31 Dec

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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