Monday, June 24, 2013

Handling the Tough Days Pt. 2

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

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

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

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

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

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

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

Sunday, June 16, 2013

Diaper Rash Solved

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

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

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

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

Tuesday, June 11, 2013

Messages from past generations

Our adventure with Landon has found us at a thick jungle lately, with seemingly lots to do but feeling like we're going nowhere. The good news with Landon is that he has not had a seizure in three weeks and continues to grow in strength, weight, and length. The difficulty for Karen and I is that his added stamina fuels longer and longer crying sessions. Today he has been fussing off and on since before noon. I just slipped away now, at 1 am, to write the blog and I can still hear him going in the basement. He has no fever, he is digesting his food well, and his diaper rash has cleared up pretty nicely. Frustratingly, nothing we do seems to help. He isn't screaming but rather just whining and fussing. We looked for incoming teeth and found nothing. Temperature changes seem to help momentarily and then he'll start up again. Hopefully he will have worn himself out soon. He does fall asleep occasionally but as soon as he wakes up the fussing starts again. I can safely say that all three of us are exhausted.

We did have the opportunity to visit my Grandpa Charles this afternoon so that we could check up on him after a recent surgery and so that he could see how much Landon has grown. My Aunt Sherri came by to visit while we were there and I know they both enjoyed getting a chance to hold the Little Goat, even if he was fussy. We met my sister, brother-in-law, and niece in Lincoln to celebrate my mom's birthday over dinner. Normally car rides lull Landon right to sleep but today we had no such luck and he remained grouchy to and from Grandpa's and the restaurant. We still had fun at dinner and I would like to congratulate both my Mom and my Mom-in-law on their recent birthday (June 3rd and 5th respectively). We were able to celebrate Denise's birthday on Saturday evening with dinner, cake, and a movie as a family.

With as much counsel as we have received from parents and grandparents, we recently had a curious interaction with an older relative. One of the many generous gifts we have received for Landon was a collection of money and card of well-wishes from my dad's coworkers, whom also happen to be my former high school and elementary school teachers. Many bible verses of strength through difficult times were on the card but one, from my former calculus teacher Mr. Hill, was foreign to me. He referenced Habakkuk, a book I was only vaguely remembered existing, chapter 3, verses 17-19. The book of Habakkuk is only about a page and a half long and I'm sure I've only ever skimmed through it when reading before. To read the verses, my mom grabbed my great grandmother Clark's Bible, which sits next to my parent's loveseat ornamentally. This particular Bible hadn't been read since my great grandmother's death, long before I was born, but it was accessible and the quickest way to look up our mystery verse. Grandma Clark had left a bookmark in her Bible when she passed away and we were all shocked to discover that the bookmark was left in the exact book, in the exact chapter, and on the exact verses Mr. Hill had suggested.

Though the fig tree does not bud
    and there are no grapes on the vines,
though the olive crop fails
    and the fields produce no food,
though there are no sheep in the pen
    and no cattle in the stalls,
18 yet I will rejoice in the Lord,
    I will be joyful in God my Savior.
19 The Sovereign Lord is my strength;
    he makes my feet like the feet of a deer,
    he enables me to tread on the heights.
For the director of music. On my stringed instruments.

For further background, my Great-Grandmother Clark, mother of my mother's mother, lost her own baby boy after only nine hours to an unknown illness. This woman would have read the Bible daily, gathering her strength and solace from the words of God. Perhaps it is coincidental the in our time of greatest need, we had her Bible with the verses she went to for comfort in her own darkest moments. It might be by chance that a former role model's guidance brought us to her Bible and to look for those some words. We aren't big believers in coincidence, chance, and luck though.

I will collaborate all the verses we have been guided to and list them for your leisure in a future blog. We believe the strength and courage available in these texts can help those in need, no matter the situation. There is guidance all around us, from family, friends, and beyond that we hope to share with any who need it. We thank God for the community around us daily and hope that all of you will have the opportunity to meet Landon someday.

Wednesday, June 5, 2013

Rolling over

Karen and I have really been enjoying our time back in Kansas so far. It has been wonderful to see some old friends and I have been very fortunate to extern at the Blue Hills Animal Hospital this week. Landon must be enjoying Kansas as well because he has really had some good days and nights these past few days. While he still cries during the night, we can usually get him to fall back asleep sooner rather than later. He has begun having fussy periods during the day but fussing during the day is a thousand times more tolerable than in the middle of the night.

I was spurred to blog today by a huge accomplishment by Landon. His physical therapist came to our home today while I was at the vet hospital and worked with him on developing muscle tone and checking his development. According to her, Landon has near normal levels of mobility and physical milestones. He is still weak and has poor tone but he really is making strides and keeping up with his age group much better than expected. We couldn't be happier with where he is at right now. He even rolled over for the therapist today, once while asleep and again after he was awake. He rolled from both front to back and back to front, which is actually a step ahead of the curve. Some of his muscles are very strong but unfortunately others are weaker than would be expected.

Recently, I have been gone during the majority of the day and have only been home at night. I know it is hard on Karen to care for Landon by herself for most of the day but she has been so resilient and hasn't complained. As we continue to progress through the difficulties we encounter, I am frequently reminded of the amazing blessing of her in my life. I couldn't be luckier and I try to remind her every day of how incredible she really is.

Lately, Landon has been suffering from some significant diaper rash. Karen even thought one spot may have had a bit of blood. It has cleared up some over the last two days but we really have been baffled by this occurrence. Nothing has changed in our daily routine or in Landon's and we are really stumped as to why this new annoyance started. At the least, we are now acutely aware of any time he has a dirty diaper and are sure to lather on the A&D ointment with each change. Maybe this is another growing pain that will diminish as he matures.

We have received several wonderful gifts in the mail lately and Karen and I wanted to express our admiration for all of your creativity and ability to find goats! We could probably decorate Little Goat's room entirely in goat d├ęcor now if we so wished. Anyway, we are so pleased with everything and recognize our good fortune. No family could expect support like this.

I may sound in a bit of a hurry tonight and I suppose I am. Working all day and caring for Landon when I get home can definitely wear on a person and I am realizing that I've lost a bit of my talent for staying up late that I had during school. We are looking forward to seeing our families again soon but right now we are enjoying our time in Manhattan and trying to rest as much as possible.

Happiness is only real when shared.