Let me start by saying, this wasn't an easy post for me to write. I have hesitated all weekend because this is very personal. However, with vulnerability also comes an immense amount of support, which so many of you have selflessly given us. We have people ask about Landon on a daily basis. I cannot even formulate words to describe how it makes me feel as a Mama to have so many people who genuinely care about our little darling. Here is a small glimpse in to one of the ways we are helping Landon on his journey to prolonged optimal health.
Every 8 weeks, we make the 3 hour drive to Children's Mercy Hospital for Landon's continuing medical care. We have been doing this for almost 2 years now. In the beginning we went every 2 weeks, so to be at 8 weeks in between is great! Landon does really well during the trips there and back, which is a true blessing. We have movies for him to watch, books to read, songs to sing, crayons and coloring books. We also have snacks. Lots and lots of snacks.
Upon arrival, we head to the Outpatient Infusion Center. By this time, he is usually asking one question multiple times, which is, "Will it just be one poke?" Meaning, will they get his IV inserted on the first try. We reassure him and say our prayers that it will indeed, just be one poke. These days, it typically is. The past hasn't been so lucky but we're in the now kind of people so we choose to remain optimistic.
We head in to the procedure room where Landon gets his weight, blood pressure and temperature checked. He always wants to sit on either Mommy or Daddy's lap, he gets to choose. Then, it's time to insert his IV. Every time I silently say a prayer that it will be smooth and easy. Well, as easy as sticking a 3 year old can be anyway. Honestly, Landon does amazingly well. I guess he's somewhat getting used to it. After the line is placed, we move in to the room we will spend the next 3ish hours in. They give him 2 different oral meds to help if he were to have a reaction during his infusion. Again, I silently pray, this time for no negative reactions. Then he gets hooked up to his IV pump, chooses a movie, orders food and waits as the medication flows through his tubing in to his veins. Sometimes he falls asleep and others he stays awake the whole time. He sits with me, as we chat and pass the time.
Sometimes we also have a visit with his GI doctor, but this time we were able to forgo that part. He is doing so well that we only have to see her every 4-6 months.
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Blessings, blessings and MORE blessings...
ReplyDeleteand HOW does it get any better than this???
The "other" Leslee......better yet, "Auntie Leslee" : )
Thank you, Auntie Leslee!!! You are part of the reason Landon is doing as well as he is today. Lots of love to you! <3
ReplyDeleteLeslee, thank you so much for sharing this with all of us. What an intimate glance into your life and watching you handle it with grace and humor. Hoping that day by day he keeps getting stronger and stronger and is able to tolerate new foods.
ReplyDeleteThank you for your kind words, Michelle. It's not always easy to be so open but I'm hoping by being transparent we can help others. Sure appreciate your encouragement!
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