Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).
This past Sunday, James William was officially dedicated to God alongside Bryce Daniel, his full-term “twin” born a few hours later on the same day. It was James’s first Sunday in church, and he was pretty much all-smiles. He couldn’t have been any better behaved if he knew the lifeline of support and care and meals and prayer that surrounded him.
A dedication ceremony, for those who are unfamiliar, is a formal recognition of a baby’s entrance into a church family. First there are a few questions posed to the parents, along the lines of recognizing our responsibility to nurture and teach and introduce the baby to God. We say “we do,” kind of like a wedding or something. Next the congregation is questioned in terms of their responsibilities in a covenant community to pray for us and such, and they answer “we will, with God’s help.” Again, it’s a little like a wedding ceremony where the congregation both serves as witnesses and pledges to help support the vows that are made by the parents.
So right out of the chute, the question is posed to us:
Do you here this day recognize this child as the gift of God, and give heartfelt thanks for God’s blessing?
I don’t think that’s supposed to be a hard question. But I don’t see it as rhetorical. In fact, the whole issue of whether or not James is a blessing or gift or answer to prayer is quite familiar. I can’t remember if I’ve blogged about this before, but I’ve been resistant to that line of thinking for the last several months. It’s sort of awkward even to admit, in a blog where we hope to display the loving kindness of God, that I wrestle over something like this, but I’ve not regarded this appointment with James and all his needs as an unqualified blessing. To date, I think Abby has written twice as many blog entries as I have. To a large degree, that’s been my depression or my confusion at how to relate this experience honestly and also glorify God.
“We do,” all four of us answered in unison, because that’s the way that the script goes, but I wondered the instant I made the vow that I might be breaking it with my doubt. I hoped, instead, that in the act of making the vow that God would change the course of my thinking to help me see the gift and give thanks for the blessing.
It’s been an appropriate week, of course, to think about thanksgiving. Buried somewhere under turkey and sweet potatoes and football and hundreds of miles of interstate highway is what I consider to be the most undefiled of all Christian holidays, a day set aside to recognize that God is good and to thank him for it.
I’m first of all thankful for how God is a rescuing God, and rescues even those who wander far from him. I’ve been meditating on Psalm 107, where I find personal comfort from this stanza:
Some were fools through their sinful ways,
and because of their iniquities suffered affliction;
they loathed any kind of food,
and they drew near to the gates of death.
Then they cried to the Lord in their trouble,
and he delivered them from their distress.
He sent out his word and healed them,
and delivered them from their destruction.
Let them thank the Lord for his steadfast love,
for his wondrous works to the children of man!
And let them offer sacrifices of thanksgiving,
and tell of his deeds in songs of joy!
So much more I could say here. I am a fool in so many ways and nothing else I could show gratitude for can compare to the gratitude to the gratitude of a sinner in the hands of a merciful God.
But on the drive up to Tallahassee, Abby and I came up with several other things we can be thankful for:
We’re thankful that wherever James goes, he is surrounded by love and caregivers. In many ways at this age, his small size works to his advantage, and I recognize it may not always be so.
We’re thankful that, due to the complexity of his feedings and medications, we know all of our parents — JD & Lamons, Bill & Betsy, and Peg — quite a bit better than we did before. We depend on them more than ever before, and are so grateful for the relationship we have with each of them.
We’re thankful also that this complicated situation with James has put us in contact with more friends than we’ve ever had in our lives. Many new friends from many different places, as well as friends from high school and college we’d lost contact with.
We’re thankful that James seems to be doing much better lately with his blood sugars, and he’s embracing oatmeal, the latest addition to his diet, with broad smiles. Most of the time.
Do you here this day recognize your need, and beseech God for the divine grace necessary to accomplish the vow you have just made?
I’m thankful for this last question of our dedication ceremony. My answer to the first question would stand on feeble legs without it.
God, give me eyes to see more of your kindness in the life of James.Meditations on Scripture, Our Journey, Our Journey (chronological) | Comments (6)
James did fantastic in his car seat for the first hour of our trek yesterday. After which point he was quite annoyed at being stuck in a car seat for so long, despite the constant ministrations of Miss Butterfly, who remained cheery the whole time.
There was a slight respite in his crying when we took him for his first time into a Taco Bell for dinner. He seemed pretty happy to put down some food, even if it was the same breastmilk, formula, and enzymes as he was used to. And he slept peaceably in the car for about 15 more minutes before the screaming continued.
When we got to Grandma and Grandpa’s, he stopped crying instantly, and clung tightly to Grandpa’s tee shirt when he held him. The road warrior got a good night’s sleep, and was fed twice through the tube. Today and tomorrow and Saturday will be three more road tests, as we go to Ft. Walton Beach, back to Tallahassee, and back home.
Time to check his blood sugar.Our Journey, Our Journey (chronological) | Comment (0)
Long time no post. Don’t worry, we are doing fine, just busy. We still don’t know the result of the CF test.
Last Wednesday James went to the Early Steps Developmental Center to get evaluated so he can get in-home therapy. We had to answer a lot of questions on a test called the Batell, and they also observed James. It was kind of hard, having to admit that he couldn’t do a lot of things for his age, and then getting scores or “grades” back. The scale is set up so that 85-115 is average, so 100 is the middle of average. Here is how he did, adjusted for his prematurity:
Gross/Fine Motor Skills (Using Hands and Body) 74 Cognitive Skills (Playing, Thinking, Exploring) 97 Understanding & Communication Skills 89 Personal-Social Skills 95 Self-Help/Adaptive Skills (Eating, at his age) 70*
*this was low mainly because he hadn’t started solid foods
One interesting thing that happened there was James transferred a toy from one hand to the other for the first time (I guess he was showing off, because he hasn’t repeated that since). Another was that they rang a bell right next to his “bad” ear, and he startled and turned toward it. We are hoping that maybe he can hear from that side, but it is still too small to get an instrument into to find out for sure.
While we were there, an audiologist tested his “good” ear and had a hard time getting a reading of the volume of his ear canal or a good echo returning from his eardrum. She told us to get an appointment with our ENT (ears-nose-throat) doc to make sure there wasn’t any wax or fluid hampering his hearing.
I wasn’t crazy about James’s ENT, so I asked his office if I could get an appointment with the other doc at that office, whom I had originally asked for. This request touched off a minor drama that ended with us getting a totally new doc at a new office. We saw Dr. Saffran this past Thursday, and he is definitely a winner. He’s knowledgeable, helpful, kind, and confident enough to help us sketch out a plan for James’s future. He looked at James’s old MRIs and CT scan and said they were not detailed enough to see his ear structures completely, but it appeared that the “good” ear was intact with a canal but the “bad” ear’s canal didn’t go all the way through. He gave us a plan for dealing with the possible fluid behind the eardrum, since it was too small to confirm. He also knows some doctors who could operate on James and reconstruct his atresia (meaning tiny canals). He said we would start looking at that seriously when he is about 4, which is sooner than we expected!
James and I caught a cold this week, and while we are both congested, he is also dealing with diarrhea and higher blood sugar. The endocrine office started the paperwork to get his insulin pump, which I am really excited about, but the docs are still looking into the continuous glucose monitor. It isn’t officially approved for children under 7.
James went to his first birthday party last weekend, for his friend Isabella Kuhn. (Actually, her mom is my best friend, and he’s not really old enough to pick his own friends.) He was very social and friendly at the beginning, but later his sugar went up and made him a bit fussy.
Another first this week was his first solid food (solid is used very loosely here), rice cereal mush. The reason we didn’t start it sooner was because the endocrine and the GI docs kept passing the buck back and forth on who is going to organize James’s transition to solids. They still haven’t totally decided, but in the meantime James’s Nana and I got tired of waiting and decided to give it a shot. He only has a little bit once or twice a day, and he usually likes it.
The other drama for the week was a night nurse issue. We love James’s main nurse, Dwayne, who is here 5 nights a week. However, the nursing agency feels like Dwayne is overqualified for a case like ours, and they want to pull him off to a more difficult case. In view of all the nursing problems we went through before we had Dwayne, this is distressing, and I have tried very hard to make them understand how much we want to keep him. Because of the uncertainty of having a nurse and the fact James and I both got sick, I had to call my parents and ask them to come stay with us again. Right now it looks like we have nursing coverage through Thanksgiving week at least.
Coming attractions: James is going to be dedicated at church tomorrow, and for Thanksgiving we will drive up to North Florida on his first road trip!Our Journey, Our Journey (chronological) | Comments (3)
November 1 marked the end of Dr. Albertini’s injunction to keep James at home except for doctor’s appointments, so James is now making his entrance into larger society. We packed the antibacterial gel and hit the road. I had planned to just take him out one place a week, but I haven’t been able to control myself that much. So far James has been sighted at the next door neighbor’s, a church friends’, the park, and the church picnic. He also made his first ex-utero visit to Panera between two doctor visits. Last night we celebrated John’s health insurance coverage by clogging our arteries at our favorite pizza joint.
We saw Dr. Yang and Dr. Desrosiers, the endocrine docs, yesterday. James weighed in at a big 7 lbs. 14 oz.! They were elated about James’s weight gain; the last time they saw him was right before he started the enzymes. Dr. D pinched some of James’s chubbies out of pure delight (or maybe he was looking for injection sites). They measured James’s A1C levels, which tell the average blood sugar over the last month or so, and James got an 8.0. 8.5 and below is considered good, so Dr. Yang was pleased.
I told Dr. Yang that all I want for Christmas is an insulin pump and a continuous glucometer for James. The latter would have to be re-inserted in a new site under the skin every couple days and would read his blood sugars every 3-5 minutes. It wirelessly tells the pump the sugar levels, so you can see a graph of his sugars and whether they are trending up or down. You still have to check his sugar with a heel stick a couple times a day to calibrate the machine, but it would be much easier to treat him with all that data, especially as he moves to solid foods. Of course the insulin pump would eliminate the insulin needles; its site is also rotated every 2-3 days.
Dr. Yang said he thought we could do that since James is growing so fat! We are going to talk about pumps and continuous sugar meters at our next appointment Dec. 11.
Dr. Pollack, the geneticist, called yesterday and asked me if James had ever been tested for cystic fibrosis (CF). CF is the most common autosomal recessive disease among Europeans. It makes mucous build up in the lungs and pancreas so they often have diabetes and need enzyme replacement, as well as have problems thriving so they need lots of calories through a g-tube. When I was pregnant, I was found to be a CF carrier, but John was not. It turns out that that blood test didn’t test for all the possible ways to carry CF, only the most common.
James has several diagnoses in common with CF patients; in fact, I read CF websites looking for answers to my questions about g-tubes and replacement enzymes. His lungs have always checked out great, though, so when I asked at one point in the NICU whether he should be tested, the person (I forget who) didn’t think it was necessary. However, I read online that not all CF symptoms are evident at birth, so I wonder if James could have it and just not have started deteriorating in his lungs yet. I also read that there are different ranges of severity of CF.
The average life expectancy for a person with CF is 37.
Why is my heart faint within me? I try to remind myself to trust in the Lord. Whether James has CF or not, whether his life is to be cut short or not, does not change who he is or how much I love him or how I want to live.
The test will be done Wednesday or Thursday. Not sure how fast the results will be known, but we appreciate your prayers, as always. James says, “Thank ya, Thankyaverramuch.”
Our Journey, Our Journey (chronological) | Comments (5)
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).
The steadfast love of the LORD never ceases; his mercies never come to an end;
they are new every morning; great is your faithfulness.
“The LORD is my portion,” says my soul, “therefore I will hope in him.”
The call came in shortly after 9:00 this morning from the insurance agent to tell me that Blue Cross Blue Shield has approved me for a policy with no additional rate-up, but with a rider excluding coverage on my liver. Thank you, those who read the last post and petitioned the LORD over this.
And thank you, God. It is hard to write this blog feeling crushed under your heavy hand. May this news today magnify your mercy to all who read it.Meditations on Scripture, Our Journey, Our Journey (chronological) | Comments (6)