Maryam's appointment was at 4pm. We got there early so I could talk to her about the appointment and try to help ease her anxiety. There were a bunch of other kids there for her to run around with. They had a big waiting room with space for the children to run around, read books, climb on stuff and socialize with each other. Maryam enjoyed running around with the other children. When all the other children got called into their appointments Yaya read Peter Pan to her. After the book I explain, AGAIN, that we were here to have her button looked at and to talk about all of her good eating. As soon as our pager went off she started crying. I picked her up and took her over to the Specialty Clinic where she was being seen and she was completely hysterical. All of my prepping seemed to have been for nothing! I managed to calm her down enough to get her height and weight, after which she got to pick a toy out of the toy chest.
Meet "Inch", the worm Maryam picked from the toy chest. She practiced playing "doctor" on Inch for most of the time we waited for Robyn and Dr. Katz. She repeated everything I had told her at home, in the car and in the lobby. She looked at his "button", asked him what he likes to eat for his meals, asked him how he was feeling, listened to him breath and talked to him "how doctors talk to patients." LOVE HER. As soon as Robyn came in, she was hysterical again! Ugh. After I got her to calm down a bit, we were able to talk about all of Maryam's progress. Maryam even lifted her shirt and showed Robyn her button.
Robyn informed me that according to the 3 day food log I sent in last Thursday, Maryam is taking in an average of 1850 calories per day! WOW!!! She told us that Maryam has gained 3 pounds since they first met her, she's up to 29 pounds and she's grown 4 inches and is up to over 37 inches tall. She said that her height to weight percentage is 25% and is well within accepted norms. YAY! Which means, she's not too skinny for her height! HOORAY!
At that point we talked in code about taking Maryam's button out. I explained that Maryam has absolutely no recollection of ever using the tube for feeding, but when you ask to take it out, she says no. I think asking her to take the tube out is as crazy as asking to take one of her fingers! As far as she knows, its very much a part of her! BUT, we did it!
Valerie, the financial coordinator for the team, brought toys in! Distraction...I'm all for it sometimes! She picked a dolly hairstyling kit and started immediately playing with the fake blow dryer. I asked her to lay down and she freaked out AGAIN! Finally we just sort of held her in place for a few seconds and Robyn had it out! She put the pressure bandage on her and I picked her up and all was normal again. She pulled up her shirt once to look at the bandage and then went back to playing with her blow dryer.
At that point I told Robyn I needed a picture of her with Maryam. She called Valerie and Dr. Katz in. It was all so wonderful! Robyn called taking the tube out a type of "graduation"! I couldn't agree more. Maryam was afraid of Dr. Katz, I'm not sure why, he doesn't look intimidating. He didn't even have a lab coat on! He was as sweet as he could be with her. After a few minutes, she gave him a kiss.
Here is part of the team that made our lives what they are today. From left to right, Robyn Robinson, Nurse Practitioner for the feeding team, Dr. Katz, GI Extraordinaire, our miracle baby Maryam and Valerie Fregozo, financial coordinator for the team.
These are probably some of the nicest, most dedicated people I've met in my entire life. Their program changed our lives. They gave us as parents the tools to help Maryam learn to eat, they gave Maryam the knowledge and confidence to eat and they change the lives of every other patient that walks through their doors. When their patients come through their doors, they have a 92% success rate of their feeding tubes coming out. AND, they are going to be doubling the amount of patients going through their program!!!! How wonderful is that? Think of the lives they're going to change!
After Maryam's appointment I took her to Disneyland. The parks closed at 8 last night, so we only had 2 hours to jam in as much as possible. We started at Peter Pan, went to Small World next, then on to The Haunted Mansion (which is already decorated w/Nightmare Before Christmas decorations) then Pooh twice! As we were leaving the park Maryam said, "I'm hungry. I need a hamburger and fries please." I love hearing stuff like that!!!
Oh, funny story! While we were in with Robyn, Maryam looked out of the window and yelled, "Hey Mommy! Look, there's Taco Bell out there!" Ha! We don't have a Taco Bell in this town, so it was super funny that she was so excited about it! I asked her what she'd eat there and she said, "A taco, of course." Of course Maryam. Of course.
Here is Maryam today showing off her belly. We'll be unveiling her new belly shortly. While I've been writing this post, (which I started 4 hours ago) we sat Maryam down and asked her about her bandages. We asked her if she knew why they were there. We asked her if she thought her button was still there. We told her it was gone. We asked her if she knew why we took it out. Her response? With a whole lot of glee, "Because I don't need it anymore!!!!!" Then proceeded to high five both of us. She said she wanted her friend Anna to come watch us take the bandage off. So, Anna is here. If only Mommy could work up the courage to take the bandages off!!!! Ha! Once the bandages are off, I'll snap a photo and post it.
PS. The red boots are the boots from Maryam's Halloween costume. This year she is going as Jessie the Yodeling Cowgirl. She hasn't taken the boots off since they came in the mail. She wears them EVERYWHERE, including her CHOC apt and Disneyland. While getting on Peter Pan last night, the ride operator said, "I love your shoes!" Maryam said, as seriously as possible, "Actually, they're boots. Thanks."
