Tomorrow morning, I'm flying out with Javy for his surgery on Wednesday. He has to get the battery changed on his baclofen pump, which only lasts about six years. Basically, baclofen is a muscle relaxer and the pump puts the medicine directly into his spine so that its utilized more efficiently with less side effects. Javy's muscles are so tight that if he didn't have the baclofen, we would have a hard time keeping him clean because is legs would be curled up and hard to move so that we could rinse and wipe him off. Also, he'd be in a lot of pain when he slept from his muscles being so tight. I'm not going to get all technical. If you're interested, let me know and I'll share some links from some Youtube videos that show other kids with their baclofen pumps.
What's on my mind is all the preparations that I've made. I've made reference to my Honolulu trips before in previous blogs and I've learned from my mistakes. We're going to be there for three days, one night in a hotel and one night at the hospital, flying home Thursday night. It's pretty cut and dry, but this time I am not taking any chances. First, I chose the hotel we're going to stay at. It took me three days to make up my mind. I researched the prices, the actual hotel room, and the area. Did you know that on Google maps, you can actually view the street and tag whatever category you want to add to your map. I know, people freak out about Google but its pretty cool, I think. So I chose a Waikiki hotel (I'm not saying which one, stalkers!) My plan and research went in to where I can take Javy swimming at Waikiki. With the map, I can see the best sidewalk routes to take and then I researched the restaurants along the route and studied there menu, and chose one based on what Javy's favorite foods are. So my day, is perfectly planned out, from the airport to the doctor's office to the hotel to the beach and dinner, down to the bus routes because you can see those on Google maps, too.
Uh, yeah, Mother Nature may have different plans for us.
What's on my mind is all the preparations that I've made. I've made reference to my Honolulu trips before in previous blogs and I've learned from my mistakes. We're going to be there for three days, one night in a hotel and one night at the hospital, flying home Thursday night. It's pretty cut and dry, but this time I am not taking any chances. First, I chose the hotel we're going to stay at. It took me three days to make up my mind. I researched the prices, the actual hotel room, and the area. Did you know that on Google maps, you can actually view the street and tag whatever category you want to add to your map. I know, people freak out about Google but its pretty cool, I think. So I chose a Waikiki hotel (I'm not saying which one, stalkers!) My plan and research went in to where I can take Javy swimming at Waikiki. With the map, I can see the best sidewalk routes to take and then I researched the restaurants along the route and studied there menu, and chose one based on what Javy's favorite foods are. So my day, is perfectly planned out, from the airport to the doctor's office to the hotel to the beach and dinner, down to the bus routes because you can see those on Google maps, too.
Uh, yeah, Mother Nature may have different plans for us.
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| Kauai today, Oahu tomorrow |
Apparently, the front that moved into Kauai tonight, will be in Oahu tomorrow. As I sit here drinking, my pre-nighty night cocktail and allergy elixir, I have plotted out Plan B-A trip to the Whole Foods Market to look for Buckwheat flour, take out pizza and movies on Netflix at the hotel. I just wanted a special day, before the little guy has to go under. Whatever it is, it will be an adventure.
Main thing is that I keep on target. The kid can't eat anything Wednesday morning so I'm sure I'll be getting that "WTH, mom!" look when he wonders why I haven't fed him. I have to collect urine from him Tuesday night which means I have to put the little urine bag over him and pray that some stays in. I don't think the doctors realize how hard it is to get urine samples from non-potty trained kids. It's for a genetic test and it has to get to the lab before 10am. So Wednesday morning, I'm going to be riding the bus to the hospital with a kid giving me stink eye and a cup of urine. Yeah, I want to have a good day, tomorrow.
Today, I made sure that I packed all the necessities. Here's the thing about our trips, its me pushing a wheelchair and riding a bus, so I gotta fit all of our stuff into two backpacks. They are packed with all of my stuff: a hanging around the hospital all day outfit, a lounging around a hospital room outfit, a going home outfit, underwear, two t-shirts (one for sleeping and one for backup), a swimsuit, reading material, various forms of money, doctor's paperwork, my medicine, toiletry bag, cough drops. There's Javy stuff: shirts and shorts, wash clothes, bandanas, his medicine, diapers, wipes, blanket and Mickey Mouse (for comfort) and his ipad. And chocolate chip cookies for the outstanding Hawaiian Airlines employees who always take care of us, the nursing staff who will take care of us and whoever else just needs a cookie.
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| Will it all fit? |
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| Barely! |
I had to add an extra bag, not sure if that will work. I'll let you know, tomorrow! Send us good thoughts, its going to be a good adventure!
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