Just a few days before school started, we attended Eli's ARD meeting. What an experience! There were so many people there; both principals, the diagnostician, two speech therapists, the occupational therapist, the nurse, Eli's teacher, and the Special Ed. Inclusion specialists (because Eli will be receiving some services and have special accommodations for eating, if needed). I'm sure I'm leaving a few people out, too. Needless to say, it was a little overwhelming, but Adam and I both felt SO relieved after the meeting! The nurse is going to weigh Eli every week to make sure he is not losing weight. The speech therapists, one of which has TONS of experience with eating and swallowing issues, will be working with him twice a week. The occupational therapist will be working with Eli once a month on sensory issues. Plus, half was through the meeting, Eli got restless so he ended up on the floor playing. Within seconds, his teacher was right there with him, laying on the floor, playing and coloring!
It makes it so much easier to send him to school knowing that he has a loving, energetic teacher!
The first two days were a little tough. They eat breakfast, lunch and snack at school. Both days, Eli came home without having touched his food. Knowing that your child has gone all day without eating will break your heart! However, we also went into this expecting that he would struggle some, so it was somewhat expected that he would not eat at school for a while. So, we came up with a plan! We call it incentive.... others may call it bribery, but it works! We've made a chart where Eli can earn stickers each day: 1 for not crying in the morning, 1 for not having an accident at nap time, and 1 for eating most of his food. If he earns 10 out of 15 stickers at the end of the week, he can get a slushie from Sonic. At the end of the month, if he earned 3 out of 4 slushies, we go do something fun, Eli's choice! After even just discussing the chart with Eli, he began eating at school! He even came home one day with every bowl scraped clean!!! We are so proud of him and the way he has already adjusted so well!
We also started a new tradition with Eli that we'll also do with Ella. We made a t-shirt for Eli with "Class of 2027" on it. We'll take his picture in it the first day of school every year to see how he grows. We also made a sign with information about him on it; his height, weight, age, who his teacher is, what school and grade he is going to, and what he wants to be when he grows up. We're so excited to see how it all changes from year to year!
We've also had another new experience. A good friend of mine makes her own baby food. And after talking with her about it, I decided to give it a try! It is so much easier than I thought it would be and definitely cheaper than buying it! And so rewarding! I basically just make all the things that we were buying, plus a few of my own creations: Pears & Squash, Apples & Squash, Pears & Pineapple, Apple & Chicken, Apple & Sweet Potato, Sweet Potato & Apple, Sweet Potato & Chicken, Sweet Potato, Carrots, Apple & Blueberry, Apple & Oatmeal, and Pears & Oatmeal with Cinnamon & Sugar. I'm also looking for new recipes to try. It made me so happy to see Eli eating the foods that I made for him!! We just cook it till tender, blend it up to the consistency he needs, then freeze it in silicone ice cube trays! My freezer is now full of Ziploc baggies of Eli's special foods!
Before Eli started school, we also had one more GI appointment and procedure. Before this procedure, we trialed coconut. We were really hopeful that Eli would like it and not react to it so it would provide an option for yogurt. Yogurt used to be one of Eli's favorite foods. Actually, when Eli quit eating back in August 2010, yogurt was basically the ONLY thing he would eat for several months. Little did we know, it was one of his highest allergens (cow's milk). Once we got to the appointment, Eli had a horrible asthma attack. We were sent from the GI clinic to get a chest x-ray, then to talk to the anesthesiologist, then to the PA. The chest x-ray showed either a viral infection or asthma, but they were unable to tell which. The PA said that she was certain they would have to cancel the procedure. She told us that the worst case scenario would be that his airway would collapse and he would end up in ICU. Not the most comforting thing to hear.... But, because we came from so far away, she told us to go back to the hotel and do breathing treatments, then return to the hospital the next morning to be re-evaluated. We set alarms for every 4 hours to do breathing treatments; 5 from the time we left the hospital until we returned the following morning. They also gave him one once we arrived at the hospital. After breathing treatments and prayers, Eli's lungs were clear and they were able to do the procedure! At the end of the procedure, when they removed Eli's breathing tube, he coughed really hard for a while. So hard, in fact, that he popped blood vessels in his face. It was a little scary to see his little face like that, but they said his lungs were still clear and he was okay. You can kind of see in the picture below all the red, flushed spots on his cheeks, eyes and around his jaw line.
We received the biopsy results a few days ago and they were clear! There was some inflammation, but nothing too major. We are so excited to be able to add coconut to Eli's diet! Because Eli has a good variety of foods now, we will not add anything new to his diet for the time being and will return to Cook Children's in October for a follow-up with his GI doctor.
We are so relieved and blessed to have such a healthy, resilient little boy. Adam and I were talking the other day about how happy of a kid Eli is, especially considering all he has been through. We ask for continued prayers as Eli goes to school, that he will continue to eat and stay healthy.
No comments:
Post a Comment