Sammy Yammy and HoPE

1/1/07 – Sammy is still sick. He isn’t worse, but he isn’t much better either. He had a nice, restful sleep for about 6 hours today, so we’re hoping to see some improvement tomorrow. As far as Grandpa goes, he is still in the hospital in the progressive care unit being closely monitored for blood pressure, heart rate, oxygen levels, apnea, etc. He went to the hospital to have surgery on his neck, but other complications have developed which prevent him from being discharged. He may remain in the hospital for several more days as doctors determine the cause for his symptoms.

1/7/07 – Sammy is beginning to feel better, but he’s definitely not 100 percent yet. Grandpa is now home and recovering from his recent hospital stay.

Although I try to keep Sammy’s website focused on Sammy rather than considering it a “blog” and allowing it to become my own personal soapbox, I did want to comment on the “Ashley Treatment” which has become a hot topic in the media and among bloggers. Ashley is a 9 year-old child who has been diagnosed with “static encephalopathy of unknown etiology”. She doesn’t have HPE like Sammy has, but in many, many ways, she is very much like Sammy.

Two years ago, we made the difficult decision to remove Sammy from life support believing that his body was shutting down. It was an excruciating decision, yet I know that it was the very best decision because we put our faith in the Lord and made the most unselfish decision of our lives. Looking back two years later, I sometimes ask myself, “What were we thinking?!”; “How in my right mind could I have ever agreed to remove his life support?!” We made our decision based upon love and prayer, and I hope that Sammy’s continued survival is proof that we made the best decision for him.

I’m not here to judge Ashley’s parents, and I can’t say whether they have made the right or wrong decision. I do know, however, that they made their decisions with love and devotion to their daughter. When it is a decision made in love, it’s the best decision.

1/23/07 – Go Colts! At halftime of the Colts game on Sunday, Sammy wanted to go “scooter-boarding”. The scooter board is basically a flat board on four short wheels which allows Sammy to lie on his tummy while the board supports his upper body and allows him to use his legs for crawling. He has been using his scooter board a lot recently, and during halftime of the Colts game, he managed to scoot himself through our entire house, going farther than he’s ever gone before! After witnessing Sammy’s determination and willingness to persevere, we were thrilled to see the Colts do the same thing in the second half. Now, Sammy wants to know if there’s a Super Bowl for scooter-boarding too.

2/2/07 – Sammy’s first ear infection. Can you believe that he went nearly four years before he ever had an ear infection? He has made up for lost time, however, because both ears are infected! He’s been very, very fussy this week which is so out of character for him.

Even though he is feeling yucky, one thing that seems to make him happy is his TJ BearyTales, an animated bear which plays games, sings and tells stories. One of Sammy’s favorite stories is called “Scaredy Bear of the Dark”, and it involves using a flashlight which is Sammy’s newest favorite thing. This particular story appeals to him because one of the characters in the story is “Sammy SpaceBear”, and he definitely recognizes the use of his name! Sammy especially likes it when TJ says, “Sammy Wammy!”

2/26/07 – I’m so sorry that I’ve been lax in providing updates. Basically, no news is good news. There were times in the past when I could have published updates 2-3 times a day because Sammy’s health situation was so moment to moment. These days, he’s busy with preschool, therapies and the occasional follow-up appointments with various specialists. We are still considering the Vagus Nerve Stimulator to help control Sammy’s seizures, and we’re currently awaiting pre-approval from the insurance company. Once that approval is received, we will schedule the surgery to implant the stimulator.

We have been talking very seriously about remodeling our house. Each day, the house feels smaller and smaller, and Sammy’s equipment is getting bigger and bigger. If we add on, we can have a bonus room specifically for Sammy’s therapy equipment and also an accessible bathroom for him. Because of the smallness of our bathroom, Sammy usualy gets a “bed bath” rather than being able to sit and play in the bathtub. He enjoys baths in the bathtub, but it’s just difficult given the small space.

Now, a “bed bath” may sound like something that happens in the hospital, Sammy’s bed baths are quite luxurious. We actually refer to them as the “spa treatment” because he gets his hair washed 2-3 times including a head massage. Then, all of his parts are washed and dried using a big, fluffy towel. Because he sometimes gets ingrown toe nails, it’s not uncommon to see Sammy lounging with his feet in a bowl of warm water. If he’s been fingerpainting, he’s been known to have his hands in bowls of warm water too. After the bath, he gets a full-body massage with lavendar scented lotion, and lastly, he receives an application of Twinkie flavored lip balm. Let’s just say that Sammy is the cleanest child in the neighborhood!

3/6/07 – Sammy went to the circus on Friday with his classmates from school. Because of his wheelchair, we were able to sit down on the floor just in front of the 3rd ring. The view was great, but we were almost a little too close to the tigers for my comfort! Sammy enjoyed the elephants, the Thunderdome stunt riders, and the trapeze show.

Please keep Sammy’s friend, Rachel, in your prayers. She is scheduled to have surgery at 9am tomorrow at Riley Hospital, and the surgery is anticipated to last 4 hours. Rachel is very near and dear to our hearts.

3/26/07 – Sammy is enjoying his Spring Break! Because he goes to school on a year-round schedule, he gets 3 weeks of Spring Break, and today begins his second week. He just finished two weeks of antibiotics for an h pylori infection in his stomach, and he’s a different boy now that his stomach is feeling better. He’s full of smiles, and he has become such a flirt!
Sammy started Augmentative Communication therapy several weeks ago, and he is now beginning to work with a switch that he can activate by turning his head. The switch is connected to a communication device which contains recorded messages. As an example, as Sammy gets ready for school each morning, we can record messages on the switch which will encourage him to communicate and seek interaction from others he encounters during the day. Here’s an example:

Sammy activates the switch and it says, “Good afternoon. How are you today?”
[awaits response from someone]
Sammy activates the switch and it says, “Isn’t it a beautiful day?”
[awaits response]
Sammy activates the switch and it says, “Guess what I did last night?”
[awaits response]
Sammy activates the switch and it says, “Mommy, Daddy, and I went outside and I had so much fun riding in my wagon.”
[awaits response]
Sammy activates the switch and it says, “It’s been really nice talking with you.”
[awaits response]
Sammy activates the switch and it says, “See you later, Alligator!”

4/3/07 – It’s been a rough few weeks in the HPE community. Sammy’s friend, Rachel, is still hospitalized from her surgery on March 7. Complications arose in the hours following her surgery, and as often happens, one thing led to another. Hopefully she will be discharged later this week. But, we’re keeping that a secret from Rachel because as soon as she hears the word H-O-M-E, she seems to do something that keeps her at the hospital longer. Since March 7th, we have had four of our Indiana children with HPE hospitalized at Indianapolis hospitals.

Our hearts are very sad this week as Sammy lost one of his many friends with HPE. Last year, we posted a photo of Sammy with Sage from Springfield, Illinois. Sage and Sammy look so much alike that they could easily be mistaken for twins! Sage developed pneumonia last week, and passed away on March 30. Rachel’s mom and I drove to Springfield yesterday for Sage’s calling and to offer our support and love to her family.

In memory of Sage, Sammy and I wanted to share something that we wrote about Sage last year in celebration of her second birthday.

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Sage is a very popular flower grown in Central Illinois providing year-round color and splendor to indoor and outdoor settings.

Sage is a perennial favorite which makes a lovely addition to life’s garden. She thrives in a safe, nurturing environment with sunlight and plenty of space; may be found frequently near playgrounds and pools.

Sage can be grown in a variety of settings, but prefers to take root in a familial garden where she is sheltered by others who will provide comfort by wrapping their long arms around her while sowing seeds of patience and hope.

For optimal growth, provide essential nutrients daily, with additional vitamins as needed. Water frequently, but be careful not to underwater or overwater. When oversoaking occurs, change bedding as soon as possible.

Sage tolerates cool, contained environments and shows low tolerance to high temperatures. On summer days, appreciates a light misting with water to prevent overheating. Always hardy in turbulent conditions and has been known to remain resilient even through tornadoes.

Although a beauty year-round, Sage’s optimum grandeur is revealed on July 8 of each year as all of the flowers in the garden turn toward the brilliance emanating from her and rejoice at her presence and inclusion in life’s garden.

4/4/07 – It’s Spring Break for Sammy, but he is still finding time for a few community service projects. Yesterday, he joined the North Central Kiwanis Club to help fill 5,000 Easter eggs with candy in preparation for the Kiwanis Club’s annual Easter Egg Hunt for children and families in the Nora area.

4/7/07 – Sammy is gearing up for a lot of fun over the next few days. Tomorrow is Easter Sunday, and Sammy’s birthday is only 3 more days away! Today, he colored Easter eggs, and he thought that was great fun!

4/8/07 – Happy Easter! We had hoped to attend church this morning, but . . . Sammy didn’t sleep last night. His nurse had to wake us at 2am to seek our direction because he had thrown up, was having a lot of seizures, and his tummy was really bloated. By morning, he had thrown up again, was still awake, and the seizures had continued. Something is not right, so we will be calling his GI doctor later this morning.

4/10/07 – It’s Sammy’s birthday today! The downside is that Mommy won the Jury Duty Lotto and must report for jury duty today. Sammy was born at 12:27pm, so technically, if I get dismissed from jury duty by Noon, I won’t miss his birthday at all, and I’ll still be able to participate in his celebration at preschool. If I get selected to sit on a jury, the party is over, so to speak!

Update: It wasn’t much of a birthday celebration for Sammy today. He wasn’t feeling good, so he didn’t go to school afterall. I, on the other hand, did such a “fabulous” job at jury duty that I was selcted as a juror, and I get to go back again tomorrow for the second day of a 2-day trial! It’s interesting to see how our judicial system works, but Sammy’s not too thrilled that I’ll be away from him.

4/11/07 – Sammy is feeling much, much better today! He had occupational and physical therapies today, and after some really good stretching exercises, he was back to his usual flirty self! Yesterday, he was doing some jerking movements on the left side of his body which were obviously uncomfortable and frustrating to him, and his physical therapist believes that the jerking movements were muscle spasms.

Because he didn’t feel good and I was so tired last night, we decided to celebrate Sammy’s birthday tonight instead. We took him to The Tie Dye Grill, and of course, he had to wear his tie dyed shirt. Then, we stopped by to visit Sammy’s friends at the CVS Pharmacy. It sounds strange, but it was a momentus occasion for us. Can you believe that we have been getting Sammy’s prescriptions at this CVS since he was four months old, yet we have never taken him inside the store?! (Thank goodness for the drive-thru!) As you might imagine, Sammy provides this CVS with a lot of business, and anyone who has worked very long in its pharmacy is familiar with Sammy. They are so familiar that we actually include the CVS Pharmacy on our Christmas card list each year, and there is a photo of Sammy taped up somewhere behind the counter. Sammy has developed a relationship, so we thought it was high time that we took him inside for an in-person meet and greet with the pharmacy staff.

5/14/07 – Mother’s Day was very relaxing and low-key this year. Sammy has a double ear infection, so Sammy spent most of the day cuddled up in my lap getting lots of TLC!

When I remember my first Mother’s Day, it was quite a contrast. Sammy was only 4 weeks old, and he was still in the NICU recovering from the devastating infection to his intestines. Just a few days prior, I had been taken via ambulance to the ER suffering from chest pains, difficulty breathing, and extremely high blood pressure. I was diagnosed at the ER with reflux and anxiety. (Back in those days, most of our meals were prepared by friends or church members . . . do you know how embarrassing it was that this attack happened after eating a meal prepared by my then-boss’s wife?!) On Mother’s Day, my hands and feet began itching uncontrollably, and my skin and eyes had turned yellow! The “reflux and anxiety” a few days earlier was actually a gall bladder attack, and I had developed jaundice!

On Mother’s Day that year, Sammy’s grandmas and grandpa came to visit him and spend their Mother’s Day with him. There hadn’t been too many opportunities to hold him up to that point, so I made sure that the grandparents were able to hold him and spend time with him. By the time everyone else was finished holding him, he began having more seizures and had started vomiting. (We later discovered that these were his early symptoms of a fungal infection in his bloodstream which led to a 21-day regimen of powerful antibiotics thus extending his hospital stay!) I never did have an opportunity to hold him on that first Mother’s Day; I itched nonstop; I had turned yellow; and, we had the worst-ever mystery casserole for lunch in the hospital cafeteria!

On that first Mother’s Day, I exercised a priceless gift that has carried me through time and time again . . . the gift of a sense of humor!

5/15/07 – Sammy is happy right now, but by the end of the day, he’s going to be so mad at us! We have been battling ingrown toenails on both of Sammy feet for nearly three years now, and he is scheduled to have a procedure later this afternoon to prevent the problem. In reading on the internet, I discovered that a bacterial infection due to an ingrown toenail can become very serious and life threatening for someone with a pacemaker or artificial joints if the infection spreads to those sites. Because Sammy is scheduled to have a vagus nerve stimulator implanted on June 11, we decided that the ingrown toenails need to be addressed now before the stimulator is implanted. And, once his toes have healed, he will be able to use his scooterboard again!

Update: Sammy did great during the procedure! He didn’t cry, and he sat calmly in Daddy’s arms while the procedure took place. Once again, he impressed us with his bravery and toughness. He may look fragile and delicate on the outside, but he’s one tough little guy on the inside!

5/16/07 – Please pray for Sammy’s friend, J.J. We have been praying for him every night for months, and we just learned that J.J.’s family received the long-awaited call confirming that everything is in place for him to receive a multi-organ transplant. From what we understand, surgery will be performed immediately.

5/25/07 – Sammy had a new experience today! His preschool class went on a field trip to a horse therapy center, and Steve and I went along too. Sammy rode two laps on the back of a horse. The first lap, they had him lying down. For the second lap, I asked them to let him sit up. They used two Boppy pillows for him to lean on, and he used them for support; however, as he finished his second lap and approached all of his friends who were watching and cheering for him, he used his arms to push himself up, and he proudly held his head up and smiled to show how much fun he was having! After Sammy has recovered from his surgery in a few weeks, we hope that we might be able to inquire about Sammy receiving horse therapy on a regular basis.

5/28/07 – Thank you for prayers for Sammy’s friend J.J. He continues to hold his own, and prayers are being answered.
It was a rough weekend for Sammy. He has developed a stye in his left eye, and he’s not very happy about it. We’re hoping that it will clear up and not cause a delay in his upcoming surgery. He was uncomfortable and frustrated by the stye, so we saw an increase in his seizure activity today. He has a follow-up appointment with the podiatrist on Tuesday, and I have a feeling that we may be stopping by to see the pediatrician about his eye also.

6/4/07 – Thank goodness it’s Monday morning, and the weekend is finally over! Our home became an infirmary over the weekend. Sammy had a stomach virus on Wednesday. On Thursday night, Grandpa was vomiting. By Friday at 7am, I was vomting, and by 10am on Friday, Steve was vomiting. Sammy’s Thursday night nurse went home on Friday morning with the same symptoms too. By Friday, Sammy was all better, but Mommy and Daddy were down for the count. It’s the first time when we’ve both been sick simultaneously and unable to take care of Sammy, but Grandma pitched in and kept everything running smoothly.

Please keep us in your prayers this week as Sammy’s surgery is scheduled for next Monday!

6/10/07 – Tomorrow is surgery day. Sammy is scheduled for surgery at 8am, so we will need to be at the hospital at 6am. Sammy is an early bird by nature, so he will probably be awake and ready to go by 5am. We spent the day packing everything we will need for a 2-3 day stay, and it’s embarrassing to see just how much stuff we’re hauling with us. Sammy doesn’t travel light!

The surgery is scheduled to last 90 minutes-2 hours, and he will be in recovery for a while following surgery. We hope to post an update in the afternoon when he’s in his room and things have settled down.

UPDATE: Sammy arrived for surgery; however, the surgery did not take place as planned. Sammy’s trach has presented some challenges for the surgeon and anesthesiologist, and those challenges will need to be addressed with Sammy’s ENT, who may need to be present for the surgery. Proceeding with the surgery until those issues are addressed presents danger to Sam.

At the present time, Sammy is staying at the hospital overnight for observation following the sedation he received in the operating room. The neurosurgeon hopes to reschedule the surgery for next Wednesday with a Tuesday overnight stay for pre-op prep and better IV access. We are pleased that the physicians today were cautious and not overly aggressive in continuing with the procedure.

6/19/07 – VNS Surgery: Take 2 – We’re back at the hospital attempting Sammy’s surgery to have the vagus nerve stimulator implanted. Sammy was admitted today so that a PICC line could be inserted to give better IV access; unfortunately, it has been a very long and busy day for the vascular lab, so he won’t have the procedure for the PICC line until 10pm. It will make for a long night for all of us, but once the line is in, we can go forward with the surgery. The surgery is scheduled for Wednesday morning at 10am. Please keep Sammy in your prayers for a successful surgery. As you pray for Sammy, please include his friend Emma who is also here at the hospital in the ICU with an infection. Emma is one of our precious babies with HPE.

6/20/07 – Surgery went well, and Sammy’s surgeon was very pleased. He will spend the night in the pediatric ICU tonight. At the present time, the stimulator is turned off, but we believe that it will be activated by his neurologist when he comes by to see Sam.

6/21/07 – Sammy is resting comfortably in his own bed at home tonight! He is whining a little and doesn’t want us to touch near his incision sites, but Tylenol does seem to make him feel more comfortable. It’s good for all of us to be back home again. Over the weekend, I will try to update and explain more about the VNS and how it is working for Sammy.

6/22/07 – Sammy had a rough night last night. Today is the second day post-op, and it seems that the second and third days are usually the worst after surgeries for most people. He’s really sensitive to light, noise and touch right now, so we’re whispering and tip-toeing. We’re keeping his room darkened, and he’s listening to soft lullabies which seem to make him happy.

6/24/07 – Sammy is feeling much better today. He is still sore, but he doesn’t seem to be in pain. By mid-week, I think we will be back to our routine again.

7/6/07 – If you have time, check out this Op/Ed from USA Today. It says a lot of the things that I’ve been feeling recently, but what really disturbs me are some of the comments that readers are expressing after reading the editorial.

7/7/07 – So far, Sammy’s incisions are healing nicely following his recent surgery. Yesterday, Sammy had an appointment to make the first adjustment to the stimulator. When it was first turned on following surgery, it was set to cycle every 5 minutes with 30 seconds of stimulation at the lowest amount of current possible. In addition, it also was set to allow us to swipe a special magnet over the pulse generator to deliver on-demand stimulation for 60 seconds. In the days approaching Sammy’s appointment, it seemed as if we were using the magnet more frequently with worsening results. At Sammy’s appointment yesterday, his neurologist analyzed the data provided from the pulse generator and adjusted the VNS settings. Now, Sammy’s stimulator is set to cycle every 20 seconds for 7 seconds of stimulation at the lowest amount of current possible. So far, the adjustment seems to be making a positive difference as he has had only a handful of seizures since we left the neurologist’s office!

7/11/07 – Sometimes I’m absolutely amazed at just how much we have managed to absorb and learn through this journey with Sammy. Over the weekend, Sammy was extremely sleepy. When I say extremely sleepy, I mean Rip Van Winkle sleepy! As the hours went on and the slumber continued, we began to speculate on what might be causing it. The adjustments to the VNS? His recent surgery? A drug interaction? The weather and alignment of the planets?!

By process of elimination, we realized that Sammy started taking an antibiotic last week for a recurring digestive issue, and we believed that the antibiotic might be intensifying the side effects of other medications–namely his anti-seizure medications which cause sedation. I called the pharmacy but didn’t get a sufficient answer to my questions. I then called Abbott Laboratories, the maker of the antibiotic, to inquire about possible interactions. Abbott needed to do some in-depth research based upon all of Sammy’s medications, and in the meantime, I began digging deeper into the internet in my role as “citizen scientist”. I did discover a few drug websites contained warnings regarding a report of a 3 year old child experiencing extreme sleepiness while taking the antibiotic and Phenobarbital. (Ding, ding, ding!!!)

I called the doctor who prescribed the antibiotic, and the doctor decided to prescribe a different antibiotic treatment. Now, he’s getting a lovely little pink cocktail of Flagyl, Amoxicillin, and Peptobismol twice a day! Abbott Laboratories did get back to me and I learned that the antibiotic he was taking goes through the CYP384 pathway which is the same pathway that many of Sammy’s anti-seizure meds go through. I don’t know exactly what that means, but I feel really smart now! As for Sammy, he received his first dose of his new cocktail at 5pm yesterday. By 6pm, he was awake, alert, and happy. By all signs and indications, we could be led to believe that we found a “magic potion”, but I’m more inclined to believe that Sammy heard me pick up the phone and call his doctor, so he realized that he needed to straighten up and fly right! That’s another thing I’ve learned over the years–just pick up the phone to call the doctor, and he will usually behave!

7/12/07 – The switch to the new antibiotic seems to be working because Sammy is awake. Actually, he’s been awake since 4am this morning with few noticeable seizures!

While Sammy was in his sleepy phase earlier this week, we took him to the Children’s Museum hoping that the activities and stimulation might encourage him to come out of his slumber. It didn’t work, and he slept the entire time! Whenever we’re out in the community with Sam, we usually field a lot of questions from strangers. We know that Sam is in this world to be a teacher, so we don’t mind answering questions and sharing Sam’s story–especially when children are the ones asking.

While at the Children’s Museum, Sammy was sound asleep in his wheelchair and was wrapped up in a warm blanket because he tends to get cold when he’s asleep. We were waiting outside one of the Museum’s theaters for a special program, and there was a mom with two children also waiting. The children were probably aged 7 and 5. The 5 year old was a boy, and I imagine that he had been catching glances at Sammy for a while. Finally, his curiosity had gotten the best of him, and I heard him ask his mom, “Is that boy fake or real?”

I had to chuckle when he said it because I can totally understand why he asked; we were at a museum where everything looks real, but usually isn’t real. Aside from babies, how many kids do you see sleeping at the Children’s Museum? When it’s 90 degrees outside, how many kids are bundled up in a blanket? The boy’s mom recovered from her embarrassment quickly and explained that Sammy was very real. I tried to give the mom a smile to let her know that it was okay. At least he didn’t ask the question that a few other children have asked which is, “Is he dead?”

7/25/07 – Sammy has been busy, busy, busy! Sammy’s first day of the new school year was last Friday, so we’ve been trying to get back into his school routine again. We had an appointment with his neurologist last Thursday to make adjustments to his VNS settings, and so far, so good. Since the VNS was implanted, we’re beginning to see changes in Sam that we weren’t anticipating, but they’re good changes. For example, his eyes are opened wider, and he’s visually examining things better. He’s turning his eyes and his head to look toward people and objects. Before, he didn’t physically grasp objects placed in his hand. Now, he’s beginning to squeeze when he feels something pressing against his palm. These are things that newborns do; however, Sammy had so many seizures from the very start that the seizures never allowed his brain the opportunity to do these things. On Friday and Saturday, we’re holding a garage sale at our house with a portion of the proceeds to benefit Families for HoPE, the nonprofit organization we helped to form. (If you’re looking for infant and toddler clothes and toys that were never worn/used or are in nearly-new condition, we can hook you up!) Sammy is helping on Saturday by selling home-grown tomatoes, cucumbers and peppers from our garden, along with some baked goodies and treats. In addition, Sammy will be handing out Families for HoPE flyers to help raise awareness about holoprosencephaly. (Notice that NASCAR drivers are in town this week making lots of public appearances for sponsors and charities, but we have something just as special at our event–we have Sammy Yammy!)

8/13/07 – The heat and humidity has not been a friend to Sammy these past few weeks. Aside from the usual routine of preschool, therapies, and doctor appointments, we have tried to keep him inside as much as possible. If the weather isn’t too hot later this week, we’re hoping to visit the State Fair. Sammy really enjoyed it last year–especially the cows!

8/22/07 – On Sunday, we had the opportunity to attend the annual St. Vincent Women’s Hospital NICU reunion/picnic. It was so much fun to see all of the doctors, nurses, therapists, and staff who were so much a part of our lives just four years ago. It was a great feeling to be able to share Sammy with them four years later knowing that they all truly appreciate his fortitude to overcome such overwhelming medical challenges. We have the deepest respect and gratitude to the entire NICU staff at St. Vs for their Spirit of caring for our special son.

9/4/07 – Life has been BUSY! Two weeks ago, Sammy had his very first sleepover! Actually, Sammy was invited to sleepover at a friend’s house, but we decided that maybe his friend should sleep at our house instead. Did I mention that his friend is a girl?! Sammy now thinks that he’s THE MAN, and he never grew tired of getting hugs and kisses and hearing her sweet voice saying, “I love you, Sammy”. Steve has somehow managed to break a bone in his foot. He doesn’t know how it happened, but he has enjoyed making up elaborate stories about how it could have happened. For now, he’s wearing an aircast for the next four weeks, and if it doesn’t heal properly, he will be looking at surgery in the near future. As long as he can walk, we’re okay. I can’t push more than one wheelchair at a time!

9/5/07 – Sammy is gearing up for the big game tomorrow when the Colts play their first game of the new season. An announcement was made today that “Sammy’s hospital” has been renamed as “Peyton Manning Children’s Hospital at St. Vincent”. Sammy thinks it’s pretty cool that Peyton and his wife want to help kids like him.

9/9/07 – It was a rough weekend. Sammy had an increase in the number of seizures, he was more restless, and he was sensitive to noise. In recent weeks, we have discovered that Sammy is a country music fan, and over the weekend, that was the only thing that seemed to soothe him. While watching “60 Minutes” a few weeks ago, we saw an interview with Kenny Chesney. At one point during the interview, they played “She Thinks My Tractor’s Sexy”, and Sammy thought it was funny! Since that time, he’s definitely showed an interest in country music and with certain songs in particular. His favorite songs seem to be sung by males with deep voices. Sammy is definitely beginning to express his likes and dislikes!

9/21/07 – We finally discovered the cause of Sammy’s recent discomfort and seizures. Last Friday, he had an upper GI scope which revealed yeast in his esophagus. His doctor said that he has probably been feeling a burning sensation in his esophagus, and it has probably been growing there a while. He’s now taking a medication to treat the yeast, and within two doses, he was feeling much, much better! On Tuesday, Sammy went on a field trip to an apple orchard where he picked his own apples, and on Thursday, his preschool classmates and Sammy turned some of the apples into applesauce. It is that time of year again. First the apple orchard, then the pumpkin patch!

9/29/07 – Are you ready to rumble?! Sammy is! Sammy is going to be a wrestler at the 7th Annual Timmy Foundation Pro Wrestling Event on Sunday, October 14 at the Knights of Columbus (71st & Keystone). Tickets are $10 and will be available at the door. This is a great family event with a pro wrestlers show and the main event – DR. DOOM (aka Dr. Chuck Dietzen) vs special needs children from Indianapolis and Louisville. Doors open at 1:30pm, and Sammy hopes to see you there!

10/31/07 – Sammy has an ear infection. Tomorrow, we’re going to see his pediatrician because he’s been on an antibiotic for five days now, and he’s still very uncomfortable. I have a feeling that we will be scheduling an appointment with his ENT sooner rather than later. Sammy’s grandpa is in the hospital–more specifically, in the ICU. We had to call an ambulance for him on Sunday. Many, many tests are being run, but it does appear that his pancreas is involved. His blood pressure has been extremely low at times (38/17), and he received two units of blood on Sunday. Internal bleeding is suspected; however, the cause has yet to be discovered.

11/1/07 – If you have a chance this weekend or next, be sure to check out the Indianapolis Monthly Art House where Sammy will have a piece of his artwork on display. Admission is $12 at the door with proceeds going to Peyton Manning Children’s Hospital at St. Vincent for its Child Life activities. Additionally, Sammy’s piece will be up for bid in a silent auction during the preview party tomorrow evening. Also, here’s a link to a video about the Timmy Foundation wrestling event in which Sammy was a participant a few weeks ago.

11/4/07 – Grandpa was discharged from the hospital on Saturday. He had developed sepsis, and antibiotics are treating the infection. In the coming days, he will have additional testing to his pancreas. Sammy’s ear infection is improving, so that’s good news.

11/9/07 – We learned something new about Sammy this week–he has food allergies. Allergy testing was performed recently, and we learned that he has allergies to eggs, milk, peanuts, and soy. In light of this discovery, we will be transitioning him to a new formula. I guess we can say that Sammy has become a vegan.

11/11/07 – Sammy is having respiratory issues this weekend. His lung sounds are course and wet, and we’re giving him nebulizer treatments every four hours. He’s not sleeping much and is having more seizures, so he’s keeping us on our toes. Also, Grandpa went back to the ER late last night with problems with his pancreas; he’s been admitted for an inpatient stay.

11/12/07 – Last week, our nearly six year-old nephew asked us a question, and we weren’t exactly sure about the appropriate way to answer it. His question was, “Is Sammy going to die?” He has asked me questions about heaven in the past, so I decided to delicately remind him that we are all going to die one day, but we can go to heaven. He thought about this for a moment, and said, “I know that, but is Sammy going to die?” I then told him about how all of the doctors told us before Sammy was born that Sammy wouldn’t even live one day. My nephew then replied, “Hey, they tricked you!” I thought about it for a moment, and then I had to correct him and remind him that instead, “Sammy tricked them!” 4 1/2 years later, and he’s still tricking them on a regular basis!

11/15/07 – We took Sammy to the pediatrician on Monday for wheezing. A chest x-ray showed possible pneumonia in his left lung; however, I’m not 100% convinced because his left lung has always had a cloudy spot on x-rays since he was an infant. It’s obvious that he’s sick, so we’re treating it as pneumonia with antibiotics, steroids, and continued nebulizer treatments. I wouldn’t say that we’ve seen a big improvement, but his condition hasn’t worsened either. If he behaves himself, Grandpa is probably coming home from the hospital today. He still needs additional testing to confirm the exact problem, but the testing cannot be performed while he has inflammation of his pancreas. Over the next several days, he will eat a low-fat liquid diet with hopes that the testing will be possible next week. On Saturday, I’m gathering with a group of HPE moms. Steve calls them my “peeps”. We’re getting together to do some scrapbooking/crafts, chatting, and snacking! I haven’t seen many of them in over a year, and I’m looking forward to spending the day with them. It’s sometimes so refreshing to spend time with other people who speak my language and know what it is like to walk in my shoes.

11/27/07 – Sammy is feeling better, and he returned to school this week after his illness. Since our last update, Grandpa was discharged from the hospital. He managed to get through the Thanksgiving holiday, but returned to the hospital on Sunday afternoon. He continues to have pain due to his pancreas; however, he has also been diagnosed with pneumonia this time around. We’re not sure when he will be discharged. November has been a rough month!

12/5/07 – Sammy has recovered from his illness, and he even ventured out on Sunday to attend the Tendercare Home Health Agency Christmas party. We enjoy this party because it gives us a chance to catch up with old friends who are staff members or patients of the agency, and Sammy always enjoys the opportunity to sit on Santa’s lap and pose for a photo. This year, we think Sammy whispered “iPod” in Santa’s ear!

Grandpa is back home again after a week in the hospital. For those who are counting, this is the third weekly hospital stay in six weeks. During this visit, several residual gall stones were removed which had been clogging a duct from his pancreas. (His gall bladder was removed three years ago!) Since removing the stones, he has been in less pain and discomfort; however, symptoms of pancreatitis continue to persist.

12/19/07 – Overnight on Monday, Sammy started showing signs of an illness. We already had a scheduled appointment with Sammy’s GI doctor for Tuesday morning, so we thought we’d have the GI doctor take a look at his ears, listen to his lungs, etc. in addition to the usual GI stuff. He had vomitted a little yellow/green stuff, and his cheeks were very flushed with a slight fever, so she sent us to the ER to have a chest x-ray and labs.

As it turns out, Sammy’s lab work indicates pancreatitis. (For those who aren’t keeping up, this is Grandpa’s recurring diagnosis too!) The first assumption was that the gall stones in Sammy’s gall bladder might be the cause of the pancreatitis. As it turns out, it doesn’t appear that the gall stones were the culprit, and at this point, we aren’t sure what is causing it. His Lipase levels are decreasing quickly which is good; also, he has stopped vomiting. (At one point yesterday, he was in the true spirit of the holiday season with green and red vomit and that was frightening!) As for how, he is receiving IV fluids and the only things going into his stomach are medications. It is possible that he might begin slow trials of Pedialyte tonight to see how he tolerates that.

As it stands now, we anticipate that Sammy will be in the hospital for at least a few days, but we haven’t even begun discussions about going home. It’s possible that we might be celebrating Christmas at Peyton Manning Children’s Hospital this year.

12/20/07 – Sammy had a good night, and he is tolerating the Pedialyte very well. Later today, he will probably get half strength formula, and we will see how he tolerates that.

Sammy and I did have one moment last night which made me reflect on our journey together. It isn’t easy to hold Sammy on your lap at the hospital, yet he still expects to have cuddle time together. Last night, I sat in his hospital bed, and he sat on my lap. It was in that moment when I realized that I had missed something . . . When Sammy was born, he went directly to the NICU and stayed there for over three months. I never had the experience of having him brought to my room after delivery, and we missed out on those snapshot moments of Mommy holding her newborn baby in her hospital room. As I sat in Sammy’s bed with him on my lap last night, I realized that the moment had finally arrived. It was just 4 1/2 years later, and the baby now weighs in at 47 pounds!

UPDATE: Sammy was discharged from the hospital tonight, and he’s resting at home.

12/23/07 – Sammy is sleeping a lot but seems to be resting comfortably for the most part. It is believed that a gall stone or a portion of a gall stone may have caused an obstruction in Sammy. If we begin to see the same symptoms again, we are to call the doctor right away so that blood tests can be performed. If his Lipase levels are elevated again, his gall bladder will be surgically removed. Sammy is a high surgical risk; otherwise, his gall bladder would have been removed before he left the hospital a few days ago. We did call the doctor yesterday after an episode of green bile coming out of his stomach, and she recommended going back to Pedialyte. So far, he is keeping everything down and Tylenol seems to be helping with pain.

12/25/07 – Merry Christmas! We spent Christmas at home; however, Sammy decided to put in a late night appearance at the ER on Christmas Eve. He was crying/wimpering, showing signs of pain, and producing the green bile again. His Lipase levels were elevated, but only 488 rather than the high of 2400 we saw last week. We were able to bring him home with us, and he is now getting pain medication to help keep him comfortable. Tomorrow, we will take him to the lab for additional tests and see what we do from there.

By the way, Santa did bring Sammy an iPod Nano, and he loves it! While we were at the hospital last week, his CD player and CDs made the stay so much more bearable for him. He listened to Kenny Chesney’s Greatest Hits album over and over again. When we tried to change to a different CD, he would get upset and have seizures. If we put Kenny back on for him, he settled down and stopped seizing. Sammy takes four different anti-seizure medications daily and has a vagus nerve stimulator; who knew that Kenny Chesney would be such an asset for seizure control! As you can imagine, Kenny dominates Sammy’s iTunes Playlist.

12/27/07 – Sammy is back in the hospital again. We had to take him on Wednesday night due to green bile, increased temperature, and the inability to keep fluids down. It was a long night as he just kept bringing up all shades of green and brown bile. The brown fluids were an indication of blood, and blood is never good in the stomach. This morning, a PICC line was placed for IV access, and his GI doctor performed various tests. As it turns out, Sammy has esophageal erosion and that is the source of the bleeding. In addition, he has a hernia in his stomach. For now, a G-J tube has been placed in the stoma where his g-tube had been. As he shows signs that he is ready, he will begin to receive nutrition through the J port which will bypass the stomach and deliver food to his jejunum. We will know more later today or tomorrow about what steps will be taken next.

12/28/07 – It was a rough night. Sammy can’t receive medications into his GJ tube yet so he is getting them in IV form. Two of his seizure medications aren’t available in IV form, so he is getting an IV equivalent. Because he missed several doses of his seizure meds until his PICC line could be placed, his seizure activity is difficult to control right now. He is scheduled for another GI test this morning to ensure that there isn’t an obstruction in his bowels.

UPDATE: The GI test was a small bowel follow-through study. Basically, they inserted barium into this stomach and watched it move through his digestive system. It showed that the barium moved from his stomach into his esophagus, and then it proceeded to sit in the esophagus for a while which explains the esophageal erosion. Next, the barium was inserted into the J portion of his new G-J tube. The barium moved through without showing an obstruction; however, there is one area of his intestine that appears narrow.

While he was in Radiology for the testing, we noticed that his breathing was becoming more labored. After returning to his room, he began requiring more oxygen, his breaths were rapid and shallow, and his heart rate was very high. He was beginning to crash, and we began to suspect that he might need ventilator support. There was talk of moving him to the ICU; however, the ICU was full, and Sammy stabilized a little bit. A pulmonologist came by and his suggestions helped to make Sammy more stable. As of now, Sammy is sleeping; it’s not a restful sleep, but it is sleep. He is getting breathing treatments every 3 hours, getting steroids and antibiotics, but doesn’t need a ventilator. If we try to reposition him or change his diaper, he begins dropping his oxygen saturations and increases his respirations, so we are trying to leave him alone as much as possible.

Sammy is a very sick little boy right now. Earlier today, GI was his main issue; however, that has now taken a backseat to Pulmonary issues. He still has a long way to go, and we’re praying that today was the worst of what we will see during this hospital stay.

12/29/07 – Sammy slept a lot overnight, and I can safely say now that it’s a “restful” sleep. His heartrate is under 100 beats per minute, and it has been days since we have seen that. Today, he will get some blood because his hemoglobin is low, some protein to help with edema, and Pedialyte will be introduced slowly through his J tube to feed his intestines. The G-J tube is great because it still allows him to get nutrition into his bowels without stressing the pancreas by feeding him into his stomach whereby more pancreatic enzymes are required. It will be a busy day!

UPDATE: Sammy spent a majority of the day sleeping, and he needed it. He is awake this evening, and he is getting back to his old self again.

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