Jessica home with Alex , but he is experiencing post-operative pain. I asked her if I could do a post asking for prayer for him, and she said I could.
If you follow Alex's blog, you also know that Jessica is near the end of her pregnancy with Alex's baby sister sibling. (Just teasing, Jessica.) She must be exhausted, physically and emotionally. Please join me in praying for relief from pain for Alex, and for restful sleep for both of them tonight.
When I first tried to post, I had thought he had needed to remain in the hospital, but thank God, he was well enough to go home. There is just NO place like home.
I'll be praying for your little Bird, Jessica. You get some sleep!
When someone came by to see Mallorie today, I proudly held Mallorie on my lap, demonstrating the new squirt bottles we have been using for Mal's tube feedings. Matthew had just quickly blended up a nice blend containing baby food chicken, pureed beets, peaches, and milk. As the bottle warmed on the table nearby, I excitedly told her about how we've been so successful at getting solids into Mallorie without causing constipation, and how nice that is. How over-pooping is so much better than constipation. And then I started showing her how it's done.
In the sentence, "Matthew had just quickly blended up a nice new blend, ..... pureed beets, ....." the words quickly and beets might be the key words.
Because about 2/3 into the feeding, I hit a point where I couldn't squeeze the food out anymore. So I squeezed harder. And it splattered all over Mallorie, me, the table, carpet, my calendar. It took me a few minutes to realize that it was also all over Alicia. And the paperwork she had brought with her.
Red-faced, I turned to Alicia and said, "At least it was you. And not someone else."
Whatever that stupid sentence meant! So now I'm sure she left here wondering why I might have thought it was better to spray her clothes with staining beets and pureed meat than someone else.
I find some things in my life to be hard to explain.
The joy I find in squirting baby foods into Mallorie's g-tube.
The excitement of finding new things to use in nontraditional ways.
The things my children say.
I'll start from the beginning. I met a mom recently, who was very enthusiastic about feeding her little boy, who happens to have special needs, a g-tube, and some oral aversion issues. She showed me a pretty squirt bottle she had in her fridge, that she had filled with pureed sweet potatoes. I think the bottle was fuschia, which contributed to the appeal for me, because I love color. The bottle had a soft tubing at the top, and the mom explained that in the intensive feeding program she'd done with her son, they had taught her to use the tubing to direct some of the puree into the back pocket inside his cheek. She said that once the food's there, the child has no choice but to swallow it. I wondered about choking, but know I've seen some people administer liquid meds that way to their children, so I thought I ought to get some bottles like hers. The Zip-N-Squeeze bottles we use to give Mal liquids wouldn't have a thick enough tubing.
In Mallorie's next Speech Therapy I mentioned it to Becca, who explained about all the factors involved in the normal swallowing process, and how bypassing some of those can set the stage for aspiration. So I've canned that idea, but before I had spoken to Becca, I started looking for squirt bottles to use.
I never found any with soft tubings, but at Wal Mart, next to red ketchup squirt bottles and yellow mustard squirt bottles were these cool colorless bottles. I bought a few, and filled two with shampoo and conditioner, and now we have refillable squirt bottles for the shower. They look so pretty with the pastel blue and pink liquids inside, that I smile every time I look at them. So pretty that we filled squirt bottles with baby bath liquid for the bedroom and other places where we change diapers. We rinse paper wipes with warm water and use baby soap for diaper changes ... or we use those cool flannel wipes Matthew and I made, so we use a lot of liquid baby soap.
I kept trying to think of more things to fill those bottles with. Ketchup, mustard, honey ... so boring. Everyone does that. I thought about dish soap, and sent Carley to Wal Mart to get more bottles while I kept imagining things I could put in them.
She came home with some smaller bottles, that are for making candy, and I got the idea of using them for tube feedings. We have always used syringes, but after several uses, the rubber stoppers on the plungers tend to wear out. And some brands of syringes are harder on your hands. The bottles Carley found (2/$1.99) fit perfectly into the Mic-key extension tubing, and are effortless to squirt. They hold a little more than 6 oz, so we can fit 1/2 jar of meat and 1/2 jar of vegetable and a few oz of milk, shake, and have a feeding ready to set in a container of water to warm and give. We love them! Suddenly, it's easy to find help to mix up a feeding, because it's not like trying to suck puree up into a syringe, tap out the air, .... You just scrape the jars between 2 bottles, add milk, and you have 2 feedings in just a few minutes. And no one minds feeding her solids as much, since it's easier to push (or squeeze).
Eventually, we'll go back to trying blending fresh foods, but for now, the baby food option is working. We have been free of constipation for a couple of weeks, and I think the combination of fruit every morning and a magnesium-vitamin C powder I found at the health food store is the key. Well, of course, and avoiding ALL grains. :) It's the first time we have been successful giving solids for any length of time without inducing constipation. Yay!
And the things my children say.
It's been a particularly buggy year. I know it's not just our house that had trouble with fruit flies this year, because I bet 1/3 of the homes I visited (for work) had a handful of them flitting around. I know, because they always find me to bite! Unless Mallorie's around, and then they bite her. So we constructed all manners of cones taped to the top of jars, filled them with banana peel, oranges, etc. What ultimately rid us of the things was a beer-vinegar-molasses recipe I found online, and covering the jar we put it in with plastic wrap with a few holes poked in the surface.
And house flies. I'll just say that I hate them. Even if they don't bite. And with so many people, I'm forever singing out, "Shut the door," as people are going in or outside. Honestly, were they raised in a barn?? So I went online to try to find the recipe I found before for trapping flies. I really hate chemicals, and we live in a really buggy part of the country. It's not this way everywhere. I'm originally from CT, where things die off every winter; I know of what I speak. Yes, it's nice that we could feasibly garden something or other every month of the year here, but the bugs have also figured this out, and seem to be here to stay. Hard, when you're anti-chemicals.
So I found these ugly, but really effective products. They cleared up the fly problem in the yard, and the kids have been so excited about how fast they work. Well, most of the kids. Except Carley. She took this picture.
And said the fly traps were cruel and unnecessary punishment for flies.
I want to ask her why she's taking pictures of flies, and not Mallorie pictures for me to post, but I'm afraid I'll hear more of her animal cruelty theories. This is my child who coerces her brother to carry ginormous tree roaches outside before we can kill them. I probably should clarify that I am talking about what is known in Florida as Palmetto bugs and in New England as .... well, I never even SAW one of these things before entering the basement of my NY college ....
In October 2006, we went for an ultrasound for our fifth child, and were told that our daughter probably had a chromosomal defect. We were urged to get an amniocentesis so that genetic testing could be done, “so the doctors will know what decisions to make.” The specialist told us that he suspected Trisomy 13 or 18, and if he was correct, then no OB would do a c-section because it wouldn’t make a difference for the end outcome. Besides, no surgeon would operate on her back (she had a meningocele – spina bifida), because “Trisomy 18 and 13 are what are called lethal conditions. They are incompatible with life.”
That’s how our story with her began, but it is most certainly not the end. As her amazing pediatrician said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick.”