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
Sammy Yammy and HoPE 
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