Sammy Yammy and HoPE

1/2/06 – Happy 2006!  Sammy awoke on New Years Day to his usual morning greeting of “Good morning, young prince!”  I told him that this is a new year, and he will turn three years old in just a few months.  Preschool is just around the corner with new friends and new experiences.  January seems to be a month of reflection for us as we realize just how far we have all come since our ears first heard the word Holoprosencephaly.

1/4/06 – Sammy has been a feisty little guy these days.  Sammy is always just as sweet as he can be, but there seems to be a little edge to him this week–just a little hint of attitude!  I’ve been suspecting that some of his seizures and vomiting could be a form of communication and manipulation.  Today, he was in his crib appearing that he might vomit at any minute; yet, as soon as I picked him up, he was perfectly fine.  I held him on my lap for a while, and he was as content as he could be!  Upon further reflection, it seems as if his father pulls those same kind of tricks when we’re shopping at the mall!  A terrible stomach ache in the mall, but ready for a chili dog once we’re back in the car.  I think the apple doesn’t fall far from the tree!

1/10/06 – Do you remember where you were three years ago today?  Probably not.  Without double-checking my calendar, I might not even be able to tell you where I was two weeks ago, but I definitely remember where I was on January 10, 2003.  Steve and I were in an exam room awaiting the results of a high-resolution ultrasound, and that is the day when our ears first heard the word “holoprosencephaly”.  There are words and phrases from that conversation that still ring in my ears, but so much of it is now a blur.  What I mostly remember is the manner in which we were told, and we were so fortunate to have a physician who was honest yet compassionate.  Over the last three years, I have talked to many other women who have received the same diagnosis I did, and I know what to say to encourage them and give them hope, but if I had to be the person to actually deliver the diagnosis and brake the news to expectant parents, I’m not sure I would be up to that task.

As difficult and as heartbreaking as it was, my world didn’t come to an end that day.  In fact, that is the day when I truly became a “mom”.  In the beginning, I imagined how holoprosencephaly would define my child; now, I take pride in the fact that my Sammy is instead defining holoprosencephaly.

1/11/06 – Yes, we have seen the picture of the kitten.  My first thought when I saw the kitten was that he looked so precious and delicate.  The timing of kitty Cy is a little ironic in that many of the parents with children who have holoprosencephaly have been trying to raise public awareness about HPE through the sale of wrist bands.

With the help of two other moms, I am organizing and raising funds for an HPE Family Weekend that we are hosting in April.  One of the aspects of our fundraising involves raising awareness and sharing our stories.  Maybe little Cy will open some doors and some hearts as we try to teach our communities about our special children.

1/22/06 – It was a rough weekend for Sammy as he’s teething again.  This is the 3rd of 4 two-year molars, so we’re definitely nearing the home stretch as far as the teeth are concerned.  On Friday, Sam had a HIDA scan to check the functioning of his gall bladder.  A HIDA scan is a test involving nuclear medicine to diagnose obstruction, disease or bile leaks of the gall bladder.  We have been aware that he has had gall stones for over a year now, and he has been taking a medication to help dissolve the stones; however, it can take several months and years to completely dissolve the stones.  Every three months, he has a follow-up ultrasound of his gall bladder to check the number and size of the stones.  Yearly, the HIDA scan is ordered.  Last year, the results were very good; however, we suspect that the results won’t be as good this year because the bile didn’t empty from his gall bladder as quickly or as well as it should have.  We should hear from the doctor within the next few days, and we’re hoping that surgery won’t be required.

1/27/06 – It has been a busy and exhausting week for all of us at our house, and the month of February will be even worse!  As we inch closer and closer to Sam beginning preschool in early April, I’ve been trying to schedule many of his routine doctor appointments before he begins school, so Sam’s calendar for February is packed with appointments, therapies and activities all crammed into 28 days.  For a child who is immobile, he’s always on the go!

1/28/06 – After lots of speculation and countless inquiries from many people since Sam was born, it’s time to announce a new addition to our lives . . . a nonprofit organization!  (Although, now that I really think about it, our household could be considered “nonprofit”, and I only wish there were a little more “organization” around here.)

Seriously, I have been contemplating the formation of a nonprofit organization to address the needs of children with HPE and their families.  I have a heart for children with HPE, and I want to help their families find the various supports and resources that they need.  I’ve been doing a lot of research and talking with parents of children with HPE, and I have a committed team of parents who are ready to help me make the organization a reality.  Right now, we’re getting all of our ducks in a row, but it’s coming together!

2/3/06 – The results from the HIDA scan have revealed that Sam’s gall bladder needs to be removed.  He is scheduled for a surgery consult next Thursday, and it is anticipated that surgery will be scheduled right away.

2/12/06 – I apologize that I wasn’t able to post an update last week.  Sam had 5 doctor appointments, 2 therapies, a renal ultrasound, a sinus x-ray, and bloodwork.  Just to keep things interesting, he refused to sleep from Sunday through Wednesday.  I don’t know exactly what was going on, but he was definitely up to something!  Tomorrow, he has an appointment for an eye exam so I’m hoping that he will be awake and willing to cooperate.

The consultation with the surgeon was interesting.  We had been led to believe that Sam’s gall bladder needed to come out immediately and that there wasn’t much choice to the matter.  In talking to the surgeon, it’s not as urgent as we had thought.  We don’t have an exact date yet, but it will probably be scheduled for mid-March.  If it ends up being much later than that, his recovery may interfere with his ability to start preschool on schedule.  As of his third birthday, he will no longer be able to receive therapies through First Steps, so getting him started in preschool right away will be critical for him.

2/14/06 – Happy Valentine’s Day!  Sammy and I will be out and about on this Valentine’s Day.  I have been invited to share Sam’s story at a meeting today of the North Central Kiwanis Club.  Sammy will be going with me (along with a few butterflies) to assist me with my presentation.

Sammy had an appointment to have his eyes examined yesterday, and it is recommended that our little guy begin wearing glasses.  Personally, I don’t mind at all because I think children with glasses are just the cutest.

Sam was there for an eye exam, but he put on quite a little show while we were there which left me unable to believe my eyes!  Sam had been asleep when we first arrived for the appointment, but he awoke about 10 minutes after we arrived.  As soon as he was awake, I noticed that his breathing sounded strange, and he was making vocalizations around his trach which is unusual for him.  I did a few “tricks of the trade” to try to troubleshoot the problem without letting on to a waiting room full of people that something might be seriously wrong.  I recommended to Sam’s nurse that she should get Sam’s emergency trach ready because I thought we might need to change his trach quickly.  As she was getting it ready, Sam’s coloring became dusky and his monitor alarmed to tell me that his oxygen level had dropped.  Just as quickly as it had happened, he rebounded and pinked up again.

I immediately went to the receptionist and explained the urgency of the situation and asked for a private room where I could stabilize him.  The nurse and I moved quickly, and as I lowered the back of his wheelchair and was able to get a good look at his neck, I could see his trach just hanging there like a necklace!  It wasn’t in his throat at all, yet he was still doing okay.  I have no idea how it managed to come out on its own, and that’s only the second time it has ever happened in over two years.  Fortunately, Sam, the nurse and I all remained calm and worked together to avoid a catastrophe.  After we were finished, he was fine, and we were able to go back out to the waiting room again.  When it was all said and done, the nurse and I couldn’t help but to chuckle a little bit and wonder what kind of stares we would have received if we had remained in the waiting room and had 30 people witness our flurry of activity!  I can only imagine what would have been going through their minds!

2/20/06 – Sammy spent the weekend fighting off a cold.  He’s been coughing and has had a runny nose but hasn’t been feverish.  We’ve been giving him breathing treatments and are trying to stay ahead of things before it develops into a respiratory issue.

2/27/06 – The month of February was a very busy one for Sammy, and March is shaping up to be a busy one too.  On March 6, Sammy will have an evaluation for preschool to assess his abilities and determine his needs.  Please keep him in your prayers that he is awake and alert during the evaluation.  It’s not uncommon for him to pretend he’s asleep when there are unfamiliar people in his presence.  I sometimes wonder if that’s his way of expressing shyness?

3/12/06 – Sammy had his evaluation for preschool last week.  It took place at our house with five staff members from the preschool visiting for the evaluation.  Add a nurse, his physical therapist, and Mommy, and you have a room full of women!  Sammy was asleep when everyone arrived, and when he opened his eyes to see what all of the commotion was about, he thought he was in the middle of a Tupperware party, and he didn’t want any part of it!  He shut his eyes and wouldn’t open them again!

It was a rather tough week for us because Daddy was out of town for a few days.  Sammy was a good boy, but he definitely did not want to go to sleep.  Typically, he falls asleep within minutes while cuddling on Daddy’s lap in the evenings.  Every night while he was gone, Sammy would keep turning his head from side to side in an effort to fight sleep and stay awake until Daddy came home.  He definitely acknowledged that his routine had been changed.

3/15/06 – As Sammy approaches his third birthday on April 10, I find my thoughts reflecting back on the journey we have taken with him.  If I had been asked five years ago, “Where do you see yourself in five years,” my wildest imagination could never have predicted this adventure.  Now, I ask myself, “Where was I five years ago?” because so much has taken place in my life that it seems I can hardly even remember.  To jog my memory, I dug out an old journal from that time, and it all came back to me.  Five years ago, I was lost and seeking the Way.  Glory to God that I was found, and He gave me a purpose.  Over the past five years as I have been prepared and shaped by my experiences, that purpose has formed and revealed itself.

With Sammy as my inspiration and the Lord as my guide, I have recently formed a nonprofit organization known as Families For HoPE, Inc. to serve the needs of families and children diagnosed with holoprosencephaly (HPE), the congenital brain malformation with which Sammy has been diagnosed. Families For HoPE will eventually have a worldwide focus as HPE affects families and children all around the world.  The medical statistics tell us that a fetus with HPE has a 3 percent chance of surviving to birth.  Of the 3 percent who survive, very few of those infants live past six months of age.  That’s what medical statistics tell us; however, children with HPE don’t care about medical statistics!  Sammy is nearly three years old, and there are several children with HPE who are now in their teens and twenties.

HPE is a condition without a cure or a standard course of treatment. Treatment for HPE is symptomatic and supportive.  Children with HPE can have secondary conditions such as mental retardation, epilepsy, diabetes insipidus, pituitary and hormone disorders, movement disorders and spasticity, gastroesophageal reflux, respiratory disorders, and hydrocephalus.  Some of the children have some of these secondary conditions; however, many of the children have ALL of the conditions.

I am so thrilled to announce that Families For HoPE and the Carter Center at Kennedy Krieger Institute in Baltimore, Maryland are co-sponsoring the first-ever HPE Family Weekend & Conference to take place in Indianapolis on April 21-23, 2006.  St. Vincent Children’s Hospital is also generously lending its support through overnight accommodations for all of the families.  We are anticipating approximately 35 families from across the U.S. to attend this conference with at least 30 children with HPE ranging in ages from 1 to 21 who will come together with their families to celebrate life and be living proof that miracles can happen.  (There are many more children living with HPE than the 30 who will be attending; this is the first year for an event like this for our group, but we expect that it will grow tremendously over the coming years.)  Given the uncertainty of lifespan for any given child with HPE, this conference is a once-in-a-lifetime opportunity for many of these families.

In planning for the conference, we have had so many individuals, organizations and corporations who have offered their generous support.  It has been truly amazing, and I am so encouraged and inspired by that support.  Next week, Families for HoPE will be featured in a message on “Fuel For Living” by Rick Rogala which is broadcast on radio stations across the country, and in May, a Texas family who has a daughter diagnosed with HPE will appear on an episode of the ABC Network’s Extreme Home Makeover!  One of the goals of Families for HoPE is to raise awareness of HPE within the general public, so one little girl in Texas is doing her part in a very big way!

3/24/06 – On Monday, Sammy went with us to his preschool for a case conference to discuss the goals and the plan for when he starts preschool on April 11.  Sammy will be in a special needs preschool class, and he will follow a year-round school schedule.  He will start out going just three days each week, and he will have one of his home health nurses go to school with him to handle all of his medical needs while at school or riding the bus.  I have a feeling that the transition is going to much harder on Mommy and Daddy than it is on Sammy!

The plans are coming together nicely for the HPE Family Weekend & Conference which is now less than one month away.  There are a lot of things to do and projects to finish, but the planning process has been a lot of fun and very rewarding.  We are in need of volunteers to help in various ways on Friday, April 21 and Saturday, April 22.  If anyone is interested in volunteering at the event or in the days leading up to the event, please contact me via e-mail, and I would be more than happy to assign you to an open shift in our volunteer schedule.

3/27/06 – Today wasn’t a good day for Sammy.  It appears that he’s sick with a respiratory bug.  It has been nearly 18 months since Sam’s last illness, so we’ve been impressed with how long the healthy streak lasted.  He didn’t take a nap at all today, so hopefully he will sleep well tonight.

4/4/06 – Sammy is feeling better this week.  He starts his first day of preschool next Monday (also his third birthday), so all of his therapists with First Steps are trying to get their final therapy sessions scheduled because this is their last week with him.  It will be strange for us because 3 of the 4 of them have been coming to our home for Sam’s therapy 1-2 times each week for nearly three years.  The house is going to seem very quiet next week.

4/10/06 – Happy Birthday to Sammy!  Sammy celebrated his third birthday by making new friends at preschool!  After Sam was born and mothers with children diagnosed with HPE told me about their children riding the bus and going to school, I just couldn’t even fathom sending Sam to school!  Now, he’s a student and not a baby anymore.  Aside from a few trips in an ambulance and visits to the operating room, today was the very first time for Sam to go somewhere without Mommy or Daddy being right there beside him.  Do we really have to send him back to school tomorrow?!

Did everyone see Extreme Makeover Home Edition last night?  It featured the Craft family from Texas who has a 3-year old daughter, Isabella, with HPE.  The show did a very good job at describing HPE, and it was wonderful to have an opportunity to see Isabella and the other children with HPE on the show.  Our HPE Weekend & Conference is taking place in less than two weeks, so it will be very exciting to see nearly 25 kids with HPE all together at one time.

4/11/06 – On the second day, I sent him to preschool a boy, and he came home a man!  Sammy is using shaving cream now.  Actually, he just played in the shaving cream at school today!  Shaving cream has a very nice texture for tactile exploration, and let’s just say that Sammy explored all over his shirt, hands, and face.

4/16/06 – Our HPE Family Weekend & Conference is just a few days away, and I’ve made so many lists that I think I should create a table of contents just to keep track of all of my lists!

Families for HoPE and the HPE Family Weekend & Conference received a mention on the radio last week during the Wednesday, April 12 message of Fuel for Living an Extraordinary Life by Rick Rogala.  To listen to the mp3 version, click this link and look for “4/12 – Courage runs in the family”.  To listen to the mp3 from Sammy’s message, look for “8/3 – Quiet display of courage and faith”

4/24/06 – The HPE Family Weekend & Conference is complete, and we sure are tired!  It was a lot of fun, and we met so many amazing families just like ours.  Just to see 24 children diagnosed with HPE in one place at one time was an amazing sight.  There was so much strength and determination from the children and their families that one room could hardly contain it.

One of the highlights for me was to see a sweet little girl named Sage.  Sage and Sammy could almost pass for twins, and it gave me the opportunity to see what Sammy would look like with a pig tail and a dress!  I was so busy for a majority of the weekend, but in my little bit of downtime, I had a few hugs and cuddles with Little Miss Sage.

On Friday evening, we did a balloon release in memory of the children who have passed away due to HPE.  Each balloon had a tag tied onto it with the name of a child we were remembering and the contact info for Families for HoPE.  On Sunday evening, I received an e-mail message from a family in Lima, Ohio who found one of our balloons in their backyard on Sunday morning.  That little balloon traveled approximately 175 miles!

4/25/06 – Another balloon was found following our balloon release on Friday evening.  This one was found near Buffalo, New York.  It was Harrison’s balloon, and it traveled approximately 525 miles!

5/2/06 – Preschool seems to be going well for Sammy, but he’s having a difficult time getting into a routine.  He attends an afternoon preschool class because there weren’t any openings in the morning classes.  He typically naps in the afternoon, and he has been sleeping at school!  When he is awake at school, he seems to really enjoy preschool; however, it completely wears him out.  As soon as he gets home, he’s worn out and ready to fall asleep.  If he falls asleep after school, he will sleep into the evening, and then be awake all night and into the morning.  Because he’s been awake all night, all he wants to do is sleep in the afternoon while he’s at school!  He’s on a year-round calendar for school, so I’m hoping that we will be able to switch him to a morning class in July when the new calendar year begins.

5/9/06 – Sammy has had a wonderful week!  For the past couple of months, Sam’s neurologist has mentioned a new medication he would like to try to gain better control of Sam’s seizures.  With Sam making the transition to preschool, we were afraid to make any changes that might have an adverse effect, so status quo was the approach that we chose to take for the first few weeks of preschool.  Last week, I spent a lot of time doing my homework on the interaction between our brain, nerves, stomach, and intestines because my curiosity had been sparked by another little boy with HPE who has a lot of stomach issues and has recently begun to have seizures.  His GI doctor prescribed a medication that isn’t typically thought of as a treatment for stomach issues, but it is helping his stomach.  Ironically, this little guy’s parents have been conversing with us for the past year to help answer their questions and guide them on a few issues related to HPE; now, they’re taking the lead on this one, and we’re seeking guidance and answers from them.  (That’s why the community of HPE families is so vital and important!)  Through my research and homework into the brain, nerves, and stomach, I came full circle when I discovered that the conclusion to all of my research led me back to the medication the neurologist had been telling me about!  Of course, I had to take the hard and winding road to get there, but I now have confidence in trying the new medication on Sam!

Sam received his first dose of the new medication on Saturday evening, and so far, we have seen major improvements.  On Monday and Tuesday at preschool, he was awake the entire time, and he was able to participate in all of the activities.  He still had some seizures which is to be expected because that is a part of Sam, but in the times between the seizures, he was calm and alert!  In the past few days, we have seen a Sammy that we haven’t seen in over a year.  I think he has spent the past year feeling nauseous, and this new medication is helping to take that feeling away.

5/16/06 – Sammy is still responding very well to the new medication.  The only adverse effect we’ve noticed so far is that he is having trouble staying warm.  A few warm, sunny days would be helpful!

5/21/06 – On Friday night, Sammy went to his very first school carnival!  As I pushed his wheelchair into the building, it was obvious that he knew where he was.  When we left the carnival, I think he was confused because he was expecting to go to his classroom and stay there a while.  On the drive home, he kept turning his head from left to right over and over again which is what he does when he’s not happy about something!

Sammy went to the park on Saturday, and he enjoyed himself.  His favorite thing at the park was the teeter-totter which was his favorite thing last summer too.  There was a little girl at the park who wanted to share the teeter-totter with Sam, and he smiled the entire time he was riding on it with her!  Later, she tickled him under his chin, and he just smiled and smiled at her!  Apparently, Sammy went to the park to pick up girls!  Smiling is such a big event for us because Sam typically doesn’t smile.  Since he began taking the new medication two weeks ago, he has been smiling so much!  And, when Sammy smiles, we all smile!

5/25/06 – I received a report that Sammy may have caused some trouble at school on Monday!  All of the students in his classroom were playing with uncooked rice at the sensory table.  Their teacher instructed them that they were not to throw the rice, or they would have to go sit on the carpet and wouldn’t be able to play with rice anymore.  Who was the first one who threw rice on the floor?  Our Sammy!  And, after it had been cleaned up, do you know what he did?  He did it AGAIN

It might sound strange for us to say this, but we’re so proud of him!  Just to be able to close his fist around the rice is a major accomplishment for him.  We take for granted that our bodies just naturally do all of the things that we do, but for Sam and other children like him, it requires so much work and effort just to do those basic things.  Of course, Sammy didn’t get into any trouble for throwing the rice onto the floor; instead, he was encouraged to keep doing it because that is huge progress for him!  He is definitely full of surprises these days, and as you can tell, it’s the little things that make us happy!

 

 

10/27/06 – Our trip to Florida was a great success!  Sammy was such a good boy on our trip, and the Florida weather at this time of year definitely agreed with him. He typically has 30 or more seizures each day, and there was one day when he had only 5 seizures!

He tolerated the plane ride very well. On the way there, he slept throughout the entire flight. On the flight back, he was awake throughout the entire flight, and he handled it like a seasoned traveler.  We flew on Delta because they are one of only a few airlines which provides oxygen to passengers, and everyone at Delta was great.  Airport security was great with Sam and they made sure that I was always watching and comfortable with everything they needed to do in order to inspect his equipment, his wheelchair, and his clothing.

We stayed at Give Kids The World Village, and it is as awesome as everyone had told me. I’ve been trying to think of something more that they could have done, but I honestly can’t think of a single thing . . . they have thought of absolutely everything and they do everything so well!

Sammy was a very good boy throughout the entire trip, but he did have a tendancy to keep his eyes closed a lot at the amusement parks due to so much stimulation. We tried to keep a hat and sunglasses on him in case the sunlight was too bright for his eyes, but even then, he kept his eyes closed a lot. As soon as he would cross through the exit of a
park and the stimulation was reduced, he would open his eyes again. Of course, he was more than willing to open his eyes for Arial and Snow White despite the over-stimulation!

We spent two days at Universal Studios, one day at Epcot, one day at the Magic Kingdom, and one day simply relaxing at GKTW. We didn’t make it to MGM or Sea World; there just wasn’t enough time or energy for everything.  Overall, we enjoyed the opportunity to take a family vacation and experience something that we would have never been able to do on our own with Sam.  We are so grateful to Make A Wish of Central Indiana and Give Kids The World for making our memory-making trip possible.

11/2/06 – Sammy had a nice Halloween this year.  He dressed as a fireman, and we took him to the mall for trick-or-treating.  He looked very cute in his fireman coat and hat while carrying his little plastic ax.  Trick-or-treating after dark with a wheelchair in cool, damp weather just isn’t much fun, so the mall was the perfect, climate-controlled choice for us.

11/26/06 – It was a very nice Thanksgiving for Sammy this year.  He especially enjoyed having additional family members around to cuddle with him and give him extra attention.  On Friday, we took Sammy to see “Happy Feet”, but he fell asleep during the previews and didn’t wake up until the movie was over.  It was very interesting for Steve and I because at times we could see ourselves and Sammy in the characters of Mambo and his parents.

12/19/06 – “All I want for Christmas is my two front teeth . . . ”  Well, sort of.  Sammy is teething with what we believe will be the last tooth to come in.  In keeping with his tradition of doing things backward, he is cutting his front tooth last–the maxillary central incisor.  The interesting thing about this is that Sammy has only one maxillary central incisor, and dental x-rays seem to confirm this.  As we learned during genetic counseling nearly four years ago, a single central incisor is a marker for HPE.  At your family gatherings over the next few days, you’ll be staring at everyone’s teeth, won’t you?

12/28/06 – Sammy had a nice Christmas.  He was showing symptoms of an illness a few days before Christmas, but all tests were negative, and he rebounded quickly from whatever it was.  Of course with another holiday approaching, he’s begun sneezing quite a bit, and we suspect that he may be coming down with a cold.

12/30/06 – Sammy is definitely sick.  It’s not too serious yet, but we’re taking preventative measures.  He’s warm but not feverish; he’s sleeping a lot; and he’s absolutely pitiful when he whines.  Sammy’s nurses are working hard to keep up with him by giving him breathing treatments, doing percussions on his chest and back to keep things loose in his lungs, and to keep him turned frequently so that nothing settles into his chest.  We’ve had to give him more oxygen than usual, and we’ve added an additional nursing shift for a few days to make sure that we all stay on top of everything to get him through this.  So far, it seems as if it is just a bad cold, but with Sammy, things can change quickly.  Sammy’s grandpa is in the hospital right now recovering from a surgery to his neck/upper spine, so everyone is keeping a close eye on Grandpa and Sammy.

1/3/05 – We are seeing an increase in seizure activity, and we don’t know exactly why.  We suspect that his new formula might be the main culprit at this point, so we’re making modifications to see if the number of seizures decrease.  It’s been a long two weeks of watching him battle through the seizures, so we’re really hoping (and praying) that some of our recent adjustments will make a positive difference soon.

1/6/05 – Our modifications to Sam’s formula seem to be working because he’s had two great days with minimal seizures, and we’re starting to see the old Sammy again!  He did a good job in therapy today, and he seemed to enjoy being able to get back to his usual routine again.  Now that he’s feeling better, he may be able to start working on his Sammy Yammy artwork again soon!

1/8/05 – Sam is doing so much better!  He has been able to string together several good days in a row.  If all goes well, Sam is scheduled to make a public appearance on Sunday, January 16.  He has been asked to be a participant in our church’s “Sanctity of Life” rose ceremony, and he would be thrilled to have some friends in attendance.  If you would like more information or directions to the church, please send us an e-mail message.

1/10/05 – Today is a significant day for our family.  Two years ago today, we heard the word “Holoprosencephaly” for the first time, and that word changed our lives.  What an amazing journey it has been so far! 

1/13/05 – The new year is bringing new changes.  We have been praying that the new year would bring a new job for Steve, but so far, nothing yet.  We received a phone call from our insurance company yesterday informing us that Sam’s in-home nursing hours are being reduced effective immediately.  Sam will continue to have nursing coverage at night 7 days a week; however, he will only have a nurse during the day four days per week.  Sam has been doing better as far as seizures go, so we were expecting that the reduction might happen eventually.  Although it’s not the safest thing for us to do with Sam having seizures and a trach, Sam and I may have to travel in the car on our own without a nurse at times.  It just means that I will need to be prepared to pull over to the side of the highway at a moment’s notice in the event that Sam needs to have his trach suctioned or has any type of distress.  Right now, Sam is still covered under insurance; however, he has secondary coverage through a Medicaid Waiver due to his disability.  Each day that we read the newspaper and read about the potential cuts to Medicaid, it frightens us that some of Sam’s services may be cut.  But, the Lord always provides, so we just keep our eyes firmly focused on Him.

1/16/05 – Sam went to church today, and we were so proud of him as he had an opportunity to serve in our church for the very first time!  We even braved the snow-covered highway because we didn’t want to miss it!

1/20/05 – Our little Sammy is just full of surprises!  On Tuesday, Sam had a follow-up appointment with his urologist and a renal ultrasound to check out his kidneys and bladder.  His kidneys and bladder looked good; however, the ultrasound revealed 3-4 small stones in his gallbladder.  In the short-term, his GI doctor is prescribing a medication to help dissolve the gallstones.  Next Friday, Sam will have a test called a HIDA scan which will give us a better idea of the condition of Sam’s gallbladder and/or any obstructions.

1/23/05 – It was a quiet weekend around our house, and that’s just the way that we like it!  It looks like Sam may be growing again because he’s been sleeping a little more than usual. 

1/26/05 – It was a rough evening for us tonight as Sam put us through our paces.  He woke from his nap, and his temp began rising quickly.  He also was kicking his left leg and moving his arms a lot which are pretty uncommon for Sam, so we suspect that he may have had abdominal pain related to gas or possibly his gallbladder.  Motrin seemed to help with the fever and the discomfort.  Hopefully, we will find out more on Friday after he has the HIDA scan of his gallbladder.  A few prayer requests:  Getting an IV into Sam is next to impossible, and he must have one on Friday when he has the HIDA scan.  Also, that the HIDA scan shows that Sam doesn’t need surgery.  Steve is still seeking employment, so we ask for prayers that a job offer will come soon.  For me, I can feel growing anxiety within myself each time I read the newspaper or watch the news because I’m so concerned that Sam will be negatively affected by the changes to Indiana’s Medicaid program.  I keep trying to remind myself of what Jesus taught in Matthew 6:34, “Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own.”  Amen–it sure does!

1/28/05 – Sam had his HIDA scan today, and it went very smoothly.  Because we anticipated that starting an IV would be so difficult, we made prior arrangements at the hospital through the Patient Services Department.  They took one look at his veins, and decided that they truly did need to call in the experts.  The Children’s Hospital ER wasn’t overly crowded, so the ER staff said that they would give it a try.  Apparently, they weren’t informed in advance that the patient was the “infamous Sam”!  As we approached the nurses’ station with Sam, we couldn’t help but chuckle when one of the nurses looked up and realized that her patient was Sam and said, “Oh no, not Sam!” because she knows how impossible the task is.  We were relieved when we saw her because she’s one of the best when it comes to IVs, and she was our heroine again today because she managed to get the IV started!  Sam was very brave, just like always.  After that, the test itself was a piece of cake.  Hopefully we will hear the results early next week.

1/31/05 – We had a nice weekend, and Sam, Mommy and Grandma even ventured out to Target so Sam could pick out Valentine cards for his nurses and therapists.  Today, Sam went to the Home Show, and we met a very nice gentleman there who has a trach like Sam.  He told us that he’s had a trach since 1988, and at that time, his doctors told him that he wouldn’t live more than 5 months.  I guess he proved them wrong!

2/2/05 – The results from Sam’s HIDA scan came back, and his gallbladder is functioning normally.  Most likely, the gallstones have formed due to anti-seizure medications that are metabolized through his liver.  Sam will continue to take the medication to dissolve the stones, and he will have ultrasounds every three months to keep an eye on his gallbladder.

2/6/05 – Teething . . . will it ever end?  Sam had a tough weekend battling through rounds of seizures as a result of teething pain.  Over the course of the weekend, he managed to single-handedly kick the butts of Mommy, Daddy, two nurses, Grandma and Grandpa!

2/10/05 – Sammy is 22 months old today!  Can you believe that he’s almost two years old?  Since Sam likes to do everything opposite of what is typical, we’re hoping for “Terrific Twos” from him rather than “Terrible Twos”.  Speaking of terrible . . . it’s been a rough week.  Sam does indeed have a new tooth (his 12th), but there may be another one working because the teething symptoms continue.

2/14/05 – Happy Valentine’s Day!  Each day has gotten a little better since Friday.  Sam’s neurologist increased the dose on one of his seizure medications, and that has definitely helped reduce the seizures; however, Sam’s a little too sleepy now, so more adjustments are necessary.  We had a wonderful day at church yesterday.  Sammy was a greeter and helped welcome visitors for Special Needs Awareness Sunday.  The entire service was devoted to disabilities and special needs, and it was a very moving and uplifting morning.

2/18/05 – Mommy, Daddy, and Sammy took some time out yesterday to go to Sammy’s first movie.  Sam usually naps in the afternoon and wakes up around 3:00, so we planned to take Sam to see the 3:15 showing of Pooh’s Heffalump movie.  Sam decided that he would break from tradition and stay awake the entire day–until 3:00!  Because he was asleep when we arrived at the theater, and we assumed that he would take a long nap, we decided to skip Pooh and watch something else instead.  Of course, by the time we purchased our tickets and soft drinks, Sam was awake again, and he stayed awake for the entire movie!  I guess he will go back to see Pooh next week.

2/21/05 – Sam had a nice weekend and was full of smiles on Sunday.

2/24/05 – It has been a great week for Sam.  He’s been in a wonderful mood, had minimal seizures, and has had great therapy sessions this week!  Sam’s therapies are provided through Indiana’s early-intervention program, First Steps.  First Steps has been extremely vital to us because Sam’s therapists have taught us how to work and play with Sam to help with his development.  When parenting a special needs child, there are just certain things that don’t come naturally or instinctively without training or education.  Sam’s therapists have been wonderful in making suggestions and helping us create ways to engage Sam’s interest and encourage him to do things that are difficult for him.  It is sad to say, but Sam rarely moves his arms or hands on his own without intervention.  Mostly, his arms just flop to his side.  Yesterday, Sam fingerpainted with his developmental therapist during her session with him, and afterward she suggested cleaning his hands with a piece of ice to introduce a different sensory feeling to him.  He definitely responded to the ice in a bowl, and he very purposefully pulled his hand away from the ice each and every time he touched it.  Finally, he began to slowly bring his hand down to touch it on his own, and he would pull his hand back on his own using his own muscles.  Without the therapist, I would have just wiped his hands, and I wouldn’t have thought about using a piece of ice to illicit Sam’s movement and help him to grasp cause and effect in that way.  If you watch the news or read the newspaper and you see reports on funding or cuts to First Steps, please remember Sam because his therapies are so important to his every day life.  Without those therapies in the early days with Sam, we would have been completely lost on what to do to help him from a developmental standpoint.  When people tell us what great parents we are to Sam, it’s because we’ve had great therapists who share their knowledge and expertise with us and because we’ve been willing to learn from them.  I guess it goes back to the old adage, “God doesn’t call the qualified; he qualifies the called.”

2/25/05 – Today is an exciting day in the HPE world.  I connect online with a group of families who have children with HPE, and one of the moms has been working very hard to put together an online newsletter for other HPE families.  Today marks the kick-off of the site.  If you would like to read more about HPE and the other children who are inspirations to our family, you can check out the newsletter at http://www.hpequarterly.net.

2/26/05 – Sam had a fun day out today.  We went to Miss Norma’s to visit her at her house, and Sam really seemed to appreciate a new environment.  When we first arrived, he looked around and seemed to check things out.  Then, he allowed himself to get comfortable and took a nice little nap.  Before we left, Sam was able to see Miss Norma’s snowman room, and he definitely enjoyed looking at all of the various snowmen all around the room along with the snowflakes stenciled on the walls.

2/28/05 – Sam was on the go today.  His morning started with an appointment with his neurologist.  We’re going to continue to try to wean him off of one of his seizure meds, so that’s a little progress.  In the afternoon, Sam had an appointment with his dentist.  He had his teeth cleaned, and the dentist said that his teeth look great.  I was expecting that the stimulation around his mouth might cause him to have a seizure, but he seemed to enjoy the toothpaste and didn’t mind the cleaning or the exam.  Wow; what a difference a year makes!

3/1/05 – Sam had an awesome day!  His morning began with an hour of physical therapy, and he worked very hard.  At one point, Sam was on his knees while leaning forward and bearing weight through his arms, and at the same time, he was holding his head up on his own for almost an entire minute.  Typical children are doing that around the three month-old stage, but with Sam, we go at his pace.  After therapy, we spent some time playing together on the floor, and then he spent an hour in his stander playing with a toy.

3/9/05 – Not too much to report recently.  Sam is doing well and staying busy with therapies.  It’s been quiet and boring–just the way we like it!

3/14/05 – Sam has a tummy ache today.  It started yesterday, and he vomited this morning.  We’re keeping a close eye on him and trying to give him extra fluids.  Evening follow-up:  Looks like the symptoms could be from teething because we found another tooth coming in tonight.

3/16/05 – Sammy was full of smiles today!  He has discovered the “Hokey Pokey”, and he thinks its fun to bounce around and be treated like a typical little boy.

3/17/05 – Happy St. Patrick’s Day!  Sammy had fun in therapy today.  With the help of Daddy and Sam’s nurse (Gary), Sammy stretched out on a big piece of spandex and was able to be swung back and forth for as long as everyone’s arms and shoulders could take it.  Then, he spent some time playing in a ball pit which he enjoyed too.

3/20/05 – Yesterday was a very eventful day.  The morning began with a group of teens from our church visiting to help us tackle various projects around the house.  Outside, they trimmed tree branches and seeded and rolled our lawn.  Inside, they sorted and organized all of Sam’s baby clothes and cleaned Sam’s room and all of his toys.  In addition, they also helped me get a great start on a scrapbook that I’ve wanted to create for Sam with pictures of all of his friends who have HPE.  They also rag-painted Sam’s bathroom and stamped frogs all over the walls.  Frogs have become the unofficial mascot for HPE children after one of our boys grew to love “Five Green and Speckled Frogs”.  Frogs also have very significant meaning to many of the mothers of HPE children as we “Fully Rely On God”.  Under each of the stamped frogs, the teens wrote a name for each of the HPE children of whom we are aware.  The bathroom is just perfect now!  Just when we thought the day couldn’t get any better . . . Three hours after the teens left our house, we lost electricity to our house.  One of the nearby neighbors was cutting down a tree, and somehow knocked out power lines, a pole and a transformer.  Crews worked all night to restore power early Sunday morning.  In the meantime, Sammy had his first overnight at Grandma’s house!  We managed to gather all of his supplies and equipment before it became too dark, and we headed out to Grandma’s with our van packed full.  Sam’s 5-year old cousin was also spending the night with Grandma, so that made the evening even more special for Sam.  Even the nurse came along with us to Grandma’s house!

3/21/05 – As much as I want this website to be about Sam, I want to share something today that strongly influenced my personal outlook on Sam’s life.  The battle over Terri Schiavo’s life breaks my heart because Terri and Sam have many, many things in common–one of them being that both are severely brain damaged.  Please click on this link and read an excerpt from “The Power of the Powerless” by Christopher de Vinck.  Within the past week, I have also encouraged each of my legislators to read this book.

3/23/05 – It’s been a rough week for Sammy.  He’s teething again, and he’s been seizing up a storm for the past few days.  This morning, his night nurse, his day nurse, Mommy and Daddy all gathered around Sammy for prayer, so we’re all hopeful that today will be a better day for him.  On a side note, Sam made the newspaper today.

3/25/05 – The teething and seizing cycle continues.  We consulted with Sam’s neurologist and dentist last night because Sam isn’t sleeping.  They prescribed Tylenol with Codeine for pain, and that seems to be helping a little.  From what we can tell, it looks like he’s working on four molars all at once.  Maybe we should freeze some marshmallow Peeps and rub those on his swollen gums!

3/27/05 – Happy Easter!  Sam seems to be a little more comfortable with pain medication, but he’s still having a lot of seizures.  He calms down when we’re rubbing his gums, so we’re still convinced that it’s just teething that is causing him so much discomfort.  It has been a long week!

3/30/05 – Sam’s little mouth is just a mess, and he’s still very miserable.  We even took him to the dentist this morning to see if there was anything that could be done to give him a little comfort.  I think his favorite part of the visit was having so many pretty women all gathered around giving him so much attention!

4/4/05 – The teething continues, but it has eased a little.  One of his upper molars has almost completely broken through his upper gum, so we know that he’s making progress.  Sam’s birthday is on Sunday (April 10), so we are busy this week getting ready for Sam’s second birthday party!  We decided to keep it small this year, and we’ve invited a few boys who are Sam’s age.  Sam is having a Super Hero party, and we have invited the boys to wear super hero costumes.  It should be very cute and make for some very nice memories.

4/7/05 – Sam is a little sleepy head today, so we hope he’s getting all rested up and ready for his big weekend.  I’d rather not admit this about my sweet little Sammy, but he’s really grumpy lately! 

4/9/05 – Today was Sam’s birthday party!  All of the little boys were so cute in their Super Hero clothing.  There were no evil villains lurking around, so a good time was had by all!

4/15/05 – Sam is feeling much, much better this week!

4/18/05 – Today was a busy day for Sam with two doctor appointments.  Because Sam tolerated the wean down from one of his anti-seizure medications, we’re now attempting to wean him down from another one slowly over the next eight weeks.  It is one that he’s been on since the day that he was born, and sometimes it reaches a point where anti-convulsants can actually cause seizures.  We will take it one day at a time and see how this goes.  He also saw his developmental pediatrician, and it has been determined that Sam is getting too big for his britches, so to speak!  Because Sam is not walking and moving around to burn calories like a typical child, his weight is beginning to work against him.  The fear is that Sam’s weight and the low muscle tone in his trunk will make breathing more difficult and as a result put additional stress on his heart.  Sam has an apnea monitor and an oximeter which display his heart rate, respiration rate, and oxygen saturations.  Over the past few months, we have definitely seen a trend of more frequent apnea alarms and lower heart rates, especially when he is asleep.  Right now, we have a plan to help slow his weight gain and the progression of negative effects to his lungs and heart.  We have always been very realistic of the uncertainty of Sam’s longevity; however, we’re all terminal when we get technical about it.  As we sang “Happy Birthday” to Sam last week, we couldn’t help but to tack on the three little (yet so important) words at the end, “. . . And many more!”  Of course at our house, we try to live each day as a celebration because that’s exactly what each day is for us.

4/20/05 – Sam had a great day today, and he spent the evening in Grandma’s arms watching the Pacer game.  Sammy’s Grammy and Grandpa have been Pacers fans since the balls were red, white and blue.  That’s Grandma’s idea of the perfect day.  (Actually, the perfect day would be Sammy and his Grammy watching a Pacers game in person.)

4/25/05 – Sam had a dentist appointment this morning to check on the status of his teething.  Over the past few weeks, we have noticed that Sam has been biting the inside of his lips because his canine teeth are so sharp.  The dentist put a cap on them to make them a little smoother and less painful.  Sam has been experiencing a lot of changes recently.  Sam moved from his crib into a “big boy bed” last week.  Mommy has an opportunity to work part-time from home, so we moved his crib next to her desk so that she can keep an eye (and a hand) on Sammy during the day while he’s napping and she’s working.  Nurse Gary (aka Sam’s Man Servant) has left us to take a job in the ER at Community North, so that will be a transition for Sam (and for us).  We have several new nurses orienting with us now, so we’re hoping that Sam warms up to them quickly and that his medical needs aren’t too overly intimidating for them.

4/28/05 – Hi, it’s me Sammy!  Did you know that today is my daddy’s birthday?  If you see him, don’t forget to wish him a happy birthday.  He didn’t wear his Mr. Incredible costume for his birthday like I did for mine, but he didn’t have to because I think he’s incredible all the time. 

5/4/05 – It looks like Sammy’s schedule is going to get a little tighter for the next few months.  Because we’re hoping to build more muscle tone in his trunk/torso to facilitate deeper breathing for him, it appears he’s going to get approved through First Steps for physical therapy twice each week.  Right now, it is only once per week, so we’re going to see if increasing PT to twice a week makes a difference.  It’s something that we’ve been praying about in light of the conversation with Sam’s doctor about his breathing and heartrate issues.  Sammy has a new little friend in Kansas City whose parents found Sam’s website while researching holoprosencephaly.  His name is Afton, and he was born one month ago today!  Afton is still in the NICU, but it looks like he will be going home very soon.  Sam would appreciate your prayers for his new friend because we all know that there’s no place like home.  It sure would be a nice Mother’s Day gift for Afton’s mommy.

5/9/05 – Answered prayers . . . Sammy has been approved for an increase in PT to twice a week, and Afton spent Mother’s Day at home with his mommy!  On Saturday, Sam and I (and Sam’s nurse, Teresa) were invited to a garden party/luncheon.  It was a very nice afternoon for Sam as he helped plant a pot of flowers and spent some time outside.  He was also serenaded by nurse Sharon as she played her flute for him.

5/10/05 – Sam had a great day today!  He had physical and vision therapies today, and he was an All-Star doing some really good work during both therapies.  We’re praying for nice weather for the weekend because we’re hoping to venture out to the Zoo on Saturday!

5/11/05 – Another great therapy session!  Sam had developmental therapy today, and he really enjoyed it.  With the nice weather, he was able to go outside in the yard for therapy.  He played with bubbles, and he jumped whenever the bubbles would pop on his skin.  He also stretched out on a blanket to feel the uneven ground beneath him, and he felt the grass on his skin.  We have little “helicopters” falling out of our maple tree, so he watched those swirling through the air and landing all around him. 

5/16/05 – Sam is doing great, but we need a few extra prayers this week.  On Friday (May 20), Steve and I will be celebrating our 10th wedding anniversary.  We have made arrangements to spend the night at a local Bed & Breakfast, and we’re very nervous about it because this will be the first night we have been away from Sam since his very first discharge from the hospital back in August 2003.  We have nurses scheduled to be with Sam around the clock while we’re gone, and Grandma and Grandpa are going to be here while we’re gone to help the nurses in case something comes up.  We need prayers that Sam behaves himself and stays healthy, and also that Mommy and Daddy can be as anxiety-free as possible!

5/19/05 – Sammy supervised Daddy and Aron (our Little Brother) while they planted our garden yesterday.  Because we live in Steve’s grandparents’ former home, it’s really special that Sam can be in the same backyard where his daddy played as a child, and Steve has many memories of the huge garden that his grandparents had each summer. 

5/21/05 – We had a very nice time away for our anniversary, and Sam was just as perfect as he could be!  We stayed in Zionsville at Country Gables Bed & Breakfast, and it was so lovely to awaken to the morning sunshine and the singing of birds outside in the trees.  It couldn’t have been more perfect for us!  Of course, we missed Sam very much, but we hope to take him there on our next visit.  We often joke that Sam thinks the hospital is a “hotel”, so maybe we need to schedule a few days to let Sam experience a real “vacation” in such a warm and cozy environment.  Also, we were so surprised and humbled to discover that our bill at the bed and breakfast had been paid in full prior to our arrival by some wonderful friends of ours.  Our family has been so blessed by the support and love shown to us by all of our friends over these past few years.

5/28/05 – Sammy had the best day yesterday!  He was full of smiles all day long.

5/31/05 – The two-year molars have arrived, and surprisingly, they’ve not been as painful as the one-year molars.  Of course, the one-year molars just finished coming in last month!

6/1/05 – Sam had speech therapy this morning, and he was thrilled.  Miss Shelley, his speech therapist, spent extra time massaging his gums and stretching his facial muscles which are sore from teething.  Nurse Teresa capped that off with giving him a nice bath complete with hairwashing and a head massage.  Let’s just say that Sam enjoyed his morning of pampering at the “Day Spa”!

6/3/05 – Sammy and Mommy are sharing a special evening out tonight.  We’re traveling to the RCA Dome for the Beth Moore event.  The RCA Dome is definitely outside our comfort zone with Sam, so we’re praying for the Lord to orchestrate a smooth and enjoyable evening as we make our way through a building filled with 20,000 people.

6/4/05 – Sam has always been a fan of Dr. Seuss’ “Green Eggs & Ham”, but we’ve been having one of those “Oh, The Places You’ll Go” kind of weekends!  We opened the newspaper this morning to find a photo taken on Friday night of Sammy and Daddy on the front page of the Metro & State section of the Indianapolis Star.  As a family, we attended the Living Proof Live event, and Sam made a lot of new friends.  Several people stopped to ask about Sam, and a few even asked if they could lay their hands on Sam and pray over him.  (Of course, we let them!)  Sam also made friends with one of the project coordinators of the event, and she helped to coordinate a special opportunity for Beth Moore to meet Sam on Saturday morning.  With tears in her eyes, Beth told us what a privilege it was to meet Sam and to have the opportunity to pray with us.  (Sam also met Travis Cottrell who does an outstanding job at leading the praise team!)  Later in her message to the attendees, Beth made a specific mentioning of Sam which warmed our hearts as she quoted from Psalm 126.  “Those who sow in tears will reap with songs of joy.  He who goes out weeping carrying seed to sow, will return with songs of joy, carrying sheaves with him.”  In 2001, Beth Moore led me to find my faith in Jesus Christ through Bible study materials she had authored.  In 2003, Jesus Christ led me to Sam, and today, Sam, Steve and I share our story with the hope that others will seek to discover the hope of Jesus Christ in their lives as well.

6/11/05 – Sam was a traveling man today as he went to McCormick’s Creek State Park in Spencer, Indiana for a family reunion.  He fell asleep in the car on the way there and napped through the reunion, but at least he made an appearance.  He also had the opportunity to visit the Nature Center and even hiked a trail with Daddy pulling him in his wagon.

6/14/05 – Sam had a good day today.  His neurologist prescribed a new anti-seizure medication for him at his Monday appointment, so we’re giving it a try.  It has only been two days, but so far, so good.  He had back-to-back therapy sessions today with physical therapy followed by vision therapy, and he did very well through both sessions.  If he seems to be doing well on the medication after two weeks, we will begin trying to wean another seizure med.  His neurologist also mentioned the Vagus Nerve Stimulator that we had looked into last year, but we’re not sure that we want to go that route.  We told him that we’d pray about it.

6/17/05 – We had a great day today.  Mommy and Daddy took Sammy out for brunch, and we followed that up with a trip to the park.  It was a day of firsts as Sammy played at the playground, and Daddy helped him go down the slide.  Then, Sammy helped to fly a kite.

6/20/05 – Sammy has a friend (Ryland) who lives in South Dakota.  Ryland has a website like Sammy, but Ryland’s computer quit working and now his mommy can’t update the website or talk with other parents in our HPE family for advice and support.  Sammy was wondering if any of his online friends might have a used PC to donate to Ryland’s family.  Because of Ryland’s HPE, his mommy had to stop working when Ryland was born, money is very tight for them and they can’t afford to buy a new computer.  If someone has a used PC for them, we will find a way to get it to Ryland’s family.

6/22/05 – The new anti-seizure medication seems to be doing wonders for Sam.  Since he began taking it, he is definitely more alert and aware of things going on around him.  We won’t be talking to Sam’s neurologist until next week, but we’re tempted to call him now just to let him know what a huge change we’re seeing in Sam.

6/23/05 – Sammy has discovered dirt!  During therapy today, he played in the garden.  He pulled up an onion, and then he quickly planted it back into the ground while Daddy wasn’t looking!  He also had a creepy, crawly worm on his hand that tickled when it moved.  Sammy even cleaned up outside by washing his hands in the cold water from the garden hose.  Brrr!

6/25/05 – Breaking news – Steve Harley Comes out of Retirement.  Sources close to the Harley family have reported that an era has ended and a new one has begun.  After a year of resume updating, networking, and pavement pounding, all of the patience has finally paid off!  When asked how he has managed to remain positive in light of adversity, Mr. Harley responded, “Humility, maintaining a sense of humor, and keeping my eyes on Christ”.  (Aren’t you glad that the breaking news wasn’t the fact that he just saved a bunch of money by switching to Geico?!)

6/26/05 – A mama dog and her puppy found their way to our front door today.  They need baths, but they’re both very friendly.  Daddy says that Sammy can’t keep them, and he delivered flyers to homes in our neighborhood.  One of the neighbors has expressed an interest in taking both dogs if we cannot find their owners.  With the weather being so hot, they were both a little lethargic until we gave them some water and food.  Seeing them both so tired and needy, reminded me of Hagar and Ishmael after they were sent off into the desert.  Early the next morning Abraham took some food and a skin of water and gave them to Hagar. He set them on her shoulders and then sent her off with the boy. She went on her way and wandered in the desert of Beersheba.  When the water in the skin was gone, she put the boy under one of the bushes.  Then she went off and sat down nearby, about a bowshot away, for she thought, “I cannot watch the boy die.” And as she sat there nearby, she began to sob. God heard the boy crying, and the angel of God called to Hagar from heaven and said to her, “What is the matter, Hagar? Do not be afraid; God has heard the boy crying as he lies there. Lift the boy up and take him by the hand, for I will make him into a great nation.”  (Genesis 21:14-18)

6/30/05 – It’s been a fairly quiet week for Sam.  For us, it’s been a week of reflection.  It was one year ago this week that we were faced with difficult circumstances concerning Sam’s life.  Sam’s birthday (April 10) is special, but in the journey of Sam’s life, I like to think of July 2 as Sam’s re-birth day!  Last year, we couldn’t help but remember the story of Abraham and Issac as Abraham was instructed to sacrifice his only son.  Tonight, I read through Genesis 22 again, and I was reminded that after Issac’s life had been spared by the Lord, Abraham renamed the mountain “The Lord Will Provide”.  For the past year, we have reminded ourselves over and over again that the Lord will provide for our every need, and He has!  Even without employment for a year, the Lord has blessed us with a precious gift of having every day to spend together as a family with Sam.  He is faithful!

7/4/05 – What a difference a year makes!  On Saturday evening, we all sat on our back porch and watched our next-door neighbors set off fireworks.  Last year, Sam would have had seizures through the entire thing.  This year, we caught him trying to look at all of them as they were going off.  It was well past his bedtime, and he eventually fell asleep, but it was amazing to see him enjoying and responding to the fireworks.  I have prayed and prayed that our lives might settle down a bit and after going through everything we have this past year, it now feels like it is.  It has wonderful to be at home with him during the first two years of his life. God is AWESOME!!!   (Written by Daddy)

7/5/05 – All in all, Sam had a wonderful holiday weekend!  He enjoyed the fireworks, but his favorite activity was baking cookies in the kitchen with Grandma!  He was all smiles as he placed chocolate “kisses” on all of the cookies.

7/9/05 – Sammy went swimming today!  (All of you doctors and nurses can relax — it was in a baby pool and he didn’t get water anywhere near his trach, I promise!)  He was invited to go swimming at Miss Addison’s house in her fancy inflatable elephant pool with a canopy to shade the little swimmers.  Sam seemed to enjoy it, and Miss Addison was so sweet to share her pool with him.

7/11/05 – We took Sam to the park yesterday afternoon.  This particular park has playground equipment for disabled children, so Sam was able to swing like the big kids in a swing which supported his trunk and his head.  There were also platform swings for his wheelchair, but we didn’t try those.  One new thing that Sam discovered was the teeter totter, and he loved it!

7/15/05 – Sam showed off his artistic abilities today as we spent a few hours at Potter’s Paint Shop painting pottery pieces.  How many parents would be brave enough to take their two year-old to a place like that?  When Sam was first born, it would have been so easy to focus on the things that Sam wouldn’t be able to do.  Looking back now, it’s so interesting to see all of the activities that Sam has had the opportunity to do because he’s not a typical two year-old.

7/20/05 – Sam’s Daddy started his new job this week!  Mommy’s trying not to take it personally when everyone walks into the house and looks disappointed to see her instead of Daddy!  Sam’s not sleeping; the dog is depressed; our little brother is pouting; and I think even the mailman looks sad!  All joking aside, we’re adjusting to the transition just fine, and we’re thrilled about this new opportunity.  In my downtime, I’ve been working on a few scrapbook pages, and I’ve finally gotten a few layouts scanned and posted.  If you’re interested in seeing them, here’s a link.

7/23/05 – It has been a rough week for little Sammy.  His stomach has been upset for the past few days, and we’re doing everything we can to help relieve his discomfort and keep him happy.  Hopefully, he will get past the tummy aches soon, and he can start having fun again.

7/25/05 – Sammy is selling wristbands to raise money and awareness for Holoprosencephaly.  They are similar to the fundraising bands you’ve been seeing everywhere.  (Why buy a generic band from the guy behind the counter at the convenience store? He’s nowhere near as cute or sweet as our little Sammy!)  The bands come in two different colors–slate blue or glow-in-the-dark green.  They come in adult or child size, and the price is $5 each.  Each band will read, “Holoprosencephaly” and “Living with HoPE”.  Living with HoPE was chosen because many times it is the parents who must put the “O” in HPE to discover hope for their children.  Sammy is taking orders now, and the bands should arrive in about four weeks.  If you’re interested in buying a band from Sammy, send us an e-mail message, and we will be sure to save one for you.  Several of the parents of children with HPE are selling these bands to help raise money which will be donated to the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations.  The Carter Centers makes it possible for children like Sam to live with hope.

7/30/05 – Sammy is going to be on the radio!  He has been selected to be a FUEL for Living Champion, and he is going to be profiled on Rick Rogala’s FUEL for Living broadcast.  Locally, FUEL can be heard on 93.9 The Song three times daily, and we believe Sam’s story will air on Wednesday, August 3.  If you don’t catch it on the radio, you can also hear it archived at www.fuelforliving.org.

8/3/05 – Sammy was on the radio today, and he is just as humble as ever before!  Here are two related links:  Rick Rogala’s Daily Blog and FUEL for Living.

8/8/05 – The new seizure medication isn’t working as well as we had hoped.  Since Sam started taking it, his stomach has been really irritated.  The tummy aches are causing more seizures, so it has become a vicious cycle.  His GI doctor suggested that we try giving him Mylanta, and that did seem to give him some relief over the weekend.

8/10/05 – Sammy has a special prayer request for his Grammy.  Grandma was admitted into the hospital today after an EKG and a heart echo raised some red flags.  She will have a heart catheterization within the coming days to hopefully discover the cause of her symptoms.  Sammy did something new today!  For the past year, Sam has been using his stander to bear weight on his legs.  He wears AFOs (ankle/foot orthotics) to support his ankles while in the stander.  After a diaper change today, I stood him up to see if he might put weight on his legs without the stander and without the AFOs.  I was shocked when he locked his legs and stood with his feet flat on the floor!  He stood for over a minute like that with me supporting his upper body.  Even when I tried swaying him back and forth a little, he shifted his weight from one foot to the other and kept his legs, knees, ankles and feet extended.  He has physical therapy on Friday, so I’m hoping that he will repeat it for his therapist.

8/16/05 – Sam is teething again.  He only has 4-5 more teeth to go, and once we’re finally finished with the teething, we may throw a party!  For Sam, teething has been more painful for him than a majority of his surgeries were.  Grandma is getting a pacemaker tomorrow.  She’s had a few heart procedures, and so far, everything appears to be fairly normal.  Hopefully the pacemaker will do the trick.  Sammy visited Grandma at the hospital on Sunday, so he wants to thank the nurses at Tipton Hospital for taking such good care of his Grammy.  Steve and I are feeling really OLD today.  Our “Little Brother” Aron starts high school tomorrow, and he’s nervous!  It seems like just yesterday when we met him and his family, and it’s hard to believe that it’s been nearly eight years.

8/21/05 – Grandma is home from the hospital.  No pacemaker yet, but that will probably happen in a few weeks.  For now, she’s on lots of medications and needs to build up her strength.  Thank you for all of your prayers; from what we understand, she was in a very serious situation.

8/25/05 – Grandma is doing better.  Sammy is happy and healthy.  Daddy is enjoying his new job.  Mommy is a mess with an upper respiratory infection and conjunctivitis.!  Somehow I ended up on the short end of things.  Right now, the focus is on keeping Sam healthy and not spreading germs to him which is nearly impossible.  Without Steve and the nurses picking up my slack, we’d be in a terrible mess!

8/27/05 – This morning, Sammy went to our church to hang out with his new “buddies”.  The special needs ministry at our church has a program where special needs children and adults can have “Buddies” who can accompany them and assist them with activities and learning on Sunday mornings.  Sammy will have six buddies who will form teams of two and each team will be on a rotation to buddy up with him.  This morning, Sammy and Daddy began training with the first team–Don and Beth.  We first met Beth in the NICU where she’s an RN.  We’re really excited about Beth and her husband, Don, being Sammy’s buddies because we’ve seen Beth in action with medically-fragile babies, and she’s an excellent nurse.  Sammy is excited because Beth is blond and pretty!  Leave it to Sammy to flirt with a woman right in front of her husband!

8/30/05 – Sam had a great physical therapy session today!  Tomorrow morning, we are going to meet his developmental and vision therapists at “Build-A-Bear”, and they will help him to interact with other kids and to push buttons and make choices for building his own teddy bear.  We’re excited to see how he responds to a new activity away from our house.  Sammy would also like you to pray for a young man who is a patient at St. Vincent Hospital.  We learned of him through a friend on a scrapbooking website.  He’s quite a remarkable young man, and he’s in desperate need of prayers as he is in the battle of his life.  Click here to read his prayer blog.

8/31/05 – Sam LOVED the Build-A-Bear Workshop!  He made a special bear that he chose all by himself, and his bear “roars” when we squeeze his paw, so we have named him Rory Bear.  By reading his body language and eye gazes, Sammy was able to tell us exactly what he liked and disliked.  His absolute favorite part of the entire experience was the stuffing machine, and he couldn’t take his eyes off of the fluffy stuffing swirling around in the machine.  It was just a wonderful experience, and it was fun that two of his therapists were able to share the experience and witness him having such an enjoyable time.  And, the employees there made it such a pleasant and comfortable place for us.  Sammy and Rory give Build-A-Bear Workshop two paws and two thumbs up!

9/5/05 – Sammy had a nice weekend.  He finally had a chance to spend some quality time with Grandma, so they are both happy about that.  We are relieved to hear that all of our friends in the New Orleans area are safe.  There are a few families in that area who have children with HPE, so we have been very worried about them.  They have all checked in with our online group to report that they are safe; however, one of the families from Gulfport has lost their home and its contents.  They are staying with relatives in Texas, and they aren’t sure what they are going to do next.  Please include Holly and her family in your prayers.

9/11/05 – Sammy seems to be sick.  I say “seems to be” because it has been so long since he’s been sick (18 months) that I’ve almost forgotten what the symptoms are!  He has slept a lot today; he has a slight fever; his nose has been running; and he is coughing a lot.  We’re giving him breathing treatments and trying to help him with the congestion.  How he does overnight will determine whether we call the doctor in the morning.  PLEASE continue to keep BJ Higgins in your prayers.  Steve met BJ’s family recently, and he is still in very critical condition with complex medical issues.  He and his family are extraordinary people, and they appreciate all prayers lifted up on their behalf.

9/14/05 – Sammy seems to be feeling better.  He slept a lot yesterday, and his sleep seemed to be very restful.  Also, a big thank you for your prayers for Sammy’s Grammy.  She had a follow-up appointment, and the medication she is taking has been doing it’s job.  Her heart is back in rhythm, and at this point, a defibrillator isn’t necessary.

9/15/05 – Anyone remember Sammy’s nickname before we named him “Samuel”?  Before we knew whether Sammy would be a girl or a boy, we chose a nickname for him–Scooter!  With our last name being Harley, we thought that “Scooter” adequately described a little Harley.  The nickname “Scooter” had gone by the wayside for us; however, it’s making a comeback!  Sammy had occupational therapy today, and he used a “Scooter” board.  Basically, it’s a flat, cushioned board on wheels which allows Sam to be placed on his tummy and use his arms and/or legs to scoot himself around–sort of like a wide skateboard or a very small mechanic’s creeper.  We’re still in the early stages with it, but so far, he seems to like it.  For now, it is supporting his upper body, and he is able to freely kick his feet and legs to scoot around the room.  He’s only scooting a few inches at a time now, but with use and determination, he may find that he’s able to put some mileage on it!

9/18/05 – I don’t get a chance to be the one to update the site much, but Leslie is holding Sam and I figured what the heck.  Sam is still fighting his cold and trying to cut one of his two-year molars.  The problem is that he has so many other teeth, when we rub his gums, he makes us cry out in pain when he bites down.  Then he smiles!  I am seeing such a big change in Sam which is wonderful and exciting.  He is doing so many things as I am sure you have read on his site.  I am thankful that God is in control of our lives.  I am loving my new job and really beginning to become comfortable in my position.  It is a totally different job than I am experienced in, but I am catching on fast and have great people to work with.   I do have one request before I sign off.  You have read by now about a young man named B.J. Higgins.  He is fighting the fight of his life.  His family is so awesome, and their faith is truly an example of what it means to Fully Rely On God.  I have never met BJ but have met his family; although, I hope to meet BJ in the future.  Words cannot express the impact he has had on me.  I want to ask everyone to pray for my friend BJ.  You can look at his blog in the 9/11/05 update below.  I hope that you read a couple of the excerpts his parents have placed out there from his journal.  This young man is truly extraodinary and has a heart for the Lord.  I hope and pray every day that his testimony is a long and fruitful one.  At his young age, he gets it; he really does understand what God is telling us.  I hope BJ continues to listen and tells us more.  Steve 

9/23/05 – The cold Sammy had seems to be gone now, but he’s definitely teething!  The first of his four two-year molars should be coming through his gums any day now.  What a relief it will be when he finally has a full set of baby teeth, and we can all take a break from teething!

9/26/05 – Our thoughts and prayers go out to BJ’s family, as BJ is absent in the body but present with the Lord.

10/2/05 – After three long weeks of cold symptoms following by teething symptoms, Sammy had a really great day today!  Over the past few weeks, he’s also had an upset tummy every day with a lot of gagging and vomiting.  This Friday, he is going to have a scope into his stomach to make sure that he doesn’t have any ulceration there.  He won’t be thrilled about it, but it may determine a cause for his recent stomach problems or at least eliminate some causes.  Keep in mind that he still has gall stones, and we’re never quite sure what they might be doing.

10/8/05 – Sammy had his scope yesterday.  It ended up being an upper and lower GI scope.  Everything looks normal with no redness or irritation.  His stomach and intestines were biopsied, so we should have some results back on that next week.

10/12/05 – Can you believe that Sammy turned 2 1/2 years old on the 10th?!

10/17/05 – Sam had a really great weekend, and we tried to take advantage of the nice weather.  We took a drive to Metamora on Saturday, and Sammy enjoyed the trip.  On Sunday, he spent time in his wagon riding up and down the driveway.

10/19/05 – We made a return visit to see our friends at Build-A-Bear Workshop, and this time Sammy invited his friend, Rachel, to join us.  Rachel and her family are scheduled to leave on Sunday for her Make-A-Wish trip to Disney World, so please pray that Hurricane Wilma doesn’t interfere with their plans.  Sammy really showed us a thing or two today!  During occupational therapy, he spent some time on his scooter board which is a flat, cushioned board on wheels which allows Sam to be placed on his tummy and use his arms and/or legs to scoot himself around–sort of like a wide skateboard.  He’s only scooted a few inches with it in the past, but today he took off and scooted 50 feet!  He started in our living room, scooted through the kitchen, through his pass-through bathroom (which connects our kitchen to his bedroom) and then stopped when he reached his bedroom!  We just couldn’t believe our eyes!  He has always reminded me of a little turtle–slow but sure!

10/31/05 – Happy Halloween!  Sammy dressed up as a bumble bee tonight.  It was his costume from last year, but he couldn’t wear it last year because he was in the hospital for Halloween.  We had a wheelchair ramp installed on our minivan today.  It is something that we’ve been anxiously anticipating because it will allow us to go places with Sammy without the need to transfer him and all of his equipment each time we get in or out of the car.  Hopefully the ramp will make outings a little bit easier, provided that we can find a handicap parking space to accommodate the ramp.

11/7/05 – The ramp seems to be working fine, and Sammy seems to appreciate sitting up taller in the van in his wheelchair as opposed to the carseat.  We had a busy week last week with a lot of appointments and therapies.  He’s still having stomach problems and vomiting, so we’re working with his neurologist to eliminate one of the seizure medications that we believe is the culprit.  Also, we’re looking into a growth hormone for Sam.  Typically with a child who is immobile, it is to the parents’ advantage for the child to remain small; however, Sammy is continuing to gain weight, yet he isn’t growing in length.  (Mommy is having that same problem!)  He is now 35 pounds and is only 32 inches long.  Because so much of his weight is in his torso, it is having an adverse effect on his breathing and his heart.  The hope is that the growth hormone will help him grow in length and slim down his torso.

11/8/05 – Did you know that Sammy has been approved for a wish through the Make-A-Wish Foundation?  We’re still in the beginning stages of the process, and the next step is to try to determine what Sammy’s wish might be.  Any suggestions?

11/9/05 – Please remember Sammy’s friend, Kalai, in your prayers.  Kalai lives in Hawaii, and he recently celebrated his first birthday.  He has the most severe form of HPE, and he has defied the odds many times in his short little life.  Kalai was air-lifted to a children’s hospital in Honolulu, and earlier today he required CPR while in the ER because his heart had stopped beating.  Kalai has also been experiencing some of the same symptoms as Sam has with shallow breathing and lowered heart rates.  Kalai is a special little boy, and he and his family could definitely use some extra prayers right now.

11/10/05 – Sammy’s friend, Kalai, passed away this morning.  All of the children we are aware of who have HPE are all so very special, but Kalai was extra special to our family because he shared so many similarities with Sam.  Kalai’s first birthday was last month, and I made him a special little book with various types of textures because Kalai was blind.  To thank me, Kalai and his great-grandparents sent Sammy native gifts from Hawaii.  Please lift up Kalai’s family in your prayers, especially his mother and father who are both very young parents.

11/11/05 – Today was another major milestone in Sammy’s life.  We had a meeting this morning with Sam’s pre-school to discuss his transition from First Steps home-based therapies to special needs pre-school.  Sam becomes eligible for pre-school on his third birthday which is only five months away. 

11/15/05 – It was a rough weekend as Sammy is teething again.  Can you even imagine the rejoicing that will take place once that last tooth is finally in?!  For now, he’s working on the first of his two-year molars.  It seems that teething pain for Sam is worse than the pain he’s had from any of his surgeries.  How I wish I could buy children’s Tylenol, Motrin, Orajel, and Mylicon in bulk!

11/22/05 – If Sam were to smile a really big smile, you would see a HUGE new molar!  He sure has worked hard on that one, just in time for Turkey Day.  The bad news is that there’s another one coming in on the opposite side of his mouth.  It should make for an interesting holiday!

11/29/05 – Sam seems to be feeling much better these days.  Two weeks ago, his neurologist discontinued one of Sam’s anti-seizure medications due to all of the stomach problems Sam had been having over the past few months.  He told us that it would take two weeks to completely leave Sam’s system, and so far, Sam seems happier and the daily vomiting has greatly decreased.  Now, maybe we can start focusing on having a little more fun because Sam has big plans for the next few weeks–the Yule Slide at the Children’s Museum, The Polar Express 3D at IMAX, a carriage ride on Monument Circle, a visit and pictures with Santa.

12/5/05 – Sam had a nice weekend, and he was a very good boy.  On Friday night, Sammy had a “date” with Miss Ann, one of his favorite nurses.  We used a few of our respite hours for a night out, and Miss Ann and Sammy enjoyed an evening together watching “Robots”.  On Saturday night, Sammy participated in a special needs event at our church, and he was a very good boy there too.  So far, the month of December is agreeing with him.

12/8/05 – Today was a great day!  Sammy sat on Santa’s lap for a photo with Santa today.  As we stood in line to see Santa, I began counting the number of years that Sammy has visited Santa.  It’s so amazing to realize that we are celebrating our third Christmas season with Sam, and before his birth, he wasn’t even expected to make it to see his first Christmas.  Grandma was with us today, so we stopped by Build-A-Bear Workshop to introduce Grandma to Sammy’s friends who always welcome him so warmly when Sammy visits the store.  Afterward, we stopped to have lunch, and that’s when Grandma and I discovered that we were escorting a celebrity!  We were quite surprised when a group from another table said, “Excuse me, but is that Sam Harley?”  As it turns out, they were three nurses from St. V’s pediatric ICU who were spending the afternoon shopping and having lunch together.  It has been almost 18 months since Sam was in the PICU, and it was very heartwarming that they not only remembered his face but they also remembered his name.  That’s why we love St. V’s so much! 

12/14/05 – Steve and I are going to introduce Sam to the Circle of Lights tomorrow evening.  We have a reservation for a carriage ride on the Circle which will allow Sam to see the lights up close and at a slow rate of speed.  We are praying for a silent night in the weather department!

12/15/05 – Being a Dr. Seuss fan, one of Sam’s favorite books is “Green Eggs and Ham”, but sometimes I think Sam’s life falls more in line with “Oh, the Places You’ll Go!”  We just never know where Sam’s journey will take us, and today is no exception.  Sam and I spent the morning sharing Sam’s story with Anne Marie Tiernon, a local news anchor.  Sam’s story will air on tonight’s broadcast of Eyewitness News on WTHR-Channel 13 in Indianapolis.  Sammy wasn’t nervous at all, and in fact, he didn’t even bat an eye–of course, he was asleep and refused to wake up for the camera!

12/20/05 – It’s been a good, yet busy week so far.  Sam had two doctor appointments yesterday with specialists, and both doctors were very pleased with how healthy Sam has been.  Today, Sam had physical therapy at home, and then we spent the afternoon at the Children’s Museum.  Sam’s friend, Rachel, invited us to go with her family, and it was Sam’s first visit to the museum.  His favorite exhibit was Dinosphere which we found to be a very interesting choice because the exhibit includes loud noises and strobe lights which I worried might be too much sensory input for Sam.  Once again, Sammy is predictably unpredictable.  We have also discovered something new that Sammy likes–Rice Krispies.  Sam doesn’t eat by mouth, but he likes to listen to the snap, crackle, and pop that they make in milk.  Whenever we place a bowl of them near him, he turns his ear toward them and quiets his breathing so that he can hear them better.

12/25/05 – Merry Christmas!  Sammy had a very good Christmas this year as he was happy and healthy!  We thought we would share a few of Sammy’s Christmas favorites:

Favorite book:  The Crippled Lamb by Max Lucado
Favorite song:  Santa Baby by Eartha Kitt.  Actually, he thinks it’s “Sammy Baby”.
Favorite candy:  Peppermint candy canes
Favorite parent:  Daddy; He’s been Daddy’s boy all day.
Favorite present:  Little Tykes bowling set

1/2/04 – Sam is feeling much better and seems to be back to his old self again.  Please keep him in your prayers over these next few weeks because he has a surgery coming up.

1/6/04 – We’re busy getting all of our ducks in a row before Sam’s surgery next week.  Sam is still having 50-100+ seizures per day, even while taking 5-6 different anti-seizure medications daily.  Each medication has side effects, and they can all potentially cause damage to his liver and/or kidneys if taken over the long-term.  Over the past few months, Sam’s neurologist has talked with us about Vagus Nerve Stimulation (VNS) therapy.  It’s not a cure for seizures, but it is described as a therapy to help control seizures and eliminate some of the medications.  It would involve implanting a magnetic device under a muscle in Sam’s chest with leads connected to the vagus nerve in Sam’s neck.  The device applies electric signals to  the vagus nerve for transmission to the brain.  (The surgical procedure doesn’t involve the brain.)  We watched a show about VNS therapy on Discovery Health several months ago, so we were somewhat familiar with it when the neurologist first suggested it.  While Sam is in the hospital recovering from surgery, a neurosurgeon will evaluate Sam to see if he might be a candidate for VNS therapy.  If so (and insurance approves it), we may go forward with it.  After it’s implanted, it may take several months before we know if it is successful in reducing his seizures.  Of course, that also means that we probably will never be able to take Sam through the metal detectors at the airport!

1/11/04 – First off, Sam wants to say “Go Colts!”  He’s growing so quickly, and his little Colts outfit isn’t going to fit much longer.  He wears it every Sunday that the Colts play, so his intention is to still be wearing it on Super Bowl Sunday even if it is too small!  Sam turned 9 months old yesterday!  Yesterday also marked one year since the first time our ears ever heard the word “Holoprosencephaly”.  That January 10th was a day of hopelessness; this January 10th was a day of hopefulness.  Sam is going to church this morning to worship and to praise!  This has been such a good week for Sam.  Earlier in the week, we asked our church to pray for Sam’s upcoming surgery and for help with his seizures.  On Tuesday, his neurologist increased the dose of one of his anti-seizure medications, and by Wednesday night, Sam’s seizures had decreased by at least 85%!  He continued to have minimal seizures throughout the rest of the week, and we know that the Lord has heard the prayers of many!

1/13/04- Sam did well with his surgery today.  It took much longer than we had thought, he was in for almost 7 hours and is resting comfortably now.  They had some trouble get a central line in because Sam’s veins went through so much when he was in the NICU, but they got it in eventually.  We are just going to have to watch him the next several days to make sure he heals correctly and begin feedings again through his new G-Tube and no infections set in.  Right now he is just having more seizures, but we are hopeful those will subside soon.  Pray that he heals quickly and can get back into his normal routine as quickly as possible and pray that Mom and I can get some rest in between.

1/16/04 – Sam is doing much better.  He’s thrown up a few times, so he hasn’t been able to begin receiving Pedialyte, but it should be soon.  If that goes well, they will slowly begin giving him watered-down formula.  Tasty!  He’s had several dirty diapers, and it looks like things are beginning to move in the right direction, if you know what I mean!

1/18/04 – Sam has moved out of the ICU and into the Pediatric Unit.  The stitches in his abdomen were removed today, and his incision looks great.  He tolerated Pedialyte and is now receiving half-strength formula at 10cc over the course of one hour.  (40cc = 1 ounce)  Over the next few days, his volume will be increased as will his calories as he tolerates it.  One of our concerns right now is with the central IV line which is where he has been receiving fluids.  The line is beginning to show signs that it may not be functional for much longer.  We’re hoping that his feedings will increase enough to remove the line completely and not need the additional fluid support through an IV.  He has a bit of diaper rash but seems to be tolerating that fairly well so far.  We still don’t know when he will be able to come home, but if he continues to do well, it may be soon!

1/19/04 – Sam is still doing well and making lots of dirty diapers.  It is so nice to see his face without a tube in his nose and tape all over his face.  Once he’s home, we will have to take a few new pictures for the website.

1/20/04 – Sam is doing so well that he may be able to come home tomorrow evening!  The volume of his feeding has been increased to 35cc per hour, and he will begin taking 3/4 strength formula tonight.  He’s no longer getting IV fluids, and the IV line will be removed soon.  Steve and I are both really surprised that Sam has done so well, and I think he’s even surprised his surgeon too.  He’s one tough little guy!  Way to go, Sam!  P.S.  To everyone who shopped for “Diaper Doublers” for us, thank you so much!  A package of Diaper Doublers is like gold to us right now!

1/21/04 – Sam was discharged from the hospital today, and he’s settled in at home now.  He has been smiling a lot more today, and it looks like there truly is “no place like home”.

1/29/04 – Not much to report . . . Sam is still doing very well.  He had a follow-up with his surgeon today, and she said that his incision is healing nicely and his g-tube stoma looks great.  (According to Websters, a stoma is an artificial permanent opening made in surgical procedures.  Sam has three stomas:  one for his trach, one into his stomach for his g-tube, and one into his bladder.)

2/1/04 – Sam received a few vaccinations on Thursday, and he’s felt pretty yucky since then.

2/5/04 – Matthew 18:19-20 says, “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.”  We wanted to share with you how much we appreciate your prayers. A group of our friends gathered last night for a bi-weekly Bible study, and we had asked them to include a prayer for Sam in their prayer time.  We had the most wonderful night with Sam last night!  He was awake, alert, smiling and happy. We watched a Baby Einstein video together, and he focused in on it for almost the entire time. On a typical evening, he’s awake, but he’s seizing frequently (every 5-10 minutes on average), but last night, he was a completely different child, and only had five seizures for the entire evening.  This is now the second time when we’ve asked our friends and our church prayer team to pray for Sam on a Wednesday night, and he’s had a wonderful night at the same time everyone was coming together for prayer!  It doesn’t surprise me at all, but it never ceases to amaze me!

2/9/04 – Sam turns 10 months old tomorrow!  He’s up to 19 pounds and is 27 inches long now!  He’s finally catching up to those big feet he has!  Sam is doing well with his new g-tube for feeding.  From time to time, you may hear us refer to it as a “Mic-key button”.  I don’t exactly know why it’s called that, but the Mic-key fits into the g-tube, and we just pop it open to feed Sam.  I keep expecting the button to have little black mouse ears on it!

2/12/04 – Sam made a new friend last night!  Our journey with Sam has led us to meet many new people, and we’re often surprised by the cards and messages of encouragement that we receive from strangers.  For the first time last night, we had the opportunity to meet Debbie, one of Sam’s biggest fans who has been praying for us and cheering Sam on.

2/17/04 – We’ve been having some struggles lately.  Sam’s electrolytes have been imbalanced for the past week.  An electrolyte imbalance can cause him to dehydrate which in turn can cause more seizures.  On top of that, he has started running a temp tonight, throwing up, and not sleeping.  His nurse said that his lungs sound moist, and we’re keeping a very close eye on him and keeping the phone line lit up to the doctor on call tonight!

2/19/04 – Sam was admitted to the hospital on Wednesday.  The good news is that his electrolytes seem to be back within normal ranges; however, he had a positive blood culture, so it appears that he has an infection.  The culture will need to continue growing for a day or so in order to determine what it is and which antibiotics will be best to fight against it.  In the meantime, he has had a restful evening tonight and seems to be feeling a little better.  We’re praying for rest and comfort as he sleeps overnight.

2/20/04 – Another day at the hospital today.  Being in the hospital isn’t any fun; however, Sam has made so many friends with nurses, doctors, and therapists that everyone who walks in his room recognizes him right away from his prior hospital stays.  Sam is beginning to think that going to the hospital is just like going to a family reunion!  (I’m sure anyone with a special needs child or with a long-term illness can relate to that!)  We’re at St. Vincent Children’s Hospital, and they are taking such good care of him.  With all of the IVs Sam has had over his life, getting a needle into his vein for IVs or blood draws takes a lot of skill and patience.  We typically hold our breath and say our prayers each time a needle goes in.  In this trip to the hospital, the nurses have been EXCEPTIONAL at hitting a vein on the first or second attempt!  Maybe we’ll take some chocolates in for the nurses as a thank you.  Nurses love chocolate!

2/22/04 – Sam’s urine and blood cultures confirmed that he has a UTI and an infection in his blood.  He’s on IV antibiotics, and he seems to be responding well.  His electrolytes are back within normal range, so he’s getting all of his ducks in a row now and hopefully will be discharged in a few days.  The days at the hospital are long and wearing, but the environment and the staff at the hospital make it just a little bit brighter.  Thank you so much to everyone who has brought us meals; they have been a huge help for us!

2/24/04 – As with many special needs children, Sam must work very hard to do even the smallest and simplest of things.  Sam has a little toy wind chime that hangs from an activity gym; many toys cause Sam to have seizures, but this wind chime is very soothing.  Last night, we hung the wind chime over his crib and let it dangle down next to his fingers.  After helping him to ring it a few times, he began to move his right hand and made it sound on his own.  Many times with Sam, his limb movement is the result of a neurological reflex; however, last night was different.  He spent about 40 minutes intentionally making the chime sound all on his own!  We were crying tears of joy, and we’re so excited to see that his therapies are showing signs of progress!

2/25/04 – Good news!  Sam will be discharged from the hospital this afternoon!  While we’re on the subject of good news, please be sure to mark your calendars for Sam’s First Birthday Celebration!  We’re still in the planning stages, but it’s slated for the afternoon of Saturday, April 17.  This celebration is our way of saying thank you everyone who has been so important in Sam’s life through prayer and support, and everyone is invited!

2/29/04 – It’s been a stressful weekend.  While in the hospital, Sam was prescribed large doses of steroids due to inflammation in his lungs.  Now that we’re trying to wean him down from those large doses, his body is responding to the adjustment by increased seizure activity.  It’s called “steroid psychosis”, and it isn’t pretty!  It’s so difficult to watch him struggle, but it looks like he’s turned the corner now and is showing signs of improvement.

3/4/04 – Sam is feeling much better now.  He’s still puffy from the steroids which make his chubby little cheeks look even chubbier now.  Sam is happy because Mommy is going to be at home with Sam everyday beginning May 1.  Don’t tell anyone, but Sam is quite the “mama’s boy” right now!

3/7/04 – Sam has had two really great days with very minimal seizures!  On Saturday, Sam’s “Big Brother” Aron came to visit and Sam had his first sleep-over!  We have been involved in the Big Brothers program for about 7 years now, and our “Little Brother” Aron is now 14 years old!  (Sam’s middle name is Aaron!)  Aron spent the night, and then went to church with us this morning.

3/8/04 – Today was a difficult day–not difficult for Sam, but difficult for me.  There is an online community of parents who have children with HPE, and I talk with other parents online on a daily basis.  We share with each other our struggles, our experiences, our joys, our children.  We pray for each other, and we encourage each other.  We form close bonds even from halfway around the world.  Today, one of our children died.  Last week, one of our babies died.  It’s a reality that we all live with on a daily basis, but it is sometimes so difficult.  It’s not something that Steve or I talk about with our friends on a regular basis, but we have no idea how long Sam will be with us.  It may be years, or it may be next week.  You know the little phrase, “Today is a gift; that’s why it’s called the present”; that’s the way that we live.  If you read this, won’t you please pray for the families of Harrison and Allie?  (Right click on the webpage links, and select “Open in New Window”)  http://home.cinci.rr.com/hpe/ and http://www.caringbridge.org/ia/alliedejong/

3/11/04 – Know the theme song from “Cheers”?  (“Sometimes you want to go where every body knows your name . . . “)  That’s Sam!  He was admitted to the hospital again last night with respiratory issues.  So far all of the cultures have come back negative, and he does seem to be doing better tonight.  It looks like we may be coming home with some new equipment to help assist him during those times when he’s working a little harder to breathe.

3/13/04 – Sam seems to be doing better; last night, he was smiling and playing with his wind chimes.  Because this is the second time Sam has had a respiratory issue, we have added a pediatric Pulmonologist to Sam’s team, and he suggested using CPAP (continuous positive airway pressure–a lot of people with sleep apnea use this while sleeping).  The doctor believes that Sam may have air sacs in his lungs that are collapsing.  CPAP will help to keep these sacs open and allow him to breathe easier.  In this case, CPAP isn’t a ventilator, and Sam will still be breathing completely on his own and using his own air.  We’re praying that it is something only needed at night while he’s sleeping.  Because Sam has a trach, it’s really easy to use CPAP; however, we’re really afraid that he will become so dependent upon it that he will need it 24/7.  Obviously, it’s another piece of equipment, and if you’ve ever seen his stroller, it is completely maxed out with equipment as it is.  Even if we would use Sam’s big wagon to transport him around, he would need a little pull-behind trailer to go with it to accommodate all of his stuff!  (Ever read the book “Traveling Light” by Max Lucado?  It’s a great book–maybe we should start reading it to Sam!)  On the upside, if Sam can breathe easier, isn’t working so hard, and his blood is supplied with adequate oxygen. We’re hoping that his brain might respond in a positive way and eliminate some of the seizures.  Lack of adequate oxygen equals increases seizures.  Increased seizures equals lack of adequate oxygen.  Thus is the circle of life for Sam.

3/15/04 – Sam is improving, and he’s almost ready to go home.  We had anticipated going home today or tomorrow, but we’ve had a change in the course of our plans.  With Sam’s new equipment, Steve and I will need to be trained, and we’ve just learned that the preferred method of training lasts 7-10 days!  That’s not a typo!  We’re working with our insurance company, our home healthcare provider, our home equipment supplier, and the hospital to try to work out an arrangement to get us trained and Sam home as soon as possible.  Steve and I are typically very laid back and flexible, but today’s news is just a little shocking and aggravating!

3/16/04 – We thought we had made some headway with this training issue, but we’re still sitting and waiting.  It was agreed that the home equipment would be delivered to the hospital where we would be trained by a representative of the company followed by Steve and I being required to provide Sam’s total care and equipment maintenance for 48 hours in the hospital before going home.  It was a plan that we felt was reasonable.  Today, we were informed that the trainer is sick and is unable to train us until Thursday, and they’re not even confident that the equipment will be ready for us by Thursday.  At the rate we’re going, Sam won’t be home until next week!  We’re trying to keep things together, but we’re really aggravated and upset by all of this.

3/17/04 – Plan B!  Because the original equipment company was unable to guarantee that we would even have equipment by next week, our insurance company graciously agreed to work with another equipment company who has a person on staff ready, willing and able to train us this afternoon along with all of the equipment we will need.  With that said, we anticipate that we may go home on Monday, if the Lord is willing! Sam was weaned off the CPAP machine last evening for 2 hours, and he did really well.  At the rate he’s going, he should be only using CPAP for 12 hours per day beginning sometime next week.  When Sam was in the hospital last month, he was given large doses of steroids to help his lungs, and he went through “steroid psychosis”.  (See February 29)  We’re in the early stages of that experience again, and Sam is having a lot of hard seizures.  He’s very sensitive to sound, light, touch and is very agitated.  I haven’t witnessed it, but Steve said that Sam seems to be spitting at him when he’s mad!  Our sweet Samuel, spitting?  That’s not part of his speech therapy!!  I have a feeling that Grandpa may have taught him to do that!

3/18/04 – It’s not often that I get to update the site, but mommy is staying with Sam tonight.  He had a great day.  I think we’re finally getting past the steroid psychosis.  He still had some intense seizures, but we were able to play and interact with him tonight with minimal seizures.  He is getting so big.  Looks like Monday will be the day.  We have all of our new equipment and have been trained; now all we have to do is “room in” with Sam for 48 hours and do all of his care including taking care of the new equipment.  Should be pretty easy since we know Sam and just have to take this new equipment and incorporate it into our lives.  Oh, and the whole spitting thing–I liked it.  It tells me that the little fighter has a little of his daddy’s temper and whole lot of spunk!

3/21/04 – If all goes well, Sam’s on target to be home by tomorrow afternoon!  We’re praying that this is our last hospitalization for a while.  Preparations are being made for Sam’s birthday celebration which is Saturday, April 17.  Mark your calendars, and pray that Sam is healthy and able to be there that day!

3/22/04 – There’s no place like home!  We finally made it home, and we’re all settling in for some much needed sleep and rest!

3/23/04 – All I have to say is GO SAMMY GO!!!!!!!!!!!.  At this time last year, we were making arrangements in the event that Sam didn’t survive, and this year we are planning the party of all parties to celebrate Sam’s first year of birth.  So far today, he is having an awesome day.

3/25/04 – Sam is one happy camper!  Since coming home from the hospital, he has had a string of back-to-back great days.  It’s not uncommon for Sam to have 10 seizures in an hour when he’s awake, but in the past few days, he’s only had about 10 seizures in an entire day!!  He’s awake, alert, and happy.

3/29/04 – Sam had his first haircut yesterday!  Sam was born with a lot of hair, but it all began falling out at about 4 months; however, there was a portion in the back that never fell out.  His hair on top has been really short and slow growing, but the hair in back has been getting longer and longer.  Daddy decided that it was time to cut Sam’s “baby mullet”!

4/2/04 – Sam is still doing very well.  He’s a little fussy and uncomfortable because he’s desperately trying to work through his two front bottom teeth.

4/5/04 – Those teeth are oh, so close, and now there are three trying to make their appearance.  April 10th is Sam’s first birthday, and it looks like he’s already making plans for the equipment he will need for digging into his birthday cake.  (We all know that Sam doesn’t eat orally, but he will enjoy smashing it with his fingers!)

4/6/04 – Sammy has his first tooth!  One on the bottom broke through the surface overnight!

4/8/04 – Don’t forget the celebration on the 17th at 1:00!  Be there or be square!

4/10/04 – Happy Birthday Sam!  You may notice that we changed the theme of Sam’s website a bit.  It was time to put away the baby booties and bring on a toddler feel.  In case you’re wondering, those aren’t Sam’s feet and legs that you’re seeing.  Sam’s legs are about that chubby, but his feet are much larger than that!  Let’s just say that the Lord provided Sam with a firm foundation!

4/11/04 – Happy Easter everyone!  We’re headed to church this morning, and what a great way to start off the first day of Sam’s second year.  We had Sam’s birthday party at home last night, and he did so well!  We kept his stimulation as minimal as possible in the morning and afternoon in anticipation for a lot of excitement with family coming to visit.  Sam didn’t respond so well to the tearing and crumpling of the wrapping paper, but he definitely showed an interest in his toys!  It looks like Sam has some new favorites now.  He even enjoyed getting his hands covered in birthday cake and icing.  As we expected, he did have a few seizures in response to all of the excitement, but all in all, he did great!  We are just so proud of him!

4/13/04 – Sam now has two teeth.  They’re both on the bottom, but the top ones are ready to make an appearance soon.

4/27/04- Sorry we haven’t posted in a while.  Things have been a little busy lately.  Leslie is preparing to be home full time with Sam while I am preparing to go back into the office full time.  I’ll miss being at home, but I know Sam will get some much needed time with his mommy.   Sam’s birthday celebration was awesome!  Sam slept through all of it, but I know he enjoyed it too.  I really felt like I was in Holland.  Leslie and everyone did a beautiful job decorating and his cake was really good too.  Thanks to everyone who came and also for the toys that we can donate to the St. Vincent’s Children’s Hospital.  I know they will be put to good use.  A friend of ours who is now a Senior Pastor at a local church kind of summed up Sam’s first year and gave his thoughts on Sam’s life.  He said that Sam makes him tingle when he is in his presence.  His reason was because Sam is here because God has a greater purpose for Sam.  His kids can verbalize their faith, but Sam just in what he had gone through in his first year and how it has strengthened our faith and our willingness to share our story to bring Glory to God should make people tingle when they hear it and meet Sam in person.  That will stick in my mind forever.   Sam is still having problems with his teeth.  He does have the bottom two front teeth, but who knows how many more are waiting to pop through those gums of his.  He is having more seizures because of it.  We just do what we can to get him through it all.  We did talk to his Neurologist again and he had talked with Sam’s Neurosurgeon about the VNS (Vagus Nerve Stimulator) again.  Both agree that this is the next step as Sam is maxed out on seizure medications.  It’s better for Sam if we can get a stronger control of his seizures now before they have a chance to get worse.  The VNS is not a cure, but just another therapy that hopefully will allow him to get off of some of the medications and give Sam a better quality of life with fewer seizures.  We’ve seen some real progress in Sam, especially when he does have fewer seizures.  He did do something amazing last night.  He was lying on the floor on his side and Leslie exclaimed, “Did you see that?”.  Sam had rolled from his side onto his belly.  I know it sounds weird to get that excited about that, but for Sam that was huge and he seemed really proud of himself.  Go Sam Go!!!!

5/7/04- We’re having some pc problems at home, so our posting on the site has been more difficult lately. Sam is doing well. We are all getting adjusted to Leslie being home and me being back in the office. Sam probably hasn’t noticed it much except that he has become daddy’s boy when I get home. He doesn’t settle down completely in the evenings until I get him up on my chest and him lying on his belly. Once that happens, he is out for the night. He is still teething, which may take a while but he’s doing pretty well with it. Sam will be getting new equipment soon. This equipment will just be one more therapy for him to aid in his development.

5/10/04- Sam had a pretty good weekend. Sam got to spend time with his mommy of Mother’s Day.We went to church yesterday, then lunch and off shopping. He was a little fussy, probably those teeth again. He also got to ride in his Radio Flyer wagon on Friday night. We wheeled him over to the neighbors house. We went through the grass and Sam got jostled around a bit, but had a big smile on his face and seemed to enjoy it. It was really the first time we’ve had him out like that. He didn’t seem to mind the breeze and even looked up at the sky with amazement. He also got to go to Ritter’s Saturday evening. Sam is becoming quite the traveler now. Like Leslie said, “Life is short and we need to enjoy it”.

5/14/04- Sam has had a pretty good week. His teething is bothering him and causing more seizures, but all in all he’s holding his own. He had two appointments this week. One with his pulminologist who was so pleased that Sam is doing so well on CPAP and is just continuing to get stronger. His second appointment was with his pediatrician. Again, he was happy to see Sam doing so well and was encouraged by hearing about his progress and how well he is doing on CPAP. He is a bit concerned about his weight. Sam is weighing in at 25 1/2 pounds and 28 1/2 inches long now. We’ve gone from “failure to thrive” to “failure to slow down”. His doctor made a couple of adjustments in his formula intake and hopefully that will help. The concern revolves around Sam not being as mobile as a normal child, so even though Sam is a healthy weight and where he should be growth-wise, since he isn’t a normal child learning to walk and being active, we have to do other things to help control weight and allow his metabolism to do its job. I always figured that with me being a big guy that if I had a son, he might be just like his daddy. He is in every way. He is my little bruiser.

5/19/04- The old saying of “no news is good news”, that has been our week so far. Nothing really new with Sam. Still teething and all that goes along with that. Sam is enjoying having his mommy home with him now.

5/22/04 – Things sure do change quickly with Sam. All week, we have suspected that something was brewing, but there were no clear signs of an illness. Around 7:00 p.m. last night, Sam’s temp shot up to 103.9 within an hour, his heart rate increased to over 200 beats per minute, and he started seizing up a storm! After a quick call to his pediatrician, we loaded him up for a visit to the ER. As it turns out, he seems to have some type of viral and bacterial illness, so he’s on a regimen of antibiotics. Sam didn’t need to be admitted, and we were finally home and all tucked in bed by 3:00 a.m.!

5/28/04 – After a round of antibiotics, Sam is feeling better.  We made a special memory yesterday. It was my birthday, and I wanted to spend it with Sam at White River Gardens. We went to the Hilbert Conservatory to see the butterflies. Sam slept through most of the adventure, but he did manage to wake up when he felt a butterfly lightly tickle his hand! It was really special to see Sam interacting with nature, but it was awesome to see nature interacting with Sam!

6/1/04 – We survived the tornado. We huddled in the bathroom, and the storm went all around us. Neighbors on an adjoining street weren’t so fortunate because there were a lot of trees toppled and branches on cars and houses.

6/4/04 – Sam is teething again, and he has a little cold too. Mommy and Daddy have colds, so we only have ourselves to blame for Sam being sick this time.

6/15/04 – Last week was a tough week with everyone being sick and under the weather.  This week, we’re all rebounding and feeling much better.  Sam had a good weekend, and we saw fewer seizures than we typically see.  Sam has Physical Therapy on Tuesdays, and he has been seizing quite a bit throughout his sessions recently.  Today, I asked his nurse to delay his bath until after therapy, and he made it through the entire therapy session without a single seizure.  He was also awake for 90 percent of the session but was so worn out from his workout that it was time for a nap as the session came to its end!  His therapist gave him an A+!

6/17/04 – Yes, it’s true . . . Steve was downsized today.  We would definitely appreciate your prayers.  Sam will continue to have medical coverage through Medicaid, so that will provide a safety net for Sam.  Our nursing hours will probably change, and we will most likely delay a surgery to have a vagus nerve stimulator implanted which would help reduce some of Sam’s seizures.  On a positive note, Sam had a great day!  He had occupational therapy this morning, and he only had a seizure after he tasted lemon!  We also went to Riley Hospital for his weekly bloodwork, and we followed it up by stopping by the Zoo!  Sam saw the animals, but he was more impressed by all of the children.

6/23/04 – Sam is doing very well.  He’s getting to be such a big boy, and it seems he’s transitioning from a baby to a toddler.  He’s not napping as much now and seems more alert and active.  We have seen a decrease in seizure activity over the course of the last 10 days, so we’re really hoping that this trend continues for a while!

6/24/04 – Sam had a very fun day!  We met a friend for lunch, and while we were in the neighborhood, we stopped by the NICU to say hello to a few of the friends we made during Sam’s NICU stay last year.  Later in the evening, we loaded Sam (and his equipment) into his wagon, and he spent 45 minutes roaming around the yard with a big smile on his face!

6/28/04 – Sam is in the hospital again.  He’s in the Pediatric ICU.  Early Sunday morning, he had an episode where he stopped breathing and wouldn’t respond to stimulation.  His nurse (Ann) was right there and began bagging him immediately.  We called 911, and he took an ambulance ride to the ER.  He was placed on a ventilator and within a few hours was breathing more on his own.  The doctors believe that one of his anti-seizure medications may have built up in his system and suppressed his respiratory system which is a side effect of some of his medications.  (Test results should be back in a few days to tell us what his medication levels are.)  Over the past week, Sam has been sleeping a lot more than usual, but we assumed that he could be going through a growth spurt.  He’s still on the vent, but we hope that they can start weaning him from the vent today and hopefully be home in a few days.

6/30/04 – Sam really needs your prayers right now.  He is still on the ventilator, and when he is allowed to breathe on his own, he is still experiencing episodes of apnea.  As it looks right now, he may be dependant on the vent when he comes home.  There appear to be changes in his most recent CT scan compared to an earlier scan, and there may be pressure on his brain causing the apnea.  Sam’s neurosurgeon is going to review the scans to see if anything can be done from a surgical standpoint.  If not, we may be forced to face some very difficult conclusions about Sam’s longevity.

7/4/04 – Our Sam is one amazing little man!  Steve and I had to make the hardest decision of our lives two days ago.  It required much prayer, a lot of talking, and sacrificing our own selfish desires.  Our initial plan had been to keep Sam on the ventilator and to take him home that way; however, as we continued talking about what would be best for Sam and praying that God would reveal His will for Sam’s life, we made the decision to remove Sam from the vent knowing that his brain may not remind him to continue breathing.  When Steve and I prayed and asked that the Lord might one day bless us with a child, we surrendered that child to Him before Sam ever came into existence.  We have always been keenly aware that Sam belongs to God.  It has been an absolute privilege to have Sam in our life, but we know that he’s not ours–he is God’s child.  When it came to the ventilator, we cried out to God and told Him that the decision to remove Sam from the vent was more than we could bear on our own.  It was beyond our ability to endure.  After a lot of decisions, we decided that when Sam dies, it needs to be on Sam’s terms–not on our terms.  We would agree to remove the vent and sign a Do Not Resuscitate order; however, we would still continue his medications and his feedings through his g-tube.  After a final discussion with Sam’s neurologist, we made the decision to remove Sam from the vent late Friday night.  Steve and I had a great sense of peace over the decision, even though our hearts were breaking.  Our immediate family and a few very close family friends were present, and we all told Sam how much we loved him.  There was extreme sadness, but also joy in knowing that Sam would be going from our arms only to be swooped up into the arms of Jesus.  I could picture Jesus reaching down, swooping Sam into His arms and swinging Sam in circles as He embraced him in the biggest hug imaginable!  Well, Sam and God had other ideas!  Sam was enjoying all of the attention, so he decided to stay awake and enjoy the party.  By 2 am, he was finally yawning–probably because we were making him sleepy from all of our yawns.  Steve and I took turns sleeping with Sam on a small pull-out sofa, and by morning, he was doing just fine.  On Saturday, we decided to transfer Sam to a pediatric hospice facility at St. Vincent Pediatric Rehabilitation Center, and we will see how that goes.  So far, he’s doing great!  He is still getting his medication and feedings, and we have no intention of discontinuing those.  We have put him back on his CPAP equipment.  CPAP doesn’t breathe for him, but it is considered a “comfort” to him in that he doesn’t need to work so hard to breathe because it helps to keep his lungs inflated.  Sam is stable and doing very well.  If he continues to do well, we will look into taking him home with us in a few days and resuming our normal life.  Back when Sam was just 8 days old, Steve said that Sam is running a marathon.  Just when we thought he was in the back of the pack, he’s made a move to the middle, and he’s picking up speed!  You’ve heard of Smarty Jones — wait until you see Smarty Harley!

7/5/04 – Sam is doing well today.  He kept Daddy up until 2:45 a.m. while Mommy caught up on some much-needed sleep!  We have begun talking with our home health agency about the possibility of taking Sam home tomorrow.  At first, we were somewhat concerned about Sam passing away at home, but as each day goes by, we think Sam would be much more comfortable at home with familiar surroundings.

7/6/04 – We’re taking Sam home this afternoon.  We have our home nurses lined up, and they are ready.  While we’re here in hospice, we know that life is continuing on in the world outside the four walls of Sam’s room, and we think that we’re ready to take him home and get back to a normal life too.  For the past 18 months, we have lived life day-to-day; always knowing that every moment with Sam is precious, and that hasn’t changed.  Sure, we will worry just a little more, but we can’t keep holding our breath waiting for Sam to hold his.  Each day is a new day, and we’re going to celebrate each one of them.

7/7/04 – There’s no place like home!  Sam is now home, and we all enjoyed sleeping in our own beds last night.  This morning, Sam is running a temperature, so we’re working to bring that down.  Otherwise, we’re keeping a close eye on him, and we’re taking everything as it comes.

7/8/04 – It was a rough night.  Sam continues to run a temp, and he had a lot of seizure activity overnight which are the typical signs that he is getting sick.  This morning, we took him to the ER, and it looks like he may have pneumonia and dehydration.  He’s on antibiotics, and he didn’t need to be admitted for inpatient care.

7/9/04 – Sam had a much, much better night.  When we look into his eyes, we can still see that he’s not feeling good; however, it looks like the worst part may be behind us.  I think we’ve caught it early enough that we’re staying on top of it before the pneumonia gets out of hand.  Right now, it seems Sam just wants lots of cuddling, and there are plenty of people around the house who are more than willing to sit and cuddle for hours with him!

7/10/04 – It looks like we’ve turned a corner, and Sam is feeling better now.  Sam loves to have his hair washed, and this morning, he was all smiles during his bath.  By the way, Sam turned 15 months old today.  Looking back at the past week, there have been countless Bible verses that come to mind, but this one seems to fit well.  2 Cor. 4:7-12  “But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you.”

7/12/04 – Sam is doing great, and it seems that he’s back to his old self again!  Actually, he seems a little better than his old self!  On a side note, Steve and I want to thank everyone who has been so supportive of us over these past few weeks.  Prayers, meals, messages of encouragement, phone calls, hospital visits, cards, balloons . . .  The Lord has blessed us with a church family who has ministered to our family and has provided for our EVERY need.  We are especially grateful to Don and Kelly Keehner and Bob Smith who helped us talk and pray through some of our most difficult circumstances.  There are many, many people who have a special place in our hearts.

7/14/04 – He’s no Picaso, but Sam created a little artwork with fingerpaints today.  He also went outside for a ride in his wagon and had a visit with our neighbors.  He had a tummy ache tonight, so it’s good that he only has two more days of antibiotics still to go because they have a tendency to upset his stomach sometimes.

7/19/04 – Sam had a fairly quiet weekend.  We had hoped to make it to church on Sunday, but Sam’s temperature was running a little too low that morning.  Due to his HPE, he has difficulty regulating his body temperature at times, and we seem to be going through a cold spell right now.  One day last week, we left the house with him wearing a t-shirt, sweatshirt, long pants, socks, and a fleece hat in addition to being covered with a fleece blanket.  Other babies are wearing little sundresses or shorts, and Sam is dressed like Nanook of the North!

7/20/04 – Sam is a little lonely today.  His Uncle Ben left early this morning to return to Guam after a two-week leave.  Sam’s grandpa had surgery this morning to have his gall bladder removed.  What was planned to be an outpatient surgery has turned into a few nights in the hospital.  Instead of the laparoscopic surgery, he ended up needing to have his gall bladder removed the old-fashioned way.  Ouch!  Sam was hoping to spend some time cuddling with Grandpa while he recovers, but it looks like Sam will have to wait a few days.

7/24/04 – Sam continues to do well, and he’s growing so fast!  When we look at him, he seems longer, so I measured him today, and he’s grown 1 1/2″ in length since May.  Grandpa still remains in the hospital.  Unexpectedly, he developed a complication which has delayed his discharge from the hospital.  It seems as if Grandpa is almost as complicated as Sam these days!

7/29/04 – Sam is happy . . . Grandpa finally came home from the hospital today.  Sam is doing well, but he’s had increased seizure activity in the evenings.  We are making a few minor adjustments with his medication and routine to see if that helps.  On Sunday, we’re hoping to attend a gathering of families from Indiana and Ohio who have children with HPE, and we’re really excited about going!

8/4/04 – The word of the day is “TEETH”!  Sam is a little fussy and quite uncomfortable with teeth cropping up everywhere.

8/9/04 – It was a rough weekend.  Sam has a molar coming in, and he’s quite miserable with it.  I don’t know if it’s a neurological response, but he hasn’t cried with this round of teething.  Instead, he’s having seizures and is in constant motion and restless.  We’re doing everything we can to help relieve his discomfort, but I think it’s going to be a long process.

8/12/04 – Still teething, but it seems to be getting a little better.  Guess where Sam went today.  Here’s a hint:  Think “deep fried” . . . Sam went on an excursion to the Indiana State Fair.  I don’t think he was too impressed considering that he slept through the entire thing!

8/15/04 – Sammy had a big day today.  We attended the annual St. Vincents NICU reunion at Eagle Creek Park, and Sam was able to see many friends–big and small.

8/18/04 – August is a busy month for Sam.  He has several follow-up appointments with his doctors this month, so he’s been a man about town recently.  After a visit to his pediatrician last week, he’s now up to 29 pounds and almost 30 inches.  He has an appointment with a dentist next week to check out his new teeth, and we will also be picking up ankle and foot orthotics which have been custom-made for him.  Sam will be getting a stander soon which will support his body and allow him to bear weight on his legs and feet.  We’re hoping that he likes the stander and will enjoy viewing the world from a new vantage point.

8/23/04 – Poor Sam!  The dentist confirmed that Sam is trying to cut 6 teeth all at one time.  Sam never takes the easy way, does he?

8/26/04 – Sam had a great day today!  He only had a few seizures, and he regulated his temperature perfectly.  Today, he was able to wear a t-shirt and shorts without the need for the additional layers of fleece that he normally wears.  I wonder if it has anything to do with the fact that I went shopping last week and bought him several pairs of long pants, shirts, and a warm coat for the upcoming winter months!

8/27/04 – Sam had his first “big boy” haircut today!  We took a trip to Brownsburg to visit a friend at Artise Salon for Sam’s first haircut.  He looks like a toddler now.

8/29/04 – Sam went to church today.  It’s been a while since we’ve been able to go, and it was so nice to be there.

8/30/04 – Today was another great day!  Sam was doing so well that we decided to go on a “field trip” to White River Gardens to see the butterflies.  (If you haven’t seen them yet, you had better hurry because the butterfly conservatory will only be open through Labor Day.)

9/1/04 – Pray for us . . . We have a nurse scheduled to spend the evening with Sam on Friday, so Steve and I are actually going to have an evening out of the house.  Since Sam’s “apnea episode” in June, Steve and I haven’t left the house together without Sam going with us.  We know that we need to start doing “normal” things again, so we’re going to try going to dinner and maybe a movie.  Emotionally, it will be difficult because the last time we went to dinner and a movie was the night in June when Sam stopped breathing a few hours after we had returned home.  We’re praying for a nice, quiet evening for us and a well-behaved Sam in the hands of a very capable nurse.

9/6/04 – Sam had a wonderful weekend!  Do you know how refreshing it is to spend a holiday weekend at home rather than at the hospital?!  On Sunday, we went for a nice, long drive in the country.  On Monday, Sam spent some time outside in his baby pool.  It was the most “normal” weekend we’ve had in a very long time.  Sam had minimal seizure activity, and it seems that the teething is less irritating to him now; although, at last count, there are now eight teeth trying to work their way through his gums!

9/9/04 – Sam has had a great week.  All of his therapies this week have required him to work very hard, and he’s had great sessions all week with very little seizure activity.  Tonight, Sam went to Pizza Hut for the very first time.  Typically, we don’t leave the house in the evenings, but we made an exception tonight because Sam has been doing so well.  Let me brag and tell you that Sam was the best behaved boy in the entire place!  Also, could you please say a prayer for Izaiah’s parents?  Izaiah lives in North Carolina, and he’s one of our favorite HPE friends.  (http://izaiahnc.tripod.com/  Right-click on link and select “Open in New Window”.  Cute little guy, isn’t he?)  It’s not easy to be parents with a special needs child, and Steve and I always appreciate all of our friends who have told us that they routinely pray for our marriage.  When you pray for us, would you mind adding Izaiah’s parents, as they have a great need for prayer right now?

9/13/04 – So far, September is turning out to be a great month for Sam.  He has been healthy and happy with minimal seizures for several weeks now!  He went to church yesterday and met some new little friends in the nursery.  On Friday, we took him out to “test drive” wheelchairs.  Sam is getting bigger every day, and we need to find a replacement for his stroller.  The approval process and delivery of a wheelchair takes approximately 4-6 months, so we really need to make a final decision on one soon while he still fits in his stroller.

9/17/04 – Another great day for Sam.  Sam ran a few errands with Mommy during the day and during the evening, we went to an outdoor Family Night for the Special Needs Ministry from our church.  Sam was a very good boy.  Mommy and Daddy were a little nervous because it was Sam’s first outdoor activity after dark.  We were afraid it would be too cold outside for him, but he stayed warm all evening.

9/18/04 – Sam had a busy social calendar this weekend.  Today, he went to his buddy Elias Jordan’s birthday party, and boy, was it fun!  You probably won’t believe it, but Sam actually went on a hayride and even rode a pony!  We are so proud of him!  Mommy thinks that Sammy needs a pony, but Daddy isn’t convinced . . . yet!

9/19/04 – To finish out a great weekend, Sam went to church this morning.  This afternoon, he’s again showing his desire for a pony . . . by watching the Colts, of course!

9/24/04 – Sam has had a great week, and he’s had the best little personality this week; however, he has a fever tonight, and it looks like he may have picked up the bug that has been going around.  Hopefully a good night’s sleep will make it all better in the morning.

9/29/04 – Sam didn’t get sick after all; apparently, he just wanted to test us.  Tomorrow, he’s going to the doctor to get his flu shot.

9/30/04 – Today, we celebrate the little things . . . In talking with other parents of special needs children, we have heard many parents remark that it can take their children months or years of hard work to accomplish even a simple task that a typical child can do with minimum effort.  Today, Sam rolled from his side to his tummy with no assistance!  His therapist placed him on his side, and he decided that he preferred to be on his tummy.  He has figured out that he can use his legs and his head to help himself roll over.  Today, he rolled from side to tummy three times.  While on his tummy, he also raised his head and turned it from side to side in order to watch a toy roll across the floor in front of him.  For Sam, this is huge progress and is the result of a lot of hard work and determination on Sam’s part.  Today, we celebrate Sam’s success.

10/4/04 – Sam had a great weekend, and we were able to go to church on Sunday!  In addition to your prayers for continued progress and good health for Sam, would you also pray that Steve would find favor in his search for a job?  It has been more than three months since he was downsized.  We remain steadfast in our faith, and we know that the Lord will provide; yet, we also know there is strength in the incredible power of prayer.

10/10/04 – Sam turned 18 months old today!  As much as I don’t want to admit it, Sam’s not a little baby anymore.  Also, Steve had a promising job interview on Friday, so please continue to pray for his job situation!

10/15/04 – Sam went on an excursion today to Spencer, Indiana to visit some of his great-great aunts and uncles for the very first time, and Sam was a perfect little boy during the entire trip.  A trip to Spencer just wouldn’t be complete without stopping for lunch at Gray Bros. Cafeteria, and Sam seemed to enjoy his first visit to Gray’s too.

10/21/04 – Sam is a traveling man these days.  We took a day trip to Cincinnati to visit the Newport Aquarium.  He slept through most of the visit; however, we was awake long enough to get up close and personal with a starfish, a hermit crab and a horseshoe crab–all alive.  Mommy kept her distance, but Sam was able to touch each one and feel the texture of each one.  All in all, it was a good experience for all of us.

10/24/04 – Sam has a cold today, so we didn’t get out to experience the warm weather and sunshine today.

10/26/04 – Sam still continues to battle his cold, and Daddy has a cold too.  This cold might be good for Sam in that it will help him build up a few immunities as we enter the cold and flu season.

10/28/04 – We went to the lab this morning to have some blood drawn to check Sam’s electrolytes.  He’s still battling this cold, but it doesn’t seem to be getting any better.  We’re seeing an increase in his seizures and low-grade fevers.  The bloodwork revealed that his sodium level is a little high which would indicate that he’s becoming dehydrated, so we’re giving him additional fluids.  Around our house, I’m always telling everyone, “Don’t tell Sam it’s a H-O-L-I-D-A-Y because he will want to go to the ‘hotel’ on 86th Street.”  Maybe this week, I should issue a stern warning to Sam of “We’re not trick or treating at the hospital this year, young man!”

10/31/04 – Happy Halloween from Sam!  Although he had intended to wear a bumble bee costume today, Sam has decided that he feels must more comfortable dressed as a hospital patient!  You guessed it . . . Sam was admitted to the hospital on Friday.  We already knew that he was a little dehydrated on Thursday, so when we began vomiting on Friday, we knew we needed to act quickly.  So far, all of the tests are negative for infection, so it appears that Sam just has a virus.  He is receiving fluids via IV and also in his g-tube.  Today, he will receive diluted formula, and we’re hoping that he will tolerate that.  He’s one sick little guy right now.  On a side note, I’m so thankful that I had the foresight to vote by absentee ballot.  With Sam, I just never know what I’m going to be doing from one day to the next, so I thought it might be a good idea to vote early.  Now, I’m so glad that I did!

11/1/04 – Trying to give Sam formula yesterday didn’t go as well as we had hoped; his stomach wasn’t quite ready for it, so we will try again today.  He is resting and sleeping a little better now, so that’s a good sign.

11/2/04 – Sam was discharged from the hospital this evening, and now he’s sleeping restfully in his own bed again.  It will probably be a few more days until he’s back to his old self again, but I have a feeling that he’s going to enjoy all of the cuddling and attention that he’s getting from everyone right now.

11/4/04 – Sam is still having a rough time bouncing back from his illness.  His stomach is quite bloated and full of air, so he’s been irritable and uncomfortable.  To top it off, he’s teething again!  We discovered a new tooth coming through his upper gum, and that is probably affecting his stomach too.

11/7/04 – The teething continues . . .

11/8/04 – Sam finally received his stander.  It’s an assistive device to enable Sam to stand which will serve a multitude of purposes (i.e., weight-bearing for his joints and hips, strengthening his torso, and letting gravity help with his GI issues).  Sam stood in his stander on Friday, and it was pretty obvious what it was comfortable for him.  Within five minutes, he fell asleep . . . STANDING UP!!

11/10/04 – Sam seems to be feeling a little better today.  He’s been resting better and his sleeping patterns are getting back to normal again.  We’ve been waiting for him to start feeling better because he’s due for some changes.  This week, Sam will be graduating to a longer trach size; it is time to switch him over to a more age-appropriate formula; and he’s due for a vaccination on Friday.  We’re praying that he tolerates everything, and we see improvements on all fronts.

11/11/04 – Sam now has another tooth to add to his collection!  It finally cut through his gum last night, but we have a feeling that this tooth has a few friends who will be making their appearances soon.  Let’s just say that all Sam wants for Christmas is his two front teeth!

11/13/04 – Two more teeth came through today!  That makes four new ones within the past 10 days!

11/14/04 – Today is a big day for Sam.  Today, Sam is launching a new page on his website (My Artwork), and you may notice a listing for it on the left of your screen.  Sam doesn’t intend to become an entrepreneur, but he is hoping to raise donations for something near and dear to his heart.  Please click on “My Artwork” and see how you can be one of the first to own a “Sammy Yammy Original”.

11/19/04 – Sam still isn’t back to 100% following his recent stomach illness.  During a follow-up x-ray this week, both of his lungs are showing some haziness in the upper lobes.  Last week, only one lobe had haziness.  We’re keeping a close eye on it and doing some preventative things to try to clear it up at home.  He’s taking an antibiotic now, so we’re hopeful that it will help improve things quickly.

11/24/04 – Sam is feeling much, much better (and he’s started painting again, so expect to see some new works of art available in the coming days).  New photos of Sam have been added to his Chronological page, so don’t forget to click on that page to see what a big boy Sam is now!

11/25/04 – Happy Thanksgiving from Sam!  Sam had a really great day today!  Yesterday during Developmental Therapy, Sam made a headband with feathers like the indians wore to the first Thanksgiving.  Today, he’s wearing his headband and playing with a tom-tom that Grandma gave to him.  He’s our little Sammy Miami today!

11/28/04 – Sam is continuing to show great improvement since his recent illness.  He has been more alert, awake and happy over the past few days than he has been in several weeks.  It’s so refreshing and fun!  Over the next few days, we hope to start decorating the house for Christmas, and he should really enjoy looking at all of the lights and sparkling ornaments.

11/29/04 – Would you please pray for a family we know from Connecticut?  I often talk online with other parents of children with HPE, like Sam, and there is one little boy in particular who has very similar health issues to Sam.  His name is Evan Malecki, and Evan passed away on Saturday.  Evan’s mom has been a great source of encouragement and advice to me over the course of the past 18 months.  Evan was only four years old, yet he has left a deep and lasting impression on many hearts.

12/5/04 – Sam is doing so well right now.  He seems to be enjoying his stander, and he’s currently test-driving a new wheelchair; actually, it’s called a “Kid Kart” which looks like a high-tech stroller.  He’s growing too big for his stroller, and it’s time to look at something more long-term for him.  He looks so grown up when he’s sitting in the Kid Kart.  Over the next few days, we hope to test it out in our mini-van to see how it will fit and determine whether we will need a ramp or a lift system for it.  Once we figure out exactly what we will need, we will begin the insurance approval process.  (Hopefully, it won’t take months to get it approved.)

12/7/04 – While Sam slept last night, I began decorating our house for Christmas.  Today, he can’t take his eyes off of the Christmas tree.

12/14/04 – Sam had an appointment with his developmental pediatrician on Monday morning, and he said that Sam looks better than he has ever looked before.  One of the things he discussed with us was giving Sam the opportunity to eat by mouth.  He would like us to try giving Sam one teaspoon of formula three times per day.  If Sam is successful using his suck and swallow reflex, the doctor will order a swallow study to be performed.  If Sam does well with the swallow study, we may be able to give him baby food from a jar.  Obviously, Sam will get his nutrition from his g-tube, but eating orally may give him a new type of pleasure that he’s never had before.  Can you tell that this is going to be a scrapbooking moment?!  For me, it’s exciting because I have never had an opportunity to give Sam a bottle.  After he was born, he had gotten sick so quickly that he had to be tube fed or fed via IV.  There were a few attempts by the NICU nurses to give him a bottle, and although fairly successful, he was too slow and became uninterested.  All of those attempts happened during the night or the early mornings when I wasn’t there, so I’ve never even seen him eat from a bottle.  I always assumed that my window of opportunity had passed, so I’m excited that Sam might have another opportunity in an environment where he’s comfortable and at ease.

12/15/04 – Yesterday, Sam played with blocks, and we would cheer each time he knocked the blocks over.  In therapy today, we built a gingerbread house and Sam decorated it with candy; however, all we could do was say, “Yea, Sammy” when he knocked the gingerbread house down too!

12/18/04 – I listed some new artwork today, so don’t forget to click the link above to bid on one of his original works of art.

12/22/04 – Sam is doing well, and we are looking forward to Sam’s second Christmas!  Steve and I have always enjoyed giving to others, but this year we find ourselves on the receiving end.  We are hoping and praying that the new year will bring a job for Steve, but in the meantime, we have been blessed to have others looking out for us during this holiday season.  Yesterday, Sam had two very special visitors who arrived bringing gifts through the United Christmas Service program.  We also received a large amount of paper products, diapers, cleaning supplies, and other daily essentials from a family in our church along with members of their small group who attend Zionsville Presbyterian Church.  And, Sam’s nurses and therapists have been spoiling us with baked goodies and gifts for Sam.  Not only has God blessed us with His Son; He’s blessed us with our son and with thoughtful friends and generous strangers who have made this Christmas season even brighter!

12/25/04 – We have been joking about Sam getting his two front teeth for Christmas, and he has taken us seriously.  It looks like there is one of the big ones coming in, and he’s pretty miserable with it.  He spent most of his Christmas Day asleep because he just didn’t feel good all day.

12/29/04 – The past few days have been pretty rough for Sam because he’s still in quite a bit of pain from teething.  He still hasn’t been able to play with any of his new toys.  Mommy is feeling under the weather, so Daddy is staying very busy tending to all of Sam’s needs.  There is some good news . . . We received the approval from Medicaid for Sam’s wheelchair, and his “Kid Kart” is being delivered this afternoon!  We will need to make some adaptions to our minivan, but hopefully the process will be somewhat stress-free.