We began the process of weaning Landon off the Prednisolone (steroid) a few weeks ago. He was doing fine until last week, when we dropped down to the lowest dosage before quitting completely. Last Wednesday we began to see blood and mucus in his stools again. I was heartbroken. I want so badly to get him off of this medication.
In the last several days, the mucus and bleeding has increased, his stools have become less formed and more watery. After talking with our doctors, we have made the decision to continue with the Prednisolone at this time. Unfortunately, Landon's body just isn't healed enough to come off that medication just yet. It's a relatively low dose, which makes me feel a little bit better.
We are also planning to restart the treatments we initially started when we went to Portland in February.
It breaks my heart to see him going through yet another flare up. I just want this over for him. I am struggling somewhat emotionally. It is incredibly challenging to have a chronically ill child. I have to remind myself daily (sometimes several times a day!) that things could be much worse. He IS healing and IS improving. It's just difficult to not let my mind wander back to where we once were.
Prayers are needed and greatly appreciated.
Wednesday, May 30, 2012
Tuesday, May 22, 2012
Night Wanderer
Last night was the third night in a row that Landon went to sleep in his own bed, with Daddy's help. At around 2:00 a.m. I heard a cry from his room and he said, "Mommy!". I sat up to go check on him, then he got quiet. I assumed he was ok and tried to go back to sleep. I tried and tried to fall back asleep and was having no luck. I checked Facebook. I caught up on Words with Friends. I thought about all the things I could get up and do.
Around 3:30 a.m. I got up to use the restroom (TMI??) and I noticed Landon's door was open. I went in to check on him and he wasn't there. Enter, Panic Stricken Mom. The first thing that went through my mind was, "someone has broken in and stolen my child!". Yes, I realize to some of you that may sound completely insane. However, I know some of you reading are shaking your heads in agreement and understanding, knowing you would have thought the same thing.
Back to the story. I ran in to the living room and made a quick sweep. He wasn't there. I continued on to the kitchen, flipped on the light, and glanced around. Then I saw him. He was sitting quietly on the bottom step in the basement, holding his blanket. He saw me (I'm thinking he only saw my shadow at that point) and said, "Daddy". I flew down the stairs, scooped him up, held him close and began to cry. He must have been sitting there for an hour and a half! In complete darkness. Sitting. Holding his blanket and waiting. Before Scott put him to bed, I gave him a kiss and went downstairs. I believe he thought that's where I still was when he awoke in the night.
Guess where he got to sleep for the remainder of the night? Yep, our bed.
Around 3:30 a.m. I got up to use the restroom (TMI??) and I noticed Landon's door was open. I went in to check on him and he wasn't there. Enter, Panic Stricken Mom. The first thing that went through my mind was, "someone has broken in and stolen my child!". Yes, I realize to some of you that may sound completely insane. However, I know some of you reading are shaking your heads in agreement and understanding, knowing you would have thought the same thing.
Back to the story. I ran in to the living room and made a quick sweep. He wasn't there. I continued on to the kitchen, flipped on the light, and glanced around. Then I saw him. He was sitting quietly on the bottom step in the basement, holding his blanket. He saw me (I'm thinking he only saw my shadow at that point) and said, "Daddy". I flew down the stairs, scooped him up, held him close and began to cry. He must have been sitting there for an hour and a half! In complete darkness. Sitting. Holding his blanket and waiting. Before Scott put him to bed, I gave him a kiss and went downstairs. I believe he thought that's where I still was when he awoke in the night.
Guess where he got to sleep for the remainder of the night? Yep, our bed.
Monday, May 21, 2012
Doctors Who Really Care
There is nothing that feels better than knowing others care about you. It just feels good.
Today I received a call from the office of the first GI doctor who treated Landon in December, Dr. Lana Hattar. I credit her for saving him and she was the person who first diagnosed him. She is amazing. You can read a little more about my connection with her here. We were transferred to Children's Mercy and have continued all of our care there, with another wonderful doctor.
Dr. Hattar just returned from maternity leave and had been thinking about Landon. She asked her nurse to call and check in on him. She was thinking about our son, who she only saw a handful of times and hasn't seen since the first part of January. She has a full schedule of other patients, knows we are continuing care in KC, yet she still takes the time to think about and check in on us. That. Is. Truly. Awesome.
Today I received a call from the office of the first GI doctor who treated Landon in December, Dr. Lana Hattar. I credit her for saving him and she was the person who first diagnosed him. She is amazing. You can read a little more about my connection with her here. We were transferred to Children's Mercy and have continued all of our care there, with another wonderful doctor.
Dr. Hattar just returned from maternity leave and had been thinking about Landon. She asked her nurse to call and check in on him. She was thinking about our son, who she only saw a handful of times and hasn't seen since the first part of January. She has a full schedule of other patients, knows we are continuing care in KC, yet she still takes the time to think about and check in on us. That. Is. Truly. Awesome.
Sunday, May 20, 2012
Go Away
Landon has recently started saying, "Mommy go away" and "Daddy go away" when he wants to do something on his own. We have been reminding him that it isn't nice to tell people to go away. So, now he looks at us with his darling smile, uses his sweetest voice and says, "Daddy go away, please." It's tough not to laugh. Who am I kidding, we both turn our heads and chuckle every time.
Saturday, May 12, 2012
Friday, May 11, 2012
2nd Birthday
It's true, our baby is TWO! Somebody please tell me how that happened so quickly?!
We had a lot of fun celebrating with him. We had an Elmo themed party this year and boy was he excited to see "Elmo's, Elmo's EVERYWHERE!" when he woke from his nap! It was a perfect day with some of his favorite people.
This birthday was extra special considering all he has endured the last 9 months of his life. He was able to enjoy his party, happy, mostly healthy and in full healing mode!
He did NOT enjoy everyone singing Happy Birthday at him. He kept saying, "NO HAPPY BIRTHDAY!" It was actually very comical and cute.
He really got in to the whole opening presents thing for the first time in his life. It was magical and precious to watch his face and eyes light up as he tore through all the paper on his gifts. After his party was over, a few of our friends stayed over to visit. Landon was so happy that he played on his very own in the backyard for at least 30 minutes. Those of you who know him, know this is a huge deal! He is usually practically attached to me, rather, he was following all of his health issues. It was a glorious moment for me to see him engaged in independent play. He was content and happy.
One thing I am still trying to wrap my head around is how he became a toddler in the blink of an eye. Happy 2nd Birthday to our Boy Wonder!
Here are a few photos for you. Enjoy!
We had a lot of fun celebrating with him. We had an Elmo themed party this year and boy was he excited to see "Elmo's, Elmo's EVERYWHERE!" when he woke from his nap! It was a perfect day with some of his favorite people.
This birthday was extra special considering all he has endured the last 9 months of his life. He was able to enjoy his party, happy, mostly healthy and in full healing mode!
He did NOT enjoy everyone singing Happy Birthday at him. He kept saying, "NO HAPPY BIRTHDAY!" It was actually very comical and cute.
He really got in to the whole opening presents thing for the first time in his life. It was magical and precious to watch his face and eyes light up as he tore through all the paper on his gifts. After his party was over, a few of our friends stayed over to visit. Landon was so happy that he played on his very own in the backyard for at least 30 minutes. Those of you who know him, know this is a huge deal! He is usually practically attached to me, rather, he was following all of his health issues. It was a glorious moment for me to see him engaged in independent play. He was content and happy.
One thing I am still trying to wrap my head around is how he became a toddler in the blink of an eye. Happy 2nd Birthday to our Boy Wonder!
Here are a few photos for you. Enjoy!
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| About 9 months old |
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| First Smile - 6 weeks old |
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| First days home from the hospital |
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| First days home from the hospital |
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| Halloween 2011 |
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| Halloween 2011 |
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| 19 months old |
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| Christmas Eve 2011 |
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| 21 months old |
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| 2 years old! April 26, 2012 |
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| Dr. Landon - 2 years old |
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| Just waking from his nap the day of his party |
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| Landon's cousins - Katie and Becca |
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| Birthday Meatball! |
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| Cupcakes for our guests |
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| "NO HAPPY BIRTHDAY!" |
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| My sweet family |
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| Happy now that he has his meatball and nobody is singing at him :-) |
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| Presents! |
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| More presents! |
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| Helping Daddy with his cool new guitar |
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| The pants are off and this kid is thrilled! |
Bubbles.
Landon loves bubbles! He especially likes this new bubble toy he got from his friends Zane and Zoey at his birthday party a couple of weeks ago. Just a push of a button and it distributes bubbles galore!
Thursday, May 10, 2012
Spring
We are loving the gorgeous weather! Landon gets to play outdoors and help water our plants, which is one of his favorite things right now.
Happy Spring!
Happy Spring!
Monday, May 7, 2012
Childrens's Mercy Hospital Stay 1: Part 2
This is a continuation. You'll find the first part here.
Wednesday afternoon I was on the computer just outside of our room, while Landon slept on Daddy's chest. I saw a man wearing surgical scrubs enter our room. I quickly rushed in behind him. He introduced himself to Scott and I then sat down. He began to explain the process and procedures surrounding the complete removal of a colon. I felt a wave of anxiety come over me and wasn't sure I was hearing things correctly. Was he saying Landon was going to need this surgery. So I asked that exact question. His response to us was, "I spoke with the doctor who performed Landon's colonoscopy. He is highly experienced and has been doing this work for over 30 years. He told me Landon's colon is one of the most severe cases he has ever seen. He needs to have his colon removed and we are putting him on the schedule for Friday morning". I began to weep. The surgeon continued with his medical explanations but all I could do was look at my son, sleeping in his Daddy's arms, and cry. We shook hands and the surgeon left our room, after about 30 minutes of talking and answering our questions. Scott and I hugged. We both cried.
Our parents came in and we talked with them about what was before us and the life changing event that was to take place Friday morning. They were all very understanding and supportive of whatever Scott and I needed to do as parents. We were all very emotional and upset. They left that evening to go back to Wichita. Scott and I talked more about what was happening and by the time he left to go back to The Ronald McDonald house, we had resigned ourselves that our baby boy would undergo surgery in just 2 days.
I was posting regular updates to Facebook for all of our family and friends back home, however, this is something I didn't post. I just couldn't bring myself to put it in to writing. I was terrified.
After Scott left that night I called a dear friend. She and I talked for over an hour and I shared with her what had transpired that day. She was completely supportive and loving, encouraging me to follow my heart while listening to my gut.
I was unable to fall asleep, even after saying my nightly prayers. I decided to pray again. This time I pleaded with God, over and over again. I prayed, "Please God, please tell me what we are supposed to do. I need a very clear answer. If you simply give me a sign I don't think I will see it. Please, God, please. Tell me what we are supposed to do. Clearly show me. I am trusting YOU to show me. Please God. I am lost. I don't know what to do." I repeated this for at least an hour then finally went to sleep around 2 a.m.
The nurses at Children's Mercy are fabulous. They come in every few hours through the night and change diapers so the parents can rest. I didn't see any of the diapers they changed that night.
The next morning I woke up feeling sad. Landon seemed ok, all things considered. Our team of doctors walked in and they were all smiling. I thought, "how can you all be smiling at a time like this?!" Then, one of them spoke up and said, "Well, it's amazing! All of his bleeding has disappeared overnight! We will be taking him off the schedule for surgery tomorrow morning." I cried. In that moment I looked down at Landon, who was on my lap, and silently thanked God. I would say that's the clearest answer I could have been given. I still thank God every single day for providing me exactly what I needed during my time of weakness and struggle.
The next few days just got better and better. Landon was able to come off the IV nutrition and was eating real food again. We got news that we may be able to get home in time for Christmas! Aunt Shannon came to visit, which was a real blessing. It was just 3 days until Christmas! While she was there, Scott and I got to leave the hospital for a few hours. We very quickly went to Target and Legends, where we were able to finish up our shopping. It felt so good to be out together and feel somewhat normal again.
We were released from the hospital Christmas Eve morning. We received our Christmas miracle! Our appreciation for fresh air, outdoors with our little darling, was intensified. We made it.
Wednesday afternoon I was on the computer just outside of our room, while Landon slept on Daddy's chest. I saw a man wearing surgical scrubs enter our room. I quickly rushed in behind him. He introduced himself to Scott and I then sat down. He began to explain the process and procedures surrounding the complete removal of a colon. I felt a wave of anxiety come over me and wasn't sure I was hearing things correctly. Was he saying Landon was going to need this surgery. So I asked that exact question. His response to us was, "I spoke with the doctor who performed Landon's colonoscopy. He is highly experienced and has been doing this work for over 30 years. He told me Landon's colon is one of the most severe cases he has ever seen. He needs to have his colon removed and we are putting him on the schedule for Friday morning". I began to weep. The surgeon continued with his medical explanations but all I could do was look at my son, sleeping in his Daddy's arms, and cry. We shook hands and the surgeon left our room, after about 30 minutes of talking and answering our questions. Scott and I hugged. We both cried.
Our parents came in and we talked with them about what was before us and the life changing event that was to take place Friday morning. They were all very understanding and supportive of whatever Scott and I needed to do as parents. We were all very emotional and upset. They left that evening to go back to Wichita. Scott and I talked more about what was happening and by the time he left to go back to The Ronald McDonald house, we had resigned ourselves that our baby boy would undergo surgery in just 2 days.
I was posting regular updates to Facebook for all of our family and friends back home, however, this is something I didn't post. I just couldn't bring myself to put it in to writing. I was terrified.
After Scott left that night I called a dear friend. She and I talked for over an hour and I shared with her what had transpired that day. She was completely supportive and loving, encouraging me to follow my heart while listening to my gut.
I was unable to fall asleep, even after saying my nightly prayers. I decided to pray again. This time I pleaded with God, over and over again. I prayed, "Please God, please tell me what we are supposed to do. I need a very clear answer. If you simply give me a sign I don't think I will see it. Please, God, please. Tell me what we are supposed to do. Clearly show me. I am trusting YOU to show me. Please God. I am lost. I don't know what to do." I repeated this for at least an hour then finally went to sleep around 2 a.m.
The nurses at Children's Mercy are fabulous. They come in every few hours through the night and change diapers so the parents can rest. I didn't see any of the diapers they changed that night.
The next morning I woke up feeling sad. Landon seemed ok, all things considered. Our team of doctors walked in and they were all smiling. I thought, "how can you all be smiling at a time like this?!" Then, one of them spoke up and said, "Well, it's amazing! All of his bleeding has disappeared overnight! We will be taking him off the schedule for surgery tomorrow morning." I cried. In that moment I looked down at Landon, who was on my lap, and silently thanked God. I would say that's the clearest answer I could have been given. I still thank God every single day for providing me exactly what I needed during my time of weakness and struggle.
The next few days just got better and better. Landon was able to come off the IV nutrition and was eating real food again. We got news that we may be able to get home in time for Christmas! Aunt Shannon came to visit, which was a real blessing. It was just 3 days until Christmas! While she was there, Scott and I got to leave the hospital for a few hours. We very quickly went to Target and Legends, where we were able to finish up our shopping. It felt so good to be out together and feel somewhat normal again.
We were released from the hospital Christmas Eve morning. We received our Christmas miracle! Our appreciation for fresh air, outdoors with our little darling, was intensified. We made it.
Friendship
I have been thinking a lot lately about what being a friend really means to me. I am very fortunate to have a dynamic, eclectic group of people who I get to call friends. Here's a short list I came up with, in no particular order:
- laugh together often
- hug each other
- love without judgement
- be there for one another, in happy times, in times of sadness, all the time, even if it doesn't seem convenient
- tell each other often how you feel about your relationship
- go above and beyond
- never take one another for granted
- take time to nurture your friendship, for if you don't it will wither and deteriorate
- show up, both physically and emotionally
- keep in touch...it's really easy with all the cool technology these days
- approach one another with love, compassion and kindness
- be vulnerable...if you aren't it makes it hard for others to be your friend
- forgive...we are all human and will make mistakes
To all of my beautiful, handsome, lovely friends, I LOVE YOU!
- laugh together often
- hug each other
- love without judgement
- be there for one another, in happy times, in times of sadness, all the time, even if it doesn't seem convenient
- tell each other often how you feel about your relationship
- go above and beyond
- never take one another for granted
- take time to nurture your friendship, for if you don't it will wither and deteriorate
- show up, both physically and emotionally
- keep in touch...it's really easy with all the cool technology these days
- approach one another with love, compassion and kindness
- be vulnerable...if you aren't it makes it hard for others to be your friend
- forgive...we are all human and will make mistakes
To all of my beautiful, handsome, lovely friends, I LOVE YOU!
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