June, July, August, September & October Update

We are way behind on writing an update on June. I kept putting off writing, thinking that June might have some significant progress after her surgery that I would be able to write about. Unfortunately, things have been status quo in regards to June's digestive system.

June, July & August

We actually had a wonderful summer! We got out more since we didn't have to worry about germs and viruses with the warm weather and being outside. Most of June and July were spent outside at parks and the pool. June absolutely loved going to the pool. She enjoyed the kiddie pool, but was very taken with floating in the big pool too. While we would hold her upper body, she would kick her legs like a frog and laugh. June also enjoyed being at the park with the rest of the kids. June doesn't get much social interaction, so it was great to have her out around others. We enjoyed going to a wedding as a family, and June tore up the dance floor. We even managed to have a fun day at the St. Louis Zoo, celebrating birthdays with family and godparents without any medical emergencies.

In July, we went to Chicago for testing. We attempted a mini family vacation since we had a couple days of testing. The first day, we met with a pediatric pulmonologist in the north Chicago suburbs. Since June wasn't sick, it wasn't necessarily a productive appointment, but our surgeon wanted us to get connected with one since she is so sick so often in the winter months. The pulmonologist explained that June's constant illnesses could be explained by a couple reasons, and that he would want to meet with us more often closer to the winter months. Last winter, we used June's breathing treatments as a reaction to her getting sick. The doctor recommended that we start her breathing treatments at the end of October/beginning of November and give them twice a day until April. The rationale behind this was that the medicine would stimulate June's airway to keep it open. With June's tracheomalacia (where the tracheal support cartilage is soft that the trachea is able to partly collapse - in June's case, this is where her esophagus was detached from her trachea), a common cold, runny nose, or cough quickly becomes a serious upper respiratory infection leading to June not being able to breath. Last year, June was sick from November to April - we would get her over an infection, only to have her catch another one. She ended up on an oral steroid every month and even multiple times a month. Her pediatrician told us that the negative side-effects of oral steroids being prescribed so often is that they can stunt a child's growth.


After the appointment at the pulmonologist, we headed to Chicago for a speech appointment. At this point, they don't think June is aspirating, but they wanted us to continue to add Thick-It to her water just in case. After our appointments, we went to the Maggie Daley Park. Sawyer had a blast running around on the playground, and June enjoyed the swings. While swinging, someone told us they were giving away pints of ice cream (gelato). June loves ice cream, and can actually it eat, so it didn't take very long to convince her to ditch the swings for some vanilla gelato. For dinner, we were able to meet Andy (Jason's childhood friend and groomsman), Alicia, and kids for pizza.

The next day, the girls dropped the boys off at the park again and headed to June's surgery appointment. We had June's tubes changed. June hadn't been vomiting or spitting out her food for about three weeks, so it seemed like the nissen had finally loosened and everything was going as planned. Of course, the next morning, June vomited five times as we were trying to leave the hotel, including right in the middle of the lobby floor (facepalm). After the appointment, we were able to meet up with Jeanne and meet baby Collette since they were on the Northwestern Medical Campus for a class. We then headed to Lincoln Park Zoo with Kelsy and had dinner at the Rainforest Cafe with Spike and Kelsy. It was awesome to see the possibilities that we have ahead of us when it comes to taking a vacation. I had an entire suitcase dedicated to June's medical supplies and still managed to forget her feeding bags. Luckily, we were able to get some bags from our surgery appointment that we could use to feed June. So note to self, triple check the packed bags!

Throughout the summer, the vomiting has continued. We would have two to three weeks of nothing, and then one day, June would vomit more than seven times. Although we haven't made much progress with June's eating, we started to see her excel with her speech. By the end of summer, June was stringing a couple of words together for short sentences. June also recouped her lost physical skills from her hospital stay in the spring and got back on track.

September & October

The month of September swiftly brought us back to reality. By the middle of the month, June was very sick. She was coughing so hard, she could barely catch her breath between episodes. Nights were rough - many nights, we were back to her sleeping on my chest while I sat propped up in a chair so she could breathe. It started on a Friday when she woke up slightly warm. At this point, we had already started doing breathing treatments with a steroid twice a day, but June was starting to develop a harsh cough. Although June only had a temperature of 99°F, I had a sinking feeling we were heading toward something more serious. Our pediatrician gave us amoxicillin and an oral steroid. After a week and a half of medicine, she wasn't getting any better, in fact, her cough was getting worse. She was coughing so hard she was vomiting several times a day, and she wasn't able to keep food down because the thick mucus was clogging her esophagus.

We ended up on another oral steroid. Since she was so sick, we also made a trip to Springfield to see June's pulmonologist. (Oh, yeah, we decided to change June's pulmonologist to one closer to home since we anticipated a rough winter. Our surgeon recommended a pediatric pulmonologist in Springfield who she works with on difficult cases residing south of Chicago.) He decided that we should get some testing done with June. The first round included a sweat test to see if she had cystic fibrosis and blood work to test for autoimmune disorders. Since we were headed up to Chicago in October, he wanted her labs done at Lurie's Hospital. He also discussed ordering an airway clearance therapy vest. The vest is designed to assist with the mobilization of retained secretions that, if not removed, may lead to increased rates of respiratory infection, hospitalizations, and reduced lung function. It would simulate the respiratory therapy June receives when she is hospitalized. The therapy vest is very expensive (in the range of $15,000-$20,000), so we are hoping we can get it cleared through insurance and prevent future hospitalizations.

With the exception of a day or two of reprieve, June was sick for most of September and all of October. At the end of October, we headed to Chicago for June's surgery check-up. After talking to June's Speech and Feeding Therapist about tube feeding, we decided to ask to switch from Pedisure to blended diets. In her experience, kids' bodies created a lot less mucus on blended diets (potentially too much diary?). We met with a dietician, and she was on board. While Pedisure has all June's vitamins and nutrients to supplement her inability to consume enough by mouth, it has a lot of unnatural ingredients. June's new blended diet, although pre-made, would be from all organic ingredients.

At this point, we are desperate to try anything that will help June stay healthy and out of the hospital. We are also worried about being able to provide June a "typical" life of a toddler. We want her to be able to go to preschool and be enrolled in some activities, but right now, that doesn't seem possible. Last year, June was sick from November to April - she was on an oral steroid every month (which is concerning because she is building up a tolerance and it can stunt a child's growth). This year, her illness have started earlier and so has the medicine even though June has limited exposure to other kids.

At the end of October, we also had June's re-evaluation for Early Intervention services. June did really well in her evaluations. She is communicating well above her age, so we decided to stop speech services. June's speech therapist is also her feeding therapist, so she will continue to work on speech during her feeding sessions, especially on days when eating isn't going well. June is also caught up in her physical abilities. We are continuing physical therapy service over the winter because when June was hospitalized last winter, she lost about 10% of her physical abilities.
If June is hospitalized this winter, we want to make sure she has services in place to help her gain lost skills. Obviously, June is still behind on her feeding skills, so she will continue to receive feeding therapy twice a month.

Thankfully, June managed to get healthy in time to enjoy some Halloween fun before she caught another cold: