the comment for it to show up. She is not approving comments (votes) for first time commenters (which includes me) until Monday, when she announces the winner. So don't worry if you don't see your vote -- it is there.

Thank you SO much!

Random

I am in Facebook Hell (stop)

Send help (stop)


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(I stole borrowed this quote from another blogger who is apparently having the same problem I am.)

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I feel like I've been neglecting my blog because I've been spending too much time on Facebook. I'm wondering if there is a "Facebook Anonymous" group I can join.

Life continues to chug along without incident. I almost feel guilty because so many of my fellow bloggers and moms of medically fragile children are having the Winter from hell. Although, March tends to be the month that "gets" Jack, so we aren't out of the woods yet. If he's going to get sick, it will no doubt be when I'm out of town next week.

Please check back on Thursday, I will need your help with something. Stay tuned for more details and ...

as always, thank you so much for checking in on us.

I'm Back

Actually, I didn't go away. I spent the last four days with a group of girlfriends who flew into Phoenix from all over the country (and Canada) to spend a weekend together. It was fun, it was refreshing and it was too short. We did manage a trip to the house so everyone could see Jack.



Some other pictures from the weekend -

the pedicure

the morning hike

night out on the town -- limo and all

Next weekend, Eric and I leave for St. Louis to visit Peg. Too bad I have to squeeze in a week of work in between.

Have a great week everyone.