Checking In

No, I haven't fallen off the face of the earth . . . or off my spinning wheel . . . YET.

I was looking for a picture of a hamster wheel to put on the blog to depict how life feels these days when I came across the above picture. (too freaking funny!) While I'm desperately trying to find a way to get off the frenzied spinning wheel of life and slow down for a short rest, I think I'd prefer a softer landing :)

Life continues to be insanely busy and challenging. I was reminded this week that I am the parent of two children with special needs, not just one. Hilary has been a bit neglected the last ten years and it's time to move her to the front of the line and help her transition from the social isolation of being a deaf teenager in a hearing high school to finding her place as a deaf adult in a hearing world.

Ahhhhhh . . . this parenting thing just never seems to get easier.

The search for a new ENT is on hold for now. Jack's pediatrician started him on a stronger antibiotic which seems to have cleared up the ears. (it's also cleared out the GI tract, if you know what I mean.) Now we just hold our breath and hope they stay clear. I really, really don't want this to escalate to the point of having to actually deal with the ENT (or lack thereof) issue.

This weekend looks to be busy, especially for Eric. He's in another chess tournament that runs both Saturday and Sunday (the last one for this school year) and he also has soccer assessments on Sunday. Mark and I are actually going out sans kids on Saturday night with my sisters and their husbands. (can't remember the last time Mark and I went out together). The only unfortunate part about the weekend is that when it's over, I'll be one year closer to qualifying for AARP.

Finally, I can't close out the week without sharing at least one Eric funny.

Eric has been suffering with a terrible cough the last week and a half and he was complaining of a sore throat earlier this week (and, NO, it's not the swine flu!!) I told him his throat was probably sore from all the drainage from his sinuses. In short order he told me I was wrong. According to him, his throat is sore because. . .

"I have bumps on my uvula, Mom".

Oh, you think so?! (and no, he doesn't have bumps on his uvula either ... I checked!)

And, here are a few pictures of my little comedian from a project he had to do for school. Oh, how I wish they could stay babies forever.

Have a grand weekend, y'all!

New Day

The weekend is over. It's a new day, a new week and, hopefully ... a new attitude. It's late and I need to get to bed, but wanted to bump my last (not so happy) post. I'll post an update soon.

Here's something to help start out the new week with a smile

At the End of the Day

At the end of the day, I close my eyes and try to sleep. There's no escaping the harsh reality that I have a child in the other room who can't move a muscle and who relies on a machine to breathe for him 24/7. Because of his disease, time offers no hope for improvement - the status quo is as good as it gets.

The end of the day is tough my friends . . . always.

Fridays are particularly tough.

In Search of an ENT

Problem #1: Jack doesn't swallow. Jack pools mega amounts of secretions in the back of his throat (despite constant oral suctioning).

Result: backwash (for lack of a better word) into eustachian tubes resulting in chronic drainage of yucky goop out the ears. (one ear has a tube, the other ear has a permanent hole.)

Resolution: deep suctioning of ears to get out goop (been on antibiotics for weeks with no improvement).

Lead Character: Otolaryngologist (aka ENT).

Problem #2: Unable to find local ENT that I can tolerate. First ENT never once talked to Jack like he was a human being. Second ENT (who I really thought would work out) told me "I can't be the doctor you need me to be given the nature of my practice" (his exact words ... as if his practice is different from anyone else's practice. Apparently, the parents of his other patients don't care if he takes a week and multiple calls before they get a call back or don't mind waiting two months for a new trach template to be sent to their DME). Third ENT has a wait time of no less than one hour every single appointment (and he sees both kids and adults, which I don't like).

Potential Solution #1: Suction out his ears myself with my very own suction machine. (my pediatrician didn't think that was a good idea).

Potential Solution #2: drive 1500 miles to St. Louis to see the ENT that I like and who treats Jack and me with respect and compassion. (not that urgent or life threatening of a problem to justify the trip -- although, I'm tempted.)

Potential Solution #3: find local ENT number four. (I have my feelers out, but it's not looking good so far.)

Problem #3: I'm damn hard to please.

Potential Solution: Deal with it!

Words to Live By

I heard these words in a song on the radio this morning ...

God is great, beer is good, people are crazy.

That pretty much sums it up, don't you think?




Well, at least it made ME laugh!

New Puppy

NOT ME ... my sister got a new puppy. These pictures are posted primarily for my niece, Shannon, who attends college in Massachusetts - she wanted to see pictures of her new puppy!

Introducing ..... Sophie

my niece, Bridget - home for a few days from Rutgers

Mary playing with Sophie

Hanging out in my sister's backyard - it was a beautiful evening. The days are starting to get warm and it will be 100 degrees before we know it. (notice the broken screen door - that would be due to Eric plowing through it at full speed ahead ... apparently, he didn't see that the screen was closed. Sorry Maureen :(

Jack sees his pulmonologist on Thursday for a "just because" appointment. There is no reason to see the guy, but we have to check in at least twice a year because it's the only way I can get refills on Jack's maintenance and PRN meds. So we'll go, we'll chat and I'll get a handful of prescriptions and . . . life will continue to be good.

Have a GOOD week y'all!

Yikes

I've got this nice, new fancy blog and I have absolutely nothing to blog about!

I started this blog almost three years ago for the sole purpose of keeping family and friends updated on Jack's spinal fusion surgery. I kept it going because I had so many feelings and thoughts to share about this journey Jack and I are on and this blog gave me (and continues to give me) the opportunity to release these pent up feelings and thoughts and transform them into the written word. When I write one of my deeper blog thoughts, I don’t simply decide I need to write something and then sit down and pound it out in an hour. Typically, something will trigger certain feelings and thoughts that essentially run through my head continuously until I write them down. There are times after I go to bed when my brain will not shut down and I’ll get up two and three times throughout the night just to write down a sentence or two until, eventually, I’ve got a cohesive thought worth sharing.

While I love reading comments, I don’t blog for the comments. I write this blog because over the years so many people have shared with me that I write for them - them being those parents who “live the life”. There are also many people who don’t live the life who read this blog. For them, I write to share a glimpse into a life that is so demanding, so difficult and yet so rewarding in many ways.

(Okay, so I also enjoy sharing my silly Eric stories and pictures of all my awesome kids.)

I write this blog for the amazing friends I’ve met through it - some of whom I’ve met in person, some of whom I have not (yet). I know there are a lot of people, including my own family, who don’t understand what the appeal is to cyber-interacting with people you don’t know and haven’t met. The best way I can explain it is "isolation”. Generally, people can find others who share their common interests within their reach. Whether it be through work, church, their kid’s school or extra-curricular activities or through community involvement. However, parents of chronically ill/medically fragile children live a very isolated life. We are isolated physically, socially and emotionally. For the most part, we can’t walk outside our front doors and find other parents in our neighborhoods who share our unique life – parents who deal with teams of doctors, life supporting equipment, insurance companies, DMEs, IEPs, and a plethora of therapists on a regular basis. Moreover, we don’t feel comfortable sharing our lives and our struggles with typical parents because, regardless of how it’s perceived by them, we feel like whiners and complainers when talking with people who really have no idea what our life entails. The Internet opens the doors of isolation and facilitates friendships with people who share a common bond that we can’t find within arms reach.

I guess the point of this post is to say that, as I sit here today, I’ve got no pent up thoughts floating around my little brain waiting to be written and nothing noteworthy going on in our lives worth sharing. Yet, I will continue to blog for those who come here for the camaraderie, for those who come here for the laughs (aka Eric stories), for those who come here simply to see how we are doing, for those I know only through cyberspace, for those I know personally, for those I don’t know, and for those I have yet to meet.

Thank you all.

Happy Easter Part II

We had a great Easter day and enjoyed spending time with family. We watched old videos (as in VHS ... now that's OLD) of all the kids when they were little (my kids and their cousins). The "kids" enjoyed seeing themselves as babies/toddlers, we parents just felt old and sad at how quickly they all grew up!

Sharing some pictures from our day . . .

Mary being silly with strawberries

Cousins playing Apples to Apples in Jack's room

Happy Jack

Goofy Eric

Closing out the day watching a movie together (I realize I have a lot of the same pictures of these two hanging out in bed together. I just appreciate the fact that Eric will hang out with his brother and I want to capture the moment as often as I can).

I'll leave you with an Eric funny. As I was giving him a bath this morning, he commented in an exasperated tone: "I can't believe you are dunking me in my own filth"


(this from a kid who refuses to take a shower)

Happy Easter

Have a wonderful Easter weekend everyone!

Blog Design

How do you like the new blog design? I think it looks GREAT! Thanks Danielle.

HAPPY FRIDAY!

Neurotic

I don't think it's any secret that I'm a perfectionist. I'm never completely satisfied with any final product and I'm always analyzing and re-analyzing what I did, what I said, and what I wrote. I really wish I knew how to lighten up. I was discussing this with one of the people who launched the Cure CMD website in connection with the video I put together. She commented that she completely understands where I'm coming from because she too is "neurotic." I've always considered myself a perfectionist, not neurotic! However, she went on to define neurotic in the best of all definitions: driven, slightly manic and wanting to create positive change.

Well, when you put that positive spin on it, being neurotic doesn't sound like such a bad thing. So, I'm no longer a perfectionist .... I'm neurotic at its best!

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For those who asked and who aren't on FB, Eric didn't win a single game at the chess tournament. They pair the kids in the beginning based on age and experience. After each game the kids are re-paired based on if they won or lost the previous game. They played four rounds. Of course, Eric being a perfectionist neurotic like his mother, says he is never playing in another chess tournament again! But, of course .... he will.

Have a great day and stay tuned for a new blog look coming soon.

All I've Got

. . . are some pictures to share. I received these via email tonight from Eric's chess coach.

This, my friends, is what a chess tournament looks like
(just in case you were wondering)

This one pretty much sums it all up!

Have a great day!!

Brothers

Okay - here is a better comparison where I can now see how they look somewhat alike. Eric's face is fuller in this picture. I didn't want you all to think that I didn't believe you when you said they look alike. :)

Happy Sunday!

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(click on picture for larger view)

Several people commented that Jack and Eric are starting to look more alike. Above is a picture of both boys at 7 years old. What do you think? (I'm not really seeing it). Jack definitely has the better head of hair!

To answer Susan's question - no, Eric doesn't go to a private school. He is actually my first kid in public grade school (the girls went to Catholic grade school). Eric is in our school district's gifted program. It's a self-contained class - which I really like. So far, I've been happy with the program.

Hope you all have a great weekend. Eric participates in his first chess tournament tomorrow. Should be fun (and if you believe that, I've got some ocean-front property in Arizona I can sell you).

Cheers!

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 . . .