compensation


Posted on March 22nd, 2008 by Abby.
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).

Maybe you would call the big ears overcompensation, I don’t know. But James’s cuteness definitely does help balance out some of his other issues.

A week and a half ago, James’s audiologist fitted him for a bone conduction hearing aid. She seemed very excited about how much it will help him. It will have two pieces, a modified hearing aid and a tiny oscillator, that are connected with a wire that is enclosed in a cloth headband. The two pieces will be pressed against his skull, one behind each ear. The ENT doctor said that James’s ABR test indicated that he had more than just air-conduction hearing loss (more than just problems getting the sounds to the cochleas), but the audiologist said James responded so well when they tried bone conduction during the ABR that it should make him hear pretty close to normal, at regular volumes.

We’ll find out exactly how much it helps him on April 1, when he gets his hearing aid. Because of the headband, I was sort of dreading it as the latest unfashionable item in his permanent bionic baby wardrobe. While we were at the audiologist, though, I asked her to hold her sample hearing aid set on his head, just to see if he would react at all. She turned it on and I started talking to him, like I usually do, in a normal voice. I could hear my voice reproduced with a tinny sound in the microphone on the hearing aid. James got very quiet and his eyes became very round. His gaze became distant as he concentrated on the new sounds he was hearing. My voice was obviously reaching him. That small taste has me counting the days until April 1, regardless of the funky headband, which we ordered in a color that I hope blends in with his hair.

this is what we weigh him in

We had some other good news, but first I have to tell you something scary that I have not written about before. Back in January, James’s main night nurse (Dwayne) laid James in his crib after feeding him and began to write up his nursing paperwork. He heard James making a strange sound, like crying and laughing at the same time. He got up and looked at him, and James stopped after a few seconds, held his breath and turned purple like he usually does when he is angry or constipated (actually, he has been doing this less and less these days), but instead of letting out a yell, he just relaxed and his color went back to normal. He reported it to me that morning as a possible seizure, and certainly something abnormal for James.

The thought of seizures was so frightening to me that I didn’t even want to accept it. I put it out of my head until Medicaid tried to reduce our night nurse hours in February. I asked Dwayne whether he thought James was ok to go without 24-hour supervision yet, and he brought up the laughing/crying episode as something that concerned him. What if James had a seizure and no one was there to see it or help him? At that point I had to do something, so I set up another EEG (electroencephalogram, like the one he had in the hospital after his seizure-type reaction to fentanyl) and started reading up on seizure types. It turns out there is a laughing seizure that usually ends with some kind of motor movement like lifting up the legs. I also found out that children can have seizures and still have normal EEGs, although EEGs are supposed to be good at showing seizure activity and even predicting seizures.

At the end of February, we got the 20-minute EEG, which James very compliantly slept through. We finally got the results back, and once again, it was “normal.” He has not had any more episodes like the laughing one. At this point I am hoping that it will never return, but it is still a possibility.

Lawrence of Arabia meets android baby!

This Easter, as I look forward to James’s new hearing aid closing the gap between him and a “normal life,” I think of Jesus’s great sacrifice that closed the breach that separated me from eternal life. His perfect life and selfless death are the only acceptable compensation for my disobedience to an infinite God. My hope comes from knowing that He loves me enough to die for me and that He purposefully works all things in this life for good.

You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous man, though for a good man someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.

Since we have now been justified by his blood, how much more shall we be saved from God’s wrath through him! For if, when we were God’s enemies, we were reconciled to him through the death of his Son, how much more, having been reconciled, shall we be saved through his life! (Romans 5:6-10)

Happy Easter!

odds


Posted on March 14th, 2008 by Abby.
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).

According to the Carter Center, HPE occurs in 1 of every 250 pregnancies. The brain malformation has already happened by the time you discover you’re pregnant–by the fifth week. Most HPE fetuses miscarry, with only 3% surviving to delivery. Two-thirds of those are the most severe form, alobar, but 1/4 are semilobar, like James. About 50% of semilobar and lobar infants die before the age of one. That means that the likelihood of him being successfully born with the medium form of HPE and living past the age of one is 1/250 x 3% x 25% x 50% = 0.000015.

Permanent type 1 diabetes mellitus is very rare in infants, and with no history of diabetes in the family it is almost inexplicable. Dr. Desrosiers estimated there are only three such cases a year in the U.S. That means James had a 0.0000007025761124 chance of being born with type 1 diabetes.

I could continue using his other issues, but you get the idea. Multiply the likelihood of the first paragraph with the probability of the second, and it’s easy to see that James is an extremely rare case. In fact, my little calculator gave up and just said zero.

What do you do with odds like these? Sometimes I think how unfair it is to have a kid so spectacularly messed up. Other times I think how lucky it is that James is still alive in spite of it all. A scientist might say that just because an event is statistically unlikely, doesn’t necessarily mean it is significant. After all, every baby is a completely unique creation. But it certainly does seem like God exerted Himself maybe a little harder than usual when He made and sustained James so long.

I have been wrestling on and off with the future. John and I are both planner types, and it would be nice (in some ways) to know if James will ever walk, or talk, or even live very long. I go through phases where I comb the internet for studies that will tell me the likelihood of him accomplishing these things (walking, 5%; normal upper extremity function, 5%; speaking words, 10%). James’s head control has gotten much better, and he has already accomplished reaching for objects (50%) and holding objects (66%); he is also just starting to sit, propping himself on his arms for a few seconds at a time (33%). This last accomplishment makes me so excited!

The life expectancy question is harder to answer, though. A family in NC just lost their HPE son at 4 1/2 years old in February. When I read about his passing away in his sleep, it jarred me out of my complacency. I debated asking my HPE yahoo group how long they had with their HPE kids, since there are a lot of folks in the group who write in to celebrate their children’s “angelversaries.” It seemed too rude to subject them to a self-serving survey, though.

But even if I knew the average age of death for a semilobar HPE child who lived beyond the age of one, it wouldn’t help. It wouldn’t tell me James’s particular future, and it wouldn’t release me from trusting God every day with the story He is writing here. When He decides to close James’s book, He will; and until then, I have to persevere with what I have been entrusted and trust Him to write a good ending.

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart. Hebrews 12:1-3

tube tunes


Posted on March 7th, 2008 by John.
Categories: Our Journey, Our Journey (chronological).

Today we made a change to the weight chart on sweetbabyjames.info. It now shows his weight at monthly intervals, and compares him to the 3rd percentile of other guys his (adjusted) age. The effect of the digestive enzymes we introduced at 5 months is pretty obvious. Abby saw the chart and thought how things might be different now if he had the enzymes earlier, and I saw the chart and remembered the frightening trajectory of the months prior to the enzymes.

These enzymes come in little gelcaps which are opened up and added to a mixture of breastmilk and apple juice, and then pushed through his G-Tube as step one of the feeding routine. They love to stick together and often clog up the tube, but Abby and the other people with feeding skills have all pretty much gotten the technique down. Abby sings a little jingle during this step in the feeding:

Down come the soldiers
Marching through the tube
Into your tummy
So you can have some food!
(repeat)

Soldiers, indeed, fighting the “battle of the bulge.” With these tiny ball-bearings turning his carbs into fat, we have hope that one day he’ll surpass the 3rd percentile. (And then we’ll graph his weight against the 5th percentile.)

enzymes have transformed my life

Another important supplement that James takes is hydrocortisone, which is a thick suspension pushed through the G-tube three times a day. One time we asked James’s Nana (and nurse) Betsy what hydrocortisone was good for, and it turns out it’s a critical component of just about everything the body does. For this reason, it deserved its own jingle.

Hy… dro… cortisone,
Gives me super powers!
Hy… dro… cortisone,
it only lasts eight hours!

Yesterday, Abby asked me to write a song for the second step in the feeding process, which is putting the foul-smelling Pregestimil through his tube. Pregestimil has short-chain amino acids, so it is easy for James to break down, but it tastes so bad he refuses to take it by mouth.

You have to take Pregestimil
So you can digest the meal
But so you won’t detest the meal
You get it through the tube!

The last phase of the feeding involves James taking Neosure/milk from the bottle. This part requires no additional parental entertainment, since it is the main event.

all done!

shortcut


Posted on March 1st, 2008 by Abby.
Categories: Our Journey, Our Journey (chronological).

Today we donned our team shirts, packed our sunscreen, and drove to UCF for the Walk for the Cure for diabetes. We want to extend a big thank you to all our supporters who donated to the Juvenile Diabetes Research Foundation on James’s behalf! We made more than 100% of our goal of $1306, which was a dollar for every gram James weighed at birth. These funds will shorten the distance to a cure for Type 1 diabetes, hopefully in James’s lifetime. If you still want to give, we will leave the link to the right up a few more days (“Cure Diabetes!”).

Before the walk, James got to meet the UCF mascot, Clifford the dog from Scholastic, and (his favorite) some UCF cheerleaders who had shiny costumes and pompoms.

Knightro with James

Clifford & James

girls + shiny things = happy boy

All the juvenile diabetic walkers received a blue ribbon to wear and were invited onstage and interviewed briefly. James was the youngest. One little girl said the worst thing about being a diabetic was all the sugar checks and having to watch while “everyone else eats cupcakes.” James was the only one so young that his mother spoke on his behalf, and throughout the day people were astonished that anyone would actually be born with Type 1 diabetes (which occurs maybe 3 times a year in America, on average).

15 seconds of fame

One tent selling diabetic clothing boasted that they made “the best pocket for your pump.” We shut that claim down pretty fast. All their stuff was too big for James and would have put the pump on his back or his chest. When we showed them the belt case that his grandma made, they tried to discourage us from marketing it. Both John and I felt they were just trying to intimidate any potential competition! 😉

Another booth was for Medtronic, the pump company that makes a pump integrated with a continuous glucose monitoring system that we have been drooling over. It has a second insertion set that samples the sugar of the cellular fluid and wirelessly transmits the numbers every minute or so to the insulin pump. This eliminates the need for finger sticks (in James’s case, heel pricks). The continuous glucose monitoring option has not been approved for children under 7, so James won’t be getting it anytime soon. The company representatives said they were working on combining the insulin infusion set and the glucose sampling set into a single insertion device. That would be a great improvement since James has so few sites to stick these things in the first place.

and we're off!

where we were supposed to walk

We wish we could report to all the people who supported James that he finished the 5K walk triumphantly, but in truth the preceding festivities took a little longer than we expected and the sun was a little hotter than James is used to and his mommy sunburns pretty fast herself, and in short…we took a shortcut.

what actually happened

It was pretty cool to be some of the first to get the free lunch and the shady seats, though.

Some year soon we hope that James will be able to stand on the stage by himself and walk the 5K (or a shorter version) on his own legs.

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