Breakfast: toast with butter and some juice
Snack: goldfish and granola bar
Lunch: Perdue chicken nuggets and french fries/turkey and cheese sandwich/Lunchables sub
Snack: Oreos (her absolute favorite!)
Dinner: whatever mama's cooking that night! usually involves a pasta side or some sort of starch.
GLUTEN CENTRAL! That menu is full of gluten and now she can't have hardly any of it. I went grocery shopping on Friday and realized how expensive all of the gluten free food is. I spent almost double what I usually do. For example, a small box of gluten free flour ran be $7.49! I have tried to do my best for now until we can get to the nutritionist and have come up with a menu something like this:
Breakfast: hard boiled egg and milk
Snack: Welch's gluten free fruit snacks and juice
Lunch: hot dog with french fries
Snack: pirates booty and banana
Dinner: (Last night's at least) corn tortilla with cheese quesadilla, rice and corn.
Her menu sucks, to put it lightly. Gluten free food seems so bland and not fun! I am hopefully going to meet up with a friend from my Nursing class who is gluten free (as is her son) and learn some more about cooking for Lily.
She had a bit of a breakdown yesterday when I told her that she couldn't have Oreos. She didn't understand really why. I try to explain to her that she has Celiac and that she can't have gluten anymore. I told her gluten is in a lot of the food she eats and it can give her a bad belly ache. It's really hard for a 4 year old to understand. The complications of eating the gluten is basically like poisoning her intestines. They become inflamed and the villi (small hairs in the intestine) have a reaction. I was able to see the pictures of her intestine from her biopsy and they are clearly "puffy" as best I can describe them.
The endoscopy itself went amazing. We got there at 7am and after her vitals were taken we were immediately met by a Child Life Specialist. For those of you unfamiliar with hospital life, Child Life Specialists are Godsends. They are basically the fun time people. I think they are child psych degree holders and they meet with the children before stressful times and during hospital stays to try to explain things better than I ever could, and to ease some of the stress that your child may be feeling. During Lily's 8 weeks stay at CHB the child life specialist on her floor checked in daily and brought age appropriate activities for Lily to enjoy. Back to the endoscopy; So the child life specialists can back into the pre-op room with us at Tuft's and gave Lily a Dora game to play with. She then let Lily decorate her gas mask and handle it and become familiar with it so when it was time for the anesthesia she wasn't nervous about the mask being put over her face. She also let Lily decorate a pillow case with fabric markers and got a portable DVD player, with Dora on it, set up that came right in to the OR with us. She also took Lily on a tour of the PACU and let her peek inside of the treasure box that she could take a toy out of when the procedure was over. After talking with the doctors, Lily was rolled in to the OR on my lap on the gurney. We sat together in the OR as she was given the Nitrous Oxide (laughing gas) first, and had the silliest look on her face, and then she was given the general anesthesia and put out. Jimmy and I anxiously waited in the waiting room (which had this cool monitor where everyone was assigned a patient number and we could watch how far along she was in her procedure and when she was being brought to the PACU). The endoscopy took place then. An endoscopy is when they take a tiny camera and go down through her mouth into her stomach and duodenum (small intestine) and they took small cuts of the stomach and intestine to biopsy. They also did a pancreas stimulation test (because she does have such a complex issue with her pancreas) where they put some medicine in Lily's IV to stimulate the pancreas to secrete enzymes which were then taken to pathology. She was intubated (put on a ventilator) during this procedure. We were immediately brought to the PACU as soon as she was done. She woke up really miserable from the anesthesia. She didn't complain of a sore throat (which I thought she would) but complained of everything else. She hated the IV in her arm. She didn't want to drink. She was just all around miserable, and I can't say I blamed her. She got to watch some of a Barbie movie, and we sat there while she was given fluids until she finally agreed to drink a little bit. She took a toy out of the toy chest (they had some good stuff in there! She got a mini laptop!) We took her home and she was was pretty grouchy for the next 24 hours, but then was back to her bubbly self!
She made me so proud that day. She is such a tiny little girl and is constantly undergoing tests. It is sad when I can honestly say that I wasn't even too nervous about this procedure. Most Moms would freak out thinking that their little baby has to go through this, and trust me I wasn't a calm cucumber, but I wasn't feeling wicked scared. I knew that she had gone through more invasive procedures and I know she did great with those. I guess I am just as used to all of this as she is. It is really sad however when you tell your child you are going to Boston, and she thinks that "Boston" is a doctor's office. She has no idea what else is there, but the doctors, and trust me we have been to every museum and child activity Boston has to offer.
So gluten free is going well over all. Any pointers out there anyone? I would love to know how other preschoolers handle this and how it goes at school. I sent in letters and information to Lily's teachers and the school nurse today. I tried to stress the importance of not even having a little gluten, and not even TOUCHING gluten or anything that has touched gluten. I know, nearly impossible in preschool, but worth a try!
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