Tuesday, December 24, 2013

The end of the semester and a Merry Christmas

Once again it has been far too long since my last writing. Unfortunately, this semester has been exceedingly difficult and I've had to prioritize my schoolwork. With the semester finally over, I can fill you all in with what has been going on with Landon. There have been far too many doctor appointments, late nights, and moments (good and bad) to write them all down. To save you all several hours of reading about minutia, I thought this blog would be best served as a state of affairs summary of how things are now.

After struggling for several weeks with an intolerable amount of gassiness, Karen and I were finally able to get Goat in to see a GI specialist in Kansas City. He was admitted to Children's Mercy and stayed for 3 days before the hospital team came to any conclusions. The biggest problem Landon's gas was causing is that he would become so filled with air that he would go into screaming fits and hold his breath. Due to his condition, he wouldn't trigger himself to breathe again and would start to turn blue and get cold due to lack of oxygen until we could force him to take a breath again. The problems as they were, the objective of treatment was to make him more comfortable by making the gas easier to pass but not necessarily prevent gas from forming.

The plan we came up with was to start Landon on a pre-digested formula so that his body would be able to absorb the nutrients right in his gut instead of breaking them down as the digestive process can produce a significant amount of gas (as anyone who has had a few too many beans can attest). The next step was a laxative to help the forward motility of the gas. Because Landon can't coordinate pushing to help himself potty, he needs softer stool to make the process easier. The first few days after we started him on the laxative were a diaper changing adventure as he was clearing out almost 6 weeks of backed up stool. He has definitely made up for lost time since then. The final change to Landon's diet was the addition of simethicone (known by brand name as Gas-X). This made burping easier for him by coalescing small bubbles with high surface tension into big bubbles with lower surface tension and easier reverse motility, essentially turning foamy bubbles into big bubbles that are easier to burp.

Another problem we ran into was that Landon began having seizures again and these proved very difficult to control. We increased his dosage of both phenobarbital and levitiracetam but he continued to have tremors and seizures when he cried. We finally figured out that the seizures seemed to be triggered by his breath holding and once we got that under control, the seizures abated a bit. He still is having tremors occasionally but they don't seem to affect his overall happiness so we are comfortable with his level right now.

More recently, we have been struggling with Landon spitting up big portions of his meals. The reason behind this is unknown but it poses a serious risk to his life. That's one of the challenges to having a child with Landon's specific special needs. Spitting up, vomiting, or even runny noses are a serious problem and we have to care for them vigilantly. The best therapy we've come up with so far is to change is feeding schedule and add erythromycin to his medications. Erythromycin in an antibiotic but it also speeds up how fast his stomach empties into his intestines so that he has less available to spit up. We've started feeding him 4 times a day, at the 9's and 3's, more slowly but greater volume. The less he has in his stomach at one time helps limit how much he can spit up and ultimately aspirate.

As I've mentioned before, we have a nurse that comes in during the day while I'm at school and Karen works. We recently qualified for respite hours from the nursing agency as well, which means that for 10 nights a year we can have a nurse come and spend the night so that Karen and I can get a full night's sleep. That's pretty exciting news for two people who haven't had a full night's sleep in nearly 8 months and we are already planning which days we will need someone to stay over. Most likely we will be using them on the nights before I have big tests so that I can focus or rest, depending on my level of preparedness.

For those who've asked how Karen and I are, we are still exhausted much of the time but doing fine otherwise. Karen still enjoys working at the jewelry store and has enjoyed decorating for the holiday season. Classes ended well for me as I managed As and Bs through some very difficult classes and with the added challenge of some long nights. Unfortunately, several of my closest friends weren't able to move on to next semester due to the devil of a class that is surgery, which claimed 15% of the students in my year. It won't be the same to study without them but I'm confident they'll find success their next time through. Next semester starts all too soon on January 8th.

In general, things are much the same for us as they've always been but fear is creeping into our minds a little more as time goes by. Each close call, each breath holding spell, every seizure makes us a little more afraid for Landon. While it has been a slow process, he has progressively gotten worse and we can only do so much to keep him from getting the flu or cold. If he were ever to catch a serious illness we would be in dire straits. You can only jolt awake to the sound of him choking in the middle of the night so many times before you wonder if one time you won't wake up. We have been extremely blessed to this point to have quick reflexes, light sleep, and a lot of luck. We continue to provide the best life for Landon that we can and I think, if he could tell us, he would say he's happy.

As we roll over from Christmas Eve into Christmas Day, I think it's important to recognize our blessings and the gifts we've received all year round. There were many times we questioned if Landon would ever get to see his first Christmas and for his presence today we are grateful. We have had the support of a community I'm confident can't be matched by any in the world. Despite our challenges, we find happiness in each day and try to be a pillar of love for those in our lives. Today we celebrate the birth of a baby who lived and died so that one day Karen and I can be with Landon again and for that I am eternally grateful. So Merry Christmas! Embrace your loved ones and enjoy each other on this special day.

“Then the Grinch thought of something he hadn't before! What if Christmas, he thought, doesn't come from a store. What if Christmas...perhaps...means a little bit more!” - Dr. Suess, How the Grinch Stole Christmas

Tuesday, October 15, 2013

Appointments and Community Support

This post is long overdue and I'll apologize now for how long it has taken me to finish. I've gotten so busy between classes, homework, studying, and surgery that I've had very little time to organize my thoughts and write about the events of the past few weeks. Unfortunately I don't see myself getting any less swamped in the near future so I will warn anyone reading that it might be another extended wait between updates.

That said, we've had an extremely eventful past few weeks and have a full schedule in the weeks to come. On September 29, my parents hosted a fish fry at their home for our community and supporters. Several dozen people came out on a beautiful Sunday afternoon to eat and have an opportunity to meet Landon. We really appreciate all the volunteers who helped prep food and pick up. We wish we could have stuck around longer but I had to get back to study for an exam on Monday morning.

Little Goat has had a tough road over the last month. We have consistently struggled with balancing his tremors, gassiness, and spitting up. As he gets bigger, we have to give him more anticonvulsant to control his tremors. However, as his dose of anticonvulsant increases, Landon gets very gassy and has had several nights where he has been up screaming until the early morning. We can control the gas a little by increasing the amount of food he gets with his meals every 4 hours but he spits up significantly more. As I've mentioned in previous posts, the biggest risk to Landon's health right now is to spit up and aspirate.

Landon had several appointments last week that we are still waiting to hear results back from. They drew several milliliters of blood to test Monday. On Friday, Landon had x-rays taken due to swelling in his right leg that has made it approximately 1.5-2 times larger than his left leg. The swelling was diagnosed as a blocked lymph duct but the radiographs were taken to rule out any more significant complications. It is difficult to assess if Landon would be in any pain if he had more sensation in his lower extremities but he acts happy and comfortable so we are not overly concerned it right now. Landon's appointment Friday left us concerned about other issues right now. Dr. Katz has suggested that we consider placing a tracheostomy tube. He described Landon's current condition as "perilous" and that he is "at high risk for a respiratory crisis." This advice has weighed heavily on Karen and I for the past few days. Is it fair for Landon to go through another significant surgery? We can't know for sure but it is likely that the tube will be uncomfortable. Furthermore, it will silence Landon so that we won't hear his cry or rare coos anymore. Those are risks and moments that Karen and I are not willing to give up considering Landon's long-term prognosis and we have elected to not go with a trach tube.

We were extremely fortunate to have time to come home Saturday evening for a fundraiser held for Landon at the Elmwood-Murdock High School. There was a silent action, bingo, great food, and wonderful company. The event was hosted by the FBLA chapter and we wanted to thank that group of students for their selflessness and generosity. In particular, we would like to thank Brenna Backemeyer as the primary organizer of the event even with all her other responsibilities as a student and chapter President. There was an unbelievable show of support and hundreds of people showed up to eat and support us. Everyone was far too generous but we couldn't be more thankful. It is events like this that remind me how lucky I am to have been raised in this community and is a great source of pride.

Emotionally, Karen and I are both struggling to stay energized. We both emphasize having a positive attitude and lifting each other up during difficult times but lately we have just been getting exhausted, both mentally and physically. It's tough sometimes when it feels like you're in an endless struggle that will never end. Conversely, if our struggle ever did end it would be the worst day of our lives. The whole situation is incredibly taxing on our emotions and attitudes. Knowing that we have support from family, friends, and community is really all we could ask for. Thank you for all your prayers as well. As we continue to embrace our situation and try to live each day as a gift, we could not do it without our faith.

"Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained." - Marie Curie
Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained
Read more at http://www.brainyquote.com/quotes/keywords/perseverance.html#mIRfXBfzE5EHQXYr.99

Wednesday, September 18, 2013

Struggles with medicine

I apologize for the length between messages and the brevity of this one. I have been getting bogged down in schoolwork and studying as the semester is hitting full swing so I haven't been able to dedicate the time to writing that I would like. Landon has had some negative changes in his health stemming from his growth in body size. As he grows, the amount of medicine he requires to control his tremors/seizures increases along with his size. Unfortunately, the increased amount of medicine also has begun to upset his stomach and cause him to spit-up excessively. As I've expounded before, spitting up is one of the greatest risks to Landon's health with the risk of aspirating.

To help control his reflux, Dr. Knopp prescribed Prevacid to make his gastric contents less acidic after the addition of levitiracetam (his anticonvulsant). While the Prevacid did a fine job of decreasing the amount of reflux, it had the unintentional side-effect of giving Landon the worst gas of his life. The night after we gave him his first dose, he shot awake in the middle of the night and started screaming bloody murder. We had no idea what the problem was but, suspecting gas, I attempted to vent him through his feeding port. The amount of air we were able to release was mind boggling. Over 200 ml, more than the volume of 3 of our largest syringes, was pulled out of his stomach before we saw the first sign of formula. He continued to burp and fart large volumes of gas for the next couple hours even after we pulled out that much air. It took several hours for him to pass enough gas to fall back to sleep. This has been a recurring problem for several nights and we have discontinued the Prevacid due to the side effect. I think the biggest problem was that the Prevacid comes in tablet form and we have to crush it and dissolve it to administer to him. I am hypothesizing that the granules are creating gas as they dissolve and that we would have better luck with a liquid formulation.

We had a very scary moment on Saturday while Karen was out picking up a refill of Goat's medicine. I was studying while he laid on the couch next to me and we were having a relaxing afternoon. Due to the length of his soft palette and poor control of the muscles that control his vocal chords, Landon is naturally a noisy breather when he is awake. He snorts, squeaks, and rattles most of the time. That afternoon he was being noisy as usual. At some point I noticed that he had gone quiet and looked over to see if he had fallen asleep. Instead, I saw him with his mouth open, full of spit-up formula, gurgling bubbles through it. I immediately grabbed him and rolled him sternal and head lowered over my arm and let the formula spill out. He wasn't breathing even with a clear mouth so I started vigorously patting his back to get any formula out of his lungs. I watched the clock closely to try and gauge how long I'd been patting before I ran to get the suction machine. Formula continued to run out of his mouth and I was really beginning to panic. Finally, after over a minute of having him flipped over and pounding on his back, Landon took a big gasping breath. The whole experience was very scary, particularly that he was sitting right next to me and still didn't make any noise or thrashing to indicate that he couldn't breathe and was choking. Using my stethoscope, I was able to hear the his lungs still had a bit of fluid in them but sounded much clearer and clean enough for him to be able to breathe.

All in all, Landon is pretty stable but we are definitely starting to realize the dangers associated with Landon's growing body. Hopefully we are prepared for these challenges. On a lighter note, we have lots of fish left over from the fish-off here in Kansas and would like whoever wants to join us for a fish dinner after church on Sunday, September 29. It will be at my parents house at 12:30. The address is 1014 S 286 Street Elmwood, NE. If you have any questions feel free to shoot me an email or comment and I will get back to you eventually. Thank you for all your prayers.

Saturday, September 7, 2013

Settling into our routine

First off, I have to apologize for the long gap between blogs. As the saying goes, no news is good news. The last two weeks have been blissfully uneventful and we've been able to settle into a bit of a routine. As school picks back up for me, I have been able to develop a consistent study routine that still gives me time to hold and enjoy some stress relief with Little Goat. Karen has started working again and I know she and her coworkers are relishing the chance to reconnect. She has been so dedicated to caring for Landon for four months and she deserves this chance to get out the house and talk with adults instead of a baby all day long.

We did have one frightening moment late on Wednesday night when I was putting Landon to bed. Landon had been a little gassy so it took quite a while to rock him to bed after his 1 am feeding started. Finally, at just about 2:15, he was in a deep enough sleep to set him in his crib. However, the tube from his feeding bag caught between myself and the crib and actually pulled the g-button from his stomach with a loud "POP". Landon cried out in surprise but afterwards seemed to relax and I'm relatively sure he wasn't in any pain. It was very strange to see a hole in his tummy leading straight into his stomach and the situation was actually urgent. We had been warned that, should the plug come out, we had less than an hour to get to the emergency room to have it reinserted. Any wait longer than that dramatically increases his risk of infection as well as the fistula starting to heal closed, which would require surgical correction.

We quickly arrived at the Mercy emergency room but were disappointed by how long it took to see a doctor. We even called ahead and warned them of our arrival but it took over 45 minutes for a doctor to see us and reinsert the plug. I understand that they are busy but the process is relatively simple but a prolonged wait would result in another surgical procedure. As it stands, if the plug should ever be pulled out again, I will replace it myself. After watching them closely, the simplicity of procedure surprised me. The balloon holding the plug in place is deflated through a valve with a syringe. The plug is rinsed with a sterilizing agent (chlorhexadine or isopropyl alcohol) then water and replaced. Finally the balloon is refilled and checked for placement. All in all, I am much more worried about the fistula healing closed while we wait to be seen than I am about following the correct reinsertion procedure. Many times I have been very pleased with the emergency services in Manhattan but that night we were both disappointed.

Finally I'd like to thank everyone that braved the 100+ degree heat to participate in the fishoff and fish-fry this past Saturday. We had a wonderful time and I hope you did too. We did have quite a bit of food remaining after the cookout and as such we will be hosting another fish-fry in Nebraska on the 28th of September for those who are interested in eating. We will also be fishing that day and anyone who wants is welcome to join us but won't be hosting a tournament with such short notice. We are finalizing a location right now but I will post on my facebook page and the blog as well when we have made a decision.Thank you for all your support and love, God Bless.

Thursday, August 29, 2013

Dr. Knopp follow-up

Life is quickly becoming hectic again as that time of year roles around again. I began my third year of veterinary school on Monday, a long awaited but stressful milestone. I have the opportunity to do live animal surgeries for the first time which is another exciting but daunting opportunity. Karen went back to work for the first time since Landon's birth Monday as well. Her employer was very kind and patient to wait all summer for her to come back. She has slightly reduced hours (1-6 pm Mon-Fri and every other Sat) but the extra income is a great relief and I know working can be a great stress reliever and can relieve a bit of the cabin fever she's had staying home with the baby 24/7 for 4 1/2 months.

Karen was able to go back to work because we have been approved for a registered nurse to come into our home from 10:30 to 6:30 during the week to help care for Landon. Due to the severity of his condition, the state approved us for the maximum hours of in home care. Unfortunately, few babysitters or daycare facilities have the training necessary to care for Landon if he would aspirate or seize while he was in their care. It is very comforting to have someone specifically trained for these circumstances caring for our Little Goat while we are away.

Yesterday was Landon's second visit with his primary care physician, Dr. Knopp. During his examination, Karen notified the doctor of some granulation tissue (AKA proud flesh or granuloma) we've noticed developing around the healing edges of his gastric feeding fistula (hole in his skin and stomach that the feeding tube passes through). Dr. Knopp agreed that it wasn't a major concern but that it was better to remove it than to leave it in place. He used a cauterizer to remove the growth, essentially burning it off with an electric current. The spot where the tissue was removed has been a little sore for Landon but we didn't want the granuloma to grow large enough to displace or put pressure on his gastric tube.

While at the doctor, Landon was measured to assess his growth and development. Landon is 24.5 inches long, 12 1/2 pounds, and still has a cranial circumference of 32.5 cm. For his age, Landon is in the .001 percentile for cranial circumference (which is not a surprise), the 8th percentile group for weight, and the 25th percentile for length. We have been consciously keeping Landon's weight down due to doctor concerns that he could rapidly become overweight due to his reduced activity level. However, these measurements seem to indicate that Landon's metabolism is working at a sub-par level and haven't been providing him adequate calories for growth. This could be due to poor innervation of his intestines or some other undocumented problem. We have increased the amount of food he is getting in hopes that if we give more calories than he needs, his body will be able to collect enough to average out his insufficiency. For example, if his body is only working at 70% efficiency, if we give him 121% of his daily caloric needs he should collect 70% of that which would be our approximate daily required calories target (100%). It takes a little bit of guess work and good luck to hit the right number but we should get there eventually.

The fishoff is quickly approaching and we would really love to have anyone interested come out and join us this Saturday. I know it's going to be scorching hot but we will have cold water and lemonade available and good shade. Even if you can only join us for the meal we would love to see a huge crowd. The tournament registration will start at 7 am but we will be accepting new registrants all day. The final weigh in will be at 4 pm sharp with prizes immediately after and food being served at 4:30 until the last person leaves. Thank you again for all your support and love and have a blessed holiday weekend.

"Healing is impossible in loneliness; it is the opposite of loneliness. Conviviality is healing. To be healed we must come with all the other creatures to the feast of Creation." - Wendell Berry

Wednesday, August 21, 2013

Chicago Trip pt 2 and Fishoff Info

Following Landon's appointment Tuesday, we were left to wait in Chicago until our scheduled train home on Friday afternoon. We had initially planned on running more tests at Comer but Dr. Marcuccilli was kind enough to differ our testing to Kansas hospitals and take the lead on our case from afar. This allows some of our medical expenses to be absorbed by KanCare while he, very generously, will review the test results in Chicago at no expense to us. So instead of tests for Wednesday and Thursday, we turned into tourists.

As I mentioned in my last post, I can't emphasize enough how terrific Ronald McDonald House was to us during our entire stay. We asked if they had any suggestions for activities to do in the area and they went above and beyond. They were able to get us tickets to Shedd aquarium for Thursday and we really enjoyed our visit there. The fish were beautiful and it was a nice break to do something outside the doctor's office with the baby. We frequently get caught up running from appointment to appointment and don't make time to do enjoyable things together. Landon's favorite part of our day off was the water taxi ride. He really loves the wind in his face and the sound of water.

We enjoyed eating at new restaurants, seeing the sights, and making a plan for discovering more about Landon's condition. Most of all, we enjoyed spending quality time together and relaxing for a while. The beauty of this trip was that what we thought would be a litany of hospital tests and procedures turned into our first family 'vacation'. It really is important to step away from your problems occasionally and give yourself a moment to get perspective.

Our train ride home was uneventful in the best way. Landon slept wonderfully the whole way and feeding him through his g-button was much easier than a nasogastric tube would have been in that situation. We arrived back in Omaha late Friday night. After a trip to the Cass County Fair Saturday, we were back home Sunday. During the next few days, I called Children's Mercy in Kansas City to schedule an EEG, spinal tap, and blood tests for Landon. We are still awaiting a schedule for these procedures but we should have an appointment soon.

I would also like to let everyone know that our Landon Shrader Family Fishoff is officially finalized and we have a set date and location. On August 31 we will have a fishing tournament at Spillway State Park in Manhattan, KS at picnic area 22. Registration begins at 7 am and runs until 9 am but there will be someone there to take new registrants all day. We will be accepting fish for weigh in until 4 pm that day. The Manhattan community has been very generous and through donations we have been able to acquire over $500 dollars in prizes. There will be prizes for first and second place in 5 divisions: Men over 18 & under 18, Women over 18 & under 18, and child/parent team. Everyone who participates will get a meal ticket for a fish fry and hotdog feed at 4:30 after the prize giveaway. Registration is $10 for participants over 12 years old and 12 and under participate for free! If anyone has any questions about participating just let me know either by commenting or emailing me at tshrader@vet.k-state.edu.

Thank you all for your prayers and thoughts. We are lucky to live in the community we do with the friends and family we have. Your support has been incredible and we look forward to hosting this event as a way to celebrate the time we've had with Landon and the blessings of having a terrific community around us.

Wednesday, August 14, 2013

Our Chicago Trip Pt. 1

I apologize for how long it has taken to give an update on our trip to Chicago. We had such a busy week and weekend that I wasn't able to finish my thoughts and the last two days have been so exhausting that we have been going to bed very early. I would also like to wish my dad a happy birthday before I get too far into the message. We rarely get the chance to sit down and celebrate birthdays and holidays the way we should but I would at least like to thank him for everything he's done for me, from day 1 to now.

We left for Chicago from the Omaha Amtrak station shortly after 5 on Monday morning. The train was really our only option as Landon was not cleared to fly and he can only tolerate the car seat for a few hours at a time. We were pleasantly surprised by the ride. We were given a sleeping car so that we had access to an outlet for Landon's feeding equipment and were very comfortable for the duration of the trip, both to and from. Landon loved the train's movement and sound as well. He either slept or was happily awake for the entirety of our time on the train and never fussed once.

When we arrived in Chicago Monday afternoon, we took a cab to the Ronald McDonald house near Comer Children's Hospital. The Ronald McDonald House is truly an incredible charity organization. They provided us a place to stay, meals, and support from other parents of children with serious health complications and disabilities. They offered a shuttle to the hospital and really facilitated our doctor visit in several ways. It gave real perspective to the impact of dropping a few coins into the bucket after a burger and fries.

Our appointment with Dr. Marcuccilli was at 10:00 on Tuesday morning and he was very generous to volunteer his services and so much time to visit with us. We were at the hospital for about 2 hours and learned an incredible amount, even without any further testing. Due to the failure of some of Landon's other doctors in faxing over his history, Dr. Marcuccilli's knowledge of Goat's condition was incomplete. He spoke with us about the results of all our completed testing and then began evaluating for himself.

The most significant discovery of his evaluation was that Landon has areflexia, or no reflexes. Tapping his knees and elbows with the mallet elicits no response and running a finger down his spine fails to make him draw his limbs in. While we have been frustrated by his lack of a gag reflex, that was the only reflex that the doctor was actually able to elicit, although it was reduced. While previous doctors have found this, none of them included that information in the history the forwarded to Dr. Marcuccilli and it significantly altered our plan of action and our expectations. First, we found that one of the diagnostic tests Landon was supposed to have run could not be completed that day due to his lack of reflexes as the results would be inconclusive. However, while that test would be inconclusive, the combined components of Landon's condition and years of experience allowed him to narrow the list of possible disorders at play from over 200 to slightly more than a dozen.

Our biggest challenge thus far has been the enigmatic nature of Landon's condition. Dr. Marcuccilli was unsurprised by our difficulty. He believes that Landon has a unique presentation of a rare, but known, disease. Although he is unable to determine which condition Landon has at this time, he was able to compile a list of tests to systematically rule out the remaining possible diseases until we have a more definitive answer. The list includes blood tests, spinal taps, eeg's,, urine tests, and possibly a muscle biopsy based on the other results. We are fortunate to be able to run the bulk of these tests at Children's Mercy in Kansas City later this month.

An interesting development of our visit was a discussion of Landon's poor response to phenobarb. While he is still on the drug as part of a seizure control regimen, Phenobarbital on its own does not control Landon's episodes. This qualifies him for a study that will decode his entire genome to look for abnormalities. The test can not but run for three months and results normally take 6 months to a year but genomic sequencing is normally prohibitively expensive and not covered by insurance so this is a great opportunity to have it done for free. The failure of some of these other tests to bear results would mean that this gene sequencing could potentially give us significant insight into Landon's disorder.

From this point forward, Dr. Marcuccilli will be leading Landon's case by ordering tests through our doctors here in Kansas and reading the results himself in Chicago. He is very engaged in Landon's case and interested in his well-being which gives Karen and I comfort moving forward. The prognoses of the various possible disorders affecting Landon range widely but it was nice to gather some context. We left the appointment pleased to have a sense of direction and encouraged by Dr. Marcuccilli's genuine interest.

I will detail the next three days of our trip in a follow-up blog tomorrow or the next day but the volume of information is just too bulky for one post. This concludes the pt.1 of my Chicago trip recap.

Saturday, August 3, 2013

First Meeting with Primary Care Physician

Landon had his first appointment with his primary care physician on Wednesday and Karen and I are very pleased. Dr. Knopp agreed to take Landon after a representative from Infant and Toddler Services of Kansas contacted him and told him of our situation. We were both a little worried that he would feel coerced into seeing Landon and might not be very engaged with his case but the truth was quite the opposite. I was unable to attend the appointment but Karen said he was thoughtful, considerate, and very interested in being Landon's physician.

While at his appointment Landon was updated on his vaccinations and took them like the little champ he is. After the vaccines and an exam, Dr. Knopp surprised Karen by expressing real concern with our emotional and psychological well-being. He wanted to make sure we were comfortable and were pursuing counseling if we needed it. He was also proactive about contacting Landon's other doctors and making sure that everyone was on the same page as far as medications, dosages, and test schedules. We are very pleased with Dr. Knopp and after a long search it is a nice feeling to find someone we are comfortable with.

The big news this week is that our little family will be traveling to Chicago to meet with Dr. Marcuccilli of the University of Chicago Medical Center. Dr. Marcuccilli specializes in brain malformations that happen during development. The University of Chicago is also where Landon’s blood will be part of a genetics panel to assess whether or not Landon’s condition is something that could be inherited by any future children Karen and I might have. Hopefully this trip will give us some answers we have been searching for since Little Goat’s birth.

We will leave very early Monday morning from Omaha on the Amtrak train to Chicago. Landon does not do well enough in his car seat for us to be able to drive and he was not cleared by his doctors to fly so the train it is. We will arrive around 2 on Monday afternoon and Landon’s appointment is at 10:00 the next morning. Based on the result of his exam and any tests he chooses to run, Dr. Marcuccilli may choose to run more tests on Thursday. We will take the train home Friday afternoon and should be back in Kansas soon after.

This is Karen’s first trip to Chicago and I wish it could be under more relaxed circumstances. I have really enjoyed each of my trips to the city and I think she would as well if we had time to be tourists. Unfortunately, we most likely face two long days in hospital waiting rooms out of our three day trip. The hospital is near Lake Michigan so maybe we can make a trip over on Wednesday while we await test results and enjoy some time outside with Landon.

I am anticipating quite a bit of news after our trip and hopefully I can get a blog written on the 9 hour train ride home Friday. Landon has been doing extremely well since his gastric feeding tube was put in and there has been little to ‘write home about’ so to speak. As much as we enjoy the little joys of more restful nights and nicely cleared up diaper rashes, they don’t make for very riveting reading. Hopefully this trip will be a catalyst for some big news in the near future.

“…Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” – Jesus, Matthew 17:20

Friday, July 26, 2013

G-Button Surgery

Tuesday morning at 6 am, Landon had his last food for 14 1/2 hours.We arrived at Children's Hospital in Omaha at 10 and, after some preliminary bloodwork and exams, Goat's surgery began at noon. Karen and I were incredibly impressed by how good a sport Landon was all morning. He only fussed for about 30 minutes when his 9 am feeding was skipped and was otherwise content all morning. Even after his surgery in the afternoon, Landon rarely cried as long as Karen or I was holding him. I think I would have probably fussed more after that procedure.

During the 30 minute procedure, a surgeon inserted a laparoscope through a small incision in Landon's belly button. Using the laparoscope as a guide, he then sutured the stomach and body wall together. When he was confident there was a good seal, he cut a fistula (hole into an organ) into Landon's stomach and inserted the gastric plug we feed him through. We were told that he was very fussy as soon as he awoke from surgery but as soon as Karen started talking to him he fell back into a deep sleep. Landon cried periodically after the procedure but I was surprised by how happy he seemed, especially because he was only given children's tylenol for pain control.

We slept in the hospital Tuesday night and were pleasantly surprised on Wednesday morning to find out we would be going home in the early afternoon instead of after 6 as we originally planned. After a quick lunch and a few goodbyes we were headed back to Kansas with a happy, tube-free baby! Almost immediately after the NG tube was gone we noticed Landon smiling. We rarely saw him smile before the operation and attributed them to gas. He now gets big smiles after burps, when he hears Karen's voice, and just spontaneously when he's happy. Each little grin brightens our day and we can tell he is obviously happier now. His face has already started clearing up from the rashes that break out under his tape and he doesn't whistle when he breathes through his nose anymore.

The site where the g-tube enters his stomach is still very sensitive and we have to be careful when changing his clothes and washing him. He is on minimal pain killers to avoid any interactions with his anticonvulsants. We are being very careful to keep the area clean to avoid any risk of infection and we have tinkered with his diet to limit his gassiness as much as possible. Just the last two nights we have noticed him sleeping through the night better and swallowing spit-up instead of choking on it. Overall, the g-button has quickly been a bit improvement in Landon's life and I think that as the surgery site heals, he will be happier each day.

Our next big appointment is on the 31st of July when Landon has his first appointment with his primary care physician. We had a very difficult time finding a doctor that would take him in Manhattan but after asking for help from Infant and Toddler Services of Kansas, they were able to convince a doctor in town to see him. He will see Dr. Knopp for his basic vaccinations and in case of a baby emergency, such as a fever, rash, etc, and we will keep our specialists in Lincoln and Topeka for more specific care. We are also scheduled for an appointment at the University of Chicago with the pediatric neurologist there who specializes in brain development. He has been wanting to see Landon for a couple months and it finally works with our schedule to drive up for a visit.

The outpouring of love and support from family, friends, and acquaintances has been incredible. Karen and I each had dozens of texts on the day of Landon's operation and our family members had many more, checking in and following up. We are blessed daily and are thankful for the hard work and intelligence of the doctors and nurses that have kept Landon healthy. We are thankful to live in a time and place where we have access to the science and technology required to test Little Goat and improve his life with the operations and medications we need. We would like to encourage anyone who is having their own challenges to pray and to be open to accepting help. It is not in human nature to go it alone and having a hand to support you on the way is such a comfort and a real necessity.

"It is only in our minds that we are separate from the rest of the world." - Gay Luce. Take comfort in know that you're never alone, at the best of times and at the worst.

Wednesday, July 17, 2013

Neurology Consultation #2

Landon had his second neurology consultation yesterday. I know many of you have been anxious to hear the update from the visit but unfortunately we did not get much good news. Landon's head has not grown significantly and Dr. Katz thinks that the development we saw in our meeting in Omaha may have been due to variation in measurement techniques. There has been minimal change in Landon's reflexes, although he may have slightly stronger reactions to some stimuli than originally thought because he was more awake during this visit than the last. That being said, he is still quite deficient in his reflexes, particularly those that deal with the feeling in his feet and toes.

The good news from our meeting is that Landon isn't getting worse. The arrhythmia he was diagnosed with is common and doesn't appear to getting worse. He hasn't had a seizure since May 20th, which is a truly great blessing. His seizure activity is actually stable enough that we are beginning to wean him off of the phenobarbital, the first anticonvulsant he was on. Phenobarb can make people drowsy and is hard on the liver so we are happy to be reducing his dose. It also would be nice to only have one medication to administer so that we can minimize any side-effects from drug interactions. Landon is also on Levitiracetam (aka Keppra).

Dr. Katz spent the majority of our meeting talking about how we were doing psychologically and emotionally. He suggested a book to us called "A Difference in the Family" about how to communicate our feelings and needs to our family and friends and about what types of feelings are normal when you have a child with a disability as severe as Landon's. We haven't had the opportunity to get a copy yet but I'm looking forward to reading it. He said that although it was written in the seventies, he has been suggesting it for 30 years and hasn't read anything better yet. He also suggested that we take time to discuss what we would do in a worst case scenario should Landon encounter a serious health complication. Goat is at a very high risk for some life-threatening complications and so we need to be prepared for these possibilities.

Recently we have been trying soy formula with Landon instead of the sensitive stomach formula he was on and it seems to be helping with his gassy spells, particularly early in the morning after his 5 am feeding.  Hopefully he will eventually stay asleep through that time of day. I think if we could get him to sleep right after his 1 am and 5 am feedings we would have a better chance of straightening out his days and nights. As it is, he still likes to be up in the night and prefers to sleep during the day.

Karen and I would like to thank everyone who has been so kind and expressed their concern about our well being, mentally, physically, emotionally, and spiritually. Landon has been a challenge in ways I never could have understood but he has never been a burden. Rather, he gives us inspiration to work harder, both in our daily activities and on ourselves as individuals. We look forward to each day and, while we are certainly tired sometimes, we try to keep energetic and enthusiastic.

We are very anxious for Landon's operation on the 23rd and getting to see our baby boy without tape and a tube for the rest of his life. That is the current milestone we are striving for and we are planning for lots of pictures once you can see his face. Bless you all and if you have any questions, please comment or message on the facebook page and we will try to answer you directly.

Thursday, July 11, 2013

Landon Shrader Family Fish-Off

Landon, Karen and I have been the focus of incredible generosity over the past three months from numerous people and organizations. We could never have anticipated so many donations, nor do we wish to put financial strain on our selfless communities by asking for continued charitable giving. Instead, we have been considering organizing an annual event in Landon's name to encourage parents to enjoy each day and live in the moment with their kids. It would be a terrific side benefit if we are able to raise a few funds to help cover Landon's medical supplies as well.

 When we considered what type of event we wanted to host, we set a few criteria we wanted it to meet. First, we wanted to make sure it involved parents and kids having fun together. We also didn't want to exclude any individuals without children or kids that wanted to participate without a parent. We also wanted to encourage families to get outside an enjoy nature. As I've mentioned in past posts, Landon really loves the breeze and we try to take him out as much as possible, as the the sun and heat permits.

With those goals in mind, Karen and I have brainstormed for quite some time before landing on an idea we really like. While Karen's parents and sister visited this past weekend, we went down to the river and fished for a few hours. We had a chance to chat, laugh, relax, and celebrate together. It was the spark we needed and today after some discussion we developed an event I think fits perfectly into our event rubric.

We have tentatively named our event the Landon Shrader Family Fish-Off and would be hosted at a lake or river near Manhattan or Elmwood or even both if there was enough interest. It would be a fishing tournament of sorts with prizes, medals, trophies, or some other form of recognition for the biggest fish caught by age and gender (boys under 13, 13-21, 21-65, 65+ and the same for girls). We would like to have a special prize for the biggest combined weight by a parent and child team to encourage moms and dads to come out with their kids. The idea is only a few hours old and just a concept but we really like what we've got so far. The details of location, registration cost, prizes, etc are all yet to be determined so if you have any ideas I would be more than happy to hear them.

As far as Landon's health, the past 10 days have been highly uneventful, our favorite kind of days. We are anxiously anticipating his appointments on the 15th and 23rd. We're optimistic that we will receive good news at both. Thank you for all the prayers and thoughts we receive every day. We definitely feel showered in blessings and it has made us for hopeful for the future. Little Goat gives us new reasons to smile every day and we are blessed by every extra moment we get to spend with him.

Tuesday, July 2, 2013

Ocean Sounds and Full Calendars

What a crazy week and wild month to come. After a lot of hand wringing and anxiety, we finally had our doctor's appointment to evaluate Landon for a g-button last Monday. Landon was an incredibly good sport through a very difficult day for him. We have kept a very strict feeding schedule for Landon, feeding him every 4 hours (1,5,9,1,5,9) for the last two months. We are rarely vary from the schedule more than ten minutes one way or the other so when Monday required us to withhold food after his 9 am feeding until after his appointment, we anticipated a very fussy baby. As we expected, at about 1:15 Landon was very fussy, crying for his formula and his delayed feeding. To our surprise though, at around 1:45 he began to calm down and actually fell back asleep.

Shortly after 2, Landon's upper GI series began. A small amount of barium contrast was pushed down his feeding tube and he was strapped to a rotating plank to allow doctors to observe different angles of his stomach and intestines. We were finally able to feed him after the test was completed, at around 3 pm. Even though his feeding had been delayed by two hours, Landon had only fussed for a few minutes and even when they were spinning him in circles to observe his intestines, he stayed calm and just looked around. The results of the test were promising. Landon's gastrointestinal tract (GI) is normal and will accommodate a g-button well. Next, we needed a consultation with a surgeon to evaluate his lifestyle and need for the operation.

Before the consultation, we met with the surgeon's nurses to take some measurements. We found out that Landon has grown to 10 lbs, 1 oz and is 22.75 inches long. His physical development has really been exceptional since coming home from the NICU. Next, we received the best news of the day and it was truly unexpected. Landon's head has grown! His cranial circumference has increased by a full centimeter, to 33.5 cm. This measurement is the best was to evaluate for brain growth, something we were told not to expect. Even though it was only a centimeter, we are ecstatic to see some change in this measurement.  For comparison, the average baby of Landon's age has a circumference of 40 cm and even the bottom 5 percent is at 37 cm. In fact, Landon's head is still only the size of a newborn in the 10-12th percentile in size. But you have to start somewhere.

The consultation with Landon's surgeon went well and he is scheduled to have a g-button put in on the 23rd of July. It will be wonderful to have the irritating tape and tube off of his face and out of his nose. The surgery is relatively simple and very common. The surgeon will go in laproscopically and perform a gastropexy (he will suture the stomach to Landon's body wall). Then he will form a port into which he, and eventually can and I, can insert a feeding tube. We have heard from a few people that suck training usually improves after the g-button is in so we are looking forward to that as well.

I worked from 8 to 6 from Tuesday through Friday after we got back from our appointments in Nebraska so Karen had to spend quite a bit of time at home alone with the baby. On Wednesday, she decided to go on a short trip to Topeka to visit our friend Jess and take Landon to the pool for the first time. In Jess' apartment complex, there is a small, shaded pool that Karen and Jess held Landon in so that he could feel the water. He loved it! Karen said that he was wide eyed and happy while he was in the water, which comes as somewhat of a surprise because of how he cries during bathtime.

Goat seems to love everything about being outside, particularly the wind. If he ever gets fussy in the car, all we have to do is roll down the windows and he turns happy as a clam. He really enjoys the bright colors of grass and flowers in sunlight as well. We started taking him out to the back patio when he was fussy earlier this year but we've had to stop in the past week because the mosquitoes are so bad around our house. He got one bug bite on his forehead this week and was, understandably, fussy for the next couple days. We gave him antihistamines but there is only so much you can do. He even ended up scratching himself just below the eye trying to reach the spot on his forehead.

Given how calm he is outside, we switched out the music we play for him at night for nature sounds. Apparently that was a golden moment in our critical thinking and we hit the jackpot with ocean sounds. Our crying at night has been dramatically reduced and when he does cry, he seems to go back to sleep much easier. Apparently we need to move to the beach.

On Friday evening, our little family drove up to Fairbury to visit my Grandpa Meyer. This was Grandpa's first chance to meet and hold Landon. My uncle and aunt Jeff and Beverly came to visit as well, along with my cousin Sara, her husband CJ, and my parents drove down from Elmwood. It was nice to have a chance to catch up with everyone and really wonderful for them to meet and hold the little man. We have been blessed to have such wonderful families that support us in everything we do and it is a treat to have time for them to hold Landon.

Mikaela, Brandon, Sophie, and Mocha (my sister, brother-in-law, niece, and their puppy) drove down from Elmwood on Saturday to spend the night. Mikaela, Karen, and the babies relaxed in the back yard while Brandon and I fished in the pond behind our house. It was really nice to just get away from it all and let the babies spend some time together. It was over the last couple days that Landon's awful diaper rash has finally resolved and this makes diaper changes a less traumatic event. All in all, we have had a truly wonderful week.

Landon has appointments left and right this month but the two biggest are his neurology consultation on the 15th of July in Topeka and his surgery on the 23rd in Omaha. It will be exciting to hear whether or not he has shown any neurologic improvement, particularly with his peripheral neuropathy that prevents him from having very much sensation in his feet and legs. Karen and I have thought we've seen improvement but it's hard to tell and will be nice to have a more objective evaluation. We also have a meeting with a nursing association that might be able to come into our home and care for Landon a few hours a day to let Karen run errands, clean the house, take a nap, or even go back to work if she decided to. We haven't had much opportunity to talk about it yet but it should be an interesting meeting.

"There is nothing that wastes the body like worry, and one who has any faith in God should be ashamed to worry about anything whatsoever." - Mahatma Gandhi

Monday, June 24, 2013

Handling the Tough Days Pt. 2

This past week has been the busiest for Karen and me since my finals week one month ago. My externship at Blue Hills Animal Hospital in Manhattan has turned into a summer job and I’ve been working full time. Spending 8-10 hours a day at work and then caring for Little Goat at night certainly isn’t easy but it has been very fulfilling. It’s great to be building my veterinary experience but I know that the circumstances put pressure on Karen to care for Landon by herself during the day. His bacterial diaper rash has persisted and, while it is improving, he gets very fussy every time he fills his diaper. As it continues to heal I’m sure he will have better days and nights but right now, the rash creates a challenge in getting to, and staying asleep.

Landon has a busy day planned for tomorrow. In the afternoon, we are scheduled to meet with a surgeon at 2 tomorrow to check whether or not Landon is eligible for a G-button. Our genetic pediatric specialist has encouraged us that he sees no reason why Landon should not qualify for the procedure. Unfortunately, the upper GI exam that is needed for Landon to qualify for the G-button requires him to be fasted for 4 hours before the procedure. That means that, by the end of the procedure, Little Goat will have gone around 6 hours without food. That is a long time for such a little boy and I am anticipating a grumpy baby tomorrow afternoon and evening.

The G-button addition is unfortunate but we are trying to do what is best for Landon. The NG tube requires tape to his face that causes inflamed and dry skin and the tube in his nose and throat causes visible discomfort. We are told that the procedure will also reduce the risk of aspiration (accidental inhalation of formula) and that most babies with a g-button thrive better than those with NG tubes. As Landon has gotten stronger and is awake for a greater part of the day, we have noticed that he pulls his tube out more and more often. He tends to rub at the tape and we have to change it out every couple days. Every 7 days we switch the tube to the other nostril. This process has gotten easier for us but it is always uncomfortable for Landon, particularly if he is already fussy or hungry. We are hopeful that the different feeding method will alleviate some of these irritants.

Today was one of the days when we switched the tube from one nostril to the other. We removed the tube from his left side immediately after his 1 pm feeding and waited until shortly after 4 to reinsert it for his 5 o’clock feeding. Just before we put the tube in, Karen held Landon and observed his face for a while. He has thin red lines on both sides from inflammation from the tube and the surrounding skin is pink due to irritation from the tape. The skin on both his cheeks is dry because we can’t reach it to put on lotion for a week at a time. And despite the signs of pain, he looked peaceful and beautiful. It’s a shame to have half your little boy’s face covered every day.

I lubricated the end of the tube and reinserted it quickly and easily so that he only fussed and sneezed for a couple minutes before falling back asleep. I turned to Karen and expected her to be happy that the process seemed only mildly uncomfortable for him. I was surprised to see her frowning, lower lip out and moist in the eyes. When I asked why she just said, “He’s getting used to it. I don’t want him to be used to that.” It’s moments like that when our hearts break just a little and we remember how desperately we need all the love and support that has lifted us up since Landon was diagnosed with his condition.

Such is the challenge of loving Landon. We get to see all of his tiny triumphs and cherish the lessons we can learn from him but we also must face times each day of the lowest lows, where you as yourself “How can I keep doing this?” The only answer I’ve found is to live each day with prayer, a willingness to ask for help or support, an open heart, and the knowledge that our legacy is not about being perfect but rather about touching other people’s lives in a positive manner. And for that reason I write the blog, so that Landon’s legacy is not only for Karen and I but for as many people as will read it. If the lessons we learn from this experience can help even one other person stay strong through their own trials or encourage someone to pray for and reach out to another in need, then I consider this message a success. Please know that we thank God for each of you reading this blog and supporting those who need love, including our little family.

“Where there is love, there is life.” – Mahatma Gandhi

Sunday, June 16, 2013

Diaper Rash Solved

As I’ve mentioned before, Landon has had a very sore diaper rash for almost two weeks now. Even with the most diligent care, we could not get the rash to resolve. While eating dinner with my parents for Father’s Day, my mom suggested we call the pediatrician to take a look at it. I didn’t expect Dr. Schmidt to answer, let alone make time to see Landon but he called us right back and invited us to the rental home he was working on to take a look. After a quick check he diagnosed an infection under the skin. He was not surprised to hear that our best efforts were unable to heal Landon’s sore bottom. Because the infection is under the skin, none of the topical antibiotics, antifungals, drying powders, or zinc lotions had any effect. The oral antibiotics Goat is on now should clear the infection up in the next week.

Dr. Schmidt’s excellent standard of care brings emphasis to the struggle we have faced finding a pediatrician in Manhattan. With his policy under Karen maxed out, his secondary insurance is through KanCare, a program that is part of Kansas Medicaid. We have called almost two dozen pediatricians in the Manhattan area and have been repeatedly turned away, either due to his current insurance provider or because of the complications associated with his condition. I understand that their position is difficult but we are still frustrated that we have to drive two hours to take Landon to the doctor. We are optimistic that we will find a doctor in Manhattan that will take him as a patient eventually but we would definitely prefer to find one sooner rather than later.

As this is my first Father’s day, I’d like to thank my own dad for all the lessons he has taught me and for being my role model for what a father should be. I have been blessed to have such incredible parents and I hope I can be as good a dad to Landon and any future children as my dad was too me. I’d also like to thank my father-in-law Jim for raising the incredible daughter I call my wife. Both of our parents have already proven that they are incredible grandparents as well through our nieces and nephews (Kayden, Jamison, and Sophie). Everyone reading this blog has a dad or father figure that helped guide and shape them into the person they are today. Don’t forget to call that person and thank them for their time and influence in your life.

One of the many surprises we have discovered on this journey is how many other people and families have dealt with the loss of a child. While the circumstances are always different, it seems that the memory of the child who passes always seems to fade with time, especially outside the family. I would like to encourage all those parents who have lost a child to share their story and let everyone know about their blessing and loss. Write it on facebook, leave it in the comments, share with friends and neighbors. Although Landon is still with us, we have been prepared for him to leave us too soon. We want everyone that has been in our situation to know that you are not alone and there is support out there if you want it.