Wednesday, June 17, 2015

A Conclusion

At midnight on June 17, 2014, one year ago today, Landon James passed away. Cradled by his mother’s arms and a warm summer night breeze, we spent his last moments on earth as a family, on the back patio of our home, waiting for my 24th birthday.
                In the weeks and months leading to his death, it became increasingly clear to Karen and me that our time with Landon was nearing an end. As Landon’s weakness and discomfort progressed, there were few hopeful or encouraging messages to write. Goat’s sleep was restless and his time awake was often filled with abdominal pain or seizures. Like sunlight at dusk, his energy faded: subtly dimming until suddenly it’s night and you’re unsure exactly when the final rays of light and warmth extinguished. I’m not ashamed to admit that we prayed for his passing in the final days; that it would be peaceful and that we could be together when his time came. If the Lord were to answer only one prayer in my lifetime, I’m thankful it was that one.
I’ve written many conclusions to Landon’s story but could never bring myself to publish them and end the blog. An Adventure with Landon has been my opportunity to let Landon’s life touch as many people as possible. My hope in this effort was that maybe I could encourage people to reflect on their own lives, see the blessings around them, and see an example of the fragility of life but the strength of love. Concluding the blog seemed to mean I was admitting Landon was gone, the final chapter over, and there was nothing left to learn: a very painful prospect. When I recently reread the lessons we’ve learned from Landon, I noticed that in leaving the blog unfinished, I’ve been failing to embrace one of my own observations. Live in the moment because the future is not guaranteed and living in the past only guarantees you cannot enjoy your future.
On that night last June when Landon passed from the arms of his earthly parents to those of his heavenly Father, a whisper of a breeze tousled Landon’s hair. It was the same kind of breeze that welcomed him home from the hospital, enthralled him during his best days, and soothed him during his worst nights. Until we see Goat again, we have the touch of the wind to remind us of him. We have beautiful photos, mementos, and symbols of his time with us. Best of all, we still have the tremendous love of our family, friends, and communities that have carried us through this challenge, helped us celebrate his life during his funeral service, and have not forgotten us after his passing. We would like to thank and bless you all. Karen and I certainly could not have survived that past 26 months without you.
We’ve accomplished a few life goals since Landon’s passing. I’ve graduated from veterinary school and we’ve moved to Canada so that I stay on track for specialization in exotic animal medicine. Karen was inspired by Landon to go back to school. She wants to help families who have or will have a child with disabilities as a genetic counselor, which will require a Master’s degree. Most importantly, we’ve done a tremendous amount of healing in these 12 months. We talk about Landon all the time, and are proud to tell his story if anyone asks. We can walk through the infant and children sections of department stores without blinders on, listen to music that talks about loss without crying, and were able to put away some of clothes and toys for now. We can talk about having future children. All of this progress doesn’t mean that we are leaving Landon behind. It just means that we are bringing him with us into our future the best way we know how.
I can do all things through Him who strengthens me. Philippians 4:13

Friday, March 21, 2014

Colossal Update

Spring break has finally arrived for us at the Shrader house and I’ve finally been able to catch up on the things I’ve been putting off for the past 2 months. Among the many things that have been laid aside while I focused on school has been updating you all on Landon’s condition and events going on in his life. It has been an eventful time, as always, so this will be a lengthy update and I’m sure I will still omit things.

To pick up relatively near where I last finished in late December, we finally had the opportunity to celebrate Christmas with our families over New Year’s. Travelling with Landon poses its unique challenges and so any trips we make now are planned far in advance and usually for an extended stay. We were fortunate to have 5 days to spend in Nebraska before we returned home for Karen to go back to work. Additionally, I had an abbreviated winter break this year and started classes on January 8. By starting the semester 2 weeks early, we are able to have 3rd year finals earlier and start my clinical rotations on May 12th. As of right now, I am 406 days away from being a graduated veterinarian, which seems like a very long time but I’m sure will go by quickly.

Shortly after the New Year our nurse Hannah informed us that she had been offered a job at a hospital in Junction City that she would be taking. Karen and I were incredibly disappointed because she was wonderful with Landon and was the only other person (other than Karen and myself) whose voice he recognized. However, what is best for us is certainly what is not what is best for everyone else and the improved benefits and room for advancement were just too great an opportunity for her to pass up. Fortunately, Hannah is still excited to babysit for us when need be so she can still get her fill of Landon time and he gets to hear from his best friend.

With the news of Hannah’s departure, Karen and I were left to search for a new nurse. This posed a more significant challenge this time around and has caused us continual problems since. Despite hours we thought were reasonable (10:30-6:30 M-F), no nurses through the agency we used were both capable of caring for him and available during those hours. Due to Landon’s disability, we are provided access to a nursing agency from which we are supposed to interview and select a nurse. We eventually were placed with a nurse who could accommodate most of the hours we required but who has missed a significant amount of work due to being in the late stages of her own pregnancy. We have recently decided to fire our current agency and explore others in order to find a situation that better fits Landon’s needs.

Part of the difficulty in finding a capable nurse for Landon is the level of physical effort required to care for him. Manipulating a 22 lb baby in order to clear his lungs when he chokes, lifting and swinging him to calm him, and holding him nearly all day to comfort him is seriously physically demanding. Landon has nearly outgrown Karen’s ability to lift him out of the crib or to flip him quickly to his stomach or side if he begins to choke. Because he is unable to assist us in any way, he is essentially dead weight when picking him up to change a diaper, clothes, or provide emergency medical care. We are fortunate to both be very young and able to recover quickly from physically exhausting days.

In February, Landon had a serious deterioration in health. In the middle of the night, Landon suffered a grand mal seizure. Early in the afternoon the next day, Landon had vomit that was tinged with blood. We watched him very closely and he recovered a bit but he still seemed very tired and weak. He wasn’t able to maintain his temperature either, fluctuating wildly between 102 and 92 degrees. The next day we noticed blood in Landon’s stomach again, prompting us to take him to the emergency room. Doctors there were unable to draw blood from him so they performed a ‘heel stick,’ drawing blood from a poke to his heel instead of from a vein. The results from the blood test were very worrisome, as Landon only had a hemoglobin level of under 5. This is extremely anemic as normal for his age should be between 10 and 13. This test measures his blood’s ability to take oxygen around his body.

The extremely low value on this test prompted us to drive Landon to Kanas City to Children’s Mercy Hospital. Even after driving in a car with the heat on full blast and Landon wrapped in warm clothes and layers of blankets, his temperature was only 91 degrees when we arrived at the hospital and falling. He had so little blood volume, even the specialized nurses at Children’s Mercy struggled to place and IV. He was placed in an incubator to raise his core temperature and was administered warm fluids. The night was a little harrowing but by early morning he was stable enough for me to feel comfortable driving back to Manhattan for class.

When I made it back to Kansas City that evening, Karen informed me that they had performed a reticulocyte count for Landon. Reticulocytes are the precursors to red blood cells. When your body doesn’t have enough red blood cells, your bone marrow should respond by making more and the overall population of cells should be younger. Normal levels in an infant should be between 2 and 6 percent and that number should rise significantly in an anemic baby. Despite being very anemic, Landon’s reticulocyte count was .5%. We agreed to a blood transfusion and waited for test results as to why his count was so low. Doctors determined that his bone marrow was not producing red cells anymore. We aren’t sure if this is due to a neurologic dysfunction or inability of his gut to absorb nutrients but the end result is essentially the same. If his body does not respond, he will slowly become more and more anemic until he becomes weak and passes away. The reality of this is that transfused red blood cells only survive for 60-90 days and we are predicting that 2-3 months from now we will see a decline in Landon’s health.

Landon was released to come home with us after a week of being hospitalized. After we were settled back at home, we contacted hospice care to help us make Landon more comfortable during his time at home. We started him on several new medications as well, including Clonidine (a sleep aid and helps with headaches and tremors), ranitidine (an antacid in Zantac), and Oxycodone (for pain control). He gets visits from nurses once or twice per week to help check on him but has otherwise stopped going to doctor appointments. If anything urgent comes up, hospice is also able to arrange for home visits from the doctor which will be a great help.

Recently, Landon has had a tooth erupt. Unfortunately, he is unable to feel his tongue and has started to erode the bottom of his tongue on the tooth edge. The wound he has created is very deep; almost half the full thickness of his tongue. Of concern is that he will rupture a large lingual vein or artery and have significant bleeding. With an already reduced ability to replace red blood cells, losing lots of blood from his tongue is obviously dangerous from that aspect, as well as a choking hazard. We have consulted with a pediatric dentist in town and may be able to get silicone caps glued to the tops of his teeth as they erupt to minimize the damage he does to his tongue.

The greatest risk to his tongue occurs when he has seizures, which we have seen a significant number of recently. As I’ve mentioned before, Landon holds his breath when he cries. This breath holding triggers him to seize and bite his tongue. More importantly, he sometimes goes into cluster seizures, having multiple powerful seizures in close succession. In the case of a cluster seizure, without early intervention, Landon could go into a constant seizure that doesn’t stop and can be fatal. This condition is called status epilepticus. To prevent this from happening we use a drug called diazepam as a suppository to halt his seizures. This past weekend Landon had 2 cluster seizures in 3 days, expending our store of diazepam. We were able to get another drug called lorazepam on short notice until a new delivery of diazepam can arrive.

On the whole, Karen and I are doing pretty well. Nights can get long sometimes and it is always stressful to have a very sick baby to listen for but we manage. Every day is a mix of trying to enjoy ourselves a little bit and still do what we have to do for work, school, and Landon. We are having family pictures this weekend to celebrate Landon’s first birthday which will be on April 16. We were told 1 year was all we would have and based on our experience so far, I think it has taken several miracles, hard work, and dedication from lots of people to reach this point. Every day we get with Landon is a blessing and we are still just trying to pack as much love as possible into the time we have with him.

“Strength and growth come only through continuous effort and struggle.” – Napoleon Hill

Tuesday, December 24, 2013

The end of the semester and a Merry Christmas

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

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

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

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

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

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

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

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

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

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

Tuesday, October 15, 2013

Appointments and Community Support

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

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

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

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

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

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

"Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained." - Marie Curie
Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained

Wednesday, September 18, 2013

Struggles with medicine

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

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

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

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

Saturday, September 7, 2013

Settling into our routine

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

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

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

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

Thursday, August 29, 2013

Dr. Knopp follow-up

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

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

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

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

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

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