So, I am blogging like I usually would but I am committing to blogging each of the 31 days of this month. I'll show you the good, the bad, the boring and the reality. I'll also throw in some throwback posts and some oldie but goodie pictures. At least that's my plan on day 1. As I'm typing this...I'm watching American Horror Story on Netflix. I'm on season 1, episode 10. I'm in the wish room watching on the boys' TV. Nugget is sitting next to me laying on Casey's head cloth and sleep t-shirt. Gene is sitting in his chair perusing the Internet and watching the boys. Casey and Colin are on their mattresses in the living room. Casey is listening his ipod and he's fiddling on his DynaVox and poking around on the Internet and watching some basketball we found on TV. Colin is watching some animated movies on Netflix on the ipad. Jaxon is sitting at my feet thinking that I may drop some food but I finished dinner a long time ago, ha ha. Oh, and Moxie is probably upstairs sleeping on the dresser in the hallway. Pretty much a typical evening around here.
Today we had a visit from Darla, her husband Dieter and Dieter's son, Thomas. Darla was one of the first nurses that Casey had way back when. She was our night nurse and worked many, many nights and saved Casey's life many times, and Colin's, too. About 10 or 11 years ago she left and married Dieter and moved to Germany.
What I remember most about Darla, besides her being a kick-ass nurse is that she was here the morning of September 11, 2001. She had done the night and was staying on for the morning because the day nurse was coming in later. I remember us being dumbfounded and not really believing what we were seeing and hearing. I know I decided not to send Casey to Kindergarten (he was going in the afternoon) because I was scared and worried--but they ended up canceling it anyway. I also remember that Darla was the one that finally got Colin bipap. We tried and tried to get him to use it proactively but he hated it and I'm sure we weren't doing it right. He was sick, I think, and struggling and somehow she just made him use it and got it so it was actually helping him. I'm going to have to ask her what she remembers...I also remember that she was here the day that Colin was baptized. Father Holland came to the house and Gene held him while Father Holland said the prayers. Grandma and Grandpa O'Neill were here, and I imagine Aunt Chris. Colin was pretty fragile back then, he was older than when Casey was baptized as an infant. I can't even remember the date but maybe I'll be able to find some pics when I'm browsing through old pics and posts for SMA Awareness month (pre Facebook, of course, and I was never one to be on My Space).
(Added Aug. 2, 2014) Going through some old CDs and found this pic of Colin's baptism cake.
And, I found this old pic of Darla and Casey from Easter 1999.
So, Nurse Julie got a text from Bill (Julie's boyfriend--they're staying there for a few days) this morning saying that they were on the way over...Okay...I was not prepared and didn't have any refreshments but Darla has seen me at my worst so I'm sure she wouldn't care. She really just wanted to come and see us and kiss the boys. The boys were already up in their chairs and ready to go out for a walk in the neighborhood so we decided to go outside and wait. Karyna was here for Colin so he was all slathered in sunscreen so he was safe :) Oh, and Julia had come, in the meantime, to do her thing (she's a PCA and does things like make formula and making sure their rooms are clean, laundry, and works on supplies and wiping down machines and she also does some care for the boys).
So it was a party in the driveway when they finally came. Darla looks good and Dieter doesn't age and Thomas has grown into a very handsome man. (he is wanting to teach English in Germany).
The mail lady came while we were chatting. She had a package in her hands. I knew what was in that box!! Feeding bags!! Thanks to another SMA mom we will now not run out of bags at the end of the month. Each month we get enteral feeding supplies which include powdered formula, syringes, cotton tip applicators (fancy name for sterile long Q-tips), syringes, 4X4 split gauze and feeding bags. Feeding bags are supposed to be replaced after 24 hours of use. The boys have a set volume of food/formula that they get every day. At the end of the day I throw out the bag and they get a fresh one--or at least they should. Insurance doesn't take into account that some months have 31 days, that occasionally we get defective bags, and occasionally bags will clog and nothing can unclog them. This is the lowest we have ever been. I had reused a couple of bags and used up our emergency supply that I keep in their travel bags. Yesterday we received our monthly shipment but now, with this windfall, we will not run out for a long time--I hope. AND, when I thanked the SMA mom for doing this she mentioned that she had received another box of 1200 ml but they need the 500s (he son is just a baby) I was able to hook her up with a friend who had extra 500s. Anyway, my point is that SMA moms look out for each other.
We had a nice walk. A little muggy but it could have been worse since it is August. We must have looked like quite a sight--7 adults and two kids in wheelchairs moseying down West Milton Road, ha ha. It was good to catch up with them. Wish we could have done something like have a picnic or go somewhere fun but they have a lot of people to visit while they are here.
While we were saying good-bye in the driveway, Aunt Chris (AC) pulled in. She JUST got back from her 2 week trip to Alaska.
AC told us some about her trip while she doled out her 'prizes' to us. Casey wanted a whale shirt so badly. She finally found him one and he wanted to wear it NOW. I had to wash it first so he had to wait and was not happy with me. She also got him a long sleeve Harley shirt and gave him the latest Dautry CD (baptized). Colin got a trilogy of wii games (she had bought the CD and wii games before she left for Alaska--just to be sure to have a prize for them that she knew they'd like) and a red shirt that says I LOVE Santa. I got a navy blue Alaska shirt and an Alaskan Angel pin (the angel looks like an eskimo). Gene got a black Alaska baseball cap. We watched some of the DVD of the railroad portion of her trip. It was very fascinating and picturesque to me, but the boys got anxious and just wanted to play wii.
So, I went up for a late nap/read while Julie and AC played the new wii. I'm about halfway through Chris Bohjalian's latest book, Close Your Eyes, Hold hands. I love most of his books. They are always so different from each other. Maybe that will be another post. This one is getting long.
Almost time to head to bed. Especially since Jaxon is laying here next to me farting...ewwww.
It almost doesn't feel like a Friday since we will have Staci for night nurse tonight. She was off earlier in the week so she picked tonight--usually I am nurse on Friday nights. Looking forward to tomorrow morning. I'll actually wake up fresh (God willing) and not have to go back up bed to sleep for a couple of hours in the morning while Gene lays with the boys. Usually, after the boys finish their food, I let the dog out, feed him, feed the cats, give Casey his meds and wake Gene so I can get some uninterrupted sleep. Somehow, must be Mommy instinct, I always wake up by 9:30 because that's when the boys get their next feeding started and Gene is usually snoring away.
Random post from the past:
January 1st, 2007
Slept in a bit today. I didn't hear any sounds from the boys room so I kind of enjoyed the time in bed.
I didn't even see Nancy H. She was here with boys boys for the overnight and I never even got up to say Happy New Year! Gene said he didn't go in and wish the boys Happy New Year, either. He and the cat rang in the new year together on the couch watching movies. Sasha, apparently, was up with me. Anyway, the boys slept well. When I came down at 8 something, Colin had just been brought to the yellow room couch by Sue.
Today the bulk of the Christmas decorations came down. Sue helped by taking stuff down in the yellow room and entry way. Flylady's mission was to make the front door and welcome mat spiffy. So, I washed down the door a bit inside and out. It was pretty warm out so it was easy to wipe down. Gene cleaned up the front and ramp. He also, without much prodding, vacuumed and mopped the entry way and kitchen. He also took out the bag of bottles and the large box of foam bits that he wants to bring to the PO.
Colin didn't get out of his jammies today. He enjoyed his cartoons. He had no 'bap until 12:30 or so and didn't even need it yet. Casey enjoyed hanging out in his bed listening to CD #2 AND #3 of Holes. That sure was a great gift--he was quiet as a mouse and was listening very intently.
Gene took off for Essex to try to finish some things at Central Street. I headed upstairs for a 'read and nap'.
Casey watched the end of the Penn State game and then some basketball. Colin watched a couple of videos on the portable DVD player.
AC came over and they ended up playing the new Scooby Doo computer game. AC likes it as it's one that she can figure out. I tried to install the other Scooby Doo game that Santa brought, but it wouldn't go through the setup. I hope I can figure it out. Then they played PuttPutt at the Farm.
After that, Casey was very annoying loud and whiny. Not sure what was up. We tried everything--DVDs, headphones, talking with him, laying down with him, ignoring him, etc. Gene was finally able to get him to settle in by telling him funny stories.
Now, the boys are all in bed. Daddy is with Colin upstairs, and Casey is in his room in bed listening to Delilah. He should be sleeping but he's not. He's being fairly quiet so I'm just letting him listen and relax. I'm catching up on this journal and emails and waiting for Nurse Julie to get here at 11:00. Good nigh!
No comments:
Post a Comment