31 Dec

1/10/03 – I had a high-resolution ultrasound at St. Vincents Hospital after a routine ultrasound indicated that there might be a problem with the baby. The high-resolution ultrasound confirmed that the baby had a birth defect known as Holoprosencephaly (HPE). We were told that HPE is typically fatal resulting in miscarriage or stillbirth, and we should expect a certain degree of facial deformity and severe mental retardation.

4/7/03 – Began bedrest due to symptoms of pre-eclampsia.

4/10/03 – Samuel Aaron Harley was born at 12:27 p.m. at St. Vincents Hospital in Indianapolis. His birth weight was 6 lbs., 10 oz., and he was 19 inches long. Samuel arrived in the world with a strong cry and only needed a small amount of oxygen, surprising everyone.

4/18/03 – Samuel developed an infection in his intestines (necrotizing enterocolitis) which caused a perforation in his large intestine requiring emergency surgery. One foot of his small intestine had to be removed as did all but 2 inches of his large intestine. It was a curve ball that we weren’t expecting, but his surgeon said that she could tell that Samuel is a fighter due to the degree of the infection and the lack of physical symptoms that he had been showing. Samuel currently has a ostomy bag because his intestines have been clamped off while he heals.

4/19/03 – Samuel had another surgery today. The swelling from his intestines applied pressure to his urethra causing Samuel to pass blood in his urine. As a result, it was discovered that Samuel’s urethra is too narrow and curvy (a mid-line defect). This required another emergency surgery just one day following the intestinal surgery. He currently has a vesicostomy (a small section of his bladder has been brought to the surface of the skin so he can release urine as needed), and his urologist expects to go back in to reconstruct everything in 6 months or so.

7/1/03 – Steve and I have been faced with making a tough decision about Samuel’s airway. Samuel has a tendancy to roll his tongue to the roof of his mouth blocking off his airway. Because he has a feeding tube, this tube keeps his tongue in place and prevents him from obstructing his airway; however, this is not a safe solution once Samuel comes home. Samuel has had three incidents where he has turned blue due to lack of oxygen, and he has also pulled the tube out once on his own. After a lot of prayer and discussions with this doctors, we have decided that a tracheostomy will be the best solution for Samuel’s airway obstruction.

7/3/03 – Samuel had his tracheostomy surgery this morning at 7:00 a.m., and everything went well. He’s fairly sedated and resting comfortably. Following surgery, he was breathing room air and did not require a ventilator to help him breathe which was quite surprising.

When we arrived the morning of his surgery, we learned that overnight Samuel had obstructed his airway, and according to his monitors, his oxygen level (which ideally should be at 100 percent) was as low as 3 percent. His nurse said that they had to “bag” him to force oxygen into his lungs, and she was afraid that they were going to lose him. If Samuel had been at home with us, we would have lost him. After surgery, we later learned that Samuel repeated this episode in the operating room while they were prepping him for surgery. We also learned that when his surgeon placed the trach tube into his throat, Samuel took in a big breath and then let out a huge sigh, as if to say, “Thanks, I needed that!” In a matter of hours, the Lord confirmed to me three times that we made the right decision.

7/7/03 – Samuel has a new friend; it’s a teddy bear that plays music and also simulates the sound an infant hears in the womb. It really seemed to calm him down and attact his attention today. The bear is almost as big as Samuel, so we wonder if Samuel thinks he has a little friend in bed with him. Also, the Elders from our church came to visit and pray over Samuel.

7/8/03 – Samuel is doing well with the trach. The neonatologists and nurses fully expected that Samuel would be on a ventilator for the first 24 hours following surgery, but his surgeon felt that he was breathing well enough on his own that the vent wasn’t necessary. (Once again, Samuel exceeds our expectations.) In the first few weeks after a tracheotomy has been performed, there are a lot of secretions that need to be suctioned out, so Samuel has been keeping his nurses very busy. His seizure activity was much improved in the days leading up to his surgery, but he began having more seizures following the surgery. I’m hoping that it’s the stress of surgery which has triggered a few more seizures but that they will settle down as Samuel begins to heal and recover.

Samuel will be in the NICU for at least another week and a half for recovery from the tracheotomy. At that point, if his seizures are under control and he’s absorbing adequate nutrients from his feedings, he will most likely be transferred to St. V’s Pediatric Rehabilitation Center where Steve and I will be trained on his care, and we will begin the transition to home.

7/10/03 – Samuel is 3 months old today! He had his first trach change last night, and it went very well. We haven’t been able to hold him since his surgery, but his doctor said that he can now be held, tickled, and even turned upside down! We need to be careful and cautious with the trach, but we also need to treat him like we would any other healthy baby.

7/14/03 – Samuel is getting bigger every day; he’s up to 10 lbs., 7 oz. now. He had a hearing test over weekend, and he passed with flying colors. He continues to do well with the trach. This week, Steve and I will begin learning how to suction the secretions from his trach. We know when he needs to be suctioned because he will make a raspy sound similar to a motorcycle revving its engine. I guess you could say that Samuel truly is a “Harley” now! “Vroom, vroom!!”

Over the weekend, Samuel decided to pull out his feeding tube. Apparently, his stuffed bulldog (Butler) looked a little hungry; either that or he just wanted to hear his nurse Cathy say, “SAMUEL!!!” When Samuel begins gaining weight more consistently and absorbing more nutrients from his feedings, his surgeon will reconnect his intestines; thus, eliminating the ostomy bag. At that time, she will also place a G-tube (gastronomy tube) through his abdominal wall and into his stomach which will eliminate the oral feeding tube that he has now.

7/17/03 – Like I said, he’s getting bigger every day; he’s now up to 10 lbs., 10 oz! We have a conference scheduled with Samuel’s doctors for Monday evening to discuss Samuel’s next step. If he remains stable, it may be time for Samuel to leave the NICU and move to the pediatric rehabilitation center.

7/21/03 – Tomorrow, Samuel will be leaving the NICU and will be moving to the rehabilitation center. It will be a big day of firsts: his first breath of air outside of the hospital; his first time to see the sunshine or to smell the rain; his first ride in a car (actually a big ambulance). It will be hard to say goodbye to everyone who has given him such wonderful care and lots of love over these past few months in the NICU (Cathy, Emily, Kristi, Nataline, Lisa, Kristin, Karen, Susan, Dian, Kathy, Carol, Dr. Whitman, Dr. Hicks, Dr. Jansen . . . ), but Samuel is ready for the next step, and that step gets him a little closer to coming home.

7/23/03 – Sam made the big move to St. Vincent’s Pediatric Rehabilitation Center, and he’s doing well. Many of the staff members came to greet him upon his arrival, and he may have a special visitor today–Breta, the therapy dog! Today, we will continue to get him settled in, and he will have opportunities for many new experiences. Sam has a window in his room, so we’re looking forward to sitting by the window and showing Sam the flowers, trees, birds, and chipmunks that live just on the other side of that window. Upon completing certain aspects of our training, we will be able to take him outside for walks and new adventures!

7/24/03 – Sam’s second day at the rehab center didn’t go so well. He turned blue on several occasions, and we haven’t figured out whether he’s holding his breath or whether he’s just forgetting to take a breath. It’s definitely getting everyone else’s heart racing! And, he’s having quite a bit of seizure activity, so he needs lots of prayers right now. There are some days when you just have to laugh or you’ll cry, so here’s a riddle:

Q: What does Samuel wear to bed at night?
A: Sammy’s jammies

7/25/03 – It looks like Sam has an infection brewing. A blood culture has come back positive for an infection, so his doctor has started him on antibiotics. The culture will need to grow for a few more days before we will know exactly what type of infection it is, but that does explain why Samuel has been having so many seizures. He has always had increased seizure activity a few days before he shows symptoms of an infection.

7/27/03 – It has been a rough weekend with Sam having many seizures. He’s starting on a new medication — Keppra, so we’re hoping that it knocks out the seizures soon.

7/28/03 – Samuel went on a field trip today. After finding blood in his ostomy bag, continuing to have so much seizure activity, and a heart rate over 200 beats per minute, he was transferred to the Pediatric Intensive Care Unit (PICU) at the St. Vincent Children’s Hospital. An abdominal x-ray did not reveal any problems with his GI tract, and his chest x-ray was clear. At this point, it seems that Samuel’s electrolytes were a little out of wack, so adjustments will be made to his medications which should help to minimize the seizure activity. Sam is getting a small amount of assistance with a respirator just to help him breathe easier. The nice thing about the respirator is that it is forcing some of Sam’s air up past his trach and through his vocal chords, so we can hear him coo and cry again. Of course, once he’s off the respirator, he will be silent again until he can figure out how to push that air up there on his own. In the meantime, we’re hoping that Sam can rest and get himself healthy. He will probably be in the PICU for a few days and then will be transferred back to the rehab center.

7/29/03 – Today was a pretty good day. Sam still had seizures, but definitely not as many as he had been having over the course of the past week. One type of seizure that he has is called “Infantile Spasms”, and these spasms can severely affect his development. We’re really hopeful that the Keppra will kick in and wipe out the spasms. On a positive note, Samuel no longer has a feeding tube in his mouth. Because Samuel has narrow nasal passages, we’ve debated on whether to use a feeding tube that would go into his nose, but we finally agreed, and they didn’t have any problems putting it in. Samuel now has complete freedom with his mouth, and it was obvious that he was happy because he spent most of the day sucking on his pacifier.

Samuel is definitely showing signs of improvement in his new environment. It’s very quiet there, and Samuel has shown that he needs a minimal amount of stimulation in order to help reduce his seizure activity. He still looks a little pale, but his eyes are definitely brighter today than they’ve been in a while.

8/1/03 – Keep praying for us because Sam may be heading home next week. Obviously, things can change (and usually do), but it’s looking hopeful. We start our official training today (i.e., trach care, feeding tube placement, administering and managing his medications, use and maintenance of his medical equipment, etc.). Things are coming together, and we can see the Lord’s hand guiding us every step of the way.

8/2/03 – The big day is approaching! Samuel will turn 4 months old on August 10, and it looks like he will celebrate that milestone at home with us! Today and tomorrow, we will be responsible for providing all of Samuel’s care from 9:00 a.m. to 6:00 p.m. On Monday, Samuel’s medical equipment (monitors, feeding pump, etc.) should arrive, and we will be trained on how to use and maintain them. If all goes well, we will move Samuel to a “Parent Overnight” room on Tuesday, and we will provide his total care for 24 hours before Samuel goes home. Sounds easy, right?

Over the course of the past year, we have seen God working in so many ways. Through all circumstances, He has provided for our every need. He has placed so many people in our lives: excellent doctors, loving nurses, supportive friends, prayer warriors . . . Through Samuel’s life, He has given us the opportunity to share our faith with others. We have seen Him open doors and move mountains.

8/5/03 – Tonight is our “sleep over” with Samuel. Will we actually sleep? Probably not! If all goes well, he could be sleeping in his bedroom for the first time on Wednesday night.

8/6/03 – Samuel makes his debut tomorrow! Our overnight stay with Samuel went well. He now has all of his equipment, and we have received all of our training. We received really great news today. Insurance has agreed to provide 16 hours per day of in-home nursing care for 30 days. At the end of the 30 days, they will evaluate and see how things stand at that point. That’s definitely answered prayer!

8/8/03 – We survived the first night at home. For all those of you who have asked if Samuel sleeps through the night . . . he doesn’t! Because Samuel has the trach, and he doesn’t make any sounds when he cries, we tied a bell to his ankle so we would be able to hear him if he was stirring in the middle of the night. So far, so good.

8/10/03 – All is quiet on the home front. Samuel is 4 months old today.

8/13/03 – Samuel is up to 12 pounds, 13 ounces now. He is doing well at home and has been getting to know all of his new nurses who are falling in love with him. We have determined that Samuel has his days and nights mixed up, so one of our first priorities is to get his internal clock in synch with everyone else’s.

8/15/03 – Each day keeps getting better and better. Samuel has two grandmas and one grandpa who are staying with us right now, so he’s becoming quite spoiled with so much attention all day!

8/20/03 – Samuel slept through the night!

8/22/03 – Samuel is doing great, and he appears to be settling into his new environment. Samuel has in-home therapies provided through Indiana’s First Steps program, and he had physical, occupational and speech therapies this week. Speech, you ask? Because Sam doesn’t eat orally, his speech therapist will be working with him on his pacifier and eventually learning to take a bottle. Samuel may never get all of his nutrition orally, but we’re hoping that he can have the experience and pleasure of tasting food as he continues to grow. In time, we’re hoping that the speech therapist may be able to teach him a few words in sign language as a way to communicate his wants and needs.

8/25/03 – Leaving the house with Samuel is quite an adventure. (Quite honestly, just moving him from his bedroom to the family room can be an adventure too.) When we leave the house, he requires a feeding pump, an oxygen tank, an apnea monitor, a portable suction machine for his trach, an emergency bag with medical supplies, and a normal diaper bag. By the time we load all of his equipment in the car, there’s hardly enough room for Samuel! So far, he has only left the house for doctor appointments, but we hope he can make his debut at church in a few weeks.

P.S. Sam wants to give a quick shout out to Cathy Firestone — Cathy, when are you going to come and visit me?! Love, Sam

8/26/03 – Shhhh . . . Don’t tell my mommy and daddy, but I snuck out of my crib, so I could talk to you myself. I’m up to 1,000 hits on my webpage; a lot of people must really like me. Did you know that I will have a tooth soon? It hurts a little, but I’m trying to be brave. I like my new home–all except that silly dog; she barks too loud and wakes me up. Before I forget, please say prayers for my friend Clayton; he’s still in the hospital, and he wants to go home really soon. And prayers for Gabriel’s family too because they miss him as much as I do. Love, Sam

8/29/03 – Sam spiked a high temperature late in the evening, so we visited the emergency room. As it turns out, Sam has a urinary tract infection. This is the third one in three months, so he has been hospitalized for a few days at the St. Vincent Children’s Hospital.

8/31/03 – Sam is home from the hospital. Right now, he’s feeling yucky from his antibiotic and just wants to be held and rocked.

9/5/03 – Sam is recovering from his infection and is getting adjusted to life at home. Sam is now up to 13 lbs., 12 oz. Looks like being at home is agreeing with him! Some of Sam’s favorite things are:

Music (he listens to CDs all day long)
The color red
Having his head rubbed very gently
Riding in the car (as long as we’re on the interstate and traffic is moving)
Swinging in his swing

What doesn’t Sam like? Well, green eggs and ham, of course!

9/7/03 – Samuel went to church for the first time today. We prayed that he would be good, and God answers prayer—he slept through the entire thing. (Grandpa slept through some of it too and tried to blame the snoring on Sam!) Our pastor, Howard Brammer, gave Sam a special introduction, and Sam was welcomed by the entire church. For many of our friends, this was the first opportunity they have had to get a glimpse of Sam. We hope to be there again next Sunday too, so if you’re looking for a church, this would be a nice opportunity to try Trader’s Point Christian Church. Sam would love to see you there!

9/10/03 – Sam turned 5 months old today.

9/16/03 – Sam is one cool dude! One of the issues that Sam must deal with is temperature irregularities due to his hypothalamus being fused. (Didn’t know that I knew such big words, did ya?) Two weeks ago, he was warm, and we always had him dressed in lightweight, summer clothing. This week, he’s a little ice cube, and we have him bundled up in long sleeves, hats, and fleece blankets. I guess he just likes to keep things interesting.

9/22/03 – Sam is still working on cutting those teeth! Maybe he will have some pearly whites very soon. Sam is on the move . . . into a new bedroom, this is. With all of his medical equipment and supplies, it just made sense to give Sam the master bedroom at our house. With lots of help of Grandma and Grandpa, we managed to successfully complete the project in just one weekend.

9/28/03 – Sam had a quiet weekend. Between sore gums and a new medication, Sam has been pretty drowsy.

9/30/03 – Today, Sam is helping his grandma celebrate her birthday. Sammy’s Grammy will be getting lots of Sammy-Yammy time today!

10/1/03 – Sam is a happy boy today. He’s smiling, and his eyes are sparkling! On the 10th, he will turn six months old! I can’t believe that time has gone by so quickly.

10/2/03 – Sam had an appointment with his urologist today, and he gave us some good news. Remember that Sam’s urethra is curvy and narrow, and he had surgery when he was nine days old to bring a small portion of his bladder to the surface of his skin (vesicostomy)? After reviewing Sam’s most recent ultrasound and x-rays, it appears that his urethra has grown in length and width. He will still need to have a surgery to reverse the vesicostomy and to circumsize him; however, he won’t need to have his urethra reconstructed. Way to go, Sam!

10/7/03 – Tomorrow is Sam’s appointment with his gastroenterologist. We have a long list of questions to ask her, but we’re really curious to hear her thoughts on whether it’s time to reconnect Sam’s intestines. Changing Sam’s ostomy bag is quite an adventure some days. You have probably never seen one, but it’s a plastic bag that adheres to Sam’s abdomen with adhesive. We empty the bag several times a day through a spout at the bottom of the bag, and we usually replace the bag twice a week. Sounds pretty easy, right? Today was one of those mornings where we discovered that the adhesive came loose and poo was leaking out! (Just because Sam doesn’t have a dirty diaper, doesn’t mean that we don’t experience those famous “blow outs”.) Anyway, Steve and Sam’s nurse jumped in and performed an unplanned bag change, and all went well, except . . . Remember when I told you that the bag has a spout? The spout is always open when we take it out of the package, and closing the spout is the final step when changing the bag. In all of the attention to changing the bag, they forgot to close the spout! I guess we will be doing extra laundry today!

10/10/03 – Samuel is six months old today! He appropriately wore his Pacer outfit with his number (“1/2”) on the back. His appointment with the gastroenterologist went well. She felt that he may be ready for reconnection as early as next month; however, it is up to us as to the timing. It’s something that we will be praying about.

10/16/03 – Samuel had an appointment with his pediatrician today. He’s now 25 1/2 inches long! Our baby is becoming quite a big guy.

10/21/03 – Sam had a quiet weekend. He received his flu shot last week, so he felt a little yucky for a few days.

10/24/03 – Sam is such a happy baby. He’s drooling a lot and still working on those teeth, but he’s not been fussy at all. He rarely ever cries–even when he gets a shot. We’re battling more seizures this week as a few of Sam’s anti-seizure medications are being adjusted.

10/27/03 – Although we won’t know until his test results are in, it looks like Sam may have another UTI. He was warmer than usual on Saturday and started running a fever on Sunday night. He’s had increased seizure activity, and by this morning, he was pulling his knees up whenever we touched his diaper. All his typical signs of past UTIs.

10/29/03 – Sam definitely has a urinary tract infection. He’s on antibiotics now, so hopefully, he will start feeling better soon.

One of the biggest concerns we have when Sam gets sick is dehydration. Sam suffers from Diabetes Insipidus (DI) which is a rare disorder in which the kidneys produce an abnormally large volume of dilute urine. Because it’s so rare, many people confuse DI (water diabetes) with Diabetes Mellitus (sugar diabetes). Here’s a little peek in our daily routine: We keep a careful record each day of Sam’s fluid intake and also his fluid output. We weigh all of Sam’s diapers to make sure that his daily fluid output doesn’t exceed his daily fluid intake. Not only is it important for hydration purposes, but when Sam’s intake and output are out of sync, it causes him to have more seizures due to the fluctuating levels of sodium in his blood. You didn’t know you would learn something new today, did you?

10/31/03 – Trick or Treat?! Sam had a nice Halloween. He started the day by visiting his grandpa at the hospital. Grandpa hasn’t been feeling so good, but after a visit from Sam, he felt so much better that his doctor said that he could go home as long as he took his medicine and had plenty of rest. Looks like Grandpa and Sam will spend the weekend on the sofa taking naps and watching football games. Sam is feeling better from his UTI, but he’s still really tired.

11/3/03 – Sam is trying a new antibiotic for his UTI because the other one doesn’t seem to be doing the trick. Overall, he had a quiet weekend. On Saturday night, Sam went to his first party. It was a little overwhelming for him (and for us) at first, but once he settled down, he was great!

11/4/03 – What a day it has been! Remember when we said that we must carefully watch for dehydration? This morning, Sam went to a nearby hospital (which shall remain nameless–but it’s not the one he was born at) for his weekly blood draw. We received a phone call from his endocrinologist that his sodium levels were very high, and she urged us to take him to the ER. His levels were high enough that she wanted to admit him into the hospital until he could be rehydrated and his levels could be stablized with normal range. So, we loaded Sam up and took him to the ER.

Because Sam has had so many IVs in his life, putting an IV in is a major undertaking, and usually requires more than one stick to find a good vein. Today, they finally gave up after at least 10-12 needle sticks! Instead, they were able to get enough blood to run more tests. Like I’ve mentioned before, Sam is very brave and hardly ever cries, but he was crying today. While we were waiting for a bed to become available in the ICU, the results of his blood tests came back. When comparing the newest results with this morning’s results, the conclusion was reached that the morning results were in error! If anything, Sam’s sodium levels were low; he has too much fluid in his body! Sam came home content and is resting now; however, Mommy is still trying to get over allowing Sam to become the ER pin cushion!

11/5/03 – Do you remember Koosh® balls which were popular a few years ago? Sam’s occupational therapist has suggested that we try to give Sam objects that are easy to grasp and have different textures. Koosh® balls can be very good for Sam’s therapy, so we’ve been looking everywhere for them in stores with no success. We have ordered two online (large and medium size), but we would like to have some that are different colors and smaller sizes too. If you happen to see them anywhere, would you mind picking one up for Sam? Anyone who finds him a Koosh® ball will receive an autographed picture from Sam! (Given that his therapies also include bringing his arms and hands up to his face and mouth, new Koosh® balls are preferred over used ones.)

11/9/03 – Hi everybody! It’s me Sam! Mommy wanted to update my webpage herself, but I said, “Mommy, me do! Me do!” Did you know that I will be seven months old tomorrow? I’m becoming a very big boy. I had a very special visitor today; my Great Great Aunt Ina came by to visit me. We watched the Colts game together, but we were disappointed because they didn’t win.

11/13/03 – It has been a good week for Sam. His therapists are pleased with the progress that they’re seeing so far with his head and neck control, and he seems to really be enjoying his therapies. We haven’t said much about it up to this point, but we have been very blessed with the nurses who care for Sam in our home. Now that Sam has had nursing care for about three months, we’re getting a nice routine established, and we have a core group of nurses who are growing very fond of Sam. Each of them brings unique qualities and experiences for Sam, and we couldn’t be more pleased.

11/21/03 – Sam had a well-baby visit with his pediatrician yesterday. He’s now up to 16 pounds, 12 ounces and is over 26 inches long! That explains why his clothes aren’t fitting very well lately. He’s giving us all of the signs that he’s teething, but we’ve yet to see any pearly whites.

11/24/03 – Today was a great day for Sam! He met Santa for the first time, and he wasn’t scared of the bearded man in the red suit. Of course, he was asleep the entire time; maybe he was trying to show Santa what a good little sleeper he is! Sam also went by the NICU to visit some of his old friends, and that was even better than seeing Santa because the NICU nurses are always full of hugs and kisses for Sam. Getting out and experiencing the world was very good medicine for Sam because when we returned home, he was happy, smiling, and seizure-free. A day out definitely agreed with him!

11/26/03 – As you sit down tomorrow to say your blessings for all that you are thankful, please also pray for a few of Sam’s friends. Please pray for the family of Brooklyn; Brooklyn was called home to be with Jesus on Monday morning. Also pray for Jason and his family; we met Jason’s parents on Monday in the NICU, and they’re hoping that he will be home with them for Thanksgiving. And finally, Sam’s buddy Clayton. Clayton is six months old, and he hasn’t been home yet; please pray that Clayton will be home for Christmas.

12/1/03 – Sam had a great turkey day, and it was so nice spending this first holiday at home with Sam!

12/5/03 – It has been a BUSY week with lots of appointments and therapies this week. On Sunday, December 7, Sam will be going to church and participating in Baby Dedication Day. This is the day that we have awaited with great anticipation, so we’re all looking forward to a special day with Sam.

12/8/03 – We marked a milestone in Sam’s life yesterday when Sam was dedicated at church. This was a day that we had anticipated long before Sam was born, and we were thrilled to participate in such a special day.

Sam has been doing very well recently. He continues to have many seizures each day, but he quickly bounces back from them, and he does go for longer periods of time when he’s seizure-free. Given the amount of medication he takes in an effort to control his seizures, it’s very surprising that Sam is as alert and awake as much as he is. The early evenings are Sam’s best time, and that’s when we have the most fun with him.

12/9/03 – Sam had an appointment with his developmental pediatrician today. His speech therapist will be really excited because Sam has been given the green light to begin using flavors as part of his speech therapy. In addition, he encouraged the introduction of a Passy-Muir valve, which is a valve used to help trach patients pass air through their vocal chords to produce sound. Pray that Sam adjusts to it right away because it will allow him to vocalize his coos, laughter and cries!

Here’s a new medical term we learned today. Have you ever heard of “gingival hyperplasia”? It’s a condition in which there is uncontrolled growth of the gums. There are various reasons for it, but in Sam’s case, it is caused by the use of anti-seizure medications. Sam is teething and has two teeth in there trying to push through, but due to extra tissue in his gums, it’s taking longer than usual for them to appear.

12/17/03 – Sam has kept us hopping for the past 24 hours. He began running a fever last night, and with Sam, a fever means increased seizures; however, increased seizures mean that his temperature rises. Do you see the circular pattern developing? Tylenol has been helping to bring down his temperature, but he’s also lethargic and floppy at times. We took him to see his pediatrician this morning, and he ordered a urine culture just to make sure that Sam doesn’t have another UTI brewing. If the culture results are normal, then most likely Sam has some sort of viral bug. As of 6:00 p.m., he’s sleeping and all is well.

12/18/03 – Sam had a very good night, and he seems to be doing better this morning. The preliminary results are in, and it’s another UTI. Sam has been scheduled for surgery to reconnect his intestines on January 13, so hopefully, that will help eliminate some of the opportunities for future UTIs. It also looks like he has four teeth on the verge of popping through at any time, so there’s always a possibility that teething may be playing a role in Sam’s fevers too. He may have his two front teeth by Christmas!

12/22/03 – Sam is really fighting to get those teeth in. He had a fairly good weekend, but this morning, his temp is back up over 100 degrees with increased seizure activity. We’re trying to reach his pediatrician because we think the UTI is still a big factor for Sam. We’re really hoping that we will spend a healthy Christmas at home and not at the hospital.

12/23/03 – Today was one of our scariest days. Sam again had high temps (105 degrees) , seizures, and irregular breathing this morning. Steve was preparing to load him up to take him to the ER when Sam stopped breathing. He had just picked Sam up into his arms when Sam exhaled. Instinctively, Steve’s CPR training kicked into gear, and Steve and Sam’s nurse were able to resuscitate him. EMTs were called, and Sam was taken to the St. V’s ER.

As we’ve learned over these past few months, infants and children are very resilient, but when they go downhill, they can go downhill quickly. As it turns out, Sam had a mucus plug in his trach blocking off his airway. Also, a chest x-ray revealed that he has a touch of pneumonia or a small area of his lung has collapsed. Given the flu epidemic going around and that fact that we have in-home nursing for 16 hours per day, we (along with the hospital physician) decided to bring him home rather than admit him into the hospital for observation. At home, he will have one-on-one care in a germ-controlled environment. Given Sam’s compromised immune system, we don’t want to take any chances of contracting the flu. He will see his pediatrician bright and early in the morning, so we’re praying for a quiet and restful night for Sam.

12/24/03 – Sam had a very restful night and is doing much better today.

We received a very unexpected monetary gift in the mail today from an anonymous friend. Although there was no return address or signature on the letter, the letter itself was very special to us. Leslie, Sam, and I want to thank the generous person who sent this gift for their words of encouragement, their prayers and their support.

As we celebrate the birth of Jesus Christ this Christmas Eve night, we are reminded of Jesus’ instruction to us about giving in Matthew 6. “Be careful not to do your ‘acts of righteousness’ before men, to be seen by them. If you do, you will have no reward from your Father in heaven. So when you give to the needy, do not announce it with trumpets, as the hypocrites do in the synagogues and on the streets, to be honored by men. I tell you the truth, they have received their reward in full. But when you give to the needy, do not let your left hand know what your right hand is doing, so that your giving may be in secret. Then your Father, who sees what is done in secret, will reward you.” Matthew 6:1-4

12/29/03 – Sam’s first Christmas was very nice. He is still feeling a little under the weather, so he hasn’t had a chance to begin playing with many of his new toys yet. He slept a lot over the weekend, so we know that his body is working hard to fight off the bug that he has. He’s scheduled for surgery on January 13, so we’re hoping that he builds up his strength and resistance over these next few weeks.

12/30/03 – Our family would like to wish a Happy Birthday to Tara who is turning 16 years old today! We know Tara through a message board for parents of children with HPE. Tara has been diagnosed with Alobar HPE, which is the most severe form of HPE. Tara attends high school, and she and her family are an inspiration to other families who have been affected by HPE. Happy Birthday, Tara!

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