Our CCHS Home...

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

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

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

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!

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!

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

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!

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

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

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

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

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!

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

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

Updates, finally!

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

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

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

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

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

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

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

CT Scan

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

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!!!

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?!?

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

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!!!!

Health Challenges!

The last month has been full of health challenges with Sam! After 3 1/2 weeks on antibiotics, we ended up with three days of antibiotic shots this week! Not fun for any of us. He seems to be doing much better and hopefully we are in the clear for awhile. After losing almost three pounds, the GI Dr. decided we needed to put Sam through some tests. Last week Sam had a video swallow and lots of X-Rays to check on his GI system. On Feb 9th we will be spending the day in the hospital. He is going to have an endoscopy and a colonoscopy to rule out any complications. This will not be fun since he will have to be under general anesthesia. Hopefully, we will receive some helpful information. The good news is that Sam has not had a seizure in two months! We are waiting to hear the results of the GI tests before we decide if we are going to Rochester at the end of February or putting it off until spring. We are not certain if the seizure meds are causing the complications with Sam's tummy problems or not. Sam has also not been sleeping and he has started a habit of beginning his day around 3:00 AM!!!! This is exhausting for his parents. Please pray for Sam's health, his sleeping habits and that the tests go well. Also, please pray for Jeff and myself that life gets a bit calmer! We could really use a break!

Christmas Pictures

Update

I have been a bit behind in my blogging lately! Sam has not had a seizure for almost two weeks now and we are hoping that the current medication he is on will continue to control his seizures. We are scheduled to go to the Mayo Clinic at the end of February. We are not real excited about waiting that long or the prospect of spending 4-7 days in Rochester for testing. We are exploring some other options in Minneapolis too. Sam has been working hard in swimming and therapy. Here is a recent picture of Sam walking in therapy at CCHS.