June's June Update

The month of June was busy for our family. We were finally able to get June's feeding evaluation scheduled and completed. The therapist started with bananas. Usually, doctors recommend starting with vegetables and then working to fruits, but the feeding therapist said that we would actually start with fruit to encourage June to enjoy eating since it is an act that could have some negative association for her. June was actually excited to eat. At times, she was grabbing the spoon to bring it to her mouth. After putting some bananas on her fingers and pacifier for taste and four to five bites from the spoon, the therapist moved to carrots for another texture. June had a couple tastes from her fingers and two bites of carrots. Each time she shivered but she opened her mouth for more.

June's new sleeping contraption
to help with her reflux

Unfortunately, it was at that point that the session went downhill quickly. When June went to open her mouth for more carrots, the food she had just tasted and eaten over the last 30 minutes started coming back up. The therapist was also concerned about how June was progressively sounding more "wet" as the session continued. We went ahead and wrote an Early Intervention goal with our coordinator, so June could get on the waiting list for feeding therapy services, but the goal included that June needs medical clearance from her surgeon to start services. I called our surgeon after the feeding evaluation, and we set up appointments for early July to have more studies on June's GI tract. We ended up needing to vent June's stomach for the rest of the day, as she continued getting sick hours after the evaluation.

We started speech therapy in June and had two productive sessions. During the first session, June just intently starred at her therapist, observing and absorbing all that was happening. But by the second session, June knew that these appointments were all about talking and would not stop babbling.

This month, June also got her helmet. With the extended stays in different hospitals, June developed some flat spots. The right side of her skull protrudes slightly in the front left side. It is not very noticeable, but the measurements were significant enough to qualify her for a helmet and with some possible upcoming hospitals stays, we decided to pursue it. After our initial appointment, June had to come back so they could take measurements to create a helmet specific to her and, more importantly, pick a pattern. We picked up the helmet at the end of the month. The first five days, June worked up to wearing the helmet for 23 hours a day. She gets a 30 minute break in the morning, and a 30 minute break in the evening, when we gave her a bath and cleaned her helmet. The first couple days she sweated profusely as she adjusted to the helmet. We bought a couple fans to help keep her cool, which has helped.

We have started venturing out more as a family, and we were even able to have June's baptism at the end of the month. Unfortunately, with more exposure, June ended up getting very ill following her baptism. About four days after her baptism, June got a stomach bug. Even though she is fed in her intestines, she was not tolerating feeds. We had to stop feeding her and switch to Pedialyte at a reduced rate and work our way back up to full feeds. After a couple days, it seemed like she was back on track, but over the holiday weekend, she developed a bad cough and she would continue coughing until she started vomiting green. Nights were the worst between her not being able to breathe and having coughing fits until she was gagging or vomiting. After a couple visits and late night phone calls to our pediatrician, our doctors decided it was best for us to take June to Chicago to be monitored and run some of the tests that she was scheduled for at the end of the week anyway.

After being admitted last Tuesday, we found out June had parainfluenza virus. Since she was struggling with feeds and losing weight, her surgeon decided to place a PIC line on Wednesday morning to get her nutrition for a couple days. In the afternoon, June went down for the longest esophagram ever (maybe not ever but it certainly felt like it). First the radiology team injected barium through her g tube to see how the stomach was draining. Unfortunately, after 15 to 20 minutes of monitoring, the barium wasn't draining from the stomach. Injecting the barium into the stomach was also suppose to show how her intestine looks after her LADDs procedure last August. Since the barium didn't drain from the stomach, it was difficult to see the intestine between the stomach and j tube. However, after speaking with our surgeon later that day, it sounded like the corrected rotation of her intestine was still in the correct place. During a LADDs procedure, the surgery team stitches all of the small intestine on one side of the body and all the large intestine on the other side (which is why June's appendix was removed). Since the intestine isn't as closely intertwined, it is less likely the intestine will twist again.

The radiology team then stuck a feeding tube down June's nose to inject barium in her esophagus to see how liquids and foods moved through it. The barium also pooled in June's esophagus, even after another 15 to 20 minutes of waiting and tipping the table June was strapped to vertical. Next, they injected barium into June's J tube. Good news finally! The barium moved through the rest of June's intestine and down into her bowel without any problem. Since the barium was still pooling in June's stomach and esophagus, they ended up pulling it out with a syringe (which meant the tube went back down June's nose). June had to have several more X-rays every hour throughout the afternoon and evening so radiology could see that the barium was working its way through her system. Based on the results, June's surgeon explained that she has Gastroparesis, a disorder where the stomach empties very slowly. It can occur after stomach surgery, which June had a few of those. Instead of immediately taking June back into surgery, her doctor prescribed Erythromycin, an antibiotic that is used to treat or prevent different types of infections but potentially could use to regulate the rhythm of her stomach so it will drain properly. Four times a day, we inject .25 ml of Erythromycin through June's G tube. In about two weeks, we will start trying taste feeds (no more than two baby spoonfuls a day) to see if June can tolerate eating food by mouth. If it doesn't work, we will need to consider another surgery in the upcoming months.

  

 Family bike ride to distract from helmet time - June was happy to see everyone else in helmets.

10 Month Photos