Monday, September 27, 2010


I need some.  Got any?

This is a Xanax kind of week.

As you can imagine, it's very stressful getting everything ready and packed to take your technology-dependent child 1500 miles across country by car.  It's exceptionally stressful when your van is 10 years old, has 130,000 miles on it and you are just hoping and praying it gets you there and back without any problems.  Actually, we do more than hope and pray ... we take it to a mechanic and put the fear of God in him when we tell him we are paying him to make sure this van gets us to St. Louis and back because it will be hauling very precious cargo.  We took the van in a few weeks ago and had it all checked out.  No problems.  Mark went to start the van tonight and .... dead battery.  Battery is brand new and it's dead.  We're hoping it's just that a light might have been left on when Mark took the van in to be detailed today.  Problem is we are just days away from leaving and dealing with van issues does not fit into our already packed schedule of things that have to get done this week.  Nothing stresses me out more about these trips to St. Louis than the prospect of car trouble.  Part of me just wants to rent a van, but for the cost.

Days before the trip is also not the best time to discover that neither of your boys have long pants, winter pajamas or socks that fit them.  You see, here in the desert, kids don't wear long pants, pajamas or socks.  They live in shorts, boxers and crocs (without socks). Not that big a deal, everything I need I can find at Target.  Finding time to get to Target is a big deal.  Working full-time and having a husband who works evenings and no one to watch your medically fragile child really cuts into one's ability to get the shopping done. I thought I had it all done this weekend.  Guess not.

Inhale. Exhale. Inhale. Exhale.

I can do this.

Xanax NOW!

Seriously, I only wish for Xanax.  If I actually took a Xanax, I wouldn't be able to function and in addition to all I have to do at home, I have equally as much to do at work to get myself in a position to be gone for a week.

I can do this.

Yes I can.

Cheer me on, please.

Tuesday, September 21, 2010

Senior Pictures

Check out a few more of Mary's senior pictures HERE


Sunday, September 19, 2010

Just a Picture

Mom and Jack having a conversation 
(captured by Ryan House staff)

Saturday, September 18, 2010

Portrait Day

Mary had her senior portraits taken today by an awesome photographer - Doni.

I snapped a picture with my phone while Doni was taking pictures.  We can't wait to see Doni's pictures.

We are spending another weekend at the Ryan House.  Ryan - the "Ryan" of Ryan House is here this weekend and he and Eric have been having a great time together.  It's nice to see Eric interact so easily with kids with disabilities.  Seeing Ryan and Eric together makes me wish so much that Jack was communicative - it would have made for a much closer relationship between him and his sibs.

Oh well . . . Que Sera, Sera.

Hope you all are having a great weekend!

Thursday, September 16, 2010

What's Wrong With This Picture

Day: Tuesday

Event: class field trip to Rock and Mineral Museum

Dressed in 3rd grade class shirt - check

$10 spending money for gift shop stuffed in pants pocket - check

Sack lunch with name written on the outside - check

All set and ready to go.

What's wrong with this picture?

Field trip was Wednesday, not Tuesday.

Me: "Eric, please tell me you weren't the only one in your class who got the day wrong".

Eric: "Yes mom, I was the ONLY one in my class wearing our class shirt today."


I swear I am always screwing up something when it comes to Eric and homework/projects/special events/field trips.  I'm clearly too old and forgetful to have a kid in the 3rd grade.  Tomorrow is Grandparents Day at Eric's school.  Perhaps I should go. I doubt anyone would question whether I belong.

Fortunately, Eric is pretty laid back about all his mom's screw-ups.

Wednesday, September 15, 2010

Why I Love SLCH

I emailed Jack's ophthalmologist at 6:44am this morning letting him know that Jack has a bronch scheduled on Friday, October 8th in the event he wants to perform an EUA (exam under anesthesia) of Jack's eyes while he is sedated for the bronch.

Received a response from Jack's ophthalmologist at 6:58am letting me know that "Yes, we will want to do an EUA at that time".

Received a call from the ophalmologist's scheduling nurse at 12:30pm letting me know that the EUA has been coordinated with ENT's broch and both docs are on the schedule for their respective procedures.

Not in a million years would the doctors in this City have coordinated procedures, let alone do it so quickly and efficiently.

I LOVE St. Louis Children's Hospital!

Tuesday, September 14, 2010

A Doctor I Like

The doctors that I like are few and far between.  But, as you know from emails I've shared in the past, there are a handful that I really like.  I like these doctors not only because they are great doctors, but because they are genuinely good people too.  For example, how many doctors (who lives in a different state and who doesn't even take care of your kid anymore) would spend his weekend responding to your emails and tracking down another doctor (who lives in yet another state and who also no longer takes care of your kid) while traveling out of the country to attend a friend's kid's Bar Mitzvah?

I've shared a portion of this email exchange in a prior post.  Here is the entire exchange.
Friday 1/13/06 12:42am

I need your help trying to figure out Jack and since P is still incognito, I thought I'd ask you. I won't give you the specific details of what's going on with Jack because I'm not asking you to diagnose him via email. My question -- based on your experience, can a kid have a pneumonia even if his sats are fine (>95%) and his secretions are not colored or excessive? The only "symptoms" are a high heart rate and he looks like he's working to breathe (ok, so I gave you a few details).

I'm lost and frustrated and Jack is not a happy camper.

Friday 1/13/06 7:24am
Speaking hypothetically, yes, one can have pneumonia without those finding. On the other hand, just based on high heart rate and increased work of breathing, a pneumonia is not the only thing to consider in a child with a trach. (I'm thinking airway obstruction at some level ....)

I'm about to leave for the airport but will be in touch later by email. Sorry P is not available.

Friday 1/13/06 8:22pm
Hypothetically speaking, I'd rather have my toenails ripped off one by one than deal with the doctors in this City.  You mention airway obstruction and I'm thinking ENT -- we are in big trouble because I've pretty much run through all the ENTs here. So, my only option is to wait until the issue becomes acute and then take him to the ER. It's Friday the 13th and there's a full moon - the ER is the last place I want to be tonight.

Seriously, thanks for your thoughts. I have no idea what I'm going to do, but I do feel helpless - primarily due to my own stubbornness, I know.  One of the things I read in doing research for my foundation is that there is a breakdown of parental coping skills - especially for mothers -- the longer they care for their children.  I'd say I'm there -- very little ability to cope anymore.  Jack has survived this far in spite of me, let's hope he continues to do so.

Thanks again - I'll let you know if it's anything serious.  I NEED P, did she say when she is supposed to start working at [Children's Hospital]?

Take care.

Saturday 1/14/06 6:53am
Sorry to hear this. I do not know when P is starting at [Children's Hospital]; I will see if I can find some contact information as soon as possible.

Jack has survived because of you -- you have survived in spite of him!

Saturday 1/154/06 3:30pm
Have you tried reaching P at her Wash U email address?

1/14/06 7:30pm
No I have not. I can't imagine she would check that email - but, it's certainly worth a try.  I took Jack to his pediatrician's today and he is also concerned that he might have an airway issue going on. I thought Jack might have strep throat because he really reacts in pain when we suction him  -- especially his mouth. He doesn't have strep.  When Jack has his surgery back in July, they closed his trach stoma and intubated him through his mouth and I was told that he had a very difficult time intubating him because his airway is so collapsed above the trach.  I'm sure his upper airway was like hamburger following that surgery.  I'm now wondering if there is something residual going on from that. In any event -- he needs to be scoped by an ENT.  My worst nightmare.  So, I must suck it up and try and find an ENT in this City that I can work with - and who is willing to even see Jack given my reputation for changing ENTs. (all the ENTs who see kids are with the same group). My last experience with an ENT here ended when he told me that he couldn't be the doctor I needed him to be given the nature of his practice.  How do you respond to that?  What is so damn unique about his practice? Problem out here is they want kids who are in and out -- no long term commitments. That's the biggest difference I find between the docs at SLCH and the docs here.

The battle marches on ....

Sunday 1/15/06 7:53 am
Sorry to hear how troubling that is - it should not be! You've probably already checked, but have you looked into resources in relatively nearby cities, like Flagstaff or in Albuquerque? I know they're smaller cities, but they have PICU's so they must have peds ENT support, no?

If I get contact info on P tomorrow, I'll let you know. (I'm actually in Toronto right now ....)

Sunday 1/15/06 9:16am
I think it's a safe bet Flagstaff has nothing (not even snow this year!)  And, at this stage of the game, if I'm going to travel for Jack's care, I think I'd rather travel to the known versus the unknown. Thank you so much for talking me through all this .... I'm off to work. Want to trade places -- Toronto sounds fabulous!

Sunday 1/15/06 8:14pm
Toronto was very cool - home now.  We went for the Bar Mitzvah of the youngest son of a former peds surgeon from here.  Our families became good friends.  He moved back to Toronto to be the head of peds surgery at Toronto Sick Kids.

Anyway, if I get more contact information for P, I'll let you know.

Off to work - on Sunday? What's up with that?

Sunday 1/15/06 10:47pm
Got ahold of P.  She says you should feel free to call her.  Her home number is xxx-xx-xxxx and her cell is xxx-xxx-xxxx. Anytime.


Yes, I really like this doctor.  Incidentally, P was Jack's former pulmonologist who left St. Louis Children's Hospital and moved to Florida.  She is absolutely the "best of the best" when is comes to kids and vents. She is also a helluva advocate for her kids.  I was in tears when she told me she was leaving. She is another one of the doctors I really like.  I still look to her when I have questions regarding Jack and his vent and she is always willing to help me out.

Oh, and that ENT who told me he couldn't be the doctor I needed him to be given the nature of his practice .... he's one of those doctors I really don't like.


(postscript: and I did call P and she talked me through some things, gave me some ideas and just made me feel better because she is one of those physicians who truly cares ... about Jack and about me.)

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Saturday, September 11, 2010


5:00am: alarm goes off, get out of bed off the couch.

5:15am: Mark walks in the door after working all night.

5:20am: set up baby monitor in Mary's room; wake up Mary and tell her that she is on "Jack duty" and to listen for any alarms.

5:25am: Mark goes to bed in Jack's bed (so he is as close as possible to any alarms that may go off).

5:30am: leave house and go pick up sister #1.

6:00am: drive with sister #1 to meet sister #2 at our walking trail for 1/2 marathon training.

6:30am: arrive at destination and start walking with sister #1 and sister #2.

6:30am - 8:30am:  walk 8.5 miles and pray the whole time that if any of Jack's alarms go off, Mark or Mary will hear them.

9:00am:  Call Mary on her cell phone as I'm driving home and tell her to get Eric up, dressed and fed breakfast.

9:25am: arrive home; wash face; change clothes; wake up Mary and tell her that she is still on Jack duty.

9:35am: check on Jack, he's still asleep (Mark now asleep in his bed); head out the door with Eric to take him to a Sibshop.

10:05am: drop Eric off at Sibshop.

10:45am: arrive back home; breathe a sigh of relief that Jack is still asleep and didn't need anything the last 5+ hours that I've been gone; wake Jack up and start his morning routine.

1:15pm: leave house to pick up Eric; tell Mary she is on Jack duty again.

2:30pm: arrive home; Mark is awake; Jack is fine and all is well.

3:30pm: head to the Mall with Mary to look for something to wear to fundrasier/concert event tonight (because, you know ... I don't have a thing to wear in my closet!)

4:30pm: arrive home with new outfit; get ready for evening event

5:00pm: nurse arrives

5:30pm: leave house with Mary for a fundraiser/concert with my sisters and their families (Mark and Eric elected to stay home).

10:00pm: arrive home, nurse leaves; Jack is happy and I'm thankful that today went off without a hitch!


On days like today when Mark has worked the night before, I have things I need to get done and I don't have a nurse during the day, it's all about logistics and having every piece fall into place perfectly.   Today everything went according to plan and I got it all done. Yeah! Most any other Saturday and I would have been stuck because Mary typically works on Saturdays.  Fortunately, she took this weekend off because her cousins are in town and she wanted to spend time with them.  It also helps that Jack is a night owl and not an early riser.

11:47pm: Time for this tired Mom to get to bed and get some rest so I can wake up and do it all over again tomorrow.

Life is good.


Some pictures of the cousins having fun at tonight's event


 “In daily life we must see that it is not happiness that makes us grateful, but gratefulness that makes us happy.” 

–Br. David Steindl-Rast

Tuesday, September 07, 2010

Is It Fall Yet?

Labor Day has come and gone and it's now time for some cooler, "Fall" weather, yes?  I'm usually not one to complain about the heat because I know it's the price we pay here in the desert for our fabulous Winters. However, this summer is different because I'm training to walk a half marathon.

When I decided to walk the half marathon to raise money for Cure CMD, I thought it would be no big deal. After all, I'm not running a half marathon, I'm only walking it.  I mean, how hard can it be to WALK 13.1 miles?  Well, when it's 110 degrees and humid outside (what happened to our dry heat anyway?) . . .  it is tough.  I've tried early morning and late evening and regardless of the time of day, it is still hot and miserable.  I'm ready for cooler weather now.

I'm optimistic that I can finish the walk before the sweepers provided the weather in Los Angeles in October is much cooler than it is in Phoenix in August.

Thank you to all my friends who have made a donation to date. I really appreciate it ... and you.

In other news ...

Hilary made it back to Rochester safe and sound and is happily tucked away in her dorm room.  After Mark took her shopping for stuff she needed to get her through the next few months, she promptly told him it was okay for him to leave now.  There becomes a point in time when all parents are good for is their money!

Last week, I had to take Jack to an "intake" appointment so that he could remain eligible for Medicaid.   Because of our state's budget crisis, they moved some kids who receive Medicaid to a different program called Children's Rehabilitative Services or "CRS".  I almost opted out of the whole thing because I think it's BS that we have to see doctors who will not be providing care to Jack (because we have private insurance).  But, I figured it was not wise to lose Medicaid either.  We get to the appointment and they tell me we are seeing a geneticist and the appointment will take at least one hour.  I (somewhat) calmly told them that Jack is seen by one of the top neuromuscular docs in the country at one of the top neuromuscular centers in the country and that I know more about Jack's genetic condition than their geneticist ever will.  I handed them the  three-page history/diagnoses/conditions/medications/list of physicians that I had typed up and told them everything they needed to know could be found on those sheets of paper.  When the geneticist came to the room, I explained why I was there (only because I had to be) and I told her that I didn't have an hour because I had to get to work.  She wrote fast and we were out of there in a half hour.  She mentioned some other genetic testing that would tell us if Jack has any other genetic glitches other than CMD. Seriously, do you think I care?  What difference would it make if he does?  I let her know that Jack is an impossible stick and she wasn't even going to be allowed to try.

The doctor told me she was "very impressed" with how good Jack looks given all his "issues".  She also felt the need to tell me that most marriages don't survive having kids like Jack.  Weird.

I really don't like doctors.  Except for those doctors I really like.

Well, that's all I've got my friends. Thanks for checking in!

Wednesday, September 01, 2010

Walking to Support Cure CMD

On October 24, 2010, I am walking the Los Angeles Rock 'N' Roll 1/2 marathon as part of Team Cure CMD.  Cure CMD is an organization whose mission is to bring research, treatments and, in the future, a cure for Congenital Muscular Dystrophies.  As many of you know, Jack was born with a Congenital Muscular Dystrophy.

I am walking to raise awareness and funds for Cure CMD.  If you would like to support me in my walk for Cure CMD, please CLICK HERE and look for the picture of me and Jack and use the donate button next to our picture.

Even if you are unable to provide financial support, your thoughts and prayers for me to finish the race ahead of the sweepers are also very much appreciated.  :-)

Thank you!