Believe it or not, I am not much of a tube changer. Gene is the one who does most of the trach and g-tube changes. The nurses have done a couple but it's mostly Gene. Last time I tried to change Colin's g-tube I couldn't get it in and freaked out. Colin's has always been a little tricky.
Today I did Casey's g-tube change. For those that don't know what it is, a g-tube is short for gastrostomy tube which is a feeding tube. Neither boy can eat by mouth so they get their nutrition through their tubes. And, I truly believe this is why the boys have been so healthy. They can't make a choice to eat foods that aren't nutritious like most other kids/teens. They are fed a special concoction that we make each day that contains a special blend of fats, proteins and carbs. It's based on amino acids that comes as a powder. We add water, coconut water, almond milk, apple juice, avocado, baby food and supplements like extra calcium, Vitamin D, l'glutamine and odorless garlic. Their hair and nails grow so quickly and their skin is so perfect! I attribute this to their nutrition. Huge thanks to several 'SMA Nutrition Gurus' that have studied and tried and calculated a diet that meets SMA kids special needs. Anyway, the tube change went great for me. Gene did Colin's and had a second or two of trouble but got it in.
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| Colin-ready for tube change. |
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| Kind of a dumb picture but he was so fast I couldn't get a good shot |
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| Colin's tube after almost 5 months |
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| Casey's tube after the same amount of time. Funny how Casey's is always cleaner looking. |
What else. Oh, I cleaned up lots of spilled formula. Casey has a set of plastic drawers by his head that we keep all sorts of things in. We use the top of it for water, syringes, etc. For some reason, lots of formula gets spattered on it. Guess who loves spattered formula?? Ants!! It was weird. I hadn't seen any in a few days. Then I put a cap from the formula onto the drawers and it must have had a dot of formula in it because an hour later there were ants crawling all over the cap! I looked closer and saw splatters on the sides, the front, and even in some of the drawers. So I rolled it out to kitchen took all the drawers out, took the stuff out, cleaned all the drawers, took the frame and brought it into the shower and washed off the sticky formula. I'm sure it won't be long before I have to do it again, sigh.
Casey hung out in his room and watched football on the ipad and listened to oldies music on the radio and he was happy as a clam for a couple of hours. Colin was happy watching his shows.
Yes, this whole weekend was spent at home, inside. Believe me, I feel guilty. I know that we could have gone somewhere and done something fun. Or, we could have gone in the pool (although it was pretty cool because we had some very cool nights) or gone for a walk. But, honestly, the boys enjoy just hanging out and doing their thing. And, I like being with them at home and doing my thing. Gene is happy doing his thing or going out for a bit on his own. So, I guess we're pretty boring homebodies. Ha ha. There also is the fact that it's a lot of work to get the boys ready, up in their chairs, with all they need, and out of the house, and into the van, and then out of the van, and back in the van, and home, and then undo everything... Of course, if there was something truly calling us, we'd go and do it well--we're just more tired than normal afterwards but I think that goes for anyone.
I also updated the music on Casey's iPod. I hadn't done that in a while and I had put lots more music on my computer and iTunes. It took me forever to figure out that they had changed it. I guess I missed the memo, ha ha. But, his iPod is updated and I added to his Fair 2014 (more Daughtry), Bus music (Grease soundtrack and Wings) and Christmas playlists. So he's happy.
Gene made Grandma's famous Squash Casserole tonight. It was really good. I should post the recipe but I don't feel like typing it out right now.
Aunt Chris, Colin and I finished the wii game Where the Wild Things Are. So glad to have that done! It was kind of challenging, at times, but repetitive, too.
Time for me to finish this and head to bed. Boys are tucked in. We read some more of Wonder. We're probably 3/4 finished. We're all enjoying it.
Random post from the past:
March 15th, 2009
That is the score that Grandpa O'Neill gave my Irish soda bread tonight! I only make it once a year and I've been tweaking it a bit every time. This year I felt I had done it really well, except that I had to use dried buttermilk powder instead of real buttermilk. (and it's getting kind of old!) I can't believe I forgot to put it on the grocery list for Gene. Anyway, kneading, raisins, and cooking time were 'spot on!' Grandpa always gives me a good score but I can tell he means it. He compares it to the bread his mother made. But he always adds that Julia does it good, too. I still want to make some 'Americanized' Irish soda bread. Maybe tomorrow. It has sugar and sour cream and eggs--odd yes.
Terry was here last night but she was wearing a mask. I heard her cough a couple of times and she sounded hoarse this morning. But she said she was still planning on coming at 9:00 tonight.
Colin was up before 8 o'clock. I gave him one of the disks of The Original Scooby Doo sermovie on the little DVD player with headphones. It's so funny to listen to him carry on and interact with the movie when you can't hear what they're saying in the movie! He runs a constant chatter. Luckily, Casey was in a deep sleep and wasn't bothered. He slept in until almost 10:00.
Both boys seem to be feeling good. Casey's eyes are brighter and his color has returned to his face. He had quite a bit of secretions this morning, but I cleared him out pretty easily.
I wanted to go over to Aunt Chris' today to visit but it wasn't going to happen. I 'fed' Colin's bed. He lost his whole feeding and it was everywhere and he didn't complain! I ended up giving him a shower. AND, he had been off of bipap for at least 2 and a half hours before we hit the shower and he did good! Usually, I always put him on bipap for a pick-me-up before a shower but I went with my gut and knew he'd do fine and he did. He whined for bipap while I was primping him but he made it through the primping and into the living room and he was in the 140s with a perfect SAT so that's good for him!
Then I made my Irish soda bread. Mad about having to use the powdered buttermilk. I probably could have 'made' some buttermilk using vinegar and done half powdered and half 'fake' but I didn't.
Then I had to get Casey ready for the day, although Gene helped a bit. We got him up in his chair and he was looking quite perky.
By this time Gene had to start the corned beef and get all the veggies ready so I wasn't going anywhere.
Grandma and Grandpa O came over around 4 o'clock (?). I set Casey up with his eye gaze DynaVox and he did so well! The first thing he did was go to the bathroom page and hit "I need to go to the potty" and "my butt hurts" and he laughed! He didn't do the fart though. He got to show off for Grandma and Grandpa. He really is amazing!
Colin watched some movies--that was all he was interested in. Grandma and Casey read some magazines.
We had a very yummy dinner. We missed having AC. It was kind of weird that she wasn't here. The corned beef was very good and tender and not too much fat. Gene cooks the corned beef separate, as well as the potatoes separate, and he cooks the onions, carrots and cabbage in the same pot. Oh, and he cooked and mashed some turnips--yuck. My bread was a hit. We had 'green stuff' or Watergate Salad for our dessert. AC usually would bring the dessert so we had to have the Watergate salad for dessert instead of with dinner. What is Watergate salad you ask??? It is: pistachio pudding, large can of crushed pineapple with juice, drained can of mandarin oranges, a cup of mini marshmallows and a container of Cool Whip. Odd-yes, yummy-yes.
At about 7:30 we get a call from Terry. She is really sick with chills and coughing and that kind of stuff. So we got the boys for overnight.We got the boys settled in bed, I did some equipment cleaning, got Casey's stuff ready for the morning, and then settled onto Casey's mattress on the floor by the wood/gas stove. I read for a while and then tried to sleep!
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