Friday, May 31, 2013

Back in Kansas

After one and a half weeks at my parents home, Karen, Landon, and I drove back to Manhattan so that I could complete my small animal externship requirement at Blue Hills Animal Hospital. I'm anxious to begin Monday. Most of my previous experience is with large animals and this week long externship is a unique opportunity to get some hands on time with dogs and cats rather than cows and horses. This is my last externship requirement, after which I will have all of my non-class prerequisites met to enter my fourth year clinics.

Landon decided to have another fuss session last night, starting at around 11 o'clock at night. Finally, shortly after 2 AM, I caved. I left Landon with Karen, drove to Walmart, bought an electric swing, and ran home to assemble it. Karen and I have been trying to be as frugal as possible but by that point I considered the swing an absolute necessity. 20 minutes of fumbling with tiny screws and a bent allen wrench with my blurry 2 AM vision and we had a swing. It works like a charm. After a few minutes of top speed swinging he finally settled down and we dropped the swing to its lowest setting and let him snooze. That much swinging with my arms would probably give me tennis elbow but the blessing of an electric swing ushered him right to sleep and we had a quite rest of the night.

Being back in Kansas will be a good test for Karen and I to see if we are ready to handle Little Goat away from our family and friends for a while. We know that there is always someone right around the corner if we need help but this will be a good exercise in preparedness. We would like to be able to stay in our own home for as much time as possible because we won't have any other option come August and I want to be ready. There are definitely some bills, yard work, and housekeeping that we have gotten behind on while we were away and need to catch up on.

I want to dedicate a portion of the blog today to recognizing the individuals in my hometown. One of the joys, and frustrations sometimes, of living in a small town is that everyone knows you and what's going on in your life. Karen and I were stopped repeatedly by members of the community to tell us that they are praying for us and following our journey. It is impossible to describe how much this buoys our spirits to know that people are helping us bless Landon and he is, in turn, acting as a blessing in their lives. The saying goes that it takes a village to raise a child but we are starting to realize that sometimes it takes a child to raise a village to something more. The villages of Elmwood and Murdock have risen above the call and have been pillars of support for my little family. They are oases of faith, prayer, support, and love. I thank God for the blessing of these communities.

As I've mentioned several times, I think Gandhi is one of the greatest role models of all time. The generosity we have received reminded me of a story I read in a book about the liberation of India from Britain:

Gandhi was boarding a train one day with a number of companions and followers, when his shoe fell from his foot and disappeared in the gap between the train and platform. 
Unable to retrieve it, he took off his other shoe and threw it down by the first. 
Responding to the puzzlement of his fellow travelers, Gandhi explained that a poor person who finds a single shoe is no better off - what's really helpful is finding a pair. 


Wednesday, May 29, 2013

Karen's Birthday and our Anniversary

Again, apologies are necessary for my week long absence. We have been staying with my parents for the last week and a half and have not had access to the internet there. Blogger does not accommodate  mobile use so I have been unable to post. Little has happened since last week in Landon's world, which is a victory in itself. The new medication he is on has helped prevent seizures and he has gone 9 days since his last episode. As the seizures were the largest immediate concern to his health, we are pleased to see the number and severity of those episodes diminish.

The 20th of May was Karen and my's one year anniversary. As I detailed in my last post, the day was less than ideal for our little family. Karen spent the day driving to and from Topeka, hearing grave news about Landon, and away from me while I worked at my externship and picked up animals at the sale barn. We only saw each other for about 30 minutes the whole day, right before midnight. The wonderful thing about our marriage is that each day is a celebration of our love and so, while our anniversary is a fun milestone to observe, we don't need a special occasion to recognize each other. That being said, we do plan on having a night out together sometime when things settle down just a bit. Our dinner will certainly turn into a joint anniversary, Karen's birthday, and my birthday combination celebration. Karen's birthday is the 26th of May and mine is the 17th of June.

I wanted to mention the generosity of a group of young people in the Elmwood-Murdock community. Through the EMHS Future Business Leaders of America (FBLA) program, high schoolers came to the elementary school and helped them develop and operate a small business in the local community. The activity encourages the development of entrepreneurs and teaches important math, speaking, and organization skills. At the end of the year, when their small business shuts down, the elementary classes donate the funds they raised to a charity of their choice. Mrs. Kuhlman's 6th grade class surprised us by donating the money they raised selling flower seeds to Landon's medical expenses. Karen and I are not able to thank each student personally but I would like to send the group a heartfelt "Thank You!" from our whole family.

We would also like to thank everyone who has purchased a wristband. If you purchased a wristband and have not received it, my dad has them at Bits & Pieces in Elmwood or we will eventually get them mailed out or delivered. I apologize for how long it has taken to get them but we sold out our first batch and had to order more. We should have plenty now so if you would still like one, you can get them at dad's thrift and consignment store.

All of your help has been overwhelming. We will be able to pay off Landon's bills in Manhattan now and will be able to start making payments on his NICU expenses. While these are significant and make up the majority of his bill, it is a big step in the right direction. Karen and I are optimistic that she will be able to find work she can do from home as well. It is unfortunate that she had to leave her job at Pfeifley's Jewelers in Manhattan. Her employers and coworkers have become good friends and Karen loved her job but Landon requires 24 hour supervision. Karen has been generous enough to sacrifice her employment there to care for him so that I am able to continue my veterinary training and I am indebted to her for that.

We did reach one exciting milestone this week. Landon had his first haircut! Cindy Hovorka cut his hair at her shop in Elmwood. It was nice to have her involved with one of Landon's achievements because she is the mom of one of my close friends and was my "baseball mom" while I was growing up. Little Goat's hair was getting so long that his spit-up was getting in his little mullet so it was definitely time for a trim. We saved a few clippings in his memory book.

When we face a hardship, our loved ones often tell us, "Don't worry, there is a light at the end of the tunnel." They want to reassure us that, eventually, this trial shall pass and all will be well again. Normally they are right and all we need is a little patience and perseverance. However, there are rare instances, like in Landon's case, where this is no light at the end of the tunnel. Landon's trial will never be over and, when it is, we will have lost the greatest love of our life. Instead, Karen and I approach this as a journey. We thought we knew what the road would be like and what the surroundings would be but we were sent down a detour along the way. The road is rougher, the scenery is different, and our destination is unknown. What else can you do when everything is a mystery but enjoy the journey?

"Strength does not come from physical capacity. It comes from indomitable will." - Mahatma Gandhi

Wednesday, May 22, 2013

Neurology consultation

The past few days have been a whirlwind of activity for Landon with traveling and appointments. Monday morning, Karen and Jamee left from Elmwood for Topeka to take him to his neurology consult in Topeka with a pediatric neurology specialist. They picked up our friend Jess in Manhattan and took her along to help with translation of all the medical terminology. (Have I mentioned what great friends and family we have?) The appointment yielded some actual results, in contrast to many of our previous appointments. Dr. Katz found that Landon had fewer muscular reflexes during this meeting and a review of his imaging data showed no change in his brain's condition. An EEG showed that he was having subclinical seizures, which is a cause for concern and will require an additional medication for Landon each day.

The conclusions derived from the appointment are a step back for Landon. The lack of reflexes, and in fact a decrease in reflexes, is very grim. This could mean that Landon's condition is degenerative and is worsening with time. The subclinical seizures showed that Goat's phenobarb was not an adequate measure to control his abnormal functions and he will receive an additional anticonvulsant starting today. Dr. Katz has been transparent with us and let us know that Landon's condition is very serious and his prognosis has not improved and may have perhaps worsened. He will see Dr. Katz again in a month.

Landon had another appointment with the geneticist today and the news we received from the neurologist was reinforced. Landon had fewer reflexes and a review of his ultrasound scans showed a small brain from early on in development. Dr. Schmidt has prepared us for the worst and cautioned us that Landon may be worsening in condition as well. He discovered a heart murmur today that was not there a few weeks ago, a change that is concerning and may indicate that Landon's nervous system has indeed shown signs of degeneration. We are debating having an G-Button placed. The operation would make our lives easier but if Landon only has a short time left with us we would hate to put him through so much discomfort and a major surgery. No decision about Landon is easy at this point.

Through all of this, Karen and I are assured in the knowledge that this is not a punishment to us. It is not about us at all, but rather about being a blessing to a little boy that needs some extra help. Landon was going to be born someday, whether it was to Karen and I or someone else. We firmly believe that we have been prepared for and chosen for this task because we can be extraordinary parents to a little boy that needs extraordinary care. Each day we are striving to show compassion and love in our actions and making Landon's life as wonderful as it can possibly be.

"Man often becomes what he believes himself to be. If I keep on saying to myself that I cannot do a certain thing, it is possible that I may end by really becoming incapable of doing it. On the contrary, if I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have it at the beginning." - Mahatma Gandhi

Sunday, May 19, 2013

Aaaaand we're back

First off, I have to apologize for the extended hiatus. The last week has been absurdly busy and has maxed Karen and I out physically, mentally, and emotionally. To briefly recap, Landon cried most of the night Saturday and prevented much successful sleep. With Karen's emergency trip to the hospital on Sunday night, we spent another night with no sleep. I had a Toxicology final Monday morning, which went surprisingly well, followed by another evening and night of no sleep due to necessary systemic pathology studying for a Tuesday morning test that I was poorly prepared for. At 2:00 Tuesday afternoon I completed a make-up test for a radiology exam I had missed the day of Landon's emergency transfer to Topeka. That moment was probably the most tired I have been in my life. I actually fell asleep taking the exam once. For those counting, the end result was almost 80 hours with under six hours of sleep. It all caught up with me Tuesday afternoon and I finally had to stop and lay down.

I slept until nearly midnight Tuesday before I finally forced myself awake to study for my radiology final the next morning. Studying one month of notes in 9 hours is a testament to the elasticity of the human brain. When I made it back from the exam I was rested enough to take over for Karen for a few hours so that she was able to nap and catch up on sleep some. My busy schedule left Karen alone in caring for Landon which is no small task. Waking every three hours to feed, change diapers, and pump for Goat doesn't leave much time to care for yourself. Combined with her D and C on Monday afternoon for the bit of retained placenta, she was physically worn down by Wednesday afternoon as well.

By the time Karen woke up Wednesday it was my turn to sleep again before another all night marathon study for my Thursday morning clinical pathology test. We adapted our schedule to fit our madness for the Thursday and Friday. I slept in the afternoons after my tests while Karen cared for Landon and we switched so that I could study and watch Landon through the night and Karen was able to sleep. To call the completion of finals week a relief is a huge understatement. I'm sure we will feel the aftereffects of our mental marathon for a few days but we are back to a more normal schedule now and are recovering.

Landon was very accommodating for us during our wild week. He had a small seizure Monday afternoon and has been event free since. He has shown continued development in several areas, particularly his body strength and ability to maintain is vocal cords. His breathing is much last squeaky/raspy during the day and he is sleeping better at night. He still wakes up to cry every night at about two but his sessions have shortened progressively and he usually falls back asleep after half an hour or an hour of rocking. We still haven't discovered what wakes him up at the same time every night but our working theory is that he gets headaches. We will have to ask his pediatrician at his appointment Wednesday.

We ventured out with Landon to a farewell party with some vet students on Friday night. It's amazing how spending so much time with a group of people really makes them feel like family. We relaxed by the lake with poles in the water and chitchatted about our various plans for the summer. We will definitely miss our support group while they go to far-flung adventures in Europe, Africa, California, New England, and elsewhere but I'm sure the summer will fly by until we see them again in August. I know we are all anxious to get started on more hands-on classes, surgery in particular.

We left Saturday morning for my parent's house in Nebraska, where we will be staying for a large portion of the summer. I am lucky to have an externship with Dr. Gigstad, a large animal veterinarian in Syracuse, NE, so that I can still gain some experience this summer. The extra hands and eyes to help with Landon will be a nice change for Karen and I as well as for our families. This gives them a chance to finally spend some extended time with Little Goat and watch him grow and learn little skills all the time. We were ecstatic to get our dogs, Zeke and Charlie, back when we arrived back at my parent's house. Their constant affection and boundless energy is a wonderful thing to have around.

We are currently in Wahoo visiting Karen's family and celebrating Jamee's 20th birthday. We will head back to Elmwood tonight and set up the bedroom for an extended stay with my mom and dad.

Thank you all for your patience while we survived this week. The outflow of support has been incredible and I apologize if I caused any concern or worry with the blog hiatus. I will continue with daily updates from this point forward, barring any major time restrictions that may interfere with producing the page.

Much love to you all from the Shrader family

Tuesday, May 14, 2013

Hoping for some relaxation

What a long day. Karen was supposed to go into surgery this morning between 7 and 8 but her surgery was pushed back repeatedly due to other emergencies that came into the hospital. I eventually had to leave her to take my toxicology test and I fully anticipated her going into surgery while I was away. I felt awful for leaving her there but rescheduling finals in vet school is not an easy task, particularly for toxicology where we only have one test for the entire semester. To my surprise, Karen was still waiting when I returned in the late morning and only got into surgery at 1:30. For as long as we waited, the actual surgery was incredibly short. Karen was in and out in less than 15 minutes.

Jess was an incredible babysitter and watched Landon all night and day for us, from midnight last night until 4 o'clock this afternoon when we finally got home. She did an incredible job with him, especially when you consider that we called her in the middle of the night and had to teach Landon's special care requirements over the phone. Just another reminder of the incredible friends we have around us. Karen's sister Jamee drove down this afternoon to help us care for Landon during this week so that I might have more time to study and Karen could take it a bit easier after her procedure.

Landon shocked me today while changing his diaper. He was very fussy this afternoon, I think from gas, and was arching his back and twisting side to side. During his fit I cleaned him up and left him diaper free for a moment on the changing pad while I opened a new diaper. The cold of the pad must have surprised him but he took a big breath, twisted to his right, and rolled over! I know this is different from an intentional roll-over that they look for as a developmental milestone but I was blown away by how strong he is. He stopped crying pretty quickly after he made it to his stomach, more from shock than comfort I think.

Once again, I'll leave the blog brief today in order to accommodate my new study hours. Karen would like to thank all of the people who wished her well today and would like them to know that she is doing well and getting plenty of rest.

Monday, May 13, 2013

Karen in the Hospital

I'll apologize now for the very short post today. Yesterday was highly uneventful until approximately 9 o'clock last night. Karen passed a large blood clot and began bleeding heavily for several hours. Shortly after midnight we left for the ER with Landon in the care of our wonderful friend Jess. After several blood hormone tests and an ultrasound, it was discovered that Karen has a retained piece of placenta from delivery. She will be having a D and C (dilation and curettage) operation early this morning when her gynecologist arrives. We are spending the night in the hospital but should be able to go home in the late morning or early afternoon. Karen is comfortable and on IV fluids and antibiotics.

God Bless (and good luck to all the other students suffering through finals!)

Sunday, May 12, 2013

Finals

Landon gave us another easy night yesterday and we are starting to think we might be through the worst. I say this with trepidation as I'm sure I'm probably jinxing the situation. I think a lot of Landon's nighttime distress stemmed from his sore umbilical cord and, now that the cord is gone, we will hopefully have some more restful nights. I took several of Landon's feedings in a row last night, hoping to give Karen some extra rest. Unfortunately, the negative aspect of my attempt at kindness is that I was exhausted during the day today. After finally getting into my first deep sleep at around 10 this morning, I was in and out of sleep until almost 6. This has left me woefully ill-prepared for my finals this upcoming week and I'm anticipating late nights for the next 5 or 6 days consecutively, crying baby or not.

The weekends have turned into recovery times for the hectic running about we do during the week. With no appointments or tests to run off to, we actually get a chance to have some restful time with our son. Karen and I mowed the yard this evening and even that seemed relaxing. We seem to be perfecting the art of enjoying quiet time. Moments of silence happen rarely enough, particularly with a baby, so when that time does come around, Karen and I bask in it. Having gotten familiar with a baby that screams through the night, these past few nights have seemed strangely calm despite still getting up every couple hours to feed him.

The only real excitement today was Landon's increased feed dosage from 65 to 70 ml every three hours. He has been handling his food well and filling diapers faster than we can count. As long as he continues to tolerate the increases, his feedings will go up 5 ml per week. It's nice to see his muscles get stronger every day as he holds his head up a little longer, pushes a little harder with his arms and legs, and pulls his legs up easier as his abdominal muscles develop. More food per meal will definitely help him continue to get stronger. Even his vocal cords seem to be getting stronger as his breathing is not as loud or raspy.

Karen and I continue to be blessed every day and have grown in faith through this time. We are still of the opinion that we've been chosen to be Landon's parents for a reason and, as such, we continue to try and pack as much love into every day as we are able. A little boy with special need like Landon requires a special effort on our part to be simply adequate and yet another step above to make sure his life is exceptional. Each day is a fight for him and so we choose to fight for him as well.

As it has rolled past midnight into Sunday morning, I want to wish my mom Kris and mom-in-law Denise a Happy Mother's Day! Thank you for all your love and support. I'd also like to wish Karen Happy Mother's Day from Landon for the first time. Don't forget to sent your thanks and love to your mom today. If each child is a flower, than every mom is a garden. Sometimes she has to get dirty and smelly. Sometimes she is left empty and alone, waiting for her flowers to come again. But none of us would bloom into beauty if they didn't let us sink our roots in deep and provide us the nourishment of their love.

Saturday, May 11, 2013

Barbeque Fun

Alas, our good fortune of restful nights was not to be. Landon slept relatively well last night but, unfortunately, the key word in that phrase is relatively. He fussed after each of his feedings for about an hour, seriously shortening our naps. We've seen the dark and the light so I suppose last night was a bit of gray. We are anxiously awaiting the arrival of our feeding tube extensions so that we can start using the auto-syringe again. We still sit up and hold him while we feed but being able to sit back and relax instead of staring at the second-hand on the clock so we don't miss a push every 30 seconds over half an hour will be a relief. They should arrive tomorrow or Monday.

At noon today we had the pleasure of eating lunch with our vet school family at barbeque hosted by the Student Chapter of the American Veterinary Medical Association (SCAVMA) for Landon's benefit. The event had a rough estimate of 250 attendees in another display of the incredible generosity of everyone with whom we cross paths. SCAVMA President Kyle Clymer, Dr. David Poole, and Dean Elmore were incredible sports and let me throw a pie in each of their faces to help raise funds and celebrate the success of the fundraiser. The video of the pieing can be seen below as well as on the "An Adventure with Landon" facebook page, which I invite all of you to join and comment on if you wish:
https://www.facebook.com/AnAdventureWithLandon

The most rewarding part of the fundraiser was the opportunity to share our beautiful son with so many who had been thinking and praying for him. Dozens of people were able to see and touch him for the first time and we enjoyed being able to have him outside for an extended period today. With all the attention and noise, Karen and I were a bit worried that he may have a seizure at some time but were relieved when he went episode free all afternoon. We also saw our pictures with Landon and, while he was as cute as ever, I finally realized the ragged visage I have developed since his birth. I was in desperate need of a haircut before Landon's birth and the last three weeks have not been abundant in free time nor time out of doors. I think I have progressed beyond pale to fluorescent. It's amazing that Karen as managed to stay well-kempt and beautiful through the entire process.

After the barbeque, Karen was treated to a nail appointment by three of our good friends and spent a couple hours with the girls while I watched Little Goat. The dad and son time was nice and gave Landon and I the chance to eat together, listen to some music, and watch a little ESPN (that might have been more for dad). During a diaper change, Landon's umbilical stump even came off! This brings a little relief due to the irritation he has been experiencing when his cord has rubbed on the top of his diaper. It might even help him sleep a little better at night. When Karen arrived home, she took over so that I could get a quick haircut before we took family pictures this afternoon. I struggle to be photogenic. To be honest, I struggle to look like I'm not in pain in photos, so I really need all the help I can get. Looking like a caveman just wasn't going to fly so I went in for a more clean-cut look.

My friend and classmate Lori Agulian came by the house this afternoon to take pictures of the family for us. Although she said this was her first baby shoot, she did an outstanding job. Her ideas for photos were unique and the results I have seen so far are incredible. I am excited to share the photos with all of you slowly over the blog but as both of us have finals this next week, it may be a week or two before we get many back. If you would like to see them as she finishes you can find her facebook page at:
https://www.facebook.com/LoriAgulianPhotography


For those who are interested, my dad has decided to get an order of "Team Landon" wristbands to make getting them easier for our friends and family in Nebraska. The American Exchange Bank in Elmwood has agreed to have the wristbands available there, as has my dad's consignment store Bits and Pieces and More. I wanted to express my gratitude again for the efforts of organizations within the veterinary school who have sponsored fundraisers for Landon's benefit. These include, but are not limited to, the Christian Veterinary Fellowship, SCAVMA, Classes of 2013-2016, Exotic Animal Medicine Club, and others who have sponsored a taco feed, barbeque, bake sale, Chili's profit share, running pledge, and more. Your efforts have really been incredible and I wish I could thank each of you by name. People like you all should give hope to the world as a shining example of the good that resides in the heart of mankind.

“When we love, we always strive to become better than we are. When we strive to become better than we are, everything around us becomes better too.” - Paulo Coelho

Friday, May 10, 2013

Meeting the Vet School Family

Small miracles happen every day. Last night, Landon went to bed at midnight and slept until the sun was out. Karen and I woke up in tiny panics every few hours because we are so used to his crying. Those were some of the most beautiful hours of sleep I've ever had the pleasure of sleeping. We handled a small fussy episode shortly after six and then we slept again, all the way until ten. This restful night could not have come at a better time as we were both struggling to make it through the day yesterday. Maybe Landon has decided we passed the test and it's time to give us a break. We can hope.

With homework to turn in, I decided to bring Karen and Landon with me to school so they could meet some of the people that have been so supportive and proactive to our benefit. We are so grateful to everyone at the school for their compassion, selflessness, and understanding so it was nice to give them a chance to see and touch Landon in person. Goat handled all the attention wonderfully and slept through the entire experience. With his continued stability, Karen and I feel comfortable bringing him to more appearances in the future, starting tomorrow. There is an end of the year barbeque each year at the vet college and this year they have been generous enough to use it as a fundraiser for Landon. We will be attending this lunch tomorrow and Landon might help me throw a pie at the Dean!

Finally, after 10 days out of the NICU, Karen and I are comfortable in our feeding schedule. One of us takes the midnight and 3 am feeding, the other takes the 6 and 9, and we split the rest of the day back and forth. There are definitely a few perks to this schedule. First, we each get the chance to get 4 or 5 hours in a row without waking, assuming Landon doesn't cry too much at night (a poor assumption). Secondly, we have perfected falling asleep. I haven't tossed or turned in bed for three weeks. Lastly, it gives me a chance to study at night when I normally take the midnight and 3, just staying up to study in between (and write the blog of course).

A few small duties of normal parenthood were accomplished and each one felt like a terrific achievement. I'm not sure if bathing a baby gets easier with time but I think we have decided that it is a two person job at least. Landon is a wiggle-worm and he does not enjoy being wet one bit. He's much cuter when he is happy and clean though. Karen also finished our small mountain of laundry while I studied. I have to admit, I'm not sure why we haven't been using baby detergent for years. My clothes have never felt softer or smelt better. I think we are both tired tonight, even after our restful night yesterday. There is something about being up all night that lingers with you.

With my semester finals coming this next week, I may be pressed for time in the evenings. Given the situation, I apologize if the blog gets a bit abbreviated each night for the next week or so. I will do my best to give a full update but the writing will likely be a bit more concise and direct. That being said, the half hour to an hour I spend writing these comments are some of the most relaxing minutes of my day. You've all become an outlet for my frustration and a megaphone for our triumphs and that is such a blessing to have in my life.

"At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us." - Albert Schweitzer

Thank you all for being the sparks that keep our spirits alight.


Thursday, May 9, 2013

Hearing Tests

Early this morning, Landon and I left Manhattan for Topeka and his audiology appointment. I was worried yesterday evening that I would have trouble waking up to leave in time but Landon made sure that wasn't a problem. Starting at shortly before midnight, Landon cried/screamed/howled until almost 6 am. We tried every way to soothe him we know to no avail. Several times during the night Karen or I had to walk away. I am so thankful that there are two of us working together to raise this boy and thousands of people behind us. While I consider myself patient and even-tempered, I came to understand Shaken Baby Syndrome last night. Karen and I have enough self-control to remain relatively calm and awareness to walk away when we need to but if there were only one of us, alone, with a screaming baby in the middle of the night with no end in sight? I can understand the emotional snap that must happen for someone to shake their child. I in no way excuse that behavior but I am beginning to comprehend the mental state of those that do break down.

I elected to take Landon on my own to his appointment so that Karen could sleep for a few hours and recover. I wanted her to be well rested because I made her watch him while I went into a mini-coma when we arrived back home shortly after noon. Landon was exhausted and slept in the car to and from the appointment as well as right through his testing. Upon closer inspection we found that Landon had a bruise around his umbilical stump that was probably causing his pain. He was fussy again tonight but with some Neosporin analgesic he very quickly fell back asleep and has been much better the rest of the day. We think he accidentally hit his stump last night while fussing because he was too hot and tore a small piece of skin on his belly button. We have been diligently wiping it with antiseptic to ward off any infection but the skin is not hot or inflamed so we are not overly worried about an infection.

After discovering the bruise on his belly button, I tried to schedule an appointment with a pediatrician to see him tonight. I was frustrated by the response of many of the pediatricians in town, particularly with their lack of empathy. I began calling after deciding he had a possible open wound in the interest of checking for and preventing infection. This was shortly after many of the clinics in town had closed by not excessively late. Even the on-call pediatricians told us that we could only schedule an appointment for the morning and would not see him tonight as he was not a patient of their clinic. I explained that his pediatrician is a genetic specialist in Nebraska due to the genetic nature of his condition but that this problem was unrelated. I was told repeatedly that if I was worried I could take him to the emergency room but that they would not see him unless it was by appointment tomorrow. I am confident that Karen and I can recognize a real emergency and in the mean time we will care for him with our own skills. Their attitude came across as disinterested at best but hopefully we will have a better experience in the future.

Anyway, at 8:30 this morning Landon and I met with the audiologist who tested his hearing in both ears. After running several tests over the course of 2 1/2 hours I received a familiar response of "well we just don't know." When testing the ability of the nerve to send a signal from his inner ear to his brain, Landon failed on both sides. The nerve was able to transmit the signal to his brain but there was interference along the way. This is likely caused by the blood/fluid around Landon's brain. The right ear transmitted the signal in a normal amount of time but the left ear's nerve was slightly delayed. This does not tell us much about his ability to hear other than we need more testing, which will be done when he is four months old. The audiologist also ran a test to check the function of Landon's cochlea on each side. The cochlea is a hollow tube with microscopic hairs inside that vibrate and move when activated by sound. This is the organ that turns sound waves into a nerve impulse that we hear. The cochlea on Landon's left side was perfect but his right ear showed some interference, which could be due to several factors. Likely there is no major problem and it is a function of the side he lays he head on when he sleeps, which can allow fluid to accumulate and interfere with the test.

Essentially what we found out today is that we will learn the most from watching Landon and judging his reactions to see if he hears well or not. Karen and I have seen him react to even very soft sounds so we are not concerned with his ability to hear but rather with his ability to interpret what he is hearing. We won't learn more about that until he is much older and able to tell us what he is hearing. In the meantime, I would love to hear suggestions from all of you of music to play for Landon. I have been trying to introduce him to as much as I can, including Count Basie, Mozart, Beethoven, The Beatles, Louis Armstrong, Hank Williams, and an assortment of other artists and songs I think really represent the best of music. All suggestions are appreciated.

Our good friend Tayley visited again tonight and was able to hold Landon for the first time. She brought us food, stayed for several hours, and was even nice enough to change one of his (very full!) diapers. The diaper change was probably a good experience for her as Tayley and her husband Cameron will be welcoming her own son, Wylde Glenn, to the world in September. That boy has also been blessed with a terrific mom and dad and Karen and I are already looking forward to play dates for our kids.

As I'm sure you can imagine, we are looking for consistency in our lives but the constancy of knowing nothing or next to nothing about Landon's condition has gotten old. We approach most appointments with a bit of resignation that we will likely know little more leaving than we did coming in. I did some searching this evening for dealing with the unknown and found a wonderful quote by Corrie Ten Boom, a Dutch woman who saved the lives of hundreds, if not thousands, of Jews by hiding them in their home and helping them reach the underground during Nazi occupation of Denmark during World War II. She wrote "The Hiding Place" about the experience. She was imprisoned and sent to a death camp by the gestapo in 1944 but was later released due to a clerical error. When asked later about how she coped with her unknown fate after imprisonment, she said this:

"Worry does not empty tomorrow of its sorrow, it empties today of its strength. When a train goes through a tunnel and it gets dark, you don't throw away the ticket and jump off. You sit still and trust the engineer. Never be afraid to trust an unknown future to a known God."

Wednesday, May 8, 2013

Back to Kansas

Hallelujah! Landon slept through the night without a fuss yesterday. This is the first time since coming home that he has not cried between 2 and 6. Karen and I enjoyed the chance to sleep between feedings and I know that today we both felt more energetic. We even let Landon sleep without his apnea monitor on. The straps around his chest can get sore and make him irritable and he has not had any apnea spells since Thursday. It is nice to be able to actually carry him around the house or roll around his bassinet without worrying about cords and wires or whether the monitor is charged.


We left Nebraska shortly after noon and arrived back in Manhattan in time for dinner. We took the evening to nap, do laundry, and just spend some time together while Landon slept. I needed a few hours to study and Karen cleaned up and organized the room. We did have two of my classmates, Andrea and Brice, drop by tonight. I need to give a special thanks to Andrea for spearheading many of the fundraising events the school has put on for Landon and for providing me with notes to study while I've been away from school. Many of my classmates have provided notes and study aids for the upcoming tests and I will only be passing this semester on their backs. Andrea had the chance to hold Goat for the first time tonight and brought us some rhubarb cobbler. There is no visitor more welcome than the one that brings food! Ultimately, the day was uneventful but with the schedules we have been keeping, an uneventful day is the best kind of day.

I want to apologize to the hundreds of people who have emailed, called, sent letters, and contacted us in a variety of ways for not responding to all of your messages. I plan on getting around to all of them eventually and I want to express our appreciation for everyone's compassion, aid, and advice. The adventure we are going on now would be a much more difficult journey without all of your passion and assistance. Each word of encouragement and every read of the blog is another shoulder to help bear the burden of our situation and we are blessed to have so many friends, new and old, along with us.

Today, Danielle's story from New Zealand was shared with me and I wanted to pass it along to you. It's very short but makes an important point:

"My seven year old cousin was recently diagnosed with cancer.
A month ago he had half of his leg removed.
Before he went in for the operation he said, 'oh well, I'm off to get my pirate leg.'
Brave little boys inspire me and give me hope"

How much we can learn from children if we just let ourselves. Confidence that life will go on and be worth living, no matter what. Finding joy in our misfortunes and looking forward to the adventure that comes next. Anne Sullivan, the tutor of Helen Keller, was often critical of the way we teach children. I forget the exact quote but, paraphrasing, she once said that all our elaborate education systems wrong, as they are built upon the premise that all children are idiots who must be taught to think. Maybe, if we took a bit more time to learn from babes and kids and forgot our preconceptions, we could learn a few important lessons on approaching life with eyes and hearts open.

We worry about what a child will become tomorrow, yet we forget that he is someone today.

Tuesday, May 7, 2013

Genetics Consult

Landon had his first real doctor's appointment today. We met with a pediatric genetics specialist (whom also happens to be my mom's boss) in Lincoln so that he could get his first in-person analysis of Landon. Dr. Schmidt has seen lots of Goat's lab work and scan images but I know he has been wanting to get a hands-on exam for almost three weeks now. After last night's wail-a-thon from 1:30 to 5, I think we were all exhausted at the appointment, Landon included. As they say, no rest for the weary though, and the exam proceeded as scheduled.

The first thing we learned was that Landon is finally gaining weight. After being stuck at 7 lbs and 2 or 3 ounces, he weighed in at 7 lbs 12 oz this morning. He has also grown just over an inch since his birth at 22 3/4 inches. This is great progress and we definitely had some ground to make up but we have to be careful. Too much weight to fast could make things harder on Landon in the long run because, due to his diminished muscle tone, he doesn't build muscle as fast as other babies. If we weigh down developing muscles with fat we could definitely make things tougher instead of easier.

 My beautiful sister Mikaela and a very sweaty Little Goat

Along with measuring his height and weight, Dr. Schmidt took a myriad of other measurements including the length of his hands, chest circumference, head circumference, foot length, distance between the eyes, height of his ears, etc. Many of these measurements can help give him a clue as to what type of genetic disorder may be affecting Landon but the results were, as usual, slightly inconclusive. We did learn that Little Goat's head circumference has not increased and this is discouraging. When a baby develops, the growth of their cranium is determined by the growth of their brain. A lack of head size increase may mean that Landon's brain is not growing larger right now. However, there are alternative possibilities. If the amount of fluid around his brain is decreasing at a pace equal to or greater than the growth of his brain, that will decrease the amount of pressure exerted on his skull. The radiologist at Stormont-Vail had the opportunity to observe the cranial ultrasound from Wednesday and agreed with my assessment that there was less fluid in the ventricles of his brain and possibly from the subdural hygroma, although it's difficult to tell.

With his genetic reference, Dr. Schmidt gave a different possible pathogenesis (sequence of events) than we have heard before. My understanding of the neonatologist explanation is that fluid accumulated in the area around Landon's brain and prevented the brain from growing to fill that space. The new theory from today, which makes more sense to me, is that a genetic defect prevented the white matter of Landon's brain from growing correctly. The blood supply to the white matter emerges from the dura, a membrane that is attached to the inside of the cranial bones. Because the white matter never grew closer to the skull bones, the vessels stretching from the dura to the brain were unsupported across open space and occasionally tore due to even the slightest movement and bled into the area around his brain. Dr. Schmidt is confident that the fluid around Landon's brain is blood and not serum. The blood did not cause the small brain but rather filled the space because it was there. These vessels are not actively bleeding and the pathogenesis really doesn't change the end result much but it may give us some insight into the genetic mutation that is causing this. Our genetics micro-array (our best hope at a diagnosis) came back today as inconclusive but we will send off more blood for a more sensitive version of the test later.

The exam today was no restful event for Landon and he was very upset, particularly by the poking and prodding as he was checked for sensation. Afterwards we were left with one tired baby that slept heavily most of the rest of the day. While he slept, Karen and I discussed a few of the insights from Dr. Schmidt and talked about some of our upcoming decisions. With the new pathogensis comes a different prognosis. Although Landon's condition is unique, there are many other disorders that cause microcephaly (a small brain). These children have varying degrees of outcomes, ranging from very poor (less than 1 year) to almost normal development and ability to learn and everything in between. While the failure of Landon's cranial circumference to increase and the continued seizures are discouraging signs, his ability to gain weight and his display of a gag reflex for the first time today (hurray!) are very encouraging. So what does it all mean? Well, as usual, we don't really know.

With the probability of an increased life span improving, Karen and I have decided that placing a G-Button, or gastrostomy tube, for feeding is a good idea. I changed Landon's NG tube today and let me tell you, that is not a fun experience for anyone involved. Not only does it scratch and rub on the inside of his nares and esophagus but the tape to his face is very irritating and uncomfortable for him. We also worry about him grabbing and pulling out his tube as his motor skills improve. With these things in mind, we've had Dr. Schmidt contact a pediatric surgeon in Omaha to schedule an appointment for this summer.


After the exhausting day Karen, Landon, and I have had today, we are hopeful that he will sleep through his normal period of frustration. We just finished his 3 am feeding and so far, so good! We think part of the problem is that his loud breathing from the poor tone in his vocal cords wakes him. Without Karen or I awake to reposition him when the volume of his breathing increases, he gets frustrated and starts to cry. Once he starts crying, he works himself into a frenzy and is very difficult to calm after. However, we will see as almost every theory we have about Landon is just a (poorly) educated guess.

After seeing the depths of Dr. Schmidt's knowledge today, I am continually blown away by our fortune to live in the age we do. 150 years ago, Landon would have died in a matter of days or even hours. Fifty years ago we could have probably kept him alive but would have had no idea what was wrong with him or even what tests to run because they didn't exist yet. Even 5 years ago the new micro-array we will be running in the near future didn't exist. The wealth of medical knowledge and experience that surrounds us is truly incredible and a testament to the human mind and perseverance. Pursuing knowledge about the world around us and delving deeper into the way things work is critical to improving the lives of ourselves and our future generations. I want my children to grow up knowing that they can make great contributions to the world and to the lives of people by hard work and persistence. Even in the bible we find that exploring and learning about this earth and the life on it is part of our responsibilities as inhabitants here.

An intelligent heart acquires knowledge, and the ear of the wise seeks knowledge. - Proverbs 18:15

How much better to get wisdom than gold! To get understanding is to be chosen rather than silver.  - Proverbs 16:16

Do you see a man skillful in his work? He will stand before kings; he will not stand before obscure men.- Proverbs 22:29

These were some of my favorite verses growing up. How beautiful that God has given us this wonderful creation around us that can fill all of our lifetimes and infinitely more with the pursuit of knowledge! Landon represents one of the most wonderful of these opportunities. Not only are we blessed by his lessons of love but also by the insight he provides us into genetics and the unique mutation he has. Thank you to all the incredibly intelligent doctors and nurses who are making incredible efforts to learn from and about Landon and trying to improve his life.

Learn from yesterday, live for today, hope for tomorrow. - Albert Einstein

Monday, May 6, 2013

Metal Test Results

Two weeks have passed since starting the blog and I can't believe the amount of support and following it has gathered. The blog has been visited over 20,000 times and I've received dozens of emails and comments of support and prayer. As our journey continues, I hope this following will only grow and continue to share the lessons I've learned from Landon's life. I am so blessed to know him and I want to share my good fortune with anyone who will listen (or read in this case).

Our two hour cry sessions continued last night as usual. Starting in the middle of his 3 am feeding and lasting until just after 5, I really can't understand what he gets so upset about. It's almost like colic but just at a very strange hour of the day. I think part of the problem is that he works himself into a frenzy and then has a hard time calming down. I'm sure Karen thinks I'm just not rocking/holding him right because almost as soon as I handed him over this morning he calmed down. I essentially passed out as soon as he calmed and unfortunately missed going to my local church this morning. I know it's important to catch up on sleep but it is always nice to have fellowship and worship with the families I grew up with. Several people at my Elmwood church have been family friends for half a century or more.

After they left church, my grandpa Charles and his friend Peg dropped by to meet Landon. It was a nice moment for me to have four generations of Shrader men sitting together at the same time. Landon is the first male great-grandson for either of my grandparents and that is a special memory for me to have. We plan on visiting my grandpa Richard this coming week sometime, assuming we can work around doctor appointments. My aunt Sherri, uncle Ron, and cousin Morgan all made a visit today as well as Mikaela, Brandon, and Sophie. I think I might have been bad company due to fatigue but I'm sure they will all forgive me.

Karen received a call this afternoon that our metal whole blood test results were in. Landon's copper and ceruloplasmin levels were normal, ruling out Menke's Disease. This was not unexpected but still warrants a sigh of relief. Our best chance at a diagnosis anywhere in the future is with the results of the micro-array ran last week. We should get the test results sometime this week, most likely after Wednesday. We have an appointment with a genetics specialist tomorrow morning and hopefully his exam will shed some light on Landon's condition and give us a more definitive prognosis. We are well prepared for more "we just don't know" answers.

With each day, it is obvious that Landon is getting stronger and more stable. While he still has occasional seizures, his sucking has improved, his is awake longer, and he tolerates more and more food. His cry is even stronger. An unfortunate side effect of this added strength is that he doesn't sound much like a goat anymore but I suppose we can keep the nickname anyway. Hopefully as he continues to improve he will begin to sleep more during the night. I can say with confidence that as much as I love the little man, there are times during his morning cry that I just need to pass him to someone else. Still, sleepless nights are a small price to pay for the blessings he brings.

Today I would like to close with a couple of photos taken by my brother-in-law Brandon today. Finally, a chance to see how cute Landon really is!

Sophie and Landon

Little Goat

Sunday, May 5, 2013

Over the river and through the woods

To grandmother's house we go! Today was Landon's first trip out of the house since coming home Wednesday and it was a big one. We rode in the car for 2 1/2 hours all the way to grandma and grandpa Shrader's house. Landon has a genetics consultation with a geneticist on Monday in Lincoln, only 20 minutes from my parent's house. We took the opportunity to come up for the weekend and relax with family and friends. Landon had a long night last night between our regular 3-6 am fussy session, a seizure at 7, and half a dozen dirty diapers. A couple nights with a little extra help to let Karen and I catch up on sleep will be a relief.

Before leaving for Nebraska, I got up at 8:30 (after about two hours of sleep) to run errands that have been put off for a few days. After visiting the bank, vet school, and post office I came home shortly before eleven to nap. Karen was very sweet to take the 9, 12, and 3 feeding sessions to let me do chores and sleep. I woke up with the 2:45 feeding alarm, packed our bags, and loaded the car to head home. After a quick trip to the store for some Mother's Day flowers (we won't be home next week), we were finally on our way at 4:30. I write this out to emphasize how crazy life can get after you welcome a new life. Before Landon, Karen and I could have packed, gotten ready, and left in under half an hour. Now, the packing and double, triple, and quadruple checking for necessities takes half the afternoon. We still nearly forgot an emergency NG tube and lubricant. Once again, I'm beginning to realize how incredible each of our own parents are, running kids to practices, recitals, making meals, and doing laundry. I guess you have to be one to recognize how important it is to thank our parents on Mother's Day and Father's Day.

We arrived at my parent's house at 7:30 and were joined by my best friend Lance and his girlfriend Katie. It is almost insulting to call Lance only a friend and not a brother. He and my two other 'brothers', Marcus and Jon, are the faces I see when I think of my childhood and remain my closest friends to this day. Landon was even lucky enough to be born on Lance's birthday! Although I only get to see them all once or twice a year, their friendship has been there through good and bad and continues to see us through the difficult times we face now. Lance and Katie were able to visit until about midnight before heading home but their company was exhilarating and I'm so glad they were able to meet and hold Goat.

My parents have been generous enough to take care of Zeke and Charlie, our Yorkies, while we learn to care for Landon at home. It was wonderful to see them today and get to bask in their endless energy. They wanted nothing more than to cuddle with us and that is exactly what we needed from them. It is amazing how such energetic dogs can recognize the need to be gentle around Landon, stepping carefully around people holding him and not barking all night. Neither of them seemed very curious as to who or what Little Goat was until he started to cry. Zeke responded by a few quick sniffs before bounding off to play with his stuffed frog but Charlie was a little more concerned. He hopped up on Karen's chair and closely watched the crying baby until he was sure everything was alright, looking anxiously between Landon and Karen the whole time. Maybe he was more concerned about whether or not Goat would be stealing his spot on momma's lap!

Brandon and Mikaela also made time to visit tonight and brought their daughter Sophie to meet Landon. I might be a little biased but I think they are a pretty adorable pair of cousins. Due to the strict health standards of the NICU, Sophie was unable to meet Landon until today. At only 4 months old I'm sure she couldn't appreciate the moment but I know it meant a lot to me. Every time we see Sophie is such a blessing. She is beautiful and her little smiles make our hearts soar. Landon is a warrior and is fighting through some challenging obstacles in his life but this is a situation we would never want another baby to struggle through. Every little milestone Sophie achieves reassures Karen and I that the world is still a place for happiness and not only strife. If our time with Landon on this earth passes, I thank God for Sophie because she can show us the things Little Goat would be learning and doing. Our legacy here is our memory and if my little man passes, I owe her thanks for every time she can remind me of him.

"Keep me away from the wisdom which does not cry, the philosophy which does not laugh, and the greatness which does not bow before children." - Kahlil Gibron

Saturday, May 4, 2013

Team Landon

Day 12

After a full night of studying, I left Karen alone with Landon to go and take my systemic pathology test this morning. This was the first time either of us has been alone with him at home and, of course, his apnea monitor went off for the first time while I was gone. The sensor had detected that Landon stopped breathing for 20 seconds before sounding an alarm. The alarm on this monitor is extremely loud and Karen said the apnea spell ended almost immediately after the sensor sounded. In all likelihood, the volume of the alarm scared Landon into taking a breath, resolving the issue. I know we both get frustrated with the wires always being in our way having to carry around his monitor everywhere with us but it is definitely reassuring to know that we will be aware any time his health begins to deteriorate.

In the afternoon, Karen gave Little Goat his first bath at home. She was finally able to get the dried up ultrasound gel out of his long locks and scrub beneath the band around his chest. After some full body lotion treatment, Landon went into a new sleeper and napped while Karen did a full house scrub down. It's amazing how much she was able to accomplish despite being worn out from our new intermittent sleep pattern. I felt a bit like a lazy bum by comparison but I know I put in my hours last night and early this morning. I can't imagine having to do this alone and I couldn't ask for a better partner. We understand each other and manage to have great patience.

Sadly, Landon had seizures several times this afternoon, including one that was of medium magnitude. We aren't sure what triggered these episodes but we were able to get them back under control by around 7 o'clock this evening. We are certain that the strongest episode was triggered by the vibrations in Landon's bouncer. He enjoys sleeping in the monkey bouncer but the addition of gentle vibrations proved to be too much stimulation. This came as a surprise to Karen and I because he is always soothes when we rock him and walk around the room with him but apparently the different movements stimulate him in different ways.

While the seizures are still scary, we have become much calmer in responding to them. The apnea monitor assures us that he is still breathing, he never has a seizure we are not around for, and he usually only cries briefly afterward. In fact, Brit and Steph came to visit again today and he actually had small seizure while Steph was holding him. We all stayed calm, let his episode pass, and rocked him back to sleep.  After the girls left, my classmates and friends Sabra, Ramon, Mike, and Bri brought us dinner and took some time to hold Landon for the first time. By then, his seizures were under control and he handled the extra attention extremely well. I think we've found a few new babysitters!

We've realized that Landon has the habit of being fussy between 2 and 6 each morning. He will go the entire day with nothing but smiles and bright eyes but come his 3 am feeding he is not a happy camper. Tonight (5/4/13) marks the third night in a row he has cried for at least 2 hours during that gap. It's no wonder he sleeps most of the day because the theatrics he puts on at night must be exhausting. I don't mind a fussy baby but he could have picked a different part of the day to be his sad o'clock. We have tried changing diapers, walking around the room, rocking, patting, burping, feeding, music, silence, lights, dark, etc. So far it seems like we are just going to have to wait out these grumpy spells. 

While rocking Goat tonight, perhaps in an exhausted delirium, it crossed my mind that it is funny how opposites work. For high to exist, there must be a corresponding low. We would never recognize beauty if there was no ugliness. At that particular moment, I was trying to soothe the sadness that juxtaposes a daytime of happiness. While I was frustrated by his cries, as I'm sure I will be many times, I guess I should be thankful that he has these moments of sadness because without them I would never appreciate the beauty of the moments when he is happy. It is very possible that in the future we will have some times of intense sadness. Hopefully, in those dark hours, we will remember that even in those lowest moments we are blessed and that it is only for those dark hours that we can appreciate how wonderfully happy we are now. Even in the hardest times I know we will survive because we have each other, our friends and family, and our faith.

Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go. - Joshua 1:9


While she was here, Steph showed us the new wristbands she had made for Landon. With the logo "Team Landon" in white on a baby blue band, I think they turned out very handsome and are a great idea. She is selling them as a fundraiser for Landon's medical expenses but I already like wearing mine as a reminder of all the lessons Landon teaches me. It's easy to forget to live in the moment and approach the world in a loving way when he's not around so hopefully carrying an emblem of him with me at all times will help remind me. The wristbands also stand as a testament to the amazing support and camaraderie we are surrounded by. The Class of 2015 is selling these wristbands for $3 for one or $5 for two.If you are interested in having a "Team Landon" wristband, email Stephenie at sblythe@vet.k-state.edu with your name, quantity you want, and shipping address. Thank you for any and all support, whether in thoughts, prayers, or otherwise.

Thursday, May 2, 2013

Learning the Ropes

Day 11

It's always easier to make plans than to keep them. As expected, Karen and I had a fantastic night with Landon. His monitors never went off, he slept very well, and he maintained his temperature like a champ. Unexpectedly, Karen and I struggled to sleep much of the night. The mixture of excitement and anxiety we felt made us jump at every sound he made. Eventually fatigue did take effect after his 3 am feeding. I took the 6 and 9 am feedings while Karen slept and she took the noon feeding for me. On the whole this seems like a good system that we will probably keep up until some schedule changes require an adjustment.

Much of the two hours we salvaged from commute time was spent running errands for items we hadn't even realized we needed. Because Landon doesn't suckle, his lips get particularly dry and cracked. This is understandably uncomfortable and leads to a very fussy baby. The lip moisturizer we needed is specifically designed for babies by Aquafor and required a bit of looking around before we finally found it at Target. With visitors coming to see Landon frequently, we also needed an industrial size bottle of hand sanitizer to help prevent him from picking up germs. His umbilical cord needed alcohol wipes and we had to find an extra-wide crib to accommodate his Tucker Sling, an inclined wedge and body harness specially designed for babies who need to be elevated for various reasons. Being inclined helps Landon maintain his airway and may help him digest his food.


Besides assembling the crib and doing the endless syringe cleaning, milk warming, diaper changing and cataloging, I was able to catch up on some studying and Karen napped to prepare for tonight's feedings and changings. As far as Landon goes, he seems the happiest and healthiest that I've seen him. His breathing is easy and even, his bowl movements are regular (and getting bigger with every diaper it seems), and we haven't seen any seizure activity since Saturday. It's great to see how well he is doing, particularly with all the traveling we will be doing soon. Karen and I were a bit concerned about his ability to handle riding in a carseat for the amount of time he will have to but his apparent stability is reassuring.

Landon's schedule in the near future is beyond busy. We are still awaiting test results for genetics and blood metals, both of which should arrive in the next week or so. We have an appointment with a geneticist Monday, audiologist Wednesday, pediatricians later in the week and pediatric neurologists the week after. We will bounce around between Topeka, Manhattan, Lincoln, Omaha, and eventually I'm sure we will see specialists in cities around the country. Landon's cranial ultrasound yesterday showed, in my uneducated opinion, a slight improvement in the amount of fluid in his subdural space and in the ventricles of his brain. It will be interesting to hear the interpretation by our neurologist when he has had the opportunity to fully review the film.Ultimately, our treatment plan for now is to provide supportive care until we can hammer down a more definite etiology (initial cause of the disease).

Our good friend Cameron has been an immense blessing in our lives. He has been anxious to help us in any way he can and has learned how to slow-push Landon's feedings so that if Karen or I ever had another task to work on, Landon would still be fed on time and correctly. Even though our families have returned to Nebraska, I know we both feel as though we're surrounded by loved ones every day. I'm sure as fatigue begins to take a greater toll on our bodies we will appreciate a few watchful eyes to supervise Little Goat while we nap or shower, etc. As we begin to further understand his condition, having good friends around to help us make changes in his environment and treatment plan is a huge reassurance.

Despite his condition, when we are home it is easy to think that Landon's prognosis is wrong. Outside the hospital we are relieved of the feeling of waiting for the ball to drop. It no longer feels like an emergency is waiting around the corner but more like we are making slow progress up this mountain of a challenge. I know that it is important to stay realistic but optimism abounds in our house now. The rarity of his condition aside, Goat has proven that he is unique in other ways. His spirit and will to thrive are evident and are a ceaseless well of heartwarming moments.

As you will learn if you continue to read what I write, Gandhi is one of my favorite people in the history of time. His love for people and his wisdom inspire me. Gandhi believed that no matter where you start in this world or what people expect of you, you can always be a catalyst of goodness. He famously said, "First they will ignore you, then they will laugh at you, then they will fight you, then you will win." He was referring to the British occupation of India at the time but his determination and fortitude are characteristics I strive to apply in my daily life. Landon's great progress and strong spirit, even at his young age, have shown me that even the littlest of bodies can have the most powerful of souls. I pray we all embrace the lessons we can learn from a child and be in the world as they are: unprejudiced, with open hearts and arms, full of love.

"Live as if you were to die tomorrow. Learn as if you were to live forever." - Mahatma Gandhi

Home Sweet Home

Day 10

Home at last! Landon was finally released from the hospital after two weeks of doctors, nurses, needles, and tests. We are still awaiting the results of his exit tests performed today (EEG, cranial ultrasound, and blood metals test) but Karen and I are less concerned about those outcomes and are focused on enjoying our first evening home with our son. We listened to music together, took time for some pictures, and organized our home to fit all the new medical equipment we were sent home with today. Even with the added responsibility of temp checks with every diaper change, closely monitored feed intake, and correctly timing medications, we finally feel like a normal family.

With 24 hour access to Landon and a chance to finally sleep with him in the room, Karen can finally rest at peace. Being away from him has weighed on her and I know that these new stressors are much more welcome than the last. Having two hours of our lives back from the commute is a welcome change as well. You don't realize how grueling that time is until you consider what you could be doing with it. Karen plans on using that time tomorrow to do some physical therapy with Little Goat. How lucky is he to have a massage therapist mom that  knows exactly how to do all the stretching and muscle therapy he needs? I plan to use my new found time to do some serious studying. I would read aloud to Landon but I don't suppose he has any interest in systemic pathology.

I was astounded again today by the compassion and generosity of my classmates and professors. One of our responsibilities with Landon is to feed him slowly by NG tube so that he doesn't spit up. He is at a particularly high risk for choking on vomit due to his weak swallow and gag reflexes. Additionally, if he loses his anti-convulsant medication in his regurgitation, his blood level of drug could dip and he could suffer from a serious seizure. I reached out to one of my professors for information on where I could locate an auto-syringe (an electric pump that pushes out a measured amount of fluid per minute from a syringe) that would help prevent us from feeding Landon too fast or too slow. Going far above and beyond the call, they found and acquired this piece of equipment for me and delivered it to me on our return from Topeka today. I will keep him/her anonymous but I wanted to express my immense gratitude for his/her continued support.

Inside each of us there is a capacity for great good and Landon's life seems to have mobilized generosity in every heart he touches. People who have very different opinions normally are united by his cause and we have seen first hand the beauty of a community working in unison toward the aid of a friend and colleague. Awed by the blessing of cooperation, I would like everyone to know that I thank God for your presence in our lives and the love you show the world with each day of your lives. I will cut short today and go rock my son to sleep tonight.If you are living by the Golden Rule, I hope you have high expectations for the level of care you're provided with someday when you're in need. God Bless and good night.

Wednesday, May 1, 2013

Last Day in the NICU

Day 9

Sometimes when you're so focused on a crisis in your life, it is easy to forget that the world around you doesn't slow down to let you recover. Today was a gentle reminder to me that I have a bit of catching up to do and I took the morning and part of the afternoon to finish some routine tasks. First and foremost, I studied for and took a clinical pathology test this afternoon. My studies have definitely helped me stay grounded during some of the more stressful moments this past week. Many of our friends and family have expressed concern about my ability to keep up with classes and finish school but studying has become so engrained in my daily routine that I actually use my notes to relax at the end of the day. Hopefully this habit will serve me well as I finish out the semester.

Along with school there were bills to pay, a yard to maintain, and house to clean. After we finally caught back up with the 'real world', we headed back to our hospital routine after dinner. Having missed most of the day, Landon's doctors and nurses had lots of filling in to do for us. Lots of good news to start with. Goat passed his carseat test with ease and we have permission to take him home tomorrow afternoon or evening. That is promising for his neck muscle tone and indicates that he is getting stronger and making improvements in that regard. Hopefully he will begin to develop more tone of his vocal muscle and won't squeak and groan when he breathes anymore.

 Landon's new heart and respiratory monitor

Before he can go home, there are several tests that Landon's neurologist wants to run. First, he wants to run another cranial ultrasound to see if the amount of fluid around his brain has increased, decreased, or remained constant. He also wants to monitor his brain wave activity with an EEG to see if the activity recorded on Landon's admission has changed at all. Finally, he wants to run another blood test to check for the level of copper in Little Goat's system.

The copper level blood test is a significant development in diagnosing the condition that is causing Landon's signs. While we wait for the genetics micro-array to return later this week, the neurologist has put Menkes Disease on the table as a possible diagnosis. This disease is caused by a recessive genetic condition that causes copper to accumulate in some tissues and to be deficient in others. Menkes affects 1 of every 250,000-350,000 children born. While this is extraordinarily rare, what would make Landon's case unique is the very early onset of the disease. Most babies with Menkes are born completely normal and do not show signs until 3-4 months of age. Very few babies with Menkes survive beyond the age of three. A severe, early onset of the disease would be devastating.

While some of the symptoms of this disease fit (seizures, overall weak muscle tone, problems with temp regulation, and fussiness), there are some characteristic lesions that are absent. In an already rare disease, a unique presentation like Landon's where lesions develop in utero would be more rare by magnitudes. Landon also does not express the pathogneumonic lesions that give Menkes its more common name, Kinky Hair Disease. Landon's hair is thick and straight and not brittle. His facial features are not saggy and his neurologic lesions have shown up months too early. All things considered, Menkes is an unlikely diagnosis but every diagnosis is unlikely at this point.

As Landon continues to show improvement and Karen and I prepare for his time at home, we must consider what this means for our lives. Karen will probably not be able to return to work for as long as he is with us. We will have doctor appointments, often as many as three a week, in Topeka, Kansas City, Lincoln, Omaha, Chicago, or further afield. He requires a special bed, feeding equipment, tools for medicine delivery, and a subdued environment. I am already getting talented at working with hospital, government, and private aid organizations as well as arguing with insurance companies for coverage of procedures and equipment. So how can we bear all this? Why have we been challenged in this way?

Every day we are given the opportunity to choose our own attitude and approach to life. Karen and I have been blessed to find each other and, as a team, we attack each day with love. Love for each other, the Lord, our friends and families. When we approach the world through a lens of love, challenges are no longer grim fates to suffer through but moments to show the power of our convictions. The trials we face are temporary but the love we show for each other, our son, and those around us has the potential to spread like an infection and last indefinitely. Love can build a web of support to bear any burden, as our great support system has already displayed. We strive to grow closer together each day and our challenges only make us lean on each other harder. We face a painful path ahead with many snags along the way and there is bound to be conflict. But with an understanding of love and united faith we can handle any challenge. The burden we have been lain with is to love a little boy who needs an extraordinary amount and that is no accident. We have no doubt that Landon is our son because we can love him the way he deserves and the way only we (as a couple and as a part of the most outstanding support system in the world) can.

“Love is that condition in which the happiness of another person is essential to your own.” - Robert Heinlein