Monday, December 7, 2009

Ida does, too, do scalp IV's. So does Mary.


My turn in the hospital with Mallorie; she began vomiting this morning just before her follow-up appt with Dr. B, and her last labwork didn't look good enough to send her home with. So we have a beautiful scalp IV in place, and fluids going in that way, and through the wonderful g-tube. I am so grateful for good nurses who don't give up, and for the pauses for prayer prior to attempting a "stick," and the praises to God for surprise successes. And for good friends who stop by to check on us (thanks, Pam). And for great medical care.

My follow-up is Wednesday, so I hope Mallorie is discharged by then. And Dr. B's surgery will be Wednesday, too.

Sunday, November 29, 2009

I'm here and prayers for one of our real-life "angels"


OK, since Annabel's mommy "outed me" (and I don't mind, seriously), I might as well update. I only learned Friday evening, at about 5:30 pm, that I needed to have surgery. I was given the option of waiting till after the holidays. Um, no thanks. Not sure what kind of holidays we would have had, waiting for the inevitable surgery! So I was able to be scheduled for Wednesday, and was safely back home yesterday, and those of you who knew to be praying for poop? Well, you may stop, now. :) Thank you.

I will learn more about what comes next after the post-op appointment which hasn't yet been scheduled. And I know, now, the secret to not gaining weight on Thanksgiving.

The biggest thing that is weighing on my mind, now, is that my very dear friend, Dr. B, is waiting for something very similar to take place soon. She is a gift God chose for me and my family long before Mallorie had been conceived. She was one of the special ANGELS in the delivery room when Mallorie made her appearance, after praying for her in the nighttime before. She is one of the most vivacious, giving, fun girls I know. When she was pregnant with her youngest, I hear she did handsprings in the office to freak out a coworker who had gasped when Dr. B had raised her arms over her head, because of an old wives' tale about choking the unborn baby that way. Years ago, when I worked on the pediatric unit floor, if I was clocking in and heard her voice, I grinned and took off to get into the nurses' station before I could miss the chance to have her start my day off laughing. I wish all of you knew her, but even if you don't, please pray for her healing, and for her to be filled with peace today and in the coming days.

She's the one who is spoken about in the sidebar to the left, ....her amazing pediatrician [who] 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."

So are you and I, Dr. B. Here for the long haul. As you have said before, we have far too much work to do. We adore you. I just want you to have the peace I feel for you this evening, too.

PS, John has Mal at the ER tonight. Hurry up and get well soon! We have lots of work for you to do. We're thinking it up as we go. ;)

Wednesday, October 7, 2009

Our little Picasso

Vital Stim

iPod You Can't Stop the Beat (Hairspray)

Outside with Hannah

New Becca sensory room

I love daddy

Love my hand, too

For Arthur C.

Hammock joy

Sorry. We've had some sickness and some more serious health concerns in our home, so haven't been thinking of any blog in awhile. Do these make up a little bit for the absence?

Constipation woes are gone. It's either extremely well managed with our new poopy program (hate "bowel program") of cod liver oil plus Baby Calm (magnesium & vitamin C) plus Activia . . . or it's another GI virus. (Man, will I be upset if it's only a virus.) The program is working SO well that we have discontinued all Lactulose, and none of us can remember the last time we gave a 3 am enema! They had been nightly, until we brought her in to see the lovely Dr. B, who read me the riot act about how my pig-headedness about chemicals was hurting Mallorie. Well, my interpretation.

Cloth diapering is a bit harder when there's poop with every diaper, though. :) Do you really think you hear me complaining? I assure you, I'm NOT! Cloth is way easier than anyone led me to believe, as long as you have a washer, and an extra load a day beats giving enemas, hands-down! And we don't have stinky trashbags full of poopy disposables to take out all the time. This was one well-kept secret, I tell you.





Sunday, September 13, 2009

Rhyder Anderson

Cathy has "introduced" me to Rhyder's parents, who are so sweet and so much in love with their baby boy. He is now in the hospital, and they say the plan is to stabilize him on caffeine to control the apnea, and then he can go home again.

Please pray for Rhyder, that his apnea will quickly be controlled through the caffeine, and that all his other body systems will work well.

And for Michele and Dave, who did not get very much sleep last night. May they receive all the support, equipment, encouragement, hope, and excellent medical care they need to bring Rhyder safely home. And some restful sleep, too! :)

I know we all look forward to learning more about Rhyder's life, so I was glad to learn today that his parents have started a blog for him. It's at http://rhyderanderson.blogspot.com/. They are also on Facebook, but I have tried, and can't figure that thing out. Maybe those of you on facebook will know more sooner than the rest of us, and can fill us in?

Monday, July 20, 2009

Please pray for this sweet Bird


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!

Monday, July 6, 2009

I'm sorry, Alicia.

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.

Saturday, July 4, 2009

Hard to explain

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 ....

Saturday, June 6, 2009

Old pics

The kids promise to start taking a bunch of pictures this summer. Now that school is out. Especially college.






We miss seeing these kinds of faces. Ever since she had that tube overnight in January, her gag reflex is in full force.


Tuesday, May 12, 2009

Happy Birthday, Cathy.

It's Cathy's birthday today.

And Annabel is being admitted to the local hospital for hydration.

Here's her blog.

We love you guys. Get well soon, Annabel!!