Happy New Year!

The boys had a great Christmas! It was nice to have such a long break with all of us at home together. Stewart was really excited about Santa this year and was thrilled to pass off his wish list to Santa (of course, we snuck it back into my purse for safe keeping!). Henry was also excited to see the presents under the tree. Although he didn’t unwrap anything himself, he enjoyed playing in the boxes!

Although both boys were on antibiotics before the holiday break, we ended up having a very healthy break. I’m sure someone will pick up something by the end of this week once we are all exposed to school/work germs again. Oh well… we’ll just keep practicing lots of hand washing!

Henry has done a great job eating and gaining weight over the past few weeks. His G-tube wound has healed up nicely and now just looks like a second belly button! He is also much more comfortable moving around on his belly and can now slide down things (like the couch and the stairs) on his belly, something he wasn’t able to do before. He is now eating from a spoon! Unfortunately, it’s not so much the spoon now but what’s on it! He still will not eat any purees, but has fallen in love with rice, couscous, and peas! He has also decided that anything we are eating, he should be eating too! As a result, we must be careful to ensure that there is something on our plates that is dairy-free that he can enjoy with us! Due to his progress, we have reduced his feeding therapy appointments to every other week. He still needs to strengthen his muscles for chewing and also work on drinking from a cup.

Henry will start to receive Occupational Therapy (OT) this year to address his sensory issues. Although I feel that his sensory issues are minor, we have seen that they have inhibited him, especially with feeding. There are many things that Henry wants to eat and will try, but he gets frustrated and upset because he doesn’t want to touch/hold certain foods. Once this happens, he stops eating altogether. An Occupational Therapist will work with Henry to overcome this. We are currently working on identifying an OT.

Before the holidays, we met with a Nutritionist at UNC. She was very happy with the progress he is making and we are happy to share that he is now on a growth chart! Although he is still under the 3rd percentile for height and weight, his height to weight ratio is at the 5th percentile! Hurray! We are also happy to share that Henry has had “catch up” growth! Based on his weight from the last couple of visits, the Nutritionist calculated that he is gaining an average of 13g per day. Typical growth for a child his age is around 5g per day. “Catch up” growth for preemies is expected to be between 10g and 20g per day. She also calculated that for Henry to have “catch up” growth, he needs to consume 900-1100 calories per day. Over the holidays, his average daily calorie consumption was 980 calories. Go, Henry! He now weighs 19lb, 0.5oz!!!

Henry seems to be tolerating his medications well and they seem to be dosed properly. He is taking Prevacid for reflux, Pulmicort for Eosinophilic Gastritis, and Periactin as an appetite stimulant. He is also taking a Probiotic supplement and Digestive Enzymes for digestive health and a daily multivitamin. Although the Periactin is an appetite stimulant, the Pulmicort (which is a steroid) also has a side effect of increased hunger. We’re not sure if one or both are helping, but we can definitely see that Henry has a bigger appetite than he used to. Henry’s feeding therapist, Krisi, asked me today if it was ok to use Henry’s case as an example when giving seminar presentations. She said that Henry is a textbook example of a child who requires the appropriate medications for GI comfort in order to properly eat. Unfortunately, many feeding therapists do not work in a hospital setting and are not able to communicate freely with the medical staff concerning GI needs. In addition, many feeding therapists and doctors have the belief that feeding aversions are primarily behavioral. I strongly believe that feeding aversions are due to an underlying physiological discomfort. Unfortunately, due to common beliefs, many children continue with behavioral feeding issues once their conditions are addressed because identifying the cause for discomfort has not been a priority (or a realized need). I am thrilled that Krisi would like to use Henry’s case to help educate medical staff and correct the common belief!

Henry has also done well with his physical development. He only has one milestone left to reach - jumping! His Physical Therapist said that once he learns how to jump, we can reduce his PT appointments to every other week! Continuation of PT after this last milestone will focus on building muscle strength as Henry still has low muscle tone.

Of course, there always seems to be another bump in the road to round things out! Before the holidays, we discovered that Henry has a hernia. We meet with the GI surgeon later this month to check it out and determine our path forward. We have heard that sometimes the medical team will decide to wait and repair hernias in a couple of years. We’ll see… I wouldn’t be surprised if it is decided to repair the hernia later this year, and possibly do a follow-up endoscopy to check his Eosinophilic Gastritis at the same time.

During Stewart’s school trackout in December, we enrolled him in an indoor soccer camp. This was the first camp Stewart has been to that wasn’t associated with the YMCA. Although he was a bit sore, he loved it! Since Stewart loves soccer, we looked into enrolling him for the winter season. The coaches were very impressed with his skills and invited him to be on the Select 6-7yr Team! This was a great surprise, as you have to be invited to play on the Select Team! We are very excited and are looking forward to his first game this Saturday!