Posted on May 28th, 2008 by Abby.
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).

It took us almost three years, three doctors, months of daily temperature charts, economy-sized online orders of ovulation predictors and pregnancy tests, four sessions of IUI, and thousands of dollars to conceive our first child. We progressed from hopeful to conscious to timed to hopeless intimacy, and eventually to a separate and ironically “sterile” fertilization. By the time I took the last pregnancy test, the positive one, I had completely lost hope.

So after finally conceiving James, then discovering all his complicated medical problems, it didn’t seem likely that we would be able to have another baby. We didn’t have the money to pay for the fertility treatments; I didn’t even have insurance that covered maternity, let alone another c-section. In March John said the only way we could afford another child in the next few years was if we could get me and the baby on Medicaid while he was still making below the wage requirement of $39,000 a year. That salary would increase on James’s first birthday. So we had a two-month window if we wanted to give God something to work with.

I told myself, if it worked and I got pregnant the “normal way,” after 30+ such windows passing us by before conceiving James, I would laugh like Sarah in the Bible when she found out she was going to conceive at the age of 90. Her first laugh at the news may have been a bitter, hurt, disbelieving one, but I am convinced that as her wrinkly tummy stretched taut, her laughter became full of joy and thanksgiving. In fact, she named her son, Isaac, “laughter.”

There was not much laughter during our years of infertility. Maybe bitter, ironic laughter as we questioned whether God loved us or heard our prayers or as we considered how difficult it was to get pregnant, despite the urgent warnings of our middle school science teachers. We had a hiatus from the sadness when I finally got pregnant, but when James’s health problems began to surface, our complacent joy turned into anxiety and disappointment. So what the heck, God, I asked Him, why don’t You give us a break this time and let us laugh a little at Your astonishing power and provision?

And what do you know, on the first try, He did. And we did!

apparently very few love a double acrostic…

Posted on May 19th, 2008 by John.
Categories: Our Journey, Our Journey (chronological).

OK, I suppose many of you thought it was odd that we posted a puzzle on the blog for James’s first birthday, and then posted nothing for almost 3 weeks. I thought it was reasonable to give all the occasional blog readers a chance to see it and solve it. Turns out it was more puzzling than I even intended; some people actually got all the answers and still didn’t decode the hidden meaning. The author and context of the quote, as explained in the instructions, are found by reading vertically the first letters of each of the answers.

The completed puzzle appears below:


All of James’s grandparents solved it when we gave it to them on the night of his birthday. Props to other solvers Jen Y., Carrie B. (uber-props for solving it without any specific encouragement), Chris & Andrea, Owen & Samantha, Uncle Mike, Lisa R., and Chantel.

time capsule

Posted on May 15th, 2008 by Abby.
Categories: Our Journey, Our Journey (chronological).

Thank you so much to everyone who sent James birthday cards–cute cards, musical cards, sparkly cards, sweet cards–and gifts. I think he got more mail than we normally do at Christmas.

We’ve been off line for a while, recovering from the birthday festivities and the Ronald McDonald House dinner the day after, and then just fighting other James-related fires (more on them later). Last week John and I were able to celebrate our ten-year anniversary and Mother’s Day with a 3-day cruise to the Bahamas with our buddies, John and Jen (the co-creators of James’s birthday cake). Grandpa Bill and Nana took good care of James while we were gone. It was a really nice vacation. We missed James, but for me especially it was a relief to get away from the feed, vent, accu-check, feed, etc. cycle and just be “normal” again.

Yesterday, James turned a page in his therapy session. Not a figurative page, but a literal, cardboard page of “Pat the Bunny.” His OT (occupational therapist) started crying, she was so happy. It was good to be reminded that we need to celebrate the small steps he takes instead of getting too focused on the ones he doesn’t.

In this post I want to create a sort of snapshot of where James is just after his first birthday so I can see his progress more clearly in the future. I am a goal-oriented person, and seeing progress makes me feel happy. So this post is an investment in a day of future happiness when he is further along.

James can sit, using his arms to prop, for a few seconds at a time, 30 is his record. He tends to slowly collapse lower and lower. He still drops his head forward, back, or to the left sometimes due to incomplete head control. He tolerates being on his tummy for short periods and can push up and look around. He likes to try to crawl with me supporting his torso, and he can alternate putting his hands forward if you wait long enough. His legs don’t alternate yet; they do a froggy push at the same time.

He has been hearing the world since April 1, so less than two months. James still isn’t speaking, but he makes conversational noises, usually along the lines of “aaaaaaa” and “mmmmmm” and “Aaa!” when he is hungry or wants you to look at him. He tries to imitate sounds and mouth movements, and is pretty good at imitating pitch, but has a hard time shaping his mouth. He smiles a lot, which can also hamper the imitation, but it’s sweet. He likes to laugh when other people are laughing, and he sometimes laughs independently at something he thinks is unusual or surprising, like after he hits the “samba” button on his keyboard. I’m not sure whether he knows his name now or not.

His fingers are open more and more of the time. He is able to grasp fabric, tissue paper, and strings of beads easily. Given several tries, he is sometimes able to grab other things. His right hand/arm is better than his left, but his left is not far behind. When he sees something he wants, he looks at it a few seconds before anything happens. His right hand starts to make a grasping motion; then the right arm starts to move. He will take several swipes before getting the hand where he wants it to go. Sometimes he eventually gets it there, sometimes not. When he bears his weight on his hands, as with crawling, he still clenches them shut, but he opens when reaching out for something. He can’t get his arms up very high, and he has difficulty pushing down on things with much force.

James seems to have a fairly good understanding of cause and effect. A toy’s mechanism can be demonstrated once or twice and he will try to do it himself from there. Tonight he gave up on pushing a button with his hand, and instead did it with his face, over and over. I think that’s good problem solving, but that particular strategy is only going to take him so far.

He has two little bottom teeth that pushed through right after his birthday, and a top one that is going to break through any day now. He no longer likes his bottle, so he is almost 100% tube fed right now. He still enjoys purees when I have time to give them to him as a snack, and he can drink from a sippy and a straw. I am really hoping that his GI doc and the new GI nutritionist, whom he will see next week, will create a more oral diet with less gas! Right now he takes an hour to feed with at least two ventings for all the painful gas. He’s eating every 3-4 hours, so you can see that 1/3 of my time is spent feeding or venting him. He’s started to burp, little tiny burps. They don’t take care of much gas volume, but that’s progress on adapting to his Nissen fundo operation from August. He just started today with a new therapist who will focus on feeding skills. He still hasn’t shown strong dislikes of particular foods; he’s pretty open to tastes, but chokes on more solid things. Hopefully the teeth will help. He struggles with constipation frequently, despite the prune juice he consumes along with his Neosure and Pregestimil formulas.

His blood sugar is pretty stable these days; we feed him when he is around 120-140 so he doesn’t get too low during all the venting. He is down to three shots a day, soon to be one. At the end of the month Dr. Yang is going to switch him to the oral DDAVP (anti-diuretic hormone) instead of the big twice-a-day shots he has now. That will be worth celebrating. The only one left will be growth hormone, which he will get for the rest of his life.

hat friends

As for the current dramas, James’s awesome pediatrician, Dr. Sam Smith at Interlachen, is no longer able to treat Medicaid patients, so we have to find another pediatrician who takes Medicaid, understands complex medical issues, and hopefully isn’t too far away. Let me know if you have a suggestion.

And as of the end of May, James will be off Medicaid and entering the application process for Florida KidCare, which is the program for kids who can’t get insurance from their parents’ employers. Notice I said “entering the process.” There is an unavoidable gap in insurance coverage for over a month until he gets in, and it’s not retroactive at that point either. If he has to go to the hospital during that time, CMS will cover that, and Early Steps will pick up the bill for his therapy. As for everything else, I am hoarding medications, cramming in doctors’ appointments, and anticipating the end of night nurses.



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