James has been working on his New Year’s resolution to build more muscle! He has been practicing grasping his new silver barbell rattle from his Grandmommy Peg and working out on his therapy ball. His head control has been improving, but his back still curves a lot when he is being held in a sitting position. His neck has gotten painful, too, causing him to cry for several minutes every time he tweaks it the wrong way. We have seen a pediatrician and asked his physical therapist about it, and they think it is a muscle tightness problem. We are wondering if it is something more, though, since the problem has continued to be pretty serious for over a week.
After all the therapy and tears, James has been more tired. He has also had a slight cold for a week or so. All that beauty rest gives us more opportunities to take silly pictures of him.
James has apparently also resolved to get off the bottle in 2008. He is pretty reluctant to settle down to it after we have tubed his enzymes in. We have responded with (gentle) threats, cajoling, even pretending to drink it ourselves to get him interested again. I am a little worried about him developing an oral aversion, but there is a time pressure from the pancreatic enzymes to get the milk into him while the enzymes are working (some sources say 30 minutes, others say 1 hour). He is continuing with some solid foods, but nowhere near the quantity that he would need to replace his bottles. He is most interested in foods that he sees us eating. Today he had a little bit of bagel, but after moving around in his mouth a while, he spit it out and it disappeared inside his onesie.
We also tried him with Cheerios, which is more a hand-eye coordination activity than an eating exercise since they never make it to his mouth. He managed to pick a few of them up in unorthodox ways, from getting them to stick to his hand, sticking his finger through them, or getting them stuck between fingers. When Dad finally popped one in his mouth, it got stuck to the end of his tongue. When it started dissolving in his mouth, he decided he’d had enough and ejected it.
James also hopes for a better environment in 2008 by solving the gas crisis. Gas is still enemy number one during his feedings, with ventings taking as much or more time as the eating. Sometimes we have to vent him three separate times after he eats because he keeps retching and crying after we think we are finished. He may be rejecting his bottle due to the gas pain. I have scoured the internet to find out how to help him, or to discover when he will be able to handle gas better on his own, but I haven’t found anything that seems to apply. Having long venting sessions, where all his stomach contents come back out along with the gas, is not good when he needs the food to balance his blood sugar levels.
I am feeling a bit cut off from the GI doc because he is moving offices and not taking James’s original nutritionist or the CF nurse who helped James get started on his enzymes. I got nervous because no one has evaluated James’s diet since he was diagnosed with pancreatic insufficiency, so I got the nutritionist at the Endocrine office to see James. After thoroughly confusing her with the details of James’s complicated feeding routine, she calculated that he was getting enough calories and growing at a sufficient rate. His feedings are with 34- and 36- calorie/oz. solutions, by the way, which are incredibly souped up (ha). Normal breast milk would be 22 calories/oz. She didn’t have a lot of suggestions of things to change. I am not sure if that is good or bad. I am slowly realizing that we, the caretakers, are going to be the experts on James who know what works best for him, rather than any health care professional. That is a little scary.
James saw the audiologist this week, but he didn’t continue the trend of improvement we’ve seen so far with his hearing. In fact, she couldn’t get his ears to register anything on the machines, possibly because he was congested. She put him in the sound booth to see if he turned towards noises, and he did respond to the loudest ones, not necessarily by turning but by pausing in his breathing. We are scheduled to get a non-sedated CT scan of his ear bones next week (we may ask them to throw in a scan of his neck as well) to discover what he has or lacks in that arena.
Some fun firsts for 2008 include: eating LOTS of pureed mango, batting a ball back and forth to Grandpa (with help), and starting to learn to pucker up his lips. He now says “ow, ow, ow” loudly after he coughs, which is cute. I also began my special needs network. Kate from Pennsylvania, one of the blog readers, graciously sent James a bunch of extra MicKey tubes, a yahoo groups tip (Special Child Exchange), and a photo of her daughter. Last year I taught the son of her old college roommate. Now that’s a tight network!
Our Journey, Our Journey (chronological) | Comments (3)
Many children around the world suffer from childhood diabetes. James is one of the youngest to be diagnosed since his birth and diagnosis came on the same day. The family felt it would be fitting to promote a cure for diabetes by submitting a 3-foot-square quilt representing James to the Quilt for Life, sponsored by Children with Diabetes. Quilts that have already been done for other diabetic children can be seen at Quilt for Life. James’s quilt is now on the website as quilt #600.
It was not difficult at all to think of quilt symbols for James in addition to his name and diagnosis date, which the sponsors request. “Mr. Bee” was his first favorite toy who kept him company while in the Winnie Palmer hospital NICU. The star is for his 135 days that were spent there, just as the 100 stars someone stuck on his crib were a surprise celebration of his first 100 days of life. The Florida map indicates his place of birth in sunny Orlando, and his tiny footprints (actual size) and weight show his small size at birth. The cross and Bible verse represent the family’s strong Christian faith and eternal hope for James’s future. This website address is a link to this journal. Lastly, the center picture is of James at four and a half months, the day after he came home from the NICU.
The James you see atop the quilt is now a 10 pound 5 ounce baby who has come a long way despite many health challenges. Childhood diabetes is one of his main problems, and it will be wonderful when researchers finally find a cure. James is one of many children who wait in hope for this.
Our Journey, Our Journey (chronological) | Comments (7)
It occurred to me that I had not written a post to the blog since I left for Kenya exactly a month ago. I did return on December 13, and celebrated Christmas and New Year’s Eve with Abby and James and Abby’s parents.
No doubt many reading this have heard some news out of Kenya over the last week. A divided electorate…a close election…allegations of fraud…an opposition candidate who will not concede defeat…rioting, looting…scores of people dead, including 30 burned down inside a church they sought for refuge. Hours from now as I write this, the opposition leader has planned a massive rally in Nairobi which is likely to ignite the conflict even further.
This is the story that you can get on bbc.com or any other international news agency. But I wanted to briefly tell the readers of this blog that there is another story unfolding in Kenya which is very exciting to us. The New Testament in the language of Digo speakers on the coast has been published and launched. I was able to see and savor a six-hour dedication event where the Word of God was unboxed and celebrated. Although there were a couple hundred people, many of whom were Digo Christians, it was an unusual dedication ceremony because there are so few believers of this people group that is so predominately culturally Islamic. In some ways, it was not like the dedication service was presenting the Bible to the sparse Digo church as much as it was like presenting the Bible to God Himself with the expectation the Word itself has the power to be the birth of the Digo church.
This post is not so much about James, but it is about another birth we care deeply about. Like James, this “birth” has numerous obstacles, not the least of which is the present ethnic and political turmoil. But also like James, it will prevail to overcome these challenges by the merciful hand of God.
May the gospel run in Digoland.Our Journey, Our Journey (chronological) | Comments (3)