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

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