As most of you know, Tuesday we had the family interview with the Multidisciplinary Feeding Team at Children's Hospital of Orange County. Our appointment was at 8am and went to nearly 11am. Of course we were late thanks to our stupid GPS Garminita...I hate her. Anyway, it went amazingly well! First off we met the team. There were 6 of them and sadly I don't remember all of their names. They put us in a room with a window where they could see us, but we couldn't see them. They watched us attempt to feed Maryam her breakfast. Of course, being that it was the morning, Maryam didn't eat anything! It sucked. She did manage to get one Cheerio into her mouth, then proceeded to spit it out.
After about 20 minutes of us trying to feed Maryam, the Speech Pathologist and Occupational therapist came in. The did some more observing and talked to Maryam and asked us questions. They were in there with us for about 20 minutes. Next the Psychologist and Social Worker came in. They were with us for about a half hour asking us questions. After they were finished the Nurse Practitioner and Dietitian came in. They were in with us for another half hour and asked us even more questions! I am SO glad that Brett was able to come with me. Being asked all those questions was a bit nerve racking.
After the interviews we met back as a team in a conference room. At this point, one by one, everyone started giving us advice.
1. Continue participation in family mealtime.
2. Begin to limit feedings and snacks to mealtimes rather than grazing at random times. (apparently its been proven that children eat more calories and quantities at scheduled mealtimes over snacking and grazing all day...who knew?)
3. Transition away from distractions during feedings. Work with OT to use rewards rather than distractions to help with feeding. (They suggested getting a book and letting her turn the page when she takes a bite. And putting the book away until she takes that next bite.)
4. Allow access to flavors even if spitting it out. (They said we're doing a great job of letting her try everything. That we need to continue to let her try any and all flavors, textures and foods that she asks for.)
5. Continue with current OT as back-up. (Of course, we love her!)
6. Slowly incorporate a juice into her water by drops. (They want us to put a few drops of juice in her water and VERY SLOWLY start adding more if she tolerates it.)
7. Blenderized G-Tube feedings either before or after admission. (We decided to wait until after admission. We want to ensure she gains as much weight as possible between now and the admission.)
8. For retching: nortriptyline 1 ml at bedtime by G-Tube. (I guess this is an antidepressant that works on the stomach's chemicals as well as the brain chemicals...who knew?)
9. If working well, in 2-3 weeks try Cyproheptadine as an appetite stimulant at bedtime. (This is an antihistamine that has a side affect that causes hunger! But it stops working, so she is only to take it 5 days a week.)
10. Return to the feeding clinic in April to meet up with the team to go over any progress.
After all the GREAT advice we got GREAT news, they want to admitt Maryam to the 3 week intensive feeding clinic!!!! w00t! Woohoo! Hooray! Holla! (Insert exclamation of choice here!!!) Her admit day is going to be May 4th and we'll stay for 19 days. Only one parent stays the night with her and Maryam only gets to leave twice. Both times will be on the second weekend and for a very limited amount of time. Only 4 hours on Saturday and 6 hours on Sunday.
The first week will consist of the therapists feeding Maryam. On the second week, I'll start helping and by the third week it will be all us...I THINK. I still have a million questions and as they get answered I'll be sure to post them for my curious readers.
Thank you again for the many prayers, well wishes and good vibes sent our way, they worked!
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