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.

Sam is 5 years old!

We celebrated Sam's fifth birthday with a big party! We had a great time being entertained by Phil Baker! Sam loved the music but unfortunately had to cut the party short due to having a seizure. We were thankful he came through it ok.

More Seizures

We had thought we were out of the woods with Sam's seizures since we made it two weeks without one, but spent the afternoon in the ER again. His medications are at a theraputic level and should be controlling his seizures, but he had one on Tuesday afternoon, three short seizures on Wednesday and a very involved one this afternoon. We chose to bring him home (he had a second seizure this evening) with an IV in instead of spending the night in the hospital. We will be back in on Friday morning to see his doctor. Please continue to pray for Sam's healing and for the seizures to be controlled. We so greatly appreciate everyone's love and support.

A day in the life...

Well, today was quite a day! Sam was full of challenges. This morning began with Sam deciding to poop while sitting in my lap and the diaper didn't quite do its job, if you know what I mean! He was in a great mood, but had a seizure at 12:30 while I was getting him dressed after his bath. This one lasted about three minutes and then he took a two and a half hour nap. When he woke up he went potty and the diaper again did not do its job! Needless to say, Sam and I wore a lot of clothes and I did a lot of laundry. He also vomitted all over the living room around 4:30 leading to his second bath of the day. Sorry for the yucky details, I guess I just needed to vent a bit. Keep praying that the seizures stop. When I talked to the neurologist today he said he would like to give the new meds time to work. It is hard to be patient during this time but we know that he is right. Sam will have his levels checked in two weeks when the meds are at full strength. Thanks for all of the comments and prayers!

Thank You!!!

Thank you to everyone who has been sending words of encouragement and prayers for Sam and our family! Sam had another seizure on Monday night lasting about four minutes. We visited with his Dr.'s office on Tuesday morning and it was agreed to switch medications. He is now off of the med that we used for 2 1/2 years and on two new seizure meds. We will ramp up the dose over the next three weeks and then check blood work in the fourth week. We are hopeful that this will be the answer to getting the seizures controlled.

We went out to the disability expo this evening hoping to find something to aid in lifting Sam out of the bath tub. He is a slippery heavy little guy when wet! We are also in the process of purchasing a canopy bed for Sam that will allow him a safe environment to be in at night. The sleeping issues are not improving and we hope that this bed will help with that issue. Sam is using a walker in therapy and seems to be really enjoying walking and making some progress. We are so thankful to see this, as we have seen quite a bit of regression since the seizures began again. Thank the Lord for giving us some reassurance in this area!

EEG Results

We found out results of the EEG today. This was faster than we had anticipated, but Sam's team of doctors is wonderful and always quick to keep us informed. The results were abnormal which we sort of anticipated due to the increased seizure activity. The test showed that Sam is having abnormal activity in his left front temperal lobe. We were happy to get results from the test to help the Dr. proceed with the best treatment for Sam. He has decided to take a conservative approach by watching and waiting. His medication levels are good and we hope to see them controlling the seizures. In the event that they do not and we see more seizure activity, we will have to look at medication changes. We are very confident in the neurologist and his decision. Please continue to pray for the seizures to be controlled!

EEG Update

We had a good day. The procedure went smooth and Sam came out of the sedation well. The tech got a great reading from the test with Sam sleeping and awake. We will have to wait for the results possibly until Monday. Thanks for the continued prayers! We felt them today, especially when Sam woke up from his nap with a giggle!

Another Seizure

Sam had another seizure today about 1:30 as we were entering his pediatrician's office. The only good thing about it was that his Dr. was able to observe his seizure and monitor his breathing. This one lasted about five minutes and stopped shortly after we administered his medication. We are scheduled for an EEG on Thursday at noon. We will have to sedate him and we will also do labs at this time. Please pray for the sedation process to go well. We will be spending most of the day in the PICU at McKennan and we will update the blog after we find out the results. Thanks for all of your thougths and prayers!

WE NEED PRAYERS!

We have had a tough last week and are in need of some prayers at our house! Jeff injured his back on Saturday morning and has been in an enormous amount of pain! We are slowly seeing improvements thanks to the Chiropractor and prescription medication. It is hard for all of us since he is unable to lift or help with Sam very much. Sam has been good for me, but he had another seizure tonight around 8:50 pm. This one lasted almost 4 minutes. We will probably need to have another EEG done and look at changing seizure meds. I will talk to his neurologist in the am. Tomorrow is a new day, praise the Lord. Let's hope it is a bit more uneventful!

Happy Birthday!!!

We celebrated Jeff's 34th Birthday with Horstmeyers on Sunday with a trip to acute care for Sam (another sinus infection) and ice cream cake. We celebrated with the Bennetts on his birthday Monday night. (I'm trying to cover the "football on the brain" shirt that grammy Joyce doesn't like!)

Talking On The Phone

Sam is enjoying oreos while listening to a song on the phone! Both grandmas have their own special song that they sing to him when they call or visit. As you can tell, he loves to hear their voices as much as he loves to eat cookies!

Play Time

Sorry we have been out of touch the last few weeks! Sam has had one more seizure and another sinus infection. We are continuing to watch close for the seizures to see if we need to do another EEG or switch medications. We also scheduled an appointment with an ENT Dr. for Sept. 7th. The pictures are of Sam and grammy reading and playing when she and grandpa were down a few weekends ago.

ER Visit

This weekend started off well with a visit to the Pizza Ranch. Friday night we went to dinner with Tom, Robin, Carson and Brook and had a great time. Saturday, Sam was a good boy for daddy while I took a trip to visit a friend's lake cabin for few hours. I returned in time for the three of us to have dinner with my mom and dad to celebrate their 35th wedding anniversary today. Sam was a very good boy, but had a seizure in the car on the way home. He has not had a seizure in almost two years. We were able to stop it with the medicine we always carry and drove to Av. Mckennan ER. Thankfully, he did not have any more seizures! He did have a CT scan done and the good news is that it looks the same as it did two years ago. They had to put in an IV which never goes well, and we couldn't get him to settle down without a lot of medication. It was a tough night for all of us!!! We finally made it home around 1:00 AM and Sam slept for most of the night, thanks to the meds! Please pray for a less eventful week!

Feeling Brave!

This afternoon Sam and I ventured to the pool to enjoy the beautiful weather. I guess I was feeling brave because this is not typically an activity that I would fly solo on. We had a great time and Sam was perfect!!!

Snug as a bug in a rug!

This week is the first of our four week summer vacation from school. Summer school ended last week and we have been a bit lazy in the mornings. Sam starts school again on August 28th (Jeff's Birthday) and I am sure we will both be looking forward to the activity. Mom is just not as entertaining as all of those people at school, I guess!

More Therapy Pictures

These are pictures of Sam in swimming. He is learning to move back and forth in the pool by listening to grandma on one side of the pool and then moving back toward me on the other side. He wears a swimming collar so that he has freedom with his arms and legs. He also wears weights on his ankles to keep his feet down. He enjoys swimming and works hard too!