Bum-Day

Today, I got up early and did my 2 hour hike. Other than that, I've been a complete bum today and have done absolutely nothing productive. Kristi didn't work today, so there went my excuse for going into the office. I spent a good part of the day laying in Jack's bed napping while he and Eric watched Sponge Bob DVDs all day. It's now 10pm and I've got mountains of laundry calling my name. I did have a fun weekend spending time with my nieces, Bridget and Kelsey, who were visiting from New Jersey. Bridget attends Rutgers and Kelsey was out here looking at colleges for next year. If things go according to plan, their mom -- my sister, Maureen (and her husband), will be moving back home in a few short months. I'm so happy about that!

Here are some pictures of the girls I took this weekend.

Kelsey, Mary & Bridget

Eric has become a mini-Hilary and is spending all his spare time drawing. These kids clearly take after their father because I can't even draw a decent stick person. In these pictures, Eric is drawing caricatures from some Nintendo game-guide book. He is also really into drawing Sponge Bob and all his cohorts.

I don't think I have anything on the calendar this week, so I'm hoping for a quiet and uneventful week. Wishing you the same.

Ciao.

Just the Beginning

The video clips I took today during the set up and trying out of Jack's new communication system aren't too impressive. Keep in mind that there is a lot of work yet to be done on our part to get the system set up so that it is Jack friendly (i.e. programming pictures and commands that mean something to Jack) and a lot of work on Jack's part to figure out how to use the system. The biggest thing for Jack to learn is that he has to keep his eyes on the object long enough to activate it (set at 1.5 sec right now). It's an extremely complex system that offers more possibilities for communication than we can even imagine right now. It also has wireless internet capabilities which will really open up a whole new world of where we can go and what we can download. Jack can even send email with this system. Very cool!

I took the somewhat boring video clips, set them to some music and viola' -- here is a glimpse of a day in the life.

Make an on-line slide show at www.OneTrueMedia.com

(Note how excited our dog Rylie is about the whole thing :-)

Thanks so much for caring about my beautiful Jack!

Back to "Normal"

After a two week and one day Spring Break -- my kids are back in school today. It's back to our normal morning madness. It was nice to be able to sleep in a little longer the last few weeks, with Jack being sick. Eric reminded me this morning that he hates school (what he really hates is having to leave the morning cartoons he is watching). He told me that "kids who are homeschooled are so lucky". When I told him that I couldn't home school him because I have to work, he told me I could homeschool him at night. He's only six years old and he thinks he's ready for night classes!

On the Jack front, I dare say he is almost back to baseline. I never did hear if Jack's pulmonologist called in a new prescription for the antibiotic I spilled or if insurance is going to pay for it. When I called yesterday, the doctor hadn't returned the pharmacy's call regarding the need for a new script. Today, I never got around to checking into it. Que Sera, Sera . . .

AND FINALLY ............... Jack's eye gaze communication system will be delivered tomorrow. Amen! We are having a team meeting (OT, Speech, me) to all learn how the system works. I'm cautiously optimistic that this will open up a new world for Jack. Here is a link to a news story about a man who has ALS and who uses an eye gaze system. Eye Gaze Communication This person uses his eyes to spell out the words he wants to both speak and write but cannot due to his disease. Incidentally, our dear friend Peggy is one of the nurses who cares for this person (whose name also happens to be "Jack"). You can learn more about him at his website: www.extrahands.org. There is an interesting story behind the name Jack and its connection to Peggy that I will share someday.

I don't expect Jack to be spelling out words from the get go, but hopefully ... someday. There are a lot of features this system offers (including the ability to turn on the television remotely). We have lots to learn. I'll try and get some video tomorrow. Hopefully, Jack is feeling well enough to have a productive training session.

Stay tuned .........

Saturday Celebrations

Today we celebrated all the March birthdays in my family - which included Eric, Mary and my nephew, Steven. Everyone came over to our house for the party. Tomorrow, they all get to come over again for Easter dinner! We didn't combine the two events because there were people who could come today, but who can't come Easter Sunday. Besides, we like to party around here.

Jack is doing better. He's off oxygen, but I'm still suctioning a lot of blood - which is always worrisome. I'm hoping if he does have an infection, the Cipro will take care of it. It would be helpful, however, if I had enough Cipro to complete the entire 10 day course. Stupid me knocked over the bottle this morning and lost several doses all over the bathroom countertop. I called the pharmacy and they said that Jack's doctor has to call in a refill and, even then, there is a possibility that insurance won't cover it. I'm not going to pay out of pocket for the stuff because it's expensive. We'll see what happens on Monday. Still swimming .........

This morning I caught Mary and Eric entertaining Jack as they danced to the music on the radio.

Make video montages at www.OneTrueMedia.com

More pics from today:

The girls watching a "chick flick" in Jack's room

The birthday kids

After everyone left tonight, I sat down on the stairs to rest for a minute and Eric joined me. I told him I was so happy that he was sitting with me, especially since he doesn't like me. He told me "I DO like you ... when I tell you I don't like you, I'm usually just kidding". Well, it's good to know that most the time he's just kidding!

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HAVE A HAPPY EASTER EVERYONE!

Just Keep Swimming

Jack is not much better, but he's not worse either. So, we'll just keep swimming . . . with a smile on our face.


(a lame update I know, but I'm tired of hearing myself whine!)

Meandering Update

I noticed that my last post didn’t make a whole lot of sense when I talked about what happed that day and then proceeded to tell you what was coming up in the day ahead. Problem was that I was typing the post after midnight, so I was talking about two different days as if they were the same day. Not that anyone even noticed ...

I took Jack in to his pulmonologist today and it was essentially a waste of time. Kristi and I both agreed that we gained no useful information from the appointment. He gave us a prescription for Cipro - why, I don’t know because he didn’t really say. We couldn’t find a pharmacy that had Cipro on the shelf, so it’s on order and won’t be ready until tomorrow. The pulmonologist also suggested that since Jack had a flare up of pseudomonas - almost two years ago - we could give him TOBI aerosols if we wanted. That is, if the TOBI we have left from two years ago hasn’t expired. He didn’t really make a convincing argument for putting Jack back on TOBI, so I’m passing on that suggestion for now. I generally like this doctor, but the appointment today was very disappointing. I didn’t get the feeling he was really focused on Jack at all. I guess that’s the consequence of not seeing doctors on a regular basis – they just don’t seem to connect with Jack. I really miss our St. Louis docs at times like this.

I called the RT manager at Apria regarding last weekend. I suggested that if they are going to require a new prescription every year for certain equipment, then they need to put in place a policy that requires them to call us when our year is up so that we can get the prescription on file before a need to have situation arises. She told me that the RT was wrong for not getting us the SVN machine because Jack was a vent kid and they would have been fine with getting the prescription on Monday. She said she’d talk with the RT. The guy needs more than a talking to, he needs an attitude adjustment (and a little compassion wouldn’t hurt either).

I was thinking about how little it takes to suck the life out of me anymore. It really shouldn’t be that big of a deal when Jack gets sick. Kids get sick and parents just deal with it. Yet, I’m just so spent, on so many levels. I guess my “normal” takes more out of me on a daily basis than I’d like to acknowledge. I think it’s fair to say that medically fragile/chronically ill kids make for emotionally fragile and chronically tired parents. Oh well . . . que sera, sera. Not much we can do about it except “just do it”.

Today we had fun visiting with one of Jack’s former nurses from St. Louis. Holly was Jack’s primary nurse for the first two plus years of his life. Holly, her husband Scott and their two boys are vacationing in Phoenix this week and are staying in a house just down the street from us. We love Holly and her family and are so lucky to count them among the many new friends we gained from having Jack in our life.

Holly and Jack circa 1999

Holly and Jack circa 2008

Last, but not least, today is Mary’s 15^th birthday. She is now counting down the months until she can get her driver’s permit. Mary is my easy going, happy-go-lucky and social kid. When Mary was little, we called her "Tigger" because she never walked anywhere, she bounced every where she went! Today, she spent the day plopped on the couch playing her new game -- Guitar Hero.

Happy Birthday Mary!

Have a great rest of the week my friends.

Better Day

Jack had a better day today. He's still requiring O2 and I'm suctioning lots of bloody secretions (sorry if that is tmi for some of you), but he didn't seem as miserable today. I do think I narrowed his area of pain down to his left shoulder/arm. We'll continue to watch his reaction to movement over the next week and, if he still acts like it hurts, we may be off to the orthopod for an x-ray. I think I'll at least call his pulmonologist today to make sure he doesn't have any concerns about the bloody secretions. I'd much rather deal with a physician's office during the week than an ER on the weekend.

I had the unpleasant experience of dealing with my DME (durable medical equipment) company again today. Jack's nebulizer machine (called an "SVN" machine here) has been used so much lately that it died on us today. I called the respiratory therapist (“RT”) on call and told him I needed a new SVN machine today. Any guess as to where this is going? The first thing he wanted to know was when we got the machine. I told him I didn't have a clue. He then asked if it was over a year ago? Not knowing the consequences of my answer, I answered truthfully and told him "yes". Big mistake. Since it was over a year, he told me I needed a new prescription for the SVN machine before he could bring it out, which he said I could do tomorrow. I told him that was BS, and that I would get him a prescription for the machine today and he had better be prepared to get me a new machine TODAY! If I had thought of it at the time, I would have asked him why they send me nebulizer kits for the SVN machine every month if I don't have a current prescription. I can guarantee you that they don't have a current prescription for half the supplies/equipment Jack gets or rents every month. The fact is, this guy was trying to get out of having to bring me a machine on a Sunday. Fortunately, the on-call triage nurse for Jack's pediatrician's office was extremely helpful in making phone calls to the on-call pediatrician and was able to get a prescription faxed to the DME today. I can also guarantee you that the idiot wasn't in the office to even see the faxed prescription that he claimed he needed to get me a new machine. This guy would rather have had Jack end up in the ER because I couldn't give him breathing treatments -- which are no doubt what is keeping him out of the hospital -- than do his job and take care of his customers. This kind of stuff just infuriates me. Several years ago, at my request and after meeting with me, one of our State representatives introduced a Bill that would require DME companies to be licensed. Somewhere in the process another piece of legislation got attached to my Bill and it never made it to the full vote of the legislature. I've not had the time to follow-up and try and get it back on the table for consideration, but I really think it's something that needs to be done. We have absolutely no recourse against the type of lousy and potentially life-threatening customer "service" I received today from a company that is in the business of providing life support equipment. If they had to be licensed and ran the risk of losing their license - and ability to do business - they just might think twice before they tell me they'll take care of it tomorrow. If only there were ten more hours in the day, I could add this to my “to do” list.

And, if that wasn't enough, I realized that Jack's prescription for Tamiflu was almost gone and there was no way it was going to the last the entire 5 days that the prescription was written for. In reading the bottle, I saw that they only gave us half the dose. I called the pharmacy and the person who answered the phone told me that maybe it had something to do with insurance. Seems to me that if insurance only allowed half the dose, we should have at least been told when we picked up the prescription. When Mark picked up the prescription, nothing was said. The pharmacist ran the prescription through again and, what-do-you-know, it went through for the full dosage. When I picked up the other half of the prescription, I reminded the pharmacist that it was a serious violation to not fill a prescription as written. He again told me that maybe it had something to do with insurance the first time it was filled. Nevertheless, if that was the case (which it clearly was not), they then had an obligation to at least tell us we were not getting the full prescription and not just send us on our merry ignorant way.

On a happier note …..

Happy St. Paddy's day to y'all. Mary has to be up and on the road by 4am to start her day of dancing. She starts the day dancing at two early morning venues, both of which will be aired on our local television stations. After that, she has two or three other performances and then finishes with a private event tonight. She will have been dancing for almost 16 hours before the day is over. She should be real pleasant when she gets home tonight, eh?

May green be the grass you walk on,
May blue be the skies above you,
May pure be the joys that surround you,
May true be the hearts that love you.

**********

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

**********

Sometimes This Is Just So Difficult

It’s so difficult …

>To look into your child’s tear-filled eyes and pain-filled face as he silently pleads with you to make it all better and you don’t know what’s wrong. You know his bones are the size of pencil lead and it seems like when you move him a certain way, he cries. Yet, he also struggles to breathe because his lungs are filled with secretions. Is it his bones, the hardware in his back, or the pain of breathing that makes him cry? You just don’t know.

>The aching back you have after an entire day of leaning over your child’s bed suctioning nonstop, changing diapers, adjusting his position, putting DAFOs on, taking DAFOs off, giving pedialyte and one medication or another every few hours, giving breathing treatments, the Vest, the cough assist, stroking his head, holding his hand, and just trying to make him comfortable.

>When your 6 year old tells you he doesn't like you because the only person you pay attention to is Jack when he doesn’t understand that if you don’t pay attention to Jack, he will end up in the hospital or worse.

>Deciding at what point the vent settings are too high, the supplemental oxygen is too high and your inability to make Jack comfortable requires that you seek medical help. Knowing that if you decide to walk into an ER with Jack you’ll have to fight to keep him from being admitted. Knowing that you hate hospitals and the way the people in them treat you. Knowing that you have to be careful not to jeopardize Jack’s life because of how you feel about hospitals and medical professionals.

>Being so tired that you can hardly keep your eyes open, but knowing as soon as you start to drift off, the pulse ox will alarm and Jack will need suctioning, or it will be time for another breathing treatment. Knowing that the only day of the week you have to catch a few extra hours of sleep is Saturday and that opportunity is now lost and you will feel the consequences dearly come the middle of the week when you can barely drag yourself out of bed in the morning.

>Just wanting to crawl in a hole and cry because you are so tired, so sad, so scared and just so damn sick of living this way of life.

Sometimes this is just so difficult ………

Sick Again

Jack is sick again. Not sure how he keeps getting sick when no one else in the house is sick and he doesn't go to school. This time I'm pretty sure it's the flu. He was absolutely miserable Tuesday and Wednesday nights and neither one of us has had much sleep. He's requiring oxygen, which he hasn't needed since his surgery in 2006. Last night, as I was looking at his pained faced, the light went on (in my feeble brain) and I remembered that when we saw Jack's pulmonologist last November, he gave me a prescription for Tamiflu just in case we needed it. I quick found the script, gave it to Mark and he was off and running to find a pharmacy that could fill it (took three tries to find one). Jack seems to be feeling better tonight, although he is still on O2. Hopefully, the Tamiflu will shorten the course of whatever is going on.

Earlier this week, I was reading through the stack of EOBs (Explanation of Benefits) we get every week from the insurance company and I noticed that there were all these charges to the facility where Jack had the radiation treatments to his salivary glands. The charges were for dates we weren't even there. The real kicker was a $14,000 charge for the period of 1/8/08 through 2/8/08. The only treatment Jack had in 2008 was the one time radiation treatment on 1/9/08. I called the hospital's billing department and, naturally, the person I spoke with acted like she didn't know anything or couldn't tell me anything. All she wanted to know was whether I had to pay something due to these alleged incorrect billings. I told her "no" I did not have to pay anything, but that was not the issue. Billing for services that were not provided is fraud! She agreed to send me detailed bills so I could see what they are billing us for. I then called the insurance company and asked where I send a letter to dispute the charges. She too couldn't understand what the big deal was since I wasn't having to come out of pocket for any of these charges. Why is it that when the insurance company wrongfully denies payment for something they should pay, the person at the other end of the phone cops an attitude and treats you like you are an idiot, yet, paying for charges that are bogus seems to get no reaction out of them? I did find out that the $14,000 charge was for lab work. Uh, NO! Jack didn't have a single lab drawn in connection with his radiation treatments. I'm really close to going to the Department of Insurance and the media with this because it is flat out fraud on the part of the hospital and wrong that the insurance company doesn't seem to care. I try not to let insurance stuff get to me because it truly is a battle that can't be won, but I'm ready to at least make someone's life uncomfortable over this.

Speaking of idiocy, I was told on Monday that notwithstanding the fact that the company that sells the eye gaze communication system is located within miles of my house, the system would have to be shipped to the company that is an approved DDD vendor (and which is located in another state) and then that company will ship the equipment to us. Expected time of arrival -- several months! This, instead of allowing the company representative to drive down the street to our house and set up the equipment for us. Fast forward to Wednesday and through some magic, the company was able to convince DDD to allow the system to be delivered directly to us. Expected time of arrival -- next week!

Onward we march .................

In this life we can not always do great things.
But we can do small things with great love.

Mother Teresa

Happy Birthday

Happy 6th Birthday to Eric

These pictures are from an impromptu photo shoot. So, yes ... his feet are dirty, his clothes are dirty and his hair isn't brushed. Nevertheless, he sure is cute, isn't he? I think I'll keep him, even if he wants a different mom!

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Some old photos
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Brothers first photo

Caught in the Act

My all time favorite video of Eric - he was around 3 years old in this video

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The Week in Pictures

Since the weather has been so great, I've tried to get Jack out as much as possible this week. We live within walking distance from almost any store or restaurant you can think of. Since I was home earlier than usual on Thursday - Mary, Eric, Jack and I walked to Applebees for dinner.







Friday night, my friends from Denver -- Whitney, Steve and their boys, Aiden and Alex were in town and stopped by for a visit. Alex (the little guy on your far right) used to have a trach and Whitney and I met on the Tracheostomy.com message board. Whitney and I usually see each other at least once a year, but this was the first time I'd met the boys. They were both very cute! Although, in the picture, Aiden isn't so sure about being in Jack's bed.

Saturday morning serious soccer pose.

Michelle and her daughter Sara. Michelle has been cutting Jack's hair since we moved home almost six year ago. It's been a Godsend because she comes to the house, which has made life so much easier on me. Unfortunately for us, but good for Michelle, her husband recently got a job in Washington DC, so Michelle will be moving away. She did give me the name of her good friend who said she would come out to the house to cut Jack's hair. Thanks Michelle for taking such good care of Jack these last six years -- we'll miss you!

We went out for a walk this evening and had a little photo shoot by this great water feature in our neighborhood. (more pictures to come later this week ... I did a photo shoot of Eric for his 6th birthday).



Have a great week and for all my friends in the Midwest, Canada and the Eastern states- sorry about all that snow. Stay warm and hopefully Spring will spring on in very soon!

It's A Good Thing I'm Not ...

the sensitive type. Several times every day, I get to hear this:

"I don't like you, you're mean"

"I want a new mom"

"If I had a wish, I would wish for a new mom ... one who lets me do whatever I want"

"I don't want you to be my mom"

"Dad lets me do whatever I want"

"I wish you weren't my mom"

I know that this is very typical, but it's a first for me. Before I had Eric, people always told me how easy I have it with my kids and that I was so lucky because my kids were so easy. "Easy" when it comes to Jack is debatable, but he certainly isn't a disciplinary problem and he always talks nice to me.

Then I had Eric. It's a good thing he not only wasn't my first, it's probably helpful that Jack came into my life before I had him. I really do chuckle to myself when Eric gets his attitude because I truly can appreciate his strong opinions and ability to articulate them. Fact is, he is his mother's son. I just wish he'd cut me a little slack every once in a while. Eric is also really good at playing the "sibling of a child with special needs" card. He likes to tell people that "you have to be sick to get anything around here", or the other day he told me "Jack gets this much" (and he draws a picture of a big box) and "I only get this much" (he draws a picture of a little box). Seriously, people .... this kid does not want for time, attention or stuff. I'm just amazed at how early he's figured out how to "play the game". But, you gotta love him. He's smart, he witty, he's hilarious and he makes me laugh. I love him to bunches, even if he wants a new mom.

Mr. "tude"

Mr. Attitude celebrates his 6th birthday next week. He's so excited because finally "his needs" will be met. I'm guessing he'll be okay with me being his mom long enough to go shopping for presents.

Have a great day and remember .... "smile and the world smiles with you".

Monday Update

I wish there was something to update on. We had a perfectly boring and pleasant weekend. Jack is feeling great - I can always tell when he is feeling good because his heart rate is in the 70s when he is awake, which means he is feeling really relaxed. When he is sick or not feeling his best, his heart rate is above 100 when he is awake. We had a beautiful weekend weather-wise. The kids and I went for a long walk and then we all went out to dinner on Saturday night. We are experiencing what I call our "why we live here weather". My friend sent me a picture of her Saturday morning in the Boston area:



On the other hand, we enjoyed warm weather and blue skies.



As I've shared in the past, sometimes I feel like blogging on our every day, mundane life is silly and that maybe I should end this whole blogging thing. But today, I was reminded why I do this. I received two emails from moms who live in opposite ends of the country. What these very special moms shared with me is that when they read Jack's blog, they feel like I am writing their story and that it helps them to know that they are not alone. It is both humbling and deeply moving to me that so many people can relate to my words. Before I had Jack, I would never have guessed that I could write in a way that would catch people's interest. Afterall, I was a Biology major in college and I spent my days studying the Krebs cycle and chemical equations. Who knew I could write?

I don't share this to pat myself on the back, but to say "thank you" to all who read, who care, who leave comments of encouragement and to those who share their own stories with me. To quote Helen Keller .... "Alone we can do so little; together we can do so much". I am thankful for the opportunity to make a small difference ... together ... with all of you.