Horstmeyer Happenings

Sammy's Story by his special teacher, Esther

2010-09-21T22:32:00.000-05:00

Funeral Sermon

2010-09-21T21:44:00.002-05:00

Funeral sermon for
Samuel John Horstmeyer
July 26, 2010 —Pastor Heidi Kvanli

At that time the disciples came to Jesus and asked, "Who is the greatest in the kingdom of heaven?" 2He called a child, whom he put among them, 3and said, "Truly I tell you, unless you change and become like children, you will never enter the kingdom of heaven. 4Whoever becomes humble like this child is the greatest in the kingdom of heaven. 5Whoever w elcomes one such child in my name welcomes me.

13Then little children were being brought to him in order that he might lay his hands on them and pray. The disciples spoke sternly to those who brought them; 14but Jesus said, "Let the little children come to me, and do not stop them; for it is to such as these that the kingdom of heaven belongs." 15And he laid his hands on them and went on his way (Matthew 18:1-5; 19:13-15).

31What then are we to say about these things? If God is for us, who is against us? 32He who did not withhold his own Son, but gave him up for all of us, will he not with him also give us everything else? 33Who will bring any charge against God's elect? It is God who justifies. 34Who is to condemn? It is Christ Jesus, who died, yes, who was raised, who is at the right hand of God, who indeed intercedes for us. 35Who will separate us from the love of Christ? Will hardship, or distress, or persecution, or famine, or nakedness, or peril, or sword? 37No, in all these things we are more than conquerors through him who loved us. 38For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, 39nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord (Romans 8:31-35, 37-39).
______________________________________________________________

Jeff and Erin, your family and friends, grace to you and peace from God our Father and our Lord and Savior Jesus Christ.

“What then are we to say about these things?” Today’s Scripture from Romans chapter 8 begins with the question that weighs heavy on our hearts. What then, finally, can we say about sickness, death, and heartache? What can we say to Jeff and Erin and to each other when words are inadequate and our minds are so limited?

Thankfully, words are not required in showing love—something that Sam clearly demonstrated, and your presence here speaks volumes to Jeff and Erin. Your presence, your tears, your hugs, and your prayers have sustained them these past days and will continue to bring them comfort. On their behalf, I thank each and every one of you for being here today.

When words fail, even for a preacher, we can be thankful that the Word of God endures forever, and that it is the source of our life and peace and hope. God’s Word, heard and sung today in everything from Easter hymns to Jesus Loves Me, speaks the truth that we so need to hear: God is with us. Jesus loves us—and by his death and resurrection he has destroyed the power of death and has opened the kingdom of heaven to all believers. This is the sure and certain hope we have in Christ, and when everything else is stripped away, it is enough. Even when our world is shaken and the ground beneath our feet shifts, we can trust that the arms of God are holding us and that his love will never end.

Jesus tells us to be like children, humble and trusting. In a world where we try to prove ourselves, be strong, wealthy and wise and strive to achieve success and greatness, Jesus surprises us by taking a child in his arms and saying, “Do you want to achieve greatness? Then become like this child, become like Sammy. Whoever becomes humble like this child is the greatest in the kingdom of heaven.”

When Jesus wanted to teach us about faith and about life in the kingdom of God, it was a child that became his prime example. So it’s really not too surprising that so many people who knew and loved Sam referred to him as a teacher—as an example. He taught us so many things. We have learned and grown in faith and life because of Sam. “Do you want to achieve greatness?” Jesus asks, “Then be like this child.”

There are two words in particular that come to mind for me when I think about Sam, and those two words are joy and love. Sam taught us much about both. Sam’s joy was exuberant, contagious, unrestrained, and complete. Whether he was clapping his hands, listening to music, splashing in the bathtub, hearing voices of those he loved, Sam expressed great joy in life. All you have to do is look at the assortment of pictures that Erin assembled. With grin after grin, Sam exhibited joy and he brought joy to his parents and family and countless friends.

And then there’s love. Sam taught us a lot about love with his hugs for his parents and grandparents, his delight in their presence, and their precious times of snuggling with him as they read him stories or sang lullabies. Like his joy, Sam’s love was complete and pure.

No wonder a child was Jesus’ example for greatness in the kingdom of God. “Whoever becomes like this child is the greatest in the kingdom of heaven,” Jesus said. And then he went on to say, “Whoever welcomes one such child in my name welcomes me.”

God certainly knew what he was doing when he placed baby Sammy in the care of the Horstmeyer and Bennett families—the whole kit and kaboodle of them!—Jeff and Erin, John and Donna, Larry and Joyce, Roberta, Pat and Lori, Maggie and Molly. Where some might have recoiled at the thought of caring for a child with so many health challenges, you welcomed Sammy with open arms and unfailing love and determination.

You, Sam’s family, have been an example to us as well, because in you we see the unconditional and fervent love that God has for all of his children.

Sam was held a lot the last days and hours of his life. Everyone in the family took their turn. This past Thursday Jeff held Sam for most of the day, but then in the early evening, Erin was holding him as he took his final breath. For Sam, who was content and peaceful, it must have been a seamless journey—from the arms of his parents into the arms of his heavenly Father.

When Sam first opened his eyes in glory, I think I know what happened. He opened his eyes and looked with wonder and joy into the face of Jesus. Then Sam grinned, his eyes sparkling with delight as Jesus smiled back at him. And Sam said, “I know you.”

And that’s because of you, Erin and Jeff. You were the hands and the face and the heart of Jesus in Sam’s life. From the moment of his birth he was welcomed into loving arms and graced with a family that lived in the arms of a loving God.

So, what then are we to say about these things? If God is for us, who is against us? He who did not withhold his own Son, but gave him up for all of us, will he not with him also give us everything else?

Who will separate us from the love of Christ? Will hardship, or distress, or persecution, or famine, or nakedness, or peril, or sword?

No, in all these things we are more than conquerors through him who loved us. For we are convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Sam is securely held in God’s arms.
And so are you, Jeff and Erin.
And so are we.

Amen.

CaringBridge

2010-06-11T21:59:00.002-05:00

We decided to create a CaringBridge page for Sammy to share updates about his health struggles. I will probably be updating that more frequently than our blog for awhile. Please check out his page at: www.caringbridge.org/visit/samuelhorstmeyer

70+ Days in the hospital

2010-03-06T16:38:00.004-06:00

Well, I finally got to a location that will allow me to access my blog! Our internet at CCHS is a bit limited! No Facebook or Blogs? How have we survived this past month?! The past few weeks have been pretty much the same with Sammy. He has struggled with his tummy and feeding since the surgery. On Monday we will be sedating him to put in a G/J tube. This will allow him to be fed directly into his intestines and will by-pass the stomach allowing us to figure out if the stomach is his main source of discomfort or if it is eye pain. Sam will not have to have surgery for this procedure, but it will have to be done in the Interventional Radiology department at Avera. He will have a different type of tube placed in the same location as his current tube. This will allow access to both the stomach and the intestines through one location on his tummy. Also, he will have a couple of CT scans to look at his sinuses and his eye. After the scans, he will be examined again by his eye doctor and we will find out if the pressure in the eye has gone back up. The downside of feeding Sammy directly into his intestines, is that he will have to be fed a minimum of about 18 hours per day. This is exactly what we did not want to have happen! We did not want him to have to be hooked up to a tube all day and night. However, if this is what he needs to feel better right now and allow his tummy a rest, we feel it will be the best choice for him. Hopefully, this is temporary and he will be able to eat orally and be tube fed into his stomach in the near future. He is wanting to eat by mouth and is eating pureed foods about once a day. We continue to keep him on pain medication so that he is comfortable and to give us all a much needed rest. We will be at Children's Care through March 18th and hopefully be ready to go home by the middle of the month. Thank you for your continued prayers and support for all of us!

New Pics

2010-03-06T15:18:00.002-06:00

My eye hurts!
I cleaned my plate!
I made it to school for an hour and got a good boy award! (Mommy says I deserve one everyday!)

Avera, CCHS, Avera, CCHS, Avera......

2010-02-16T00:59:00.005-06:00

Sam continues to struggle with feeding issues and stomach discomfort, so he was re-admitted to Avera on Monday. He will have another colonoscopy to determine if there are GI problems contributing to his eating issues. He is still not tolerating full feedings through his g-tube and has tried seven different formulas so far. Our results are the same on all of them--pain, gas and intense stomach and abdominal pain!. For some reason he is only content when he has pedialyte in his tummy. We are trying to figure out why he does not tolerate formula and why he has had blood in his stools for the past week. Food through his g-tube or by mouth seems to aggravate his stomach. Please keep praying for us and for the doctors on our team who are working to help Sammy feel better! We are still hopeful that we may get to go home sometime this year!!!

My boys in the above picture after Sam finally fell asleep at 2am this morning!

Eye Exam Update

2010-02-11T19:15:00.005-06:00

Finally we have GOOD news!!! After sedating Sam for another eye exam today, we found out that the pressure has decreased 10 points in his left eye! The drops are working and his pain and pressure have decreased too. He will remain on three different eye drops until we have the eye re-checked in 4-6 weeks. The drops are not exactly easy to put in given Sam's level of movement, but we will keep doing our best to get them in three times a day since they are working so well. What's another few drugs when his collection is already this large!

Moving to CCHS and other news.

2010-01-30T01:16:00.003-06:00

We moved to Children's Care Hospital and School on Friday, January 29th. We are happy to be moving there and know that we will receive the help we need to continue to care for Sammy's g-tube issues and feeding complications. We will be back at Avera in a week or so for an eye exam to check out Sammy's eye problems. We are praying that the news will be good an that the eye drops will be the answer to relieving the intense pain and pressure in his left eye. Hopefully, he will begin to tolerate his feedings and begin to eat orally soon too!

Rice Krispies!

2010-01-28T21:13:00.008-06:00

Big news on the eating front for Sammy! He ate a bowl of Rice Krispies yesterday and six bites of pudding! Praise the Lord for baby steps! Sam had a very difficult night last night with his g-tube feedings though! He was awake the majority of the night screaming and crying. We have tried four different formulas with him the past few weeks and can't seem to find the right combination of formula and duration of time for his feedings. It was decided that he would have a gastric emptying study done to check out if his stomach is emptying his food at the right speed. This test consisted of giving him formula with radiation mixed in through his g-tube. Next, x-rays are taken every fifteen minutes for two hours. Tomorrow morning, Sam will have another upper GI test and a small bowel follow through to look at how his food is moving through the GI tract. This test will have lots of x-rays involved too. Once Sam is tolerating his formula at full strength, we will be transferred to Children's Care for a few weeks. We need to have help caring for him during the time that his g-tube is vented. It takes two people to move him and we have to monitor the tube carefully to be sure that it is not pulled out of his tummy.

One picture shows his vented tube and the other is a picture of snowman Sam all wrapped up during his x-rays!

Avera Children's Champion of the Month

2010-01-27T22:11:00.001-06:00

Avera Children's Champion - Avera Health
Check out the champion of the month at Avera Mckennan!

Here we go again...

2010-01-26T23:46:00.000-06:00

Sam was re-admitted to the hospital on Monday night. We had a very difficult five days at home since our discharge last week. Sam has not been tolerating his feedings through the g-tube and not taking much by mouth either. The g-tube had migrated into his tummy too far. We are hoping that by having the tube back in place, that Sam will begin to tolerate his feedings better. He continues to need pain medication for his eye discomfort and is not sleeping well at night. Hopefully, we will be here for a short stay and that Sam will be feeling better once he has food in his belly!

Going Home!

2010-01-22T10:00:00.000-06:00

We made it home from the hospital on January 20th with mixed feelings about going home. Of course we were happy to go home, however, Sam was not healthy yet and was not tolerating his feedings very well. Also, we went home to 24/7 nursing care in our home. We are used to having lots of people in and out of our house, but not strangers. We have a pool of 7 different nurses working with Sam. Lots of training is involved and the constant feeling of having no privacy in your own home is definitely something that we have to get used to. Sam was sedated for an eye exam last Wednesday due to a finding on his CT scan last Monday. Unfortunately, the news was not great. Sam has detached retinas in both eyes and glaucoma in his left eye. The pressure in his left eye is 6x that of his right eye. Also, he has a retinal hemorrhage behind his left eye. We are using drops to try and lower the pressure and will have to sedate him again on Feb. 16th for another eye exam. We are praying that the drops are the answer to helping relieve his discomfort.

Day 27 at Avera

2010-01-16T14:29:00.006-06:00

Sam started to make gains last weekend, and we were so excited that he was beginning to feel better and tolerate his feedings. However, on Thursday the sinus problems started in again with a vengeance! He is now back on pain medications consistently and very uncomfortable. Sam has a very noticeable pattern with the sinus problems which allows us to know what the problem is, but not how to fix it! He has had three sinus surgeries to clean the junk out which provides him with short-term relief but not a means to preventing the problem. We are now riding out the weekend in hopes that early next week we can put together a care conference with Sam's ENT, allergist and pediatrician. Due to the fact that the sinus cultures do not grow out bacteria, we are leaning toward allergies or an immune deficiency of some kind as the source of the problem. We will try this route before we look at transferring Sam to Omaha or Minneapolis to a pediatric ENT specialist for a second opinion. We are thankful for that fact that Sam has made it for almost a month without an ear infection and that he seems to be recovering well from the g-tube surgery. Oral feeding is definitely of no interest to Sammy right now! This is so tough on us, because we have worked so hard on feeding and eating was something that Sam enjoyed doing. We do know that he is receiving the nutrition that he needs through the tube feedings, but we continue to hope for the day that he regains an interest in eating by mouth.

2 good days!

2010-01-11T14:22:00.003-06:00

We are thankful for last Sunday and Monday! Sam had two great days without pain medication!

Time for the grandparents to have a break! Grandpa and Grandma Bennett are off to Las Vegas this week and Grandma Joyce is heading home! Jeff has spent so much time off of work with us, but he needs to get back to his job! I ask for prayers as Sam and I go it alone and eagerly await Jeff to come back to the hospital in the evening!

Surgery Update

2010-01-06T22:15:00.007-06:00

Sam is hanging in there and we are so proud of how tough he is! Yesterday was a difficult day filled with lots of prayers and pacing! Sam had fundoplication surgery which is when the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily. Sam also had a g-tube put in to assist with feedings and to be used for medications. We are very hopeful that this surgery will help Sammy to feel better and take away the discomfort that he has been experiencing. We are so happy to have the surgery done. Now we are on to the next task which is continuing to control Sam's pain and discomfort and keeping his tube vented and not tugged out of his tummy.

More Sedation

2010-01-03T15:58:00.009-06:00

Sam had about a week of relief after the ENT doctor cleaned everything out of his sinuses last Wednesday. Unfortunately, we started to notice sinus problems again on Friday. Today we sedated Sammy again for yet another sinus CT, NG tube placement for nutrition and a PICC line. The PICC line procedure which should have been relatively easy for the doctor, proved to be a big challenge! Sam ended up being sedated for about three hours this morning and had two different PICC line placements before getting the third one to flush correctly. Sam is not fond of the NG tube or the amount of tape on his face holding it in place! We continue to read story after story to do our best at keeping Sammy content, but the more "crap" attached to him the tougher it is! His constant cheering squad of family and friends are a huge blessing for Jeff and myself. Our next procedure will be the stomach surgery on Tuesday at noon. Hopefully, we will also be able to get his sinuses cleaned out for the third time in the last three months too!

Avera Happy New Year to you!

2009-12-31T21:18:00.017-06:00

Happy New Year to you. We are spending yet another holiday in the hospital. Sam had a colonoscopy, endoscopy, a PH probe and a pill cam placed on Tuesday morning. The Prep work for the colonoscopy was a lot of work, but it went better than expected. The chair did get a work out though!

Jeff and I went back with Sam to prep him for his procedures and Jeff actually went in with Sammy while they put him to sleep. We were able to get the information we needed from these tests and that was a huge answer to our prayers! We did find out that Sam has significant reflux which means that we will need to proceed with surgery and a g-tube placement to help him feel better. We certainly did not expect this outcome when we admitted Sam 12 days ago. However, with the results of the tests and Sam's continued discomfort, we feel comfortable with what needs to be done. Surviving after the surgery is another story! Sam will have to be vented for six weeks and that means he will have an open tube attached to his tummy. As you know, our little guy likes to move around so this will provide quite a challenge for us. We also hope that this is the answer to the chronic sinus problems that he is having. His reflux can go all the way up to his sinuses and is also the cause of his eating problems the last few weeks. We expect that Sam will have surgery on Tuesday and we will remain in the hospital until then. He will most likely have another NG tube placed so that he can get the nutrition he needs to be strong enough for surgery and recovery. After the surgery, we will be in the hospital for another 5-7 days. Keep the prayers coming please! We are so thankful for the wonderful support system that we have with our family and friends! The prayers and support are keeping us strong through all of the difficult days. God Bless you all!

Still here...

2009-12-28T11:31:00.005-06:00

we are on day number 8 with Sammy in the hospital. When one thing seems to get better, another thing starts to get worse. He has had three IVs put in during the last 8 days and unfortunately, his third one quit working yesterday morning. We gave him a chance to drink on his own, but he only took 15oz all day. So, we are back to having to place another IV. He has lost close to 3 lbs in the last 8 days and will have a NG tube placed in his nose for nourishment and prep for his up coming colonoscopy, endoscopy and PH probe. We are now looking to the GI issues as a source for his continued discomfort and sinus irritation. We will be here for awhile...

Hanging out at the hospital

2009-12-25T22:01:00.001-06:00

Avera Merry Christmas to you!

2009-12-25T18:38:00.011-06:00

Christmas in the toy room at Avera Mckennan

Well...we are still in the hospital! We were hoping to be home for Christmas, but now we are just hoping to go home early next week. Sam's sinus surgery went very well and his Dr. was convinced that he got everything cleaned out! Sam had a pocket of fluid behind his right ear tube again and "rubber cement like" snotty junk sitting in the left side of his sinuses. The pressure in there was most likely causing the redness in his left eye too. Our biggest obstacle now is waiting for him to start eating, drinking and going to the bathroom on his own. He continues to need IV fluids and a catheter. We are thankful for a better day today! The picture above shows Sammy with a smile, his first one for the past week! My parents and sister were able to venture through the 15+ inches of snow today to bring us a bit of Christmas cheer. We definitely do not plan to make a tradition out of celebrating Christmas in the toy room at the hospital! We are in the best place for Sam this Christmas and we are thankful to be together with a wonderful team of doctors caring for him. Merry Christmas to you from the Horstmeyers

Back in the hospital again...

2009-12-22T23:46:00.002-06:00

After Sam finished his second round of IV meds, he seemed to feel better for about four days. We were able to enjoy watching him in his Christmas program at CCHS. He was a perfect little donkey and even "hee hawed" by hitting his switch. We have lots of fun pictures that I will post when we get home.

Sam was admitted to the hospital again on Monday December 21st. He continued to get worse throughout the weekend and we ended up needing pain control for him again. He will be having sinus surgery on Wednesday morning (12/23) which will be a similar surgery to the one he had on October 1st 2009. He is also on yet another antibiotic to try and get rid of the infection in his sinuses. We are praying that this finally clears up the problem that we have been dealing with for the past two months. Sam will also have an upper GI to determine if his reflux is causing the problems with his sinuses. He has severe reflux and we treat it with a lot of Prevacid, but that does not stop all of the issues associated with it. On a good note, his seizures have been much less frequent than earlier this fall. The new medication we added after our trip to St. Paul has been a good choice for Sam.

We would love to say that we will be home for Christmas, but it is looking less like a possiblity right now. We are taking things one day at a time and will see how things progress for our little guy! He is a trooper and so resiliant. I'm so proud of him every day and so thankful for the wonderful team of doctors that we have working with us! Merry Christmas to you and may God bless you with much joy and happiness in 2010.

Home with a PICC line

2009-12-22T15:55:00.006-06:00

This post is a bit late, but we did go home from the hospital on 11/20 with a PICC line in Sam's arm. We continued IV medications at home for 10 days. Two days after we stopped the meds, Sam was sick again! We then started a different IV med three times a day. Jeff and I became very good nurses and can now whiz through changing PICC line dressings and giving IV antibiotics. This is something neither of us ever wanted to know how to do, but we were thankful to be able to have him home during this time. Sam had several tests during this hospitalization. He had a head CT, sinus CT, kidney ultrasound, hip CT, two days with a catheter and several other tests! We do know that he will need to have surgery on his hips sometime this spring. The recovery from the hip surgery will be six weeks in a cast. We are taking things one day at a time right now, and trying to keep him as healthy as possible during the winter months.

Hospital again...

2009-11-18T12:51:00.009-06:00

We arrived home from our trip to St. Paul in time to take Sam in for a double ear infection. After trying three different antibiotics, Sam continued to get worse and experience more and more discomfort. We took him into the ER on Monday (his 8th birthday) and he was admitted. Sam has been sedated three times since we came in for a bunch of tests and procedures to try and determine the source of his discomfort. He had a PICC line put in on Tuesday and is receiving two different IV antibiotics. He is also experiencing a great deal of pain and has been on Morphine continuously. We do know that his hips are dislocated and have been for some time. Treatment for this will be determined after the pediatric ortho doctor examines him. Also, his ears are looking better after two days of IV antibiotics. The grandparents are starting to wonder where they live! Between 9 days in St. Paul and 3+ days in the hospital this week, they have logged numerous hours supporting us during our time in various hospitals. We are so thankful for the wonderful prayers and support from our family and friends!

Helmet Scan

2009-11-05T14:47:00.004-06:00

We had Sam fitted for a helmet in St. Paul because he sometimes hits himself in the head when he is in pain or discomfort.

EEG leads are off and its bath time!

2009-11-05T14:33:00.005-06:00

Sammy was such a star and left his EEG leads on for three days! The doctors were able to get some good information from the EEG and we found out that he is also having seizures during the night. We were all very excited for Sam to have a bath and be free of his attachment to the computer!!!

St. Paul Children's Epilepsy Unit Update

2009-10-30T08:06:00.003-05:00

Hello, I finally got a minute to update the blog! We have been in St. Paul since Monday and plan to be here through the weekend. Sam got hooked up to the EEG on Tuesday afternoon and has been absolutely amazing! We are so proud of him. He will remain hooked up to the EEG as long as possible so the Doctors can continue to monitor his seizures while medication changes are made. He had over 100 seizures during the first 24 hours he was in the hospital. We are definitely glad that we made the trip!

Sam had a tougher day yesterday. He has a bit of "cabin fever" and the EEG leads are getting itchy since they are super glued to his head! Sam often bangs at his head when he is in discomfort, so he will be fitted for a soft sided helmet while we are here. A new medication was started yesterday too, so we will see how he does today. We are less than thrilled with the side effects of this med, but the doctor feels that it is the best choice for Sam.

My parents and Jeff's mom are here with us and we are so blessed to have their help! We appreciate all of your prayers during this challenging time and we also know that they are working because Sam has been such a good boy!

Seizure Update

2009-10-07T22:25:00.007-05:00

I thought I would share the latest info on our next step for Sam. We will be traveling to St. Paul for an inpatient visit on Oct. 27th. Sam is scheduled to check in at St. Paul Children's Hospital at 10am on Tuesday the 27th. I have attached a link that tells a bit about the epilepsy center at Children's. We will plan to stay a minimum of 2 days with the possibility of up to a week. Sam will have a 24hr EEG and see a pediatric neurologist during his stay in the hospital. It will be quite a challenge for us to be away from home, but hopefully we will get some good information to help treat Sam's seizures.
http://www.childrensmn.org/web/services/035705.asp

Sam has ear and sinus surgery at Avera Mckennan

2009-10-04T14:56:00.008-05:00

After a tough summer and fall, we finally got Sam in to have surgery on his ears and sinuses! He struggled with infections all summer and after four different antibiotics and countless trips to see his doctors, we decided it was time! He had surgery to replace his ear tubes, clean out fluid found in the middle ear, cut out adenoid tissue that had regrown, and he also had a sinuplasty http://www.youtube.com/watch?v=x7WlyWTFWrc(balloon procedure to inflate the sinuses.) His seizure activity has also dramatically increased since June. He has averaged up to 60 seizures daily. We are hoping this will decline once he is healthy again. We are planning a trip to Minneapolis in the near future to once again try to find a doctor that can help control his seizures. Also, we did some more genetic testing in September which resulted in no new information. We were discouraged by the results, but will continue to search for a diagnosis for Sam in hopes that we will be able to better treat his complex seizure disorder. As a result of the chronic infections and seizures, we have seen a big decline in his motor skills and ability to bear weight on his legs. I will try to keep the updates coming. Thanks for continuing to keep Sam and our family in your prayers.

Augie Football Fun!

2009-10-03T21:52:00.003-05:00

We have been having fun watching Augie football this fall! Go Vikes!

Sam's new bike!

2009-08-25T14:32:00.000-05:00

First Day of 2nd Grade at CCHS!

2009-08-25T14:27:00.002-05:00

Time for a new buzz!

2009-08-25T14:20:00.004-05:00

Sam's Education Assistant Kathie graciously comes over to cut Sam's hair at our house! As you might imagine, he is a bit challenging when it comes to hair cuts!

Weekend in Watertown

2009-08-25T13:41:00.003-05:00

We traveled to Watertown for the first time in a year! Sam did very well and we had a great time with Grammy and Grandpa Horstmeyer, Auntie Lori, Uncle Patrick and cousins Maggie and Molly!

Astronaut Curt Brown visits CCHS!

2009-08-14T13:50:00.001-05:00

Sertoma Butterfly House Field Trip

2009-07-14T23:01:00.003-05:00

Bowling Fun!

2009-05-28T23:18:00.001-05:00

We had a fun field trip to Empire Bowl and Sam bowled a 133! He had a bit of help aiming the ball, but he managed to push the ball and knock down the pins! He mostly enjoyed hearing everyone cheer for him, I think! He had his own cheering section with Grandpa John, Grandma Donna, Mom and Dad! We had more family members watching Sam than CCHS had staff to go with three kids! We had a great time and hope to go again soon!

More Bowling Pics

2009-05-28T22:59:00.002-05:00

Easter 2009

2009-04-15T09:11:00.001-05:00

April Updates

2009-04-06T21:18:00.002-05:00

Sam is doing great!!! He continues to struggle with ear infections often, but has been much healthier this winter than last year. School is going well and we can't say enough wonderful things about the staff working with him at Children's Care! Sam has been working hard and learning all kinds of new things! Our biggest excitement is his continued success with the potty chair! His other big news is that he is beginning to eat with silverware all by himself! With assistance for loading the fork or spoon, he is learning to bring the utensil to his mouth by himself. The staff at school have worked hard to implement a program to teach Sam to sit quietly and it is working! We have been able to attend church and sit through the entire service with our boy! He still likes to sing with the choir once in awhile, but we love his joyful noises!
The slide show contains pictures of St. Patrick's Day, fun Friday afternoons at school, visits with both Grandmas and rooting for North Carolina with Daddy! Jeff gives Sam a play by play throughout the games and he loves it! Kathie is Sam's special EA at school and we are so thankful for her!
Thank you for continuing to pray for Sam and our family!

New Pictures

2009-04-05T23:57:00.004-05:00

Valentine's Day 2009

2009-02-16T20:07:00.001-06:00

Sam had a Valentine's Day dance at school and Auntie Bertie joined us in the fun!

Children's Care Mallwalk 2009

2009-02-14T22:57:00.002-06:00

Eating with a fork!

2009-02-05T23:05:00.004-06:00

Here is a picture of Sam eating with a fork! It is not the best picture since I used my cell phone, but I will post some better ones soon! There is also a bit of video too! We are so proud of the progress he has made at CCHS! The staff is fabulous!

Ooops!!!

2009-01-04T23:00:00.002-06:00

Sam and Daddy went for a ride in the recliner by accident! Sam thought it was pretty fun, Jeff was not so sure!

Christmas 2008

2009-01-04T22:38:00.005-06:00

Sam has struggled with ear infections for the last month, so we decided to have holiday fun at the Horstmeyer house this year! We celebrated with both families together on the 24th and 25th and attended church in shifts. He enjoyed unwrapping and playing with the paper! Of course, Sam's favorite gifts are love and attention! As you will notice from the pictures, the Horstmeyer side of the family got the short end of the deal because Sam was having a meltdown during gift opening.

CCHS Mall Walk 2009

2009-01-02T23:17:00.005-06:00

Sam was the focus of the Children's Care holiday fundraising mailing this year. If you would like to read his story, check it out at: http://cchs.org/blog/sam/
Please join Team Sam and walk and roll with us to support Children's Care Hospital and School. All of the money raised goes to purchase needed equipment and materials for the children and school at CCHS. Visit our team website at: www.firstgiving.com/erinhorstmeyer

My Silly Boys

2008-12-28T19:46:00.001-06:00

Hugs for Kelsey

2008-12-22T13:15:00.004-06:00

Kelsey is our special home health aid who helps care for Sam! As you can see, he loves her a lot! We are so thankful for her!

2008 Christmas Letter

2008-12-22T13:01:00.004-06:00

December 2008

Merry Christmas and Happy Holidays to you and your family! We hope this letter finds you happy and healthy. This has been an eventful year full of blessings and challenges for us. It is hard to believe that our little boy is 7 years old already! He is about 55lbs of wild strength and energy. We pray that our muscles and backs continue to keep up with him! Sam’s loving hugs, smiles and laughter keep our hearts full and happy each day!

The beginning of 2008 started out with a month long stay in the hospital for Sam. He spent part of the time at Avera Mckennan Hospital and the rest of the time at Children’s Care Hospital. He had an infection that needed to be treated with IV antibiotics three times a day. While he was in the hospital, we remodeled our upstairs bedrooms to make Sam his very own suite. We combined two bedrooms into one and put in a raised bathtub, sink and swing for Sam. His new room has provided us with more space and made it much easier for us to lift him in and out of the tub!

In June, Sam began attending school at Children’s Care Hospital and School. We are so thankful for the wonderful staff of people working with him! His school day begins at 9:00 and ends at 3:30. He is doing great in school and is even learning how to use the big boy potty! He also made his first appearance as a ringbearer in July when our friend Kelsey got married! He was so handsome and performed amazingly well!
Listening to music, reading books and swimming are still his favorite activities. He loves lots of attention!

October brought Jeff ‘s 11th anniversary at the Trane Company. He continues to work in sales and we are thankful for the flexibility that his job allows. In August he had an opportunity to go to a Dude Ranch in Wyoming for work and had a great time complete with cowboy boots and horseback riding! My volunteer activities keep me busy during the day while Sam is in school. I enjoy speaking and advocating about Special Education issues. This year I had an opportunity to speak at USD and present at the GreenSTAR Symposium for SD Achieve.

At this time of year we reflect on all of the blessings God has given us. Our strong family ties and close friends offer us great strength, smiles, love and laughter on days that we need it the most. We look toward 2009 and pray for Sam’s continued good health and happiness. Thanks so much to our family, friends, teachers, therapists, nurses and doctors for making a difference in Sam’s life. You are all so important to us. We wish you a Merry Christmas and much joy in the up coming new year!

God Bless,
The Horstmeyers

Sam's 7th Birthday Party!

2008-11-11T22:48:00.001-06:00

Halloween Fun

2008-11-02T07:16:00.007-06:00

Touching yucky stuff at the haunted house!

Cruising for treats at school on Halloween! Lots of fun costumes!

Darth Vader Sam

My Boys...

At cousin Brook's surprise 30th birthday party. We have aged a bit, for a multitude of reasons!

FRUSTRATING SEIZURES...

2008-11-01T20:44:00.003-05:00

Sam's seizures have increased again and we are in need of prayers right now for some answers. His medication has been increased three times already this fall and he has not had a decrease in seizure activity yet. We do have oxygen at home now which is a comfort for us. Last Wednesday Sam had a CT and an EEG which resulted in a very long day in the hospital. He had difficulty waking from the sedation medication and also had 7 seizures, none of which were during the time he was hooked up to the EEG, of course! His EEG was abnormal as expected, and it showed that he was having a lot of seizure activity and probably more seizures than we are recognizing. The doctors are kind of puzzled right now as to where they should go next. Please pray for Sam's team of doctors, a decrease in seizures for Sammy and patience and strength for Jeff and myself. God Bless you all and thanks for your continued prayers and support!

Fall Festival at CCHS

2008-11-01T20:05:00.005-05:00

Chef Sam had a fun time at the Fall Festival at Children's Care. Some of the kids participated in growing the veggies and caring for them throughout the summer. The result was a fall party full of vegetable fun! The kids decorated their own shirts and the staff dressed up complete with Sam's friend Kathie turning into a human carrot! Sam tried homeade vegetable soup and smelled lots of herbs! Daddy even stopped in for a surprise visit!

Grandma and Grandpa are Home!

2008-11-01T19:20:00.007-05:00

Grandma and Grandpa went on a journey out west to Glacier National Park, up through Banf Canada and back down through Idaho returning home after two weeks of fun! We were all very happy to see each other, but I think Sam was the most excited of all!!!

2008-09-07T21:51:00.004-05:00

Loving Grammy Joyce

2008-09-07T21:39:00.003-05:00

Fun Zoo Pics

2008-09-07T21:30:00.005-05:00

We had a fun weekend playing with the grandparents while Jeff was away at a Dude Ranch! Yes, I said Dude Ranch! He wore cowboy boots and rode a horse in Wyoming with some buddies from work. While he was experiencing the great outdoors, we went to the zoo and had a great time feeding the animals in the petting zoo. The staff was kind enough to bring the animals out for Sam to touch and he seemed to like the horse the best! I was worried that Grammy Joyce was going to pass out after Sam kissed the horse, but she hung in there like the trooper that she is! Lots of wipes were used seconds after their noses met! Also, notice our "extra" goat friend trying to get in on the action!

Play Date at the Park

2008-09-07T21:22:00.003-05:00

Sam had a play date at the park with his friend Allison and he missed her so much over the summer that he needed to say hi by playing footsie!

1st Day of School at CCHS

2008-09-06T20:54:00.008-05:00

Sam will be attending school at Children's Care Hospital and School this year and we are so excited! We are sad to be leaving our friends from John Harris, but are excited about the new program at CCHS. Sam is thriving and trying new things. He is involved in a potty training program and he went pee pee on the potty on Thursday afternoon! We are so proud of him! Time will tell if it happens again, but it has to happen once to happen a second time, right!? They rolled out the red carpet and cheered and clapped for each kid as they entered the building on the first day of school. Sam is very content and happy at school and has a wonderful staff of people working with him.

4th of July in Watertown

2008-08-13T22:55:00.005-05:00

We spent the 4th of July in Watertown at Grammy and Grandpa Horstmeyer's house. Sam had fun listening to the fireworks and smelling the smoke balls. He also loved Grammy's tub! Here are some pictures of the fun weekend!

We're going to the zoo, zoo, zoo...

2008-06-28T21:18:00.009-05:00

We have been enjoying our zoo pass this year. Sam loves to hear the noisy birds and monkeys! I'm not sure what he thinks of the stinky smells, though! He also had a great time feeling the tiger fur, riding the carousel and having a picnic lunch with mommy and grammy. We are looking forward to the petting zoo opening back up so we can watch him feed the horses!

Handsome in my Tuxedo!!!

2008-05-30T09:38:00.004-05:00

As some of you may know, I have an important position in my friend Kelsey's wedding on July 19th!!! I am the ring bearer and get to wear a pin-stripe tuxedo! My grammy and mommy helped me try it on last night and I looked quite handsome!

Rainbow Trout Fishing Videos

2008-05-26T20:32:00.000-05:00

Catching Rainbow Trout!

2008-05-15T22:18:00.009-05:00

Sam went trout fishing with his classmates on Tuesday morning followed by a picnic in the park. Grandpa John was able to join us and we had a great time catching three fish! Sam got a good grip on the one in the picture and even tried to take a bite to explore a little more!

Easter 2008

2008-05-15T22:15:00.002-05:00

A few Easter Sunday pictures.

Molly Joyce

2008-05-04T22:03:00.004-05:00

We have a new baby niece named Molly Joyce! She was born on April 22nd weighing 7lbs 6oz. Grammy Joyce is very excited that she is named after her! Jeff is a proud uncle and was able to drive up quick to meet his new niece and visit Maggie!

Will winter ever end?

2008-04-01T21:39:00.007-05:00

Jeff (aka Grizzly Adams) had Shingles in February!
(now he has a beard, UGH!)
Visits to family doctor, Opthamologist, tests and medications~
Cost=WISKER RUBS! (Sam loves them and Erin can do without)

Sam had a double ear infection, a nasty virus and a rash from top to bottom in March!
Visits to the pediatrician, tests and medications~
Cost=HIS PARENTS ARE EXHAUSTED!

Erin has Influenza and Bronchitis in April!
Visit to family doctor, tests and medications~
Cost=JEFF NOW HAS GRAY HAIR IN HIS BEARD!

Having the love and support from our family and friends to help with Sam!
Cost=PRICELESS

THANKS TO EVERYONE FOR HELPING US MAKE IT THROUGH THIS DIFFICULT WINTER!!!

Back on Antibiotics

2008-03-13T21:42:00.003-05:00

Well...we made it exactly one month without antibiotics. Sam has another sinus infection (we think) so we are treating it with hope that his irritability and headaches will improve! He is cutting a few teeth which has also created a lot of discomfort for him. Those of you who see him often know that he has been missing a tooth on the bottom middle of his mouth for over two years. Not anymore! He has cut his first big boy tooth and I can hardly believe it! He has grown so much this year that I almost wish capris were the new style for boys! He is also close to 50lbs. In addition to prayers for Sam and our family, we have a few prayer requests. Please keep Jeff's aunt Sue in your prayers as she begins a new round of chemotherapy and for her family as they go through this painful process with her. www.caringbridge.org/visit/suehorstmeyer Thanks to everyone for your thoughtful comments, support and prayers!

The finished project!

2008-03-10T21:37:00.009-05:00

We are enjoying Sam's new room so much! Grammy and Grandpa Horstmeyer worked hard to get it all finished up and we greatly appreciate all of their hard work! The raised tub is wonderful and making lifting much easier! We are planning on getting a mobile lifter www.surehands.com/mobiles_us.html#zestien in the future to do the lifting out of the tub for us. Grandma Donna is busy making new pillow cases and curtains to match Sam's dinosaur themed suite! Grandpa John has been supervising the project and staying busy at work. We thought he and mom retired at the end of January, but he hasn't stopped working yet!!! In the pics you can see Sam's swing in his room. Jeff and Larry put a header in the ceiling so we can have it upstairs. It is wonderful to have everything Sam needs all on one level. We are richly blessed by all of the wonderful talents our parents share with us!

Working on Sam's Suite

2008-03-07T21:46:00.009-06:00

During Sam's stay at CCHS grandpa Larry and Jeff began work on Sam's suite. They knocked out the wall between our two upstairs bedrooms, installed a raised tub and and added a sink. Grammy joyce helped by painting his new room! Stay tunned for the finished project!!!

WE ARE HOME!!!

2008-02-13T21:59:00.003-06:00

We checked out of CCHS today around 4pm! Sam clapped all the way home in the van while listening to stories. I think he was very happy to have some fresh air when we went outside too! We met many nice people who helped to make our stay very comfortable during our three weeks at Children's Care. We are so thankful for the prayers and support this last month! Please continue to pray for Sam's health. He is definitely a happy boy when he is feeling well and it is so nice to have his smiles back!

Change of plans...

2008-02-10T10:26:00.000-06:00

After a 2 1/2 hour meeting last Monday with Sam's surgeon, pediatrician and various others we have decided to wait with the g-tube surgery. We came to this conclusion because we are not sure that it is the right time of year to have this done. The feeling was that during this intense cold/flu season, the peds floor is very busy and they might not have enough staff to meet Sam's needs. Also, we would like to have hime fully recovered from this past illness before beginning a new challenge. We will discuss the surgery again in two months. So, the GOOD news is that we should be able to bring Sam home by the end of next week!!! We are so excited to think that we may all be home together again. The staff at CCHS has been wonderful, but it's not home and we are anxiously awaiting our move back to the east side of town!

Our CCHS Home...

2008-01-31T12:42:00.000-06:00

Here are some updates from the past week. We (Sam and I at night and Jeff in the evenings after work) are currently living in the Fisher-Coon Unit at Children's Care Hospital and School. It is the medically complex part of CCHS. Sam is on IV antibiotics 6 times per day and has had new ones added and changed daily. I believe that his doctor together with the infectious disease doctor have found the two they need to get rid of the junk that grew out from the cultures taken last week. However, that means that Sam is hooked up to IV meds for at least 13 more days. He is being a good boy despite all of the poking and prodding! It looks like he will be transfering back to the hospital after our stay here for surgery and a g-tube placement. This is a heart wrenching decision for us! We are confident in our doctors recommendations, however, we do not want to make the wrong choice for our Sammy! He will have a very difficult recovery for about 8 weeks after the surgery. We will probably return to CCHS during the recovery time and not be home for quite awhile. We are so thankful for all of the prayers and encouragement that we have received over the past few weeks. Please continue to pray for Sam's health, guidance for our difficult decisions, patience for Sam's recovery and for Jeff and myself. We are used to not spending much time together, but at least we are usually in the same house at night. Being in different zip codes is a bit of an adjustment! I have added a few pictures of Sam's room at CCHS and one of him playing with his piggies. We are anxiously awaiting bringing him home again.

Thursday Update

2008-01-24T17:18:00.000-06:00

Roberta again---Sam didn't stay asleep too long after I left last night and was awake by 11pm. Erin was home long enough to turn around and head back to the hospital. He was awake on and off every hour or so and then the three of them slept in the tiny hospital bed! Cozy lil' family.
The Care Conference happened at 10am this morning. Erin, Jeff, and John were involved with Sam's doctors, RN's and Social Workers from Children's Care Hospital. They were supposed to come and get Sam for surgery to put tubes in his ears at 10:45ish and while waiting Sam was back to his old self at times with Grandmas Joyce and Donna and I. We read stories and walked the halls with the iPod. He wasn't able to eat or drink this morning and so when the surgery got pushed back, we were worried. He was a trooper and went to surgery about 1pm.
During the conference it was decided they would put in a PIC(sp?) line for the antibiotic and he would be transferred to Children's Care Hospital and be in their medically complex unit for a couple of weeks while he kicks the sinus and ear problems. Long term plans are yet to be determined for sure. They will also put in a feeding tube, but that will be a couple of weeks yet.
John, Donna, Jeff, Joyce and I toured CCHS this afternoon to see where he'll be for a while.
Again, I am sure I have forgotten details, and I haven't seen him since he's been out of surgery. I am on my way back to the hospital shortly.
thanks again for the support and prayers, keep them coming...change is difficult and we will continue to lean on our faith, family and friends.

Update

2008-01-23T22:16:00.001-06:00

Roberta is writing this update, so I am sure some details have been forgotten.
Sam slept pretty well last night and had to be woken up this morning. Erin went home last night about midnight and got some rest and Jeff stayed with Sam overnight. Sounds like that is the plan tonight too. He had a better morning, though still clearly uncomfortable and just not content. Sam had a swallow study and esophagram this morning and it showed he had significant reflux, which Erin thinks could be seeping into his sinuses and causing pain. Erin is practically a doctor, she doesn't have the letters behind her name, but dang she knows her son.
This evening Grandpa John and Grandma Joyce walked him and tried to calm him down to fall asleep and eventually he did fall asleep in his mommy's arms and was asleep when I left the hospital about 9:45pm
Tomorrow is a big day, Erin and Jeff will have a care conference with many of Sam's doctors and other representatives from support services. Sam will also have tubes put in his ears at 11:30am.
Erin and Jeff are truly amazing parents...Joyce, John, Donna, Kelsey, Brenda, myself and others are also taking their turns with Sam. It does take a village to care for our precious boy.
PLEASE keep us all in your prayers, we need them!
More to come after tomorrow or if Erin reads this and adds what I have forgotten!

Sam's at Avera Mckennan

2008-01-20T19:57:00.000-06:00

We admitted Sam this afternoon because we were no longer able to control his pain at home. His blood tests are normal, so tomorrow he will have a head and stomach CT to try and find the source of his discomfort. He is on Morphine and that seems to be helping. More to come...

Please pray for our boy!

2008-01-19T18:01:00.000-06:00

We are in need of prayers for our Sammy! He has not been feeling well for the last 10 days. His neurologist, GI and pediatrician have not been able to figure out the source of his discomfort. As a result, he is on a lot of pain meds and Valium all day to try and control his pain. The doctors are planning on admitting Sam on Monday to the hospital. Please pray that they figure this out for our boy!

Crazy Horstmeyers!

2007-12-23T22:29:00.000-06:00

Sam and Grammy were reading stories when Sam decided it would be more fun to wrestle!!! Jeff and Maggie were practicing gymnastics in our living room when Uncle Jeff showed off some pretty impressive moves!

Celebrating Grandpa John's Birthday

2007-12-23T21:51:00.002-06:00

We celebrated my dad's birthday last Sunday night, so we had him pick up Applebees on his way over! Cooking is not our specialty at the Horstmeyer house, but we are really good with take-out menus! On his actual big day, he braved dinner and Christmas shopping with his girls. As you can tell from the pictures, Sam had lost of hugs and kisses to share.

Sam is 6 years old!

2007-12-23T21:42:00.000-06:00

We had a quiet celebration for Sam's sixth birthday this year. He was not feeling very well, so we spent the day at home and opened presents with both grandmas and grandpas and auntie Roberta. It is hard to believe that he is six already!

Hy-Vee Field Trip

2007-12-23T21:03:00.000-06:00

Sam and his kindergarten friends took a field trip to Hy-Vee before Thanksgiving and shopped for their Fall Feast at school. Sam was a very good boy! He felt the cold of the freezer, ate cheese at the deli and even touched a live lobster!

Halloween 2007

2007-12-10T11:02:00.000-06:00

Hi Everyone! I know it has been a long time since our last post! We have had a crazy fall and I am trying to catch up on the blog. Here are some Halloween pictures. Grammy Joyce thought he had to have this Spiderman costume since he clings to us like a web!

Zoo Fun

2007-10-08T22:29:00.000-05:00

Today Sam and I joined Roberta and friend Adam for an afternoon at the zoo. Sam had a great time listening to the very noisy monkeys and feeding the horses in the petting zoo. He almost made it through the whole zoo without listening to his IPOD! He was a very good boy this past weekend too. He especially enjoyed dancing up a storm at Jeff's aunt Sue's surprise birthday party on Sunday evening. Our boy has quite the dance moves! He had three seizures this weekend and we have come to see a pattern of multiple seizures every 7-10 days. Please continue to pray for complete seizure control and for our boy to stay healthy and happy!

Grandma Hoddy

2007-09-28T22:58:00.000-05:00

This past week has been filled with mixed emotions as we say goodbye to a very special lady. My grandma Harriet Bennett passed away Tuesday night after a very uncomfortable week and several years of memory loss. She was a wonderful grandmother, mother and friend. She always put others before herself and took care of those around her. She blessed many lives through her 35 years of teaching. She was my inspiration for becoming an educator, and I enjoyed many stories of her experiences teaching in a one room school house. She spent hours playing with us and always had a fun craft or activity to entertain us. Her jars of brown sugar cookies and white sugar cookies were always full and she made many Sunday roast beef dinners for us. My memories are great and I feel so blessed to have had the opportunity to grow up with my grandparents in town. They were such a wonderful part of my childhood. She will be greatly missed, but I know that she is receiving her rewards in Heaven and watching over us each day!

Visit Roberta's noise from the zoo (link on the left) for another special note about my grandmother and a link to her obituary.

Vacation on wheels!

2007-09-28T22:35:00.002-05:00

Jeff recently surprised me with a new toy! He thought it would be fun for me to drive something other than our "handivan" and also something for us to enjoy together. Since our little man doesn't allow us very much time together or an opportunity to vacation, we will be enjoying short respites in our Audi TT!

*Maggie is ready for a ride!

First Day of Kindergarten 2007

2007-08-22T00:52:00.000-05:00

Sam had a wonderful first day of Kindergarten! He was very happy and such a good boy at school! They are short staffed in his room, so I have been helping out and staying all day at school too. We are working on getting him a one-on-one aide that is not his mother! With the help of his own EA, I think he will do great at school! Here are some pictures of the big day.

Therapy Pictures

2007-08-09T23:05:00.000-05:00

Updates, finally!

2007-08-09T22:14:00.000-05:00

Well, it is official! Jeff and I broke the mold with little Sammy! We received our results from Rochester regarding the genetic testing and everything was negative. We are back to the original diagnosis of autosomal recessive microcephaly. Although we are disappointed with the lack of information we received from our Mayo trip, we are glad that we went. Sam has been having fewer seizures in the last two months, however, he continues to have 3-4 every week to ten days. He has a type of seizure disorder that is hard to control with medication. Also, he can have days without seizures and then have a cluster of them on the same day.

We started Sam on a new sleep med on July 4th which is helping a great deal! Of course, it is causing problems with other parts of his delicate system. Finding the right balance of meds is always a challenge. We also have a night nurse which has been a huge blessing for us! She comes from 10pm to 6am Sunday through Thursday nights. Jeff and I are finally sleeping again in the same room!

We are looking forward to the transition to Kindergarten. Sam has his first day on August 20th. Hopefully, Sam will do well and enjoy a longer day of school. We are so happy to report that he has started to do a little standing again! I think the combination of sleep and seizure control has given him the strength to take steps again! We are so thankful for the return of some of his lost motor skills! We were afraid that we would not see him standing and walking again.

Thank you for the continued prayers and support for our family! We are so grateful for the positive changes that we have seen in the last two months with Sam! Please add Jeff's aunt Sue and her family to your prayers. She was diagnosed with a brain tumor last weekend. She has a CaringBridge page which can be accessed through the link Carson Corner on our site.

Mayo Pics

2007-06-06T21:31:00.001-05:00

Here are a few pictures from our "Mayo Vacation." We took a walk one evening around the Mayo building and ran into the Mayo brothers! We thougth we should have a picture with the famous duo!

Mayo Trip #2

2007-06-03T22:09:00.000-05:00

We survived our second trip to Rochester last week! It did not go as well as the previous trip. Sammy had a very difficult day on Thursday due to the tough eye exam he had first thing in the morning. Needless to say, we heard sounds out of our little man that we had never heard before and never want to hear again! He was so upset and we were sure that he was going to have a seizure during the appointment, but he waited until we made it back to the room. After he finally calmed down, he had a big seizure lasting about 6 minutes and we had to give him meds to stop it. Jeff and I decided that it is going to be a very long time before he has another eye exam! We didn't learn very much new in relation to his eyes, however, we did learn that the Mayo Dr's think his eyes are even worse than we had previously thought. His retinas are detached in addition to the previous six or so problems he has already had diagnosed. The visit with the geneticist went fine and Sam had blood drawn for further genetic testing. Unfortunately, we have to wait until the end of July before we will have results back. The doctor thought that Sam may have characteristics of a couple of different syndromes, so we will have to wait and see. We are happy to be back home and do not plan a return trip to Rochester until fall. The sleep study and behavioral psychologist appointments our 4-5 months out on the schedule. I guess since we have survived for 5 1/2 years without much sleep, another 4 or 5 months won't make much difference! We continue to thank the Lord for our humor and our ability to keep the glass half full!

Mayo Trip #1

2007-05-26T21:17:00.000-05:00

We successfully made our first trip to Rochester last week! Sam was a very good little boy and the trip went well. Sam had an EEG on Monday morning and a consultation with a pediatric neurologist who is doing a two year fellowship in epilepsy at Mayo, in the afternoon. He spent two hours with us and offered some new information. He was most concerned with diagnosing Sam. He feels that Sam has something other than an autosomal recessive form of microcephaly. He also feels that a diagnosis would help to treat Sam's seizures and give us more information regarding what we can expect for Sam's future. He recommended that we see a geneticist for more information which will send us back to Rochester on Wednesday the 30th. Sam will see an opthamologist on Thursday morning and the chair of the Mayo genetics department in the afternoon. I guess that if anyone could figure out our complex little boy, this should be the woman to do it! The neurologist informed us that Sam's sleep problems are not behavioral, but connected to the underdevelopment of his brain. This was reassuring to us since we have heard from doctor after doctor that they think it is a behavioral sleep problem, even though, Jeff and I continually try to keep a sleep routine in place with no success! We have always felt that there was more to the problem than behavior. We are also awaiting appointments for a sleep study and a behavioral psychologist at Mayo. Hopefully, the sleep study and psychologist will be able to determine the correct plan and medication for Sam. We are cautiously optimistic that we may sleep through the night at our house in the next year! Sam also had an MRI while we were there and was put under general anesthesia. We were very impressed with everyone at Mayo and how smoothly everything works together. Please pray for success with our second trip on Wednesday and for the doctors who are working with us. We appreciate all of the thoughts and prayers from everyone!

Easter 2007

2007-04-15T16:10:00.000-05:00

We had a nice Easter this year. We went to church with the Bennetts and enjoyed a nice meal at my parents house. We then spent the afternoon together until Horstmeyers and Engebretsons arrived from Madison for dinner. We all had a great day and Sam was such a good boy!

Sam's Surgery Update

2007-04-15T15:55:00.000-05:00

Sam had surgery on Friday morning at Avera Mckennan. We arrived bright and early at 5:30ish am and he was taken into surgery at 7:00. That was quite a moment for us to watch our little boy being carried away from us into a room full of strangers. He had a couple of procedures done by two different doctors. He had his adenoids removed and some work done inside of his nose to allow him to have a clearer airway. His adenoids were over 50% enlarged and the ENT doctor was quite happy to report that he was certain that Sam would be breathing better soon! He also had an endoscopy to look at his esophagus and stomach. No tumors or ulcers! We will receive the results of the three areas biopsied this week. His reflux looks to be under control too! Sam was such a great patient and he came through the anesthesia like a champ. We were able to come home in the late afternoon on Friday. Our nights have been a bit challenging as he is draining a lot and kind of miserable, but nothing we can't handle. We were certainly blessed with tons of prayers and so thankful to have so many people praying for us! We were not able to have the feeding tube placed at this time because the surgeon was concerned with Sam having three procedure on one day. We will have to see what the future brings and decide if the g-tube is necessary after the test results are back.

Photo Info

2007-03-11T22:18:00.000-05:00

The following pictures are of Grammy Joyce and our niece Maggie. Grammy has her hands full! The third picture is Sam with our wonderful parish nurse from Gloria Dei Lutheran. Judi is so good to us! The fourth picture is Sam at school with some classmates and his teacher, Darlys. The first and last pics are Sam on his way home after a great morning at school!

Random Photos

2007-03-11T22:03:00.000-05:00

CT Scan

2007-03-11T21:46:00.002-05:00

Sam had a sinus CT on Friday morning. Unfortunately, we did not find out any new information. His sinuses were clear and we are now leaning towards allergies causing Sam's discomfort. He has to have more blood tests next week and will see his allergist in two weeks. He continues to suffer from headaches most days. We have also rescheduled our appointment in Rochester for the end of May. Sam has been sick on and off since October, which is when we started his new seizure medication. If the allergist doesn't find anything, we will have to look at switching his seizure medication. He had two very short breakthrough seizures last week, but those are the only two in the last 2 1/2 months. We are excited for spring to be here so Sam can spend time outside-his favorite place!

Coloring Pictures

2007-03-11T21:36:00.000-05:00

Sam was having a happy afternoon last weekend so we decided to do a little coloring! He also thought it would be fun to chew on the crayons a bit too! When he is feeling well, he has been going to sleep a lot easier at night. It would be such a blessing if he could sleep through the night by himself in his own bed!

Praise and Thanksgiving!!!

2007-02-11T20:34:00.000-06:00

We are so thankful to the Lord for answering our prayers!!! Sam started eating and gained two pounds and we were able to avoid all tests and procedures last Friday! We will continue to have Sam weighed at the GI Dr.'s office each Wednesday for the next couple of weeks to make sure that he is maintaining or gaining weight. The sleep medication we began using is working wonderfully and allowing Sam to sleep most of the night. He is so much happier and content now that he is getting sleep and eating more. It has been like night and day to take care of him and we are enjoying a bit of "normalcy" in our life!

God doesn't give us more than we can handle?!?

2007-01-28T19:42:00.000-06:00

Sam had a wonderful week last week! He went to school four days in a row and seemed to feel really well too. We continue to struggle with feeding! I received a phone call on Friday afternoon from Sam's GI doctor indicating that they would like to put in a feeding tube. Sam is having an endoscopy and a colonoscopy on Feb 9th and he would like to also put the g-tube in at that time. This is a huge decision for us since we have worked so hard to avoid this the last five years. We know that there are positives and negatives to both sides. Please pray that we make the right decision for Sam.

Sam has been a handful the last two months and we don't know if it is due to stomach upset, hunger, sinus problems or ? When he is irritable he is extremely strong! This picture is Jeff after he lost a battle with Sam. I believe this time it was a run in between Jeff's nose and Sam's foot! We definitely have to have our defenses up when he is frustrated! He does have his good days, but it can change from hour to hour. His smile still helps to make the challenging days easier!

Back in School/Caregivers Conference

2007-01-23T23:21:00.000-06:00

Praise the Lord! Sam has had two wonderful days in a row! He has gone to school and laughed and giggled most of the last two days. We are so thankful when he has a good day that it almost makes us forget about all of the challenging ones. Please pray that Sam continues to feel well and that his sleep habits improve so we can all catch up on our rest.

Today I attended a caregivers conference which was a bit helpful, but mostly applied to individuals who were caring for a spouse or aging parent. I was the youngest person in attendance and the only person with a child who has special needs. During the afternoon session the speaker opened it up to people to share their challenges in finding ways to care for themselves. I managed to stump the expert on caregiving with our situation! Go figure! Sam has defied all the odds thus far and continues to challenge those around him. The verdict is still out on coming up with a way to find time for ourselves! Our Motto: ONE DAY AT A TIME AND SOMETIMES ONE HOUR AT A TIME! Oh, and thank the Lord for humor!!!!