We went in this morning for our 9th weekly weigh in since we started the feeding tube process. The feeding tube has now been out for 5 1/2 weeks and the past 5 "weigh-ins" have resulted in Nathaniel being the "biggest loser". We were not aiming for that. We were aiming for him to the the "biggest gainer" or at least have greater weight gain than he has had since he was a newborn/infant. He slowly went from his highest amount of 24 pounds even to his weight last week of 22 pounds and 4 ounces (still 1 full pound up from just before the feeding tube was placed). Today was different - hooray!
For the past week we have been doing acupressure massage with Nathaniel. He loves his massages and knows them by heart. We also added a higher calorie Boost supplement to his diet when it arrived on Friday. Daddy started using therapeutic meals and everyone else has followed suit since the end of last week. AND Nathaniel is asking for food sometimes again. He still loves to set the table and be a helper with mealtime.
So what happened today? We went into the clinic and as usual several CMAs, Grandma Betts, and mommy were all standing around for the big "weigh in". (The scale at the office is by one of the CMA pods and Nathaniel is well known at his clinic - Grandma and "Cousant" Analisa both work there and he is there often enough over the past 2 years for weigh-ins and blood work to be well known). He got on the scale and was at 23 Pounds!!!! That is 12 ounces in 1 week (we haven't seen that since the NG was placed). We all cheered. Nathaniel was sort of like "whatever" and just wanted to get his "doggy with the car sticker".
It was a triumph for us though and a relief all in one. I am filling out a lengthy packet of information to get him in for a feeding clinic evaluation. Many pages and many detailed notes from mommy the OT on there. We'll see when we get in and how much more change he has made by then.
Wednesday, September 14, 2011
Sunday, September 11, 2011
Some Days I Think My Husband Could Be an OT
Today was one of those days where something has rubbed off onto Anthony after 7 years together. We started dating when I was beginning my 2nd year of OT school (7 years ago on Saturday) and I talked "OT" a lot during the two years we dated/were engaged and I continue to talk "OT" a lot being in practice for over 5 years now. I know he empathatically listens to a lot of things that I say about work and school (when I was in it), but I also know that he admits that a lot of it goes right over his head. Similar to how I listen to his legal talk, but don't understand most of what he is talking about. Today he proved that deep down there is a little OT inside him.
We were having dinner this evening. Nathaniel requested to set the table, requested noodles for dinner, and began to dig right into his meal when it was presented on his plate. Hooray for progress and happy mealtimes again (I hope). Of course, as usual, after several minutes of eating well, he slowed his eating down dramatically eating very little and needing to be reminded to eat. That is where my husband rolled in to save the day. Nathaniel asked to have "a few cars" at the table for dinner. So daddy brought some over and each car delivered a piece of food. This was a willing game for Nathaniel and he ate every bite delivered plus extra bites off his plate and then sent the cars back to daddy for more "loads". This was a true therapeutic meal. Therapeutic mealtimes are a classic way to get children who have developed aversions to mealtimes, oral intake, etc, to get back into enjoying mealtime and finding it pleasant and fun. Hooray for daddy!!!! He came up with it on his own without me even mentioning therapeutic mealtimes to him during these last several weeks of mealtime struggles. Like I said, something must have rubbed off. (It worked at bedtime snack too - which usually is an ok time, but we had more intake tonight than we usually do). Let's hope we are continuing on the track to eating well again.
On a side note, Nathaniel is tolerating his acupressure massage very well and even knows the routine of massage steps better than I do some days. His bowels have seemed to have slowed down since starting this. I am hoping that this in combination with some periods of increased oral intake and higher calorie boost will help him plateau rather than lose weight this week and eventually begin to gain again (even if it is his slow steady gain of 1 ounce/week). Just being a mom and praying we are now going into forward momentum as well as trying everything I can to make it work and being an OT and using all my sensory processing and feeding knowledge to help him on the right track.
We were having dinner this evening. Nathaniel requested to set the table, requested noodles for dinner, and began to dig right into his meal when it was presented on his plate. Hooray for progress and happy mealtimes again (I hope). Of course, as usual, after several minutes of eating well, he slowed his eating down dramatically eating very little and needing to be reminded to eat. That is where my husband rolled in to save the day. Nathaniel asked to have "a few cars" at the table for dinner. So daddy brought some over and each car delivered a piece of food. This was a willing game for Nathaniel and he ate every bite delivered plus extra bites off his plate and then sent the cars back to daddy for more "loads". This was a true therapeutic meal. Therapeutic mealtimes are a classic way to get children who have developed aversions to mealtimes, oral intake, etc, to get back into enjoying mealtime and finding it pleasant and fun. Hooray for daddy!!!! He came up with it on his own without me even mentioning therapeutic mealtimes to him during these last several weeks of mealtime struggles. Like I said, something must have rubbed off. (It worked at bedtime snack too - which usually is an ok time, but we had more intake tonight than we usually do). Let's hope we are continuing on the track to eating well again.
On a side note, Nathaniel is tolerating his acupressure massage very well and even knows the routine of massage steps better than I do some days. His bowels have seemed to have slowed down since starting this. I am hoping that this in combination with some periods of increased oral intake and higher calorie boost will help him plateau rather than lose weight this week and eventually begin to gain again (even if it is his slow steady gain of 1 ounce/week). Just being a mom and praying we are now going into forward momentum as well as trying everything I can to make it work and being an OT and using all my sensory processing and feeding knowledge to help him on the right track.
Sunday, September 4, 2011
Picnic Time
Nathaniel and I played "picnic" with a bunch of his stuffed animals and toy food yesterday. Today when he woke up that is just what he wanted to do. He proceeded to bring many "friends" and "foods" to the table for breakfast. So this morning we (Nathaniel and I) had breakfast with Baby Stacy, Baby Bruno, and Baby Freddie, as well as several animals, lots of pretend food, and some real food as well. It was a successful meal and he also had a nice sized snack during mass this morning. I hate to say we're turning a corner because we might end up turning back around that same corner in the opposite direction next week. However, I feel happy for the success this morning. Plus there was an added bonus of a pretty fun meal with all of our "friends". On a side note, Sonja dog joined us too. She had to come because "she goes chomp, chomp, chomp". (For those who don't know Sonja is my in-law's dalmation and she has some special needs, one of which is seizures/ticks where she chomps/snaps the air, so every dalmation is a Sonja dog in our house and is thought of very fondly by her favorite little friend, Nathaniel).
Baby Stacy, Baby Bruno, and Baby Freddie ready for the picnic
Our "friends" and "foods"
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