School and Happy Mealtimes

A lot has happened since Kyle's last hospital stay. He has been out of the hospital (other than the usual routine appointments and an outpatient swallow study or two) since 11/1/09!!!

In September last year, I started work at our favorite children's hospital - All Children's Hospital - doing registration/admissions in the Emergency Center on the weekends. At first, I had applied for a full-time position but it works well for me to be home all week and only work 12 hour shifts Saturdays and Sundays while Chris can be at home with the kids.

Kyle was hospitalized the last week in October 2009 for a touch of pneumonia.

Kyle did very well in the PreK at Curlew Creek Elementary School. My mind was put at ease as soon as I met his teacher, Ms. Laurie Curti, at Orientation. I explained to her that Kyle was on a feeding tube and did not take food by mouth and asked if she had ever had experience with any other children with feeding issues. She put my mind at ease by telling me that she had over 30 years experience in PreK with special needs children and had seen just about every type of developmental or feeding disorder. She said that she had in fact, in a previous year, had a student with a feeding tube and he had been eating by the end of the school year!

When Ms. Laurie asked me if Kyle was potty trained, I felt sheepish admitting that he was not. She told me that it was no problem, but she instructed me NOT to send any diapers - or even Pull-Ups with him! She said to get him underwear and send 5 complete outfits. Anything soiled, she would put in a plastic bag and send home for me to clean and replace, always keeping 5 complete outfits available. He was already using the potty sometimes after just the first week, and was completely daytime potty trained by a month!

At first, the main dilema was that by school system policy, they could not feed him anything - or even give him water to drink - in the classroom until they had a report from a successful "swallow study" clearing him for food and drinks. A swallow study is actually called an OPMS (oralpharyngeal motility study). During this test, the patient is seated in a chair attached to X-ray equipment while food/drinks with barium powder in them are given to the patient. Using the X-ray, they watch to see whether the food goes down the esophagus to the stomach or if there is aspiration (the food/drink going into the airway instead). We set up for Kyle to have a swallow study 10/1/09. He had been cooperating somewhat with pudding and similar textured foods at home but he fought heartily against the pudding, milk and juice we used as test items to the point that we had to put the pudding in a syringe and force it into his mouth. Despite the lack of cooperation, they were able to see the pudding go down the esophagus with no aspiration so they were able to clear him for puree foods and thickened liquids. However, the school couldn't accept this report alone because it was not an MD who signed off on it. It was a SLP (Speech-Language Pathologist). So then I had to have the GI (gastroenterology) doctor review the SLP's report and write a note based on the report saying that Kyle could have puree foods and thickened liquids.

As soon as the teacher got the okay, she began giving Kyle pudding, yogurt, mashed potatoes and other puree consistency foods as well as using a food processor to puree whatever she could from the regular cafeteria menu each day. In no time, he was eating daily almost full meals pureed at school. At home, however, he still fought us on anything by mouth. Sometimes it even seemed as though he fought harder at home the more he cooperated at school!

Since he was doing so well at school, Ms. Laurie wanted to take it to the next step so we scheduled another swallow study in April 2010 and Ms. Laurie even came along to help. She took the helm and the experiences were like night and day. Not only did he not fight, he laughed and sang during the study. The biggest problem they had was getting him to sit still, looking straight forward. They even fed him cheese puffs dusted with barium powder and he crunched and swallowed them like it was nothing. The test was a success and we were able to get the clearance for him to eat easily chewed solids at school. Although he was still fighting us at home over even pudding or yogurt, at school he was eating full meals for breakfast and lunch - soft spaghetti, bananas, grilled cheese sandwiches and more. Though it was frustrating that his success didn't carry over to home, it gave me hope that he wouldn't be always dependent on a feeding tube.

Not only was he doing well with eating, he was becoming more physically active, less timid, making friends and learning loads. He would see a sign with an "L" and he'd shout out "L for Ms Laurie!" or he'd see an "O" and shout "O for Olivia!". It wasn't long before we could ask him how to spell his name and he'd grin and say, "K-Y-L-E!". He was also taking the regular school bus with Hannah to and from school (except on days when he had private therapy appointments). He was so popular with the older girls. On more than one occaision, he came off the bus with a "love letter" from a little girl on the bus - just a piece of paper with I love Kyle scrawled on it and signed with the little girl's name, but he treasured it like it were gold.

Unfortunately, since Summer vacation started, he still doesn't eat for us at home and now he's only at home. But he's finally been accepted and scheduled for "Happy Mealtimes", the intensive feeding therapy program at All Children's Hospital. Starting August 16th, Kyle will be seen four times a day, Monday through Friday, for four weeks! During this time, I will be staying in the Ronald McDonald House with Kyle and my parents will be taking care of the girls during the day at home while Chris is at work during the week and then on Friday nights I'll bring him home so Chris can take care of him and the girls while I work and we'll go back to All Children's on Monday mornings. This promises to be a challenging four weeks and I'm sure I'll be sick of the hospital - possibly even moreso than when Kyle was in NICU - by the end of this.