stepping up

According to the medical examiners, Dora Jewel Gjertsen was perfect. Her chromosomes were normal, and every part her body, inside and out, was formed correctly. According to Scripture, her soul is eternal. I like to picture her in heaven in a place I call the Baby Garden.

During the initial shock of Dora’s loss, God sustained my faith in His goodness, but after a month of running in crisis mode, I started to sag. I began to feel like God was against us, that there was no way to reconcile her miraculous conception with her unexplained death. James wasn’t seeming to improve much and there just didn’t seem to be anything to look forward to. I felt sad and hurt and totally unsanctified. I didn’t like it, but I couldn’t snap out of it.

Thankfully, God had ordained that I would be in a Beth Moore Bible study on the Psalms of Ascent this summer, so when I finally forced myself to open my Bible and try to catch up on my homework, He met me there and pulled me out of the pit. He reminded that it was possible to be confident and sure in the Lord (Psalm 125:1), even when I am walking by faith in His favor, and not by sight. Another thing I learned was that those who sow in tears will reap with songs of joy (Psalm 126). This encouraged me that a time of sadness could be a time to prepare for a future harvest, and not to stop working hard on whatever task God has assigned me when things seem unfruitful. At first, it was hard not to feel bitter when I read verses saying that everybody who fears the Lord is going to be prosperous and have lots of strong children (Psalm 128). Now I feel like I can interpret them less literally to mean we will be full of faith and purpose and have spiritual fruit. This is much more true to God’s character, because we know His overall purpose in our lives is for us to grow to be happy in Christ, not just happy by ourselves.

Since then, God has given us a lot of bright spots. James in particular has had a very exciting week. On Thursday he got to see miniature horses that were visiting patients at the children’s hospital. He stroked the mane and nose of one of them. Friday he had his first away-from-home play date with his friends Lydia and Isabella. I am happy to say that he behaved very well and did not steal any toys. Saturday he took his first bubble bath. We have a family beach trip planned next month, and I wanted him to get used to being in the water. He loved it. We usually bathe him on the bathroom counter because immersing his insulin infusion site on his thigh makes the adhesive soak off, and putting on a new one is an extra prick. Saturday morning I knew I already had to change it, though.

He also went to his first pool party on Saturday – the first birthday of his buddy Parker. He got to “swim” with Daddy and float around in a baby floatie thing. He really liked the water, so I can’t wait to do that again. I wish I had pictures to show you. I do have a photo of his first wedding, on Sunday. He filled his pants right at the start of the ceremony and slept through the rest, but he was the life of the party at the reception. We sat at a table full of college girls, and he knows how to work that kind of crowd.

Tuesday James took his first trip to the Sanford Zoo. It was hot and the animals were mostly hiding in their caves, but he seemed to enjoy the porcupines and the farm animals in the petting zoo. Actually to be honest, his favorite thing was all the other little kids. He much preferred looking at them to the animals. We also took a little train ride at the end, and he seemed to like that. It felt good to give James a “normal” experience like regular kids his age would have, even if he didn’t exactly declare it to be his favorite thing ever.

Medically, James has had some victories and some setbacks. For some reason, James is not absorbing the oral form of DDAVP (anti-diuretic hormone) used to treat his diabetes insipidus (water diabetes), so we are going to have to go back to the shots unless Dr. Yang gets a different bright idea. I am praying for that bright idea, because the shots are going to be over 1/3 mL in volume, twice a day, and that hurts!

On the plus side, we moved James onto a complete carb-bolus strategy for his diabetes mellitus (sugar diabetes). It’s what most people with insulin pumps do, and after a couple weeks of trial and error to discover his proper settings, it’s keeping James’s blood sugar below 350 most of the time. We give James a dose of insulin every time he eats, so that when his sugar starts to rise from the food being digested, the insulin is also increasing to cover that sugar. If it wasn’t enough insulin, we just give him a little more later on. What is working right now is about 8 units a day for his basal rate and 11 as carb boluses.

A couple weeks ago his new pediatrician prescribed Reglan for his terrible gas; it stimulates gastric motility so his food would be moved out of his stomach more quickly and thus lessen the bloating and gas pain that leads to the marathon venting sessions. Well, it was like a dream drug the first three days; I thought I saw my life transform into something more than a string of 2-hour blocks between feedings/ventings. Then, the Reglan gradually worked less and less until it was totally ineffective. I tried to research possible reasons online and discovered there were lots of dangerous side effects of Reglan besides the diarrhea the doc had mentioned (which was actually helping with James’s constipation). It could give him seizures or serious tone problems. I started to get worried that he ever took it at all. Finally I called back the doc, and he increased his dose. I haven’t seen any side effects, just a return to the idyllic state of feeding James without him having dry heaves and crying and foaming at the mouth until I vent all his food back out, squish his stomach to get all the gas out, and tube all the food back in. Ahhhhhhhh, what a relief. I hope it lasts this time. [Note Thursday: today the effects of the new dose started wearing off. ]

The outcome of the big therapy meeting a couple weeks ago was that we got a new Family Care Coordinator and Early Steps is still paying for all his therapies. I think I was obstinate enough about not choosing one kind of therapy over another to put them off for a while. After it was finished, the whole thing seemed sort of silly, especially since everything is staying the same. If they had just admitted that James was globally delayed at the beginning, we could have skipped the drama, but it was sort of fun to play the part of the indignant, overprotective mommy.

I saved the best news for last. James is getting stronger! A couple weeks ago I started working harder with him every morning on brushing, stretching, bouncing, rolling, sitting, crawling, and standing (these are mostly his PT and OT goals). After I started feeling better I made a music playlist for our morning exercise time with energetic songs about believing God for big things (it also has Romans 8 and some fun songs like “Let’s Hear it for the Boy!”). It helps motivate me to work with him more consistently. We have been practicing standing with me lifting him under his arms (“1-2-3-stand! OK, take a break (sit down). 1-2-3″ etc.) and today he actually pushed with his legs up off my lap when I said “stand” and I could have let go of his trunk and, aside from the balance, he would have stayed erect. What a big boy!

Today he also worked hard to pick up small objects with a raking grasp and drop them into a cup. Wow! His arms are moving much faster and with more precision than they used to. This is great progress. Now I have to get him orthotic shoes to wear when he stands because his legs both turn out too much, making him put a lot of weight on the insides of his feet and his ankles.

Does this mean he is eventually going to stand independently…and someday, WALK? What a miracle that would be! Please petition God for this, as well as a lasting, pain-free solution for his gas and diabetes insipidus.

Meditations on Scripture, Our Journey, Our Journey (chronological) | Comments (7)