Keep on keepin' on

Here is that longer update that I promised :)

I'll start off with some recent pictures. Since pictures are worth a thousand words I'll share some of Landon's latest adventures.

2nd Birthday Party- Bubble Guppie Bash

 He decided he would rather mow most of the time...

 ..And blowing out the candles (which I always forget and have to have someone run out and buy!)

Myrtle Beach 2014 - He had such a better time at the beach this year since he was able to walk.

Adventures at St. Louis Zoo

The many faces of Landon..

..and his newest obsession- boots. He only wants to wear boots.

As you can see he got his first real haircut. It was actually an accident. His hair looked cute long, but the back was growing faster and it was starting to look like a mullet. I tried to trim it up and botched the job, so I tried to fix it with clippers. He went crazy and wouldn't sit still and I accidentally buzzed a streak down the middle of the back of his head. The only way to fix it was to buzz the rest. He looks really blonde with his hair short, and it really made him look grown up.

Our summer has been going great. We have been doing the best kinds of physical therapy- hours of swimming and playing at the park. He loves to swim this year but doesn't like to do any work. He floats around the pool helplessly and tells his brothers to bring him toys. At the park he is able to do most things. Although his balance when he is walking and running is still so-so, his balance when he is climbing to go down a slide is amazing. He finally understands the dangers of falling off the edge and so he is able to play with Carson and Austin on the bigger things.

His expressive language is unbelievable. He's verbally expressing all of his wants and needs, commenting, requesting, and using 1-3 word phrases. I hear new words about every 10 minutes. His new favorite things are to tell me "no no" when he doesn't like what I'm asking him to do, and to tell himself "no." He asks for drinks of my tea and then answers his own question- "tea? no." After 2 years of rejection, he has finally decided he likes "ewww-t" or "juice" as we commonly call it. He always wants "more ewww-t mom." Just like his brothers, he is hilarious and adds even more laughter to the household now that he is talking.

Speaking of the household, like I mentioned before, it has expanded again. In March we finished classes and paperwork to get our license to become foster parents. In the beginning of May, a beautiful 2 year old girl "Princess S" came to live with us. It is so awesome having a girl in the house. I can't tell you how much I've enjoyed buying pink, frilly things, painting her toenails, and putting bows in her hair! She is absolutely perfect. She's girly, but she also likes to keep up with the boys and doesn't mind getting dirty. We're enjoying our time with her and trying to fill every day with fun and quality time like it will be our last, although we are planning to adopt her if she is unable to return home.

It has worked out perfectly that she is the same age as Landon. They enjoy playing together about half the time, and the other half the time they fight like brother and sister. Landon hadn't spent much time around children his age before she came, so her being here modeling good use of language is probably what prompted him to start talking so much more.

Landon is still in good health and growing like a weed. He's now wearing 3T clothing! We had a scare a few weeks ago when his colostomy prolapsed. I emailed Dr. Levitt, and being the amazing surgeon that he is, he emailed me back at 11 at night to let me know that it was okay. Apparently it is more of a cosmetic issue and nuisance than medical issue. As scary as it was seeing his intestines protruding several inches outside his body, his colostomy continued to function and it returned to normal overnight. It was prolapsed 4 more times since then, but every time it has gone back down within a few hours. For now we are just keeping an eye on it. Prolapsing a few hours a week shouldn't be a problem, but if it gets worse and starts negatively affecting his quality of life we will have to consider reversing it sooner rather than later. We talked about going ahead and reversing it this summer or possibly in December, but decided we are too uneasy about the "what-ifs." Life is so good for him right now and he has so much momentum going with his development it's too scary to rock the boat and possibly end up dealing with chronic illness again.

As long as everything is going well I will drop in from time to time with some quick updates and news. I'm enjoying writing these type of posts rather than discussing hospital stays, surgeries, and difficult decisions. Thanks again to everyone that has followed Landon's story and kept our family in your prayers!

2 years..

It's amazing what a difference 2 years can make.

Two years ago today was the worst day of my life. Landon was only 6 days old at that point, and up until then we had fought the battle of our lives trying to convince medical professionals that something was wrong with our son. After 2 days spent in our local hospital while they did next to nothing, they saw that Landon was not getting better on his own. He continued to vomit bile, he wouldn't eat, and couldn't stay awake longer than a few minutes a day. It was at that point that they decided to transfer us to our local children's hospital 2 hours away.

I was only 6 days out from my c-section, and I was advised not to ride on the ambulance with Landon. I couldn't handle the thought of Landon beating me to the hospital and being alone while someone drove me up there. I signed a waiver and figured Barnes Jewish was right next door with an Emergency Room in case I needed to be stitched up again. Yes, the ambulance ride was excruciating. Yes, my incision did tear open some. But thankfully, no, I did not have to seek medical care for myself. That was yet another small event that could have drastically changed our outcome.

Landon and I went up to the General Medicine floor. We had about half an hour alone, and then another newborn baby boy came to the other bed in the room. The whole family, extended family, etc. also piled in, like they were having a small family reunion. I sat there alone, holding Landon, listening to their conversations, as doctors quickly started coming in and out and taking Landon's medical history. It was immediately a night and day difference from our experience at the local hospital. They wanted to do something to help Landon, and they wanted to do it right then. They ordered a spinal tap amongst other tests to be done that day.

Within an hour and a half of our arrival, they had already taken him back for the spinal tap. I wasn't allowed to go with him, and so I used the break to run down and get a salad from the cafeteria. Our nurse, Brandie, had been so great from the start. Since I was alone, she said she would go ahead and start his IV and then he could hang out in the nurses station to give me a chance to eat. I finished my food and let her know I was ready to Landon back. She handed him to me, and as she made the transfer, we both caught a glimpse of Landon's face. It looked flushed, but with dark purple, more like a bruise than the pink/red color that it normally would be. She started screaming for a doctor to come in right away. Dr. Patel was the first to make it in. She sat Landon on his bed and unsnapped his hospital top. His whole chest was splotchy and black. She yelled for someone to get stats on him right away. They did, and found that he had no pulse. They called a code and started trying to resuscitate him.

One of the nurses, or maybe a social worker, I don't remember who it was, but they pulled me out of the room. I don't remember walking anywhere. I'm still not sure if they wheeled me in there, but there wasn't a wheel chair and so I must have walked. They said I needed to call family. Instead, I asked for a chaplain right away to pray with me. We prayed for Landon, and she went closer to the room and prayed for him. Every 5 minutes they came in and said that they hadn't gotten him back, but they were still working on him. After this had happened 6 times, they said they could put him on ECMO (a baby heart and lung bypass system) to buy some extra time. After 35 minutes they came with the first of the good news to come. Landon has regained a pulse, and although he was on pressors to stimulate a heartbeat, he did have one. He was clinically alive and on his way downstairs to the PICU.

This time, I remember being asked if I needed a wheelchair or if I could walk. I tried to stand up, but my legs practically buckled underneath me. I took them up on the offer of the wheelchair, and they moved me down to the PICU conference room. They didn't put me in the waiting room, they put me in the conference room- the room they put you in when they are prepared to come in and tell you devastating news. And they did tell me devastating news. Brain injuries don't entirely occur while the brain is cut off from oxygen and blood, they continue to occur when the blood starts returning to the brain. This meant that we had to wait to see if Landon could maintain enough brain function to survive. Not enough brain function to walk, talk, crawl, or even have voluntary movement what-so-ever, just maybe enough to survive.

The next few days he started showing us that he was going to survive. He weaned off of the pressors and the ventilator. The team kept saying how impressed they were that he pulled through and that he was doing as well as he was. Since we couldn't take food into the PICU, John and I would walk to the restaurants nearby and eat outside on the patio. We would talk about what our life was going to be like when we brought Landon home. How as he got older we would need to make our house handicap accessible, as well as our vehicle. How I wanted to move to the next county over, so he would go to school in the special education co-op that I work for, which I feel has the most best special needs classrooms in the area. That sounds like a difficult conversation to have, but surprisingly to most I'm sure, that was one of the happiest conversations I've had in my life. We were talking about our baby boy's future, rather than how we were going to afford a funeral.

The last 3 days that Landon spent in the PICU were our "miracle" days. This was when he started going way above and beyond just surviving, he gradually regained all of the skills that he had prior to his cardiac arrest. He had all of the newborn reflexes back, he was breathing on his own with on and off oxygen supplementation, and he was able to suck on a pacifier. It is indescribable the amount of joy it brought to have our baby back. Even if he never gained another skill the rest of his life, just to have him back as he was before...

His MRI was on Friday, a week following his cardiac arrest. I told John that I had a funny feeling that we wasn't going to have brain damage at all. I'm sure he thought I was crazy, but sure enough, there was no detectible brain damage that showed up on the MRI from the incident. We smiled and thanked the neurologist, as this was a very short conversation. He summed it up by saying he couldn't explain how Landon didn't have brain damage. And the disclaimer that we would have to wait and see what Landon would and would not be able to do- that this was a very traumatic event, plus a long hospitalization, the possibility depending on the etiology of Landon's issues of repeat hospital stays, surgeries, etc. affecting his development, and so on.

The rest is history now. We went on to get Landon's Hirschsprung's disease diagnosis and his first colostomy surgery.

A year ago today, we were able to be released from our week long hospital stay just in time to not have to be in the hospital on this day to relive the memories. So definitely an improvement! But not as much as this year, when we mark over 6 months since Landon's last hospitalization! As well as he is doing since his last surgery, I never had to even entertain the possibility of him spending his 2nd birthday or today back in the hospital. What a difference 2 years makes!

I will update more with what's going on with our family soon. We have had some big changes involving Landon suddenly talking up a storm, and a new child that joined our family 8 weeks ago- a little girl that we are fostering while hoping to adopt (and yes the 4th child really will be the last child this time once we make it back to an even number :) ! Yeah I told you they were BIG changes! Since the last time I posted, we also went on Landon's 2nd vacation back to Myrtle Beach, and Landon had an awesome 2nd birthday. So a lot of updates and pictures to come soon!