Over the past couple of months, we've had a few ups and downs. I've been meaning to update this blog, but it's challenging enough to get through our typical day and accomplish everything that "has" to be done! I literally think to myself in spare moments - "get the have-to's done first- clean syringes, redose meds, feeds set up for baby, laundry, food for other kids- well, I attempt to get meals done, but don't always accomplish that!"
So to catch up on the past few months-- The hypoglycemia/hyperinsulinism has normalized. I keep a glucometer with me at all times, but haven't had to check Caleb's blood in a long time. Oddly, we never found a reason for this, but also that is a blessing! After we got home, for weeks, the baby was throwing up every day, multiple times and had an odd cough. His stomach ph level was very low and should be around 4 (it was 1.7), so his throw up was so painful/ burning from acidity. While trying to figure out the cause of his throwing up/ cough, he was sent for an X-ray which showed he had pneumonia in his right lung. He had already been on and completed two doses of antibiotics for ear infections, so this was a third to battle this. Thankfully, he got through that scary diagnosis fairly smoothly. Unfortunately, it seems that once someone has gotten pneumonia, they are highly susceptible to it.
He had a scheduled appointment with audiology to check his ears (which is routine for kids that are high risk due to being on the vent for prolonged periods). I never suspected any issues and was shocked to learn that he has mild-moderate hearing loss. One ear had fluid (automatically fail- so they will retest later), but the "good" ear presented hearing loss. He was referred to an ENT to follow up on the fluid and formulate a plan. The doctor scoped him and found that he has a significant amount of mucus that sits on top of his vocal box. We have known he has extra secretions and constantly hear him "gargling" so this was the visual. The question is whether it is caused from the allergies/ sinus issues, or from reflux. They added singulair to his allergy meds of zyrtec and flonase and said to completely cut out milk. He will have tubes put in both ears when they do his cardiac catheter to hopefully diminish the fluid that is a constant in his ears. After that, we will decide the best plan for his hearing.
In the meantime, we are all working on sound and language development. We try to get him to mimic sounds as well as learn a few signs to give him a way to communicate his wants. (He has learned the signs for 'more', and 'all done' and uses both appropriately!)
He has gone from throwing up daily, to not at all! Almost simultaneously, we saw drastic differences in his feeding.
He has made tremendous strides in therapy. Caleb is kind of/ almost eating!!! He loves Honey Nut Cheerios and will sit and put them in his mouth and chew with his mouth closed with the most adorable little movements. Typically his bites eventually fall out, but we are just super stoked with what he has progressed to. He sits and eats meals- cookies, salmon, bacon, sausage, bread, applesauce!! His desire for independence has been a game changer, as well. He wants to use a fork or spoon or use a beautiful pincer grasp to put food in his mouth himself. Please pray that this continues and increases, because it is HUGE!
He is also making progress in his desire to walk. He goes from sitting to tall knees frequently, and has gone to a standing position one time on his own. Although his sure step inserts make it hard to crawl, they help him so much when working on standing and walking. He loves to practice walking and is very proud.
Halloween was a blast-- freezing, but it didn't slow down our crew. We had a beautiful butterfly, two green aliens, one Captain Underpants (yes, he did create his own outfit and I just let it go!), and the most precious chunky cheeked Mickey Mouse!
