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!

***************

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!