Boys had an okay day. Casey did his thing with Julie--some belly time, computer, radio, ipod, etc. Colin had Nancy H for half the day. After that Gene and I took turns hanging with him.
The most interesting thing of the day, and coinciding with SMA Awareness Month, is that my nephew dropped by with his girlfriend. They had just come from the geneticist, along with my other nephew and done their visit where they map out family history. The geneticist, from the same place, but different person, wanted some info so I managed to dig up some old papers from when we had Casey tested back in 1997. Not sure when they get their blood drawn but I hope it's soon. All they need to do if find out if they are carriers--if not, then they don't need to go any further. But, if they are a carrier, their partner should be tested.
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I am proud of the boys for taking this step (and I will say that I am also proud of my niece because she was tested before she had her first child). No one WANTS their child to have SMA but it is what it is and my boys wouldn't be 'my plumpie' and 'my collard green' if they were born without it. I'm just saying that I love my boys and they are my life and I love my life as it is because they are THEM. Of course, if Gene and I had had children without SMA we would be clueless and love our boys and not imagine our lives without them just the way we are living our lives now.
Random post from the past:
Down 1: Woke up with a pounding headache. I've realized that if I don't take my 5-htp at night, I get a headache by morning.
Down 2: Badly stubbed my toe on Casey's vent stand when I was getting him out of the shower.
Down 3: Casey had an absolute meltdown when Nancy R came at 7:00 to bring him to school. Not sure why. He likes Nancy R but she doesn't usually bring him to school. This was the first time this year. I really think he's missing Julie.
Down 4: Spent much of the morning trying to configure my computer so I can send stuff via Windows Mail/G-Mail. I can't quite explain it, but I was so very close but was still not successful even with help from Corey from SMA Space or Karen R!
Down 5: Call from Kathy at school. Casey not happy and not wanting to do anything or be in the classroom. I think they worked it out, eventually.
Up 1: Colin visits the car wash AND gets washed IN the car! Colin loves going to the car wash and watching the cars and pretending. One of my summer goals was to bring him in my car and actually go through the car wash. It was a beautiful day, Gene was around, school was done, so we decided to go for it. Nancy and Colin walked over to the car wash. Gene and I drove in my car. It was funny to drive up and see him in his stroller with Nancy waiting there for us!
We took the bipap and suction off of the cart and put it in my car. This bipap has a car adapter to run it so we didn't need the battery. Colin got settled on my lap with his bipap on (used the mask since it stays better than the nasal aires), Gene and Nancy got in and we drove around to the back.
We picked a Deluxe Wash (which really was the cheapest one, go figure) and started in. This is one of the ones that talk to you in the beginning and have the lights to go and stop. It's also a non-touch one, but it was very exciting and Colin had HUGE eyes and wanted more of each part in the cycle. We joked around and had a good time. Colin wants some Eco Carwash passes for Christmas if you're looking for a gift for him, LOL!
Then, we did a 'no-no' and drove with him on my lap to the diner and got a creemee. He thought it was very exciting! Nancy pushed the kart, minus Colin, and got a creemee, too. Then we drove with him, still sitting with me, home. Just for those of you who haven't been here, I could almost (well, if I was a baseball player) throw a rock to the diner ---the way the crow flies--- and via road, it's very short.
Didn't realize it but it was just about time for Casey to come home so we waiting for him. He was also in one of the moods where he's happy one second and then grumpy the next. They all decided to take a walk (after Nancy R had some oatmeal) but they were back very quickly since Casey was a grump.
Up 2: Colin WANTed to sit on the couch with me. Usually he just wants to be on his mattress and close to the TV but he WANTed to sit with me, sans bipap. So we spread him across my lap and got comfy and started to watch some Boomerang. It was nice...for about 3 minutes when I got a call from Apria...
Down 6: Trying to enjoy having Colin on my lap, Apria calls about Colin's nasal prongs that I ordered two months ago. I'm getting riled up here just thining about it again!! I called and gave the order and gave the product number I researched and found on my own. I've called and called about it. I've been thinking that the order was hung up in insurance or something. Called and called. Last week I finally email both the RT and the order person. No email back (aggravating in itself). Get a call today. IT WAS NEVER ORDERED!! Apparently, she couldn't find it in their system because it was never ordered before. So poor Colin has to suffer because he went up a size in something that is supposed to help him breathe???????? I had given her EVERYTHING, done all I could do from here, WHAT MORE AM I SUPPOSED TO DO? Then the RT keeps me on the phone while he checks the system and the computer. Like I needed to be on there while he did it??? I don't care where he finds it--just get it! I voiced my displeasure in a nice way but harsher than I usually do. I think for now on, everything I order from them I am going to do via email and CC everyone from the order person, to the RT, to the branch manager to the supervisor (I forget his title), just so I can have a paper trail and hope to get things done quicker. Now this is not the first time that this happened, either. We can't change vendors because Cigna does not give us a choice.
Down 7: After I got off the phone, I realized that we never got our space suction switched out. A week or two ago Casey's suction was sounding weary so I swapped it out with the fresh spare we had. Called Apria and told them it wasn't an emergency (since she said there was no one there to head out) but that she'd put a work order in. Hmmm, haven't seen one come.......
Down 8: Gene heads out for a bit. After he leaves, Katie and I are with the boys and the beeps start. Colin's pulse ox keeps beeping (he wiggles his toes sometimes and then sometimes it just doesn't read it--it's our old one) and then his pump starts beeping, and beeping. I'd fix one, and then the other would start. (oh, and I called the Cigna Enteral people earlier for a new pump. Got a call back from Apria--different person and he asked if I needed the new one today--me, being nice, said no).
Up 3: I felt like I was going to lose it so I called Gene, had him come home, and I disappeared into the bath tub and put the jets on and read a magazine. I haven't done that in ages! I came out just as the boys were settled into bed.
Down 9: I had drawn up med for Colin before I went into the tub. I had zantac, albuterol and ibuprofen ready. Gene gave them to him. I won't say how this happened, but Colin ended up with two doses of ibuprofen. Not great.
So, that was the day in a nutshell, albeit a very large nutshell!
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