Tuesday, May 13, 2008
Sunday, May 11, 2008
As I mentioned a couple of days ago, Whistle has had a few appointments with a feeding team at a children's hospital in the bigger city. The feeding team is a trio of specialists: a dietician, a psychologist, and a speech therapist, in connection with a GI doctor. (We've been told that occupational therapists handle the part of feeding to the mouth, and speech therapists take over with the mouth, chewing, swallowing and such. Also FYI - for some kiddos, if you miss the 'window of opportunity' for the transition from nursing to oral feeding, sometimes kids develop texture and taste sensitivities, and have psychological reactions to the sight or thought of food. Then, even though there's no physical reason they can't swallow, there are many other factors that come in to play, and eating is a struggle for a lot of reasons.) For Whistle, reflux has always been a major stumbling block. When he came to us at 14 months old (and only 10 lbs, 6 oz), he was being g tube fed 24 hours/day, with a very specialized formula. It seemed like the formula came up as fast as we pumped it into him. (His weight would verify that - one of our newborns was almost the same size. I won't say whom, in order to protect her identity, since she's a blogger). He had a Nissen fundoplication surgery to stop the vomiting, and from then on he was able to keep his food down better, and we switched to Pediasure (think Ensure for toddlers). From that point on, he began to grow. He did continue to have some retching and vomiting, though, and he began to connect the feelings in his stomach with pain, and food became a negative thing for him. He was tube feeding overnight, and had problems almost every morning between 4 and 8, when his stomach was the most full. It was not fun. We tried new formulas, new rates of feeding, and other tricks of the trade, but never could find the right combination. He'd eat a bite or two of spicy or crunchy food, but that was it. Last fall, he went back to eating nothing at all by mouth, and his stomach hurt much of the time.
We heard about this feeding team, and decided to make an appointment with the GI doc who works with them - the first step. For no good reason, it took months and months to get beyond the doctor and in to see the team. In the meantime, we discovered that he did better with a specific formula that is more concentrated that Pediasure (Resource Just For Kids), and when we switched to Resource Just for Kids without fiber, it was wonderful!!! The pain gradually went away, and we saw his appetite returning. Then we were ready to see the team, and hopeful that they could help us over the next hurdle.
Once we actually saw them, they set right to work! Before the first appointment, our local speech/feeding therapist helped us record Whistle's history: what we've tried, what worked, what didn't, and questions from her and from us. She went over all that information with one of the team members by phone, then faxed it. When we arrived, they were well-prepared. They talked to Father and I, and then watched Whistle eat from a hidden viewing room. They said they had no expectations, just wanted to know what a meal looked like for him, so we pretended like they weren't watching (you know how easy that was!). When we left, we had a plan! We were already doing many of the daily things they suggest, but some are new, and some we needed to be more faithful with. One change is to move some of the g tube feedings to meal times to help his feeling of fullness. The most valuable thing they are offering is their expertise on the balance between cutting back on the formula and continuing to grow, plus instructions on how to help him discover the normal feelings of hunger and fullness, and what they mean. We had not seen anyone before who was comfortable with cutting back his nutritional formula, but this group has experience with feeding challenges, and monitors it closely. All things have come together at the right time, and we're seeing successes!
We're not seeing the light at the end of the tunnel yet, but we at least are going forward down the track, and up to this point it's been 2 steps forward and one step back, so we're encouraged.
Saturday, May 10, 2008
Today: May 10th.
We're still here.
This is what we've been doing:
--- Whistle played and the family watched practices and soccer games. (More were rescheduled because of rain than were actually played.)
--- I made two home visits and am writing the home-study for a prospective adoptive family. (Drove 480 miles)
--- Joe got his cast off in the big city. He's walking pretty well. (Drove 280 miles)
--- Hugger celebrated his 23rd birthday at home, at work, at Ben's, at church, and any place else he could think of.
--- Teenager and Hugger attended a surprise 30th birthday party for big brother Ben. George had a birthday the same week, but missed all the celebrations because he was working out of state. Poor George.
--- Father preached at a 3 day church meeting at another church, and we enjoyed visiting with the pastor's family; old friends we hadn't seen in a long time (Drove 250 miles)
--- 4 speech/feeding therapy appointments for Whistle (Drove 125 miles)
--- 1 family visit for Joe and Andy; sibling visits, and phone calls, too. (Drove 100 miles)
--- 3 counseling appointments
--- 3 feeding team appointments for Whistle in bigger city (Drove 425 miles)
--- 4 piano lessons for Teenager, 1 rehearsal, 1 recital
--- 8 or 10 evenings for Teenager working as a companion to senior citizen friend
--- Hosted 3 day church meeting at our home church, with guests at home and serving meals at church; 3 regular Sunday services and 4 Bible studies.
--- Teenager volunteered at the food pantry, and helped a friend's mother with 2 catering events. The same friend spent the night once, and accompanied us to bigger city twice.
--- I attended training on social services agency policies and procedures.
--- Whistle invited big sister Sarah and nieces C. and E. to school for lunch on "Special Friends Day" (also known as Grandparents Day, for those who have grandparents close enough to attend)
--- I'm helping to prepare Foster Care Month celebration in front of the court house later in the month.
--- Teenager finished her school work a week early, took this week off, and will return next week for field trips, awards night, and graduation of the seniors.
--- I attended the annual planning meeting for Hugger with the agency who sponsors his program.
--- And the pre-IEP meeting for Whistle.
--- I attended Muffins with Mom with C. at her elementary school (Grandmas are invited, too)
--- 2 occupational therapy visits for Whistle (2 canceled because of conflicts)
--- Teenager celebrated her 16th birthday.
--- Andy got his cast off, too. He's not walking yet, but last night began standing on his foot, at least. He also got special sandals that hook to a brace for sleeping (Drove 280 miles)
--- Attended funeral for close family friend. She was a 38 year old mother of 8 children, who valiantly fought cancer. (Drove 1400 miles)
--- Home visits by caseworkers, hundreds of emails, phone calls, etc.
--- Whistle performed in Spring Concert with songs about the ocean.
--- Father went to work every day, and worked on the new garage and did spring yard work when he was home and not busy with parenting (sometimes known as "kid duties"). (Drove 32 miles every day, and then some)
--- Joe fell against a metal bench at the soccer game this morning, popped the skin on his forehead, and we made a quick trip to the doctor. No stitches, just steri-strips. He got a big yellow band-aid over the whole thing, because Band-Aids are what's important when you're 3 years old.--- We missed the Kindergarten Reading/Writing Celebration, because some days we just can't get it all together, and we forgot to go.
--- And we skipped the school carnival, because sometimes it's just better to be at home for a change.
That's why I haven't been blogging.
And if the price of gas is still going up because demand is down, it obviously isn't our fault. We're buying more than our share.