Today’s team meeting was with the Occupational Therapist, Speech Therapist, Dietitian, and Nurse Practitioner… No GI doc and no geneticist.
The dietitian was excited that Ryan has been eating a variety of table foods, especially dairy foods since we originally thought she had a milk allergy. We have recently found out through testing that she does not! Also, since our formula is no longer being paid for, we have started to switch her over to Boost (a pediatric drink) that has the same nutritional value but is SO much cheaper! She doesn’t even need the special formula because she doesn’t have a milk allergy – hooray! We have to try to add as many fats to her meals as possible to get her more calories… butter, gravy, cheese, heavy cream. Basically, she’ll be eating all the stuff I eat and shouldn’t be! Lucky girl! Unfortunately, her weight gain hasn’t been great. She’s only at 18 pounds which is 88% of ideal weight for height. But since we’ve seen the team Ryan has been battling sickness after sickness, got tubes in her ears, and started crawling! The fact that she’s mobile now has had a huge impact on her calorie burning!
The OT and ST were concerned about her lack of chewing and subsequent gagging during eating. Apparently she keeps food in the middle of her mouth and doesn’t move it to the sides to chew it with her molars. Because of that she is grinding her teeth like crazy to try to stabilize the food in the middle of her mouth. When food (or the nipple of her bottle) gets to the side of her mouth she’ll gag on it. She’s also working hard to organize her “suck, swallow, breathe” while drinking her bottle with a fast nipple. She’s on the fast flow because not only does she fatigue on the medium – she wants her bottle RIGHT NOW! So, she’ll be getting another swallow test soon to see how much liquid is going up the back of her throat to her nose on the fast flow as well as see how she is doing with the table food before they allow daycare to start table food with her. I bet she’s totally confused because she eats all table food at home and all baby food at daycare!
The ST recommended that she start speech therapy. Katie and I were a little confused by this because she doesn’t talk but we found out that speech therapy is more like “communication therapy” and they will work on her receptive speech as well as her communication skills – whether that be through talking or signing. Therefore, we’ll be having yet another assessment. On a very positive note though, everyone noticed how social Ryan is and how much she wanted to communicate with them! She was completely uninterested in eating today and more interested in smiling at everyone and engaging them. She was being a total ham!
The nurse practitioner talked to us about her poop and loved on her while giving her a check up.
Three hours later we were outta there!
In other news….
Two weeks ago Ryan got an assessment on her fine motor skills. They pretty much suck. Even though she’s eating table food, she doesn’t pick it up and put it in her mouth. She will be starting Occupational Therapy next Wednesday. She will now be having PT and OT every Wednesday, alternating weeks, instead of PT every week – that was overkill.
Ryan is crawling everywhere. Today we had a first…. I couldn’t find her. Usually Ryan’s domain is in the family room. She’s not too keen on the kitchen because the wood floor is hard on her knees. She usually gets to the edge and just decides to take a little rest.
She was being a real explorer today and ventured all the way to the refrigerator. I left her there to go to the bathroom and a minute later she was gone! I literally called her name 5 times before I found her! Apparently she crawled through the disaster that we call the play room, through the living room, and made it to the stairs! Of course she smiled at me when I found her! That little shit!