Tuesday, August 27, 2013

Neet Feet

How to start this blog post...Landon received the most amazing gift today, a pair of shoes. Yes, you read that right, a pair of shoes. He received a pair of Peach's Neet Feet, they are a non-profit organization that has artists that hand paint shoes for amazing children such as Landon who have terminal and life long illnesses. You can find Peach's Neet Feet Here or on Facebook Here. They do amazing work, and help children to be brave as well as reward them for the tough medical issues that they go through in life. The artists volunteer their time and expertise to paint the shoes for these kids, which are paid for by sponsors. We are truly blessed to have them choose Landon for one of these amazing pairs of shoes.

As you can see from the above picture, he choose Jake and the Never Land Pirates as his 'theme' for his shoes. He was beyond excited, thrilled, whatever adjective you want to use to describe how incredibly happy he was to receive his shoes today. We are currently looking for the perfect 'pay it forward' to repay this amazing act of love and kindness that was bestowed upon Landon. He can't wait to wear them everywhere, but most especially to his Tgen Kickoff Party for the P.F. Changs Rock n' Roll Half Marathon here in AZ which happens to fall on his 5th birthday...perfect, right? I will be running for Landon, and would love to have a team to run with...if not, please run with us in spirit. His team information is here - Team Landon - Tgen Rock n' Roll for Rare Diseases.

Please give Peach's Neet Feet a like, and help us spread the word about such an amazing group that brings happiness to kids with rare and terminal diseases. They are doing amazing work, and we are blessed to have them show love to Landon and Mito.
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Monday, August 5, 2013

I hate this disease.

Hate is a strong word, and not one I use loosely or very often, but when it comes to VLCAD and Mitochondrial Disease it definitely fits. Rewind to this morning, today was supposed to be Landon's first day of Preschool. He was giddy with excitement to start at 'The Clubhouse' this morning, which is where his school has their Preschool Program. He's been talking about it for weeks, and went to visit in the mornings last week with his 4 year old class. 

This morning was pretty normal, as far as normal is in this house with meds and such. Landon was excited, but was being defiant which isn't abnormal for his age and when he's excited about something and not listening. He told me his tummy hurt, so I made him go potty. He seemed to be ok, but right before we walked out the door he said he was sick. I gave him a hug and felt his head, and he was hot and clammy. He then proceeded to puke 5 times all over the entry tile, and then more in the toilet. Insert change of plans here.

So I get E situated and off to school, and Landon and I head straight to TMC. We get there, hand them our protocol letter (thank God for these), and they take him right back. They're starting to get to know us there, we had an ER doctor that we had had before so it made things easier and she did remember him immediately. They take vitals, ask what's going on, and get right to helping him. He had an IV placed after they drew blood to draw labs and a full metabolic panel. They put some zofran in his IV to stop the vomiting, and then had him pee in a cup. Convincing him to pee in a cup is always a bit hilarious, he always tells me that, 'we don't pee any where except in the potty mommy.' He does listen, some times :D 

After a full bag of D10 Maintenance Fluids, we were able to get his labs back. His labs looked really good, but he did have +1 Ketones in his urine. They didn't believe this was enough to keep him, so they let us go with a zofran Rx and instructions to return if he started vomiting again, regular protocol for us anyways. The Geneticists called later and said he wasn't happy they let us go, but to 'pump him full of sugary fluids and calories.' 

Landon seems to be doing very well tonight, he likes to throw us for loops in the middle of the night so tonight will be very telling. I am relieved that they didn't keep him, and he came home and rested for the rest of the day. 

I hate this damn disease, I hate that it took a day from him that he was so excited to finally have come. Yes, he can have his 'first day of preschool' tomorrow, but it won't be the same and with all his other friends from his class. My four year old shouldn't be able to tell you step for step what happens when he has to go to the 'hospital.' Sorry for my mini rant, I just wish he could not be stripped of normal childhood things because he has to deal with this stupid disease. 

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