Thursday, October 30, 2008

My Night Nurse

In the wee hours of the night, that little red light on Jack's toe is about the only thing standing between life and death for Jack. Because Jack has an artificial airway and depends on a machine to breathe for him, Jack must be monitored 24/7. During the day, someone is almost always with Jack and we can generally monitor him by looking at him. While we sometimes keep the pulse-ox on Jack during the day, we don't keep it on him when we take him out. At night however, I don't have night nursing and I need to get some sleep. Therefore, I rely entirely on that little red light and the machine it is hooked up to, to alert me if there is a problem. Every night before I close my eyes, I say a silent prayer asking that I please hear the alarm if it goes off. So far, I don't think I've ever slept through an alarm. It's scary enough depending on technology to breathe for your child. It's even more scary depending on technology to blast you out of your slumber to alert you to your child's falling oxygen saturations. And even more scary at times, is figuring out why your child's oxygen saturations are falling and how to resolve the problem. Sometimes . . . this is all just too scary!

It's time for me to try and catch a few hours of sleep, but first I will send up my request for no alarms tonight . . . for me, for Jen, for Rachel, for Karen, for Dana, for Nikki, for Melisande, for Kristy, for Sarah, for Julie, and for all those moms sleeping with one ear open, listening for the dreaded alarm and relying on that little red light to keep their child safe tonight.

Wednesday, October 29, 2008

Need a Good Cry?

For those of you who read the story about Christian and Stephanie, watch this (click on link):

Christian and Stephanie's daughters singing at benefit concert

(btw, a good cry every now and again is good for you.)

Monday, October 27, 2008

Words to Live By

I really struggled with whether to post this entry. Not because it mentions the word “God”, but because I’ve always tried to keep my religious views out of my writings. Kind of silly, huh? I guess I worry too much about what other people think and I don’t want to offend anyone. I promise I’m not trying to convert anyone here, I just feel compelled to share something that a friend of mine emailed me today. It is an interview with Rick Warren, the author of “Purpose Driven Life”. The interview follows a year in which Rick’s wife was diagnosed with cancer and in which he experienced great wealth from his book sales. Regardless of your religious views (or lack thereof), I believe the message that we all have a purpose in life, that we need to find that purpose, that our purpose should not be driven by self-centeredness, guilt, bitterness, materialism or the like, and that we should focus on our purpose and not our problems – is certainly a message relevant to all.

The words in this interview really hit home with me because lately I’ve been feeling so overwhelmed with trying to balance the responsibilities of work, family and those “extra-curricular” activities that I believe lead me to fulfill my purpose in life (The Willow Tree Foundation, the “Dear Future Physician” project, writing a book). I’m not too many birthdays away from the half-century mark and I feel like it’s time to re-evaluate what I want to do with my life and where I want to focus my time and energies. I just need to figure out a way to fulfill my purpose and support my family at the same time (because right now, the two aren’t compatible). I’m hopeful that with time, patience and by keeping an open mind and heart, I’ll eventually figure out what changes I need to make to live out my life with purpose.

Without further ado (or rambling), here are words to live by:


Rick Warren Interview:

People ask me, What is the purpose of life?

And I respond: In a nutshell, life is preparation for eternity. We were not made to last forever, and God wants us to be with Him in Heaven.

One day my heart is going to stop, and that will be the end of my body-- but not the end of me. I may live 60 to 100 years on earth, but I am going to spend trillions of years in eternity. This is the warm-up act - the dress rehearsal. God wants us to practice on earth what we will do forever in eternity.

We were made by God and for God, and until you figure that out, life isn't going to make sense. Life is a series of problems: Either you are in one now, you're just coming out of one, or you're getting ready to go into another one.

The reason for this is that God is more interested in your character than your comfort; God is more interested in making your life holy than He is in making your life happy. We can be reasonably happy here on earth, but that's not the goal of life. The goal is to grow in character, in Christ likeness.

This past year has been the greatest year of my life but also the toughest, with my wife, Kay, getting cancer. I used to think that life was hills and valleys - you go through a dark time, then you go to the mountaintop, back and forth. I don't believe that anymore. Rather than life being hills and valleys, I believe that it's kind of like two rails on a railroad track, and at all times you have something good and something bad in your life.

No matter how good things are in your life, there is always something bad that needs to be worked on. And no matter how bad things are in your life, there is always something good you can thank God for.

You can focus on your purposes, or you can focus on your problems: If you focus on your problems, you're going into self-centeredness, which is my problem, my issues, my pain. But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others.

We discovered quickly that in spite of the prayers of hundreds of thousands of people, God was not going to heal Kay or make it easy for her- It has been very difficult for her, and yet God has strengthened her character, given her a ministry of helping other people, given her a testimony, drawn her closer to Him and to people.

You have to learn to deal with both the good and the bad of life. Actually, sometimes learning to deal with the good is harder. For instance, this past year, all of a sudden, when the book sold 15 million copies, it made me instantly very wealthy. It also brought a lot of notoriety that I had never had to deal with before.

I don't think God gives you money or notoriety for your own ego or for you to live a life of ease. So I began to ask God what He wanted me to do with this money, notoriety and influence. He gave me two different passages that helped me decide what to do, II Corinthians 9 and Psalm 72.

First, in spite of all the money coming in, we would not change our lifestyle one bit. We made no major purchases.

Second, about midway through last year, I stopped taking a salary from the church.

Third, we set up foundations to fund an initiative we call The Peace Plan to plant churches, equip leaders, assist the poor, care for the sick, and educate the next generation.

Fourth, I added up all that the church had paid me in the 24 years since I started the church, and I gave it all back. It was liberating to be able to serve God for free.

We need to ask ourselves: Am I going to live for possessions? Popularity? Am I going to be driven by pressures? Guilt? Bitterness? Materialism? Or am I going to be driven by God's purposes (for my life)?

When I get up in the morning, I sit on the side of my bed and say, God, if I don't get anything else done today, I want to know You more and love You better.

God didn't put me on earth just to fulfill a to-do list. He's more interested in what I am than what I do. That's why we're called human beings, not human doings.

Happy moments, PRAISE GOD.

Difficult moments, SEEK GOD.

Quiet moments, WORSHIP GOD.

Painful moments, TRUST GOD.

Every moment, THANK GOD.


Speaking of life's purpose - here is Part II of Christian and Stephanie's Story published in Monday's paper (another tear-jerker).

This Weekend

We planted flowers

Tried on (lived in) our Halloween costume

. . . did laundry, cleaned house, Target-shopped, changed out videos for Jack, watched football, taxied Mary around, suctioned Jack, felt sorry for myself on Friday evening because I was stuck at home, watched baseball, took pictures, read blogs, went into the office and last but not least . . . updated the blog.

Time to get some zzzzzzz's. Have a great week everyone!

Sunday, October 26, 2008

A Story Worth Sharing

I'm sure each of you reading this Blog has a number of blogs you follow and the last thing you have time for is to follow yet another blog. However, I want to share with you the blog of a young couple (Christian and Stephanie) who were both badly burned in a small plane accident that happened in August. This couple is from the Phoenix area and they have four young children. There are many remarkable things about their story, but the thing that really moves me is the bond between the sisters. There was an article in our paper today about their story and how Stephanie's sisters have rallied around her to help care for her children and support her and her husband during their recovery. I think it's a story worth sharing. Here is the article in our local paper, it brought tears to my eyes:

After a fiery plane crash, a sister is held even closer

Here is the link to Stephanie's sister - Courtney's blog, which chronicles Stephanie and Christian's progress: cjane

I have been following this story for several months now. It is a story that is both sad and inspiring. My heart goes out to this family and I think yours will too.

Wednesday, October 22, 2008

Checking In

I feel like I should update because I know people check in. It's been a typical "just trying to keep my head above water" kind of week so far. Everyone is well, so I really have no complaints.

Because I've got nothing else to talk about, I'll leave you with a story I'm sure many of you have already heard, but one worth hearing again.


The Starfish Story

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."


Have a great day and remember . . . we all have the ability to make a difference, one small act at a time.

Sunday, October 19, 2008

Just Another Weekend

Nothing much to write home about. Just another relatively quiet and uneventful weekend. Jack is feeling much better. He's requiring more breathing treatments and use of the Vest/Cough Assist, but he's definitely turned the corner and should be back to par soon. I think going without humidity so much while we were in St. Louis just caught up with him. Plus, it's not unusual to come down with something following any invasive procedure like a bronch.

That's about all I've got for now. Here are some pictures from this weekend.

Mary at her Irish dance competition today.

If you want to check out Mary's Irish dancing - click on the link below to see a video of a team competition from last year (which, incidentally I was not supposed to be videotaping but didn't know that until after the fact). Don't ask me which one in the group is Mary because with their wigs on, they all look the same.

Irish Dancing - Ceile

The story behind this picture ~~

Mark bought donuts Saturday morning and after finishing one donut, Eric really wanted a second but he was too full. So as to be sure no one ate the donut he wanted and intended to eat later, he made the sign and put it next to his donut. Too funny!

Another Eric funny. Mark told me that last week after picking Eric up from school, he and Eric exchanged the following words:

Mark: How was school today?

Eric: Why don't you just call me "Mr. What's It To You?"

Friday, October 17, 2008


No need to carve a pumpkin this Halloween. I've got my own real, live Jack-O-Lantern. I just need to figure out how to get a candle in his mouth!

Have a grand weekend everyone.


Wednesday, October 15, 2008

Trudging Through

the week, that is.

Starting back to school mid-week after a two and a half week hiatus is difficult enough. Sending homework home with first graders the first day back after a two and a half week hiatus is insane (and isn't likely to get done). I don't get it.

We aren't exactly back into the swing of things yet, but everyone did manage to get up and out the door on time for school this morning. As for Jack, he's a bit punky. Not sure what is going on with him, but hopefully it doesn't escalate into something that requires a doctor's visit. I've had enough visiting with doctors for awhile.

The insurance adjuster is coming out to the house tomorrow to assess the damage. Having told the story enough times, I have to admit that if it wasn't such an expensive venture, there is an element of humor to the whole thing. A very small element of humor.

And while I'm listing the mundane details of everyday life, I'll add that I've lost my keys. Big bummer. Especially if they are in St. Louis (I've got Peggy looking for them).

Jack will be celebrating his 10th birthday in a few weeks. I'm working on putting my thoughts to words that I will share on his special day. So many emotions. So difficult to articulate. Only so many hours in a day. But, I'll get it done.

Carpe Diem my friends.

Monday, October 13, 2008

and let me just add . . .

I'm home for an hour and I start the first of about 5 loads of laundry that need to be done and the washing machine sounds like it's ready to die any minute (I discover the wash cycle doesn't work). Mark runs out to Lowe's to purchase a new washing machine before the store closes for the night because we cannot survive without a washing machine. Cha Ching!

Mark then goes to pick Mary up from dance and he lets her get in some driving practice (in my car). I'm sitting at the computer when I hear this screeching crash. Mary was turning into our driveway and (apparently) hit the gas instead of the brake and hits our van parked in the driveway with MY car. We now need body work on TWO cars with TWO deductibles. Cha Ching! Cha Ching!

This week can only get better, right?


We are home! Thanks to all for checking in on us, for thinking of us and for leaving comments during our week in St. Louis.

We are happy we went, we are happy with the results, we are happy to have seen so many of our St. Louis friends and we are most happy to be HOME!

Fading . . . hour 10 of day two in the car


Jack upon our arrival at home - one happy kid!

Sunday, October 12, 2008

Recycled Post

We are half way home and as I sit here in our hotel room in Amarillo, Texas, I can't help but think of my dear friend Peggy. Once again, Peggy and her husband, Max opened up their home to us during our stay in St. Louis. As you can imagine, it's no small deal to allow a family of six and a ton of medical equipment to invade your home. Not only does Peggy provide us a place to stay, she feeds us, she helps me with Jack's care, she entertains my other kids, she does our laundry, and she keeps me well "hydrated", just to name a few. Peggy is a remarkable person and but for Jack, I would never have had the privilege of meeting this person I count among my very best friends. Peggy is one of the nurses who cared for Jack when we lived in St. Louis and her husband, Max is a pediatrician. You certainly can't find better accommodations for a kid like Jack than Peg's house.

I would like to share a post I wrote about Peggy back in 2006 after our stay with Peggy when Jack had his spinal fusion surgery.


August 29, 2006

My favorite picture of Peggy and Jack taken when Jack was 2 1/2 years old

I've mentioned in many of my daily posts, our friend Peggy. Although Peggy will probably have my head for this, I just have to take this opportunity to share with you all what a wonderful and amazing person she is. Peggy came into our lives about a week after Jack was discharged from the hospital as a baby - trached and vented - back in June, 1999. Peggy walked into our home to a scene she will always remember. Jack's night nurse and I were standing over Jack's crib, which was located in our living room, bagging him through a period of respiratory distress. What I didn't know at the time was that Peggy had made it very clear to the nursing agency she was working for that she didn't take care of kids on vents. Trachs, yes ... vents, no! Not a problem they told her, Jack was only on the vent at night (not exactly true). When she left that day, Peggy told me that although Jack was a really sweet baby, she probably wouldn't be back because she didn't take care of kids on vents. Well, Peggy couldn't stay away. She fell head over heels in love with Jack, and he with her and she never looked back. Peggy has been a significant part of Jack's and our lives ever since that day back in June, 1999.

Peggy has devoted at least the last 8 years of her life to caring for medically fragile children. She does this, not because she has to work, but because she has a special place in her heart for kids like ours. Peggy doesn't just come into your home and provide nursing care for your child, she embraces and cares for the entire family. She is this way with every family she has cared for. She often takes "her" kids into her home for the weekend so that mom and dad can have some respite time. She always included our family in holiday celebrations with her own family because we didn't have extended family in St. Louis. She attended my kids' First Communions, graduations and special events in lieu of my own family, who lived out of state. As difficult as it was for her to say "good-bye" to her Jack over four years ago, she made the trek with us from St. Louis to Phoenix when we moved home. She and her husband, Max, have always graciously opened their home to us when we come back to St. Louis for Jack's doctors' appointments and surgeries. Peggy was at the hospital every single day of Jack's 3 1/2 week hospital stay to allow Mark or me to get away for a few hours (and, of course, to spend time with Jack). We never could have gotten through this last month without our dear friend Peggy. She is the most unselfish and giving person I have ever known. Peggy came into our lives seven years ago as one of Jack's nurses ... today, she is not only one of Jack's (former) nurses, she is Jack's godmother and one of my very best friends. Peggy never tires of hearing about Jack and what is going on in his life. She is one of the few people I can talk to on the phone for hours about nothing else but Jack. She cares as much for him as I do. We are privileged to have a friend like Peggy in our lives. Thank you Peggy, we love you very much.


The same holds true today. Thank you Peggy, we love you very much.

Saturday, October 11, 2008

Heading Home

The girls made it home safe and sound this evening. I sure wish we could put Jack on a plane and be home in three hours. Or, better yet . . . get myself a pair of ruby shoes, tap my heels together and simply recite "there's no place like home" and poof, there we would be.

This last week has caught up with me. I feel like #*$@. Between the tooth ache I've had since Wednesday, the back ache from all the lifting of Jack and just lack of sleep, I'm ready for a vacation from this vacation (and a trip to the dentist). Bleh!

Thankfully, Jack has tolerated the trip well. Eric has also really enjoyed himself. Peggy has a huge, wooded yard and Eric has captured (and lost) a lot of bugs this week. There are a few ladybugs and a caterpillar roaming around Peg's house somewhere!

We'll be heading out bright and early tomorrow morning. Thanks much for keeping us in your thoughts and prayers.

Jack and his fellow trach friends (Nathan and Donovan)

Fellow Trach Moms (me, Melisande and Kristy)

Friday, October 10, 2008

Day Three

Sorry for the delay in updating but by the end of Day Three, I was spent and in bed (and asleep) by 9:30pm.

The night of the sleep study, I probably dozed off around 2am. Promptly at 6am, they woke me and Jack up and practically kicked us out of the sleep lab. We had to go back to the floor to get discharged, which didn't happen until 10am. The hold-up was getting blood from Jack for a few tests Jack's neurologist had ordered. Since Jack is an impossible stick, we had to wait for the IV team to show up. We went directly to the eye clinic, where Peggy, Eric and Mary were waiting for us. They were running an hour behind, so all the stress of demanding immediate discharge from the floor wasn't even necessary. Both Eric and Jack's eyes look good with no changes to their prescriptions. I was able to get two prescriptions for Jack -one for distance (when watching his TV) and one for when using his eye gaze system.

With the eye clinic running behind, we then cut it close to make Jack's afternoon appointment with his neurologist. I hope we were Jack's neurologist's last appointment of the day because she spent an hour with us. A few things I learned from the appointment: (1) I don't need to worry so much about Jack's contractures because they aren't necessarily going to continue to get worse; (2) we need to increase Jack's food intake because he has lost weight. When we were in St. Louis two years ago, they weighed him on a bed scale and said he weighed 70+ pounds. He now weighs 52 pounds. But, Jack's neurologist said that bed scales aren't accurate and he probably did not weigh 70 pounds, but that she does think he looks thinner than he looked two years ago; (3) Jack's tongue has gotten bigger (which is why it's always out of his mouth) and this is related to his muscular dystrophy. I was worried it was a neurological thing, but it's a muscle thing (called hypertrophy). The tongue out of the mouth really bugs me - but, it is what it is, so I just have to accept that; (4) one of the blood test ordered is to send to a lab in Iowa that can look at Jack's DNA and possibly figure out the exact glitch in Jack that causes his form of muscular dystrophy. They are also going to bank Jack's blood here at the Neuromuscular Center at Washington University. In the event that they can't identify what Jack has at the Iowa lab, they will have Jack's blood on hand should other tests become available in the future; and (5) finally, I got a lecture about lifting Jack. I was told that I need to use the lift when I'm at home (which I don't do) and I need to lift with my legs, not my back. I suppose it's a good thing that they are concerned about the well being of their parents too.

All in all, this was our best round of doctor visits in years. No surprises and everything looks good on all fronts. Orders are to return in two years.

Pictures from Day Three:

Peggy reading a book to Jack and Eric while waiting in the eye clinic (I'm taking the picture from outside in the hall looking through the window - which is why it looks foggy)

Eric requested this picture by the giraffe

Outside the Center for Advanced Medicine
(where we had Jack's appointment with his neurologist)

The boys and Dr Anne Connolly (Jack's neurologist)

Today is a day of visiting with friends. I had lunch with a few of my trach board friends and I'm meeting another friend for drinks this evening. Mark, Hilary and Eric went to the zoo today and Mary is spending a few days at her best friend's house (in our old neighborhood). The girls fly home tomorrow and we head out Sunday.

I'll share pictures from today a little later. Thanks for checking in.

Wednesday, October 08, 2008

Day Two

This was me and Jack first thing this morning. I don't think I'll share a picture of me and Jack now :-) It's 11pm and I have internet access in the Sleep Lab - yeah! Jack is still awake and I'm freezing in this room. Ahhhh, I think it's going to be a long night.

Our first appointment this morning was with the orthopedic surgeon and he appeared very happy to see Jack. I was a bit apprehensive because this guy is not my favorite doctor and also, we hadn't exactly followed his plan of 6 weeks and 1 year post-op return visits. But, he was very pleasant and said that he was perfectly okay with getting the x-rays from our local orthopedic surgeon. Everything looked great and in his words "you don't need to come back every year just to see me."

Next stop, Same Day Surgery. The bronch went well and everything looked good. Jack has a pristine airway - no granulation tissue, no trauma and no issues, which is remarkable considering how long we have been suctioning his airway. The ENT also put a new tube in one of Jack's ears because the tube was half-way out and on its side. It wasn't on the schedule (or the consent form), but he did it anyway because it needed to be done. (what a guy!)

The ophthalmologist said Jack's eyes are unchanged and there are no new cataracts forming on his lenses. Earlier this year, the Phoenix ophthalmologist had put in his report that Jack's cataracts were returning. It's scary how I can get two completely different opinions on something as obvious as cataracts. I'm going with our St. Louis doc on this one (I know that comes as a surprise to you.)

Jack's bronch and EUA were done by 1pm and my plan was to get out of there by 2:30 or 3pm and head back to Peggy's for a few hours before our overnight stay. Naturally, things didn't go according to my plan. For some reason, everyone thought it would make more sense for us to just go directly to the floor from Same Day Surgery, so they just kept us down there until 5pm. Sounds like a good idea from a logistical standpoint, problem is - I wanted to get the hell out of the hospital for a few hours. Didn't happen. The good part about it was that I got to visit with a lot of my hospital friends who made their way down to SDS to visit with us. The bad thing, I didn't have anything to eat all day except for a stale donut I ate around 10am. (well, that's probably not such a bad thing . . . I could stand to miss a few meals).

It practically took an act of Congress and multiple calls to Jack's neurologist to get us to the sleep study lab. There was confusion on every one's part for a variety of reasons. But, we made it and here we are (still awake and still freezing my arse off.)

I made it clear to the resident who admitted us that we have to be discharged no later than 9:30am because we have an appointment in the eye clinic tomorrow morning. Last time Jack had a sleep study, I just had to leave because the resident was taking his sweet time getting to the floor to sign us off. I don't think we'll run into the same problem this time. Small world encounter - the resident who admitted Jack is from Scottsdale (AZ) and she went to the University of Arizona medical school.

That's the update for today. I really, really appreciate all of you checking in on us and for leaving me comments. It's nice to hear from my friends at the end of a long day.

Tuesday, October 07, 2008

Day One

(one of the few pictures I got of Jack smiling today)

We saw ENT - nothing really to report until after the bronch tomorrow. Our visit with the cardiologist was great. We got checked in and then went to the "Heart Lab" where Jack had an echo and an EKG within 15 minutes of our arrival. We then saw the doctor, who had the results in hand when he came to see Jack. It was a seamless process. The cardiologist is sending us home with an "event monitor" because of these episodes Jack has where he gets really flushed and his heart rate goes up. It's a nifty device that we set on his chest over his heart whenever he has one of these episodes and the thing records his heart rate and wave. We then call a phone number, set the device on the phone and hit the "send" button and the thing sends the report over the phone to the docs here in St. Louis. We keep the monitor for one month and then mail it back to SLCH in a Fed-Ex envelope. How cool is that?

After we finished up with cardiology, we had to meet with the Anesthesiology Nurse Practitioner to get them up to speed on Jack's medical history before tomorrow's procedures. Fortunately, I requested and will be getting the same anesthesiologist who did Jack's spinal fusion surgery, so he knows Jack very well. He especially knows what a difficult stick Jack is.

I have to admit that I had a "teary-eyed" moment sitting in the cardiology clinic waiting room. Being back at SLCH always brings back so many memories -- good and bad. I was thinking how great it was that we are able to see so many specialists all in the same week and, at the same time, it makes me sad that Jack has to have so many specialists in his life. Moments like this always beg the question . . . HOW did I get HERE?

Jack was very serious for most of the day and he just looked at me with these apprehensive eyes. I think he is wondering what is coming next considering his last experience here. Tomorrow will be much tougher having to undergo anesthesia for the bronch. I'm sure he'll be scared wondering what they are going to do with him when he is under this time.

Jack's neurologist called me today because she is the one who ordered the sleep study and it seems we are "rocking the boat" because we have a sleep study scheduled following a procedure requiring anesthesia. This is against the "rules". But, true to form - we like to break the rules :-) Both Jack's neurologist and I think it will be fine, so she convinced them to let us go ahead with the sleep study. We have to check in at 5pm tomorrow for a 7:30 admit to the sleep study lab. I'm inclined to break the rules again. Why do we need to be there 2 1/2 hours early? In any event, I'm hoping to be able to use my computer while I'm spending the night with Jack in the sleep study lab. I'm not planning on sleeping, so I'll need something to help me pass the night away.

Thanks for checking in. Stay tuned ....

(Waiting for his Echo and EKG)

Monday, October 06, 2008


Jack's friend - Jack - stopped by for a visit today. These boys really enjoy each other's company.

The marathon of appointments starts tomorrow. Wish us luck!

Sunday, October 05, 2008

We Made It

Just wanted to let everyone know we arrived safely in St. Louis. Phew! Jack did great and Eric did awesome on the drive. We are all so happy to see Peg again - she is so good to us. It takes a very special person to allow a family of 6, plus a truckload of medical equipment to invade your home for a week. We are so thankful for Peggy and her husband for always opening up their home to us.

Tomorrow should be a relatively relaxing day. Jack and Eric will hang out with Peggy, Mark has to pick up the girls at the airport around noon and I'm heading down to Children's to have lunch with Jack's neurologist.

Thanks for all your thoughts and prayers as we traveled across country.

Saturday, October 04, 2008

Safely in Amarillo

We arrived safely in Amarillo and made good time. With the time change, it's two hours later than it should be, which means that tomorrow morning comes two hours earlier than it should. Mark and Eric are asleep. Jack and I are wide awake!

The day in pictures

Thanks so much for checking in.

Friday, October 03, 2008

This is painful

I forgot how much work is involved with these cross-country road trips. I was sick to my stomach yesterday when I started the process. I feel a little bit better today. There is just so much STUFF!

Then there is the other stuff I have to pull out and make available should the need arise. Like our Wills and life insurance information. I gave my sister a list of everyone she needs to contact if something should happen to us and, of course, I had to include information on how to update the blog :-) But rest assured, I'm not anticipating any problems - just covering all my bases. This will be our 6th St. Louis/Phoenix road trip since 2000, so I've pretty much got the routine down. It seemed so much easier when Jack was little.

That's all I've got for now. It's time to get the dog and the girls to my sister's house. Next update should be from Amarillo, Texas.

Just the electronics

This is about half the stuff we have to fit into the van

Thursday, October 02, 2008

18 Years Ago Today

I gave birth to my first child.

~ Hilary Ann ~

The day Hilary was born, I checked into the hospital around 7am to be induced. As soon as the pain became more than I wanted to bear, I got an epidural and delivered Hilary around noon. Piece of cake!

(My mom and Hilary. My mom was nurse manager of Labor & Delivery at the hospital where Hilary - and Mary and most my siblings' kids were born)

I returned to work after taking a three month maternity leave and Hilary went to Nanny Marlene's for child care. Our first year as new parents was fairly uneventful. Hilary was an easy and, in retrospect, quiet baby. When Hilary turned a year old, we had to find a new place for day care because Nanny Marlene only watched babies until they turned one. My Aunt said she would watch Hilary for us. About a month after my Aunt started watching Hilary, I got a phone call that rocked our perfect little world off its axis.

I still vividly remember the day my Aunt called me at work and told me - point blank - "I don't think Hilary can hear". I asked her why she would think that and she told me because just before she called me, someone had come to her door and the dog started barking really loud and everyone jumped, except Hilary. My Aunt noticed that Hilary never turned to see what the commotion was. After noticing that, my Aunt did the "banging of the pots" hearing test and, again, got no response. So, she called me.

I immediately made an appointment with my pediatrician. He tested Hilary's hearing by holding a bell by her ear and then watched to see if she would turn when he rang the bell. She did (because she could see the bell.) He said she could hear. My gut said she needed further testing, so I made an appointment with an ENT for a hearing test. I sat in the sound booth with Hilary on my lap and, to be honest, I had no idea what they were looking for, so when we came out of the testing I didn't have a feeling one way or the other if she could hear. Apparently, Hilary didn't do so well because the ENT ordered an ABR. I remember him telling me - "I think your daughter hears just fine, but let's double check for sure".

Hilary had her ABR in the afternoon as an outpatient procedure. After the test, the tech came out and told us that Hilary had a profound hearing loss in both ears. I felt like someone sucked the life out of me, right then and there. We left the appointment devastated and in complete shock.

The next day, I received a phone call at work from a woman with the Phoenix Day School for the Deaf Outreach Program. I laugh at myself now, but I told her that I wasn't sure that we would be needing their services because I hadn't yet received an official report from the doctor regarding the results of the ABR. The woman graciously didn't push and left me her telephone number in case I needed it. Little did I know that immediately after we left the ABR testing, they had called the Outreach Program based on the results. The following day, the same ENT who told me he thought my daughter could hear just fine, called to give me Hilary's official diagnosis: bilateral, severe to profound sensory-neural hearing loss. Hilary was deaf.

I picked up the phone and called the woman from the Outreach Program and, with defeat in my voice, said to her - "I guess I need your help".

A lot has happened over the last 17 years since Hilary's diagnosis. Initially, we all (my entire family, including my 70 year old grandmother) learned sign language. Hilary received homebound services until she turned three and then she attended Phoenix Day School for the Deaf preschool in their total communication program (both sign and spoken language).

Because Hilary's hearing loss was so severe, she received little to no benefit from hearing aids. After much discussion, Hilary received a cochlear implant when she was 4 1/2 years old. After being implanted, it became clear that the services Hilary needed to maximize the benefits of the cochlear implant did not exist in Arizona. I did my research and talked to other parents of children with cochlear implants and decided that we needed to move to St. Louis so that Hilary could attend the Central Institute for the Deaf - one of the best oral schools in the country and a place where a lot of research on cochlear implants was being conducted. Hilary would spend the next 6 years attending an oral school for the deaf. Hilary learned to "hear" with her implant, she learned to talk, and she learned to function (for the most part) in a hearing world.

Today, we celebrate 18 years of Hilary, in all her uniqueness. Hilary is very much an introvert and a loner and she is happiest being at home, in her room, pounding out a story on her laptop or drawing her latest cartoon. Hilary says she wants to be an animator. We aren't sure if traditional college is the place for Hilary because she sees most school work as a complete waste of time. Hilary has a gift for writing and drawing and hopefully, some day she will find her place in this world doing what she loves to do.

Happy Birthday Hilary ~ we love you!