We are long overdue for an update. Things have been a little hectic with Jason's new shift assignment and wrapping up at my current job and preparing for my new one - not to mention the purpose for this blog: June's medical care.
In April, June had another evaluation by her developmental therapist through Early Intervention. She noted that June was starting to fall behind in her speech milestones - actually, she is falling behind in all of her milestones except for her social skills. Her social skills were developmentally ahead of her age. After a speech assessment in May, her case manager added speech therapy twice a month to her care plan. There are only a certain number of EI speech spots in the area, so June has been on a waiting list for the last month until a therapist has an opening. We will start therapy with Easter Seals soon, and we are very happy she did not have to wait too long for her services. June was also suppose to have a feeding evaluation in May, but it was a week before her airway procedure so we had to reschedule. When she has her evaluation, the therapist will determine what feeding therapy services she will need and how often.
Back in March when June lost weight and was struggling with breathing, a scope showed that she had cysts on her trachea from being pulled on and off the ventilator. In May, we headed back up to Lurie's Children's Hospital to have the cysts removed. June has tracheomalacia, which is where the support cartilage around her trachea is not as strong, allowing the trachea to collapse. The cysts only blocked her airway further as it collapsed so removing them would help with her ability to breath. The procedure took about an hour, where her ENT doctor removed the cysts and soldered where they were so the cysts wouldn't grow back. Because her airway was altered, she had to spend the night in ICU. By the time they brought her up to her room, she was awake - groggy but awake, which was a very nice change. She had a good rest of the day, resting and cuddling. No matter what she goes through, our June Bug has one heck of a positive attitude. She laughed and smiled with her nurses, doctors, mom and grandma all day long.
With June's weight loss, her feeds have been increased. She is now being fed continuous through her J tube (placed in her intestine) for 21 hours a day at a rate of 43 milliliters an hour, which is about 1.5 ounces. We had to add Elecare back into her milk to fortify it. After increasing her feeds and fortifying her milk, June finally started gaining weight again. At the end of May, she weighted 16 pounds, 8 ounces - we finally made it to nine month clothing! Unfortunately, we had to go to the doctor this past week, and she has started losing weight again. Her breathing is getting loud again, and she started grabbing at her chest and holding her breath until she turns bright red. We are concerned her acid reflux is getting out of control again. Our doctors now have us alternating her two antacid medications so she is getting a dose every six hours, and they have increased her dosage amount to the most she can receive on both. The reflux could be causing her loud breathing because as her esophagus expands to accommodate the reflux, it puts pressure on her trachea, causing it to close more. It is definitely a concern that she is refluxing up to her neck when she gets fed all the way down in her intestine and her stomach is drained all night.
Sawyer turned 3 this month
Helping big brother celebrate - June loved the balloons
