2006

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.