She has been doing oral-motor exercises and stretches with him before each session. He has three sessions a day, five days a week. Next, she helps him with chewing with a knobby-teether and some crunchy foods like chips and Cheetos, and Teddy Grahams. They encourage open mouth chewing because it helps him learn to keep his lips from closing to suck on the food instead of chewing. She did say that he performs the act of chewing well, but doesn't really know "how" to us it, ie: how many times to chew, when is it safe to swallow this, what needs to be chewed more than others.... and so on. She said his issue isn't that he *can't* do it, but that he has never needed to know it before...... so he has never actually learned it, he just kinda guesses when he eats something and hopes for the best.
|chewing on the knobby-triangle|
After that, she sets the timer for 15 minutes, or a little more, and works on "sips" and "bites." Ian gets to push the start and stop buttons on the timer, so he can "participate." She started with baseline testing and found that Ian was struggling a bit with water and fluids. They have different levels of being able to thicken fluids, making them easier and safer to swallow. Ian is one step up from water, called Nectar. This makes the fluids slightly thicker so he can feel them and sense them better in his mouth, so he can learn to get use to the idea, and control it better when swallowing. Ian does not cough or "choke" on his fluids when she does this. (example- think of when we swallow and the water goes down the wrong pipe kind thing.) He is working on bites of applesauce which she managed to sneak in from 100% water, thicken water, 50-50 water and apple juice, 100 apple juice, 50-50 apple juice and applesauce, 100 applesauce.......
He works with two therapist who are both incredible..... wow, the patience these women have!!! Right now, I am watching from a monitor in another room. Ian is alone with them in the room right now for a trust bonding time and also to remove me for the time being to teach him they know business. It will transition to both of us later on, and then just me.
Ian's medical status is being taken into consideration as well. They are working on transitioning some of his "feedings" from the tube to come orally until he can wean off and take more foods. This means trying to find a tube meal that can be taken by mouth, but also keep his dumping and his glucose stable. Ian has been quite a challenge for the dietitian. We will start thinking about feeding changes the end of next week most likely, unless he progresses sooner.
At home, we do an evening session. The status seems to be that parents at home are one or two steps behind where the therapists are in clinic because of parental history and knowing who they can play. Ian has been doing fairly well at home.
He has started a new medication to try and help reduce the morning mucous which seems to cause almost all his retching episodes now. He began the Atrovent nasal spray, replacing the Flonase spray. The Atrovent is NOT a steroid, so he can safely have it before bed without worrying about growth and adrenal insufficiency.... which has been diagnosed as very mild. So far, it is helping, but time will tell. Ian's feeding intolerance retching seems to have been at a halt for quite some time, and even better now with the feeding therapy. By getting him to eat orally, the digestion process that occurs throughout the entire body begins immediately..... in the mouth, triggering enzymes and stomach, pancreas effects. All of this prepares the stomach to accept food. Squirting food right into the stomach via G-tube certainly doesn't create a "natural" physiological eating process. Ian is still on the erythromycin for motility since he seems to be keeping things in his belly a little too long. I don't think any meds will be changing soon, but most likely we can wean off some toward the end of therapy.
Everyone at the clinic is very nice and helpful. They seem to "get" Ian, which is incredibly refreshing!!! There are four children in the program at a time. Right now, they are all boys...... 2 two-and-a-half year olds and 2 five year olds. Some of them have similar issues, but Ian is the only one with a feeding tube. Each week there is a comfort hour-support group on wednesdays and thursdays with parents only. The staff watches the kiddos. Also, monday-wednesday, recreational therapy comes and picks them up for OT-type fun down in their playroom. On thursdays, recreational therapy is music-therapy. Also, last thursday, a local music band came and did a cover-band concert in the auditorium for all the kids in all the therapy programs and outpatient clinics at the campus. It was awesome! Ian loved the music, as usual.
|Ronald McDonald House Richmond, Virginia|
|VCU basketball game 2.2.2013|
I am sure there are so many things I am leaving out. Trying to talk about a whole week in a page or so gets tough. I am trying to keep lots of photos and videos posted on my FB page too, as a daily update of what he did that day. It is hard being far away from home, but we seem to be getting into a daily routine thats runs smoothly..... until daddy gets here and throws it all off with late bedtimes and naps ;) After a first day of running late, not knowing where to go, POURING RAIN, and finding my iphone submerged in a puddle of water after 10 minutes of searching.......... I'd say we are making large strides!
Thanks for all the support and prayers. Ian has always been a fighter, but now, being pushed to the edge almost everyday, he needs his "Team Ian Posse" more than ever!
......... and, by the way, my some miracle...... my phone worked after it's retrieval from the puddle and still works.... perfectly!