Last month, Leo was scheduled for a swallow study based on recommendations from his pediatrician and pulmonologist. The swallow study was performed mid-April. Much to my surprise, we found out Leo is aspirating again. This time, we not only get to thicken but we have to thicken even more (the "honey" consistency). The recommendation was made to vamp up his therapy for dysphagia (weak swallowing) that he's had since birth. It took a while to find a home health agency on our insurance plan but after working that out, Leo had the evaluation yesterday for "vital stim". It's a special therapy to stimulate the swallowing muscles and hopefully increase their function. He should hopefully begin the therapy 2-3 times per week in just a couple of weeks.
Leo also went to visit Dr. Weakley at Children's for our second ophthalmology opinion. His opinion is ...to not rush into surgery. Hooray!! I always love hearing that. Especially since it's been less than 6 months since the previous surgery. We're now patching the left eye for 1-2 hours per day (although I admit, I've been a bad mom lately by forgetting more times than not...), and Leo will follow up in the ophthalmology clinic in July to see if there's been any change, good or bad. Surgery would likely not be performed until after he turns two years old.
Sleep study #3... the results are in, and Leo still has episodes of apnea. Ugh!! It's no longer moderate, it's now mild, but he still has pauses in breathing even after surgery to remove tonsils and adenoids. He's scheduled to see a sleep specialist at Children's tomorrow. I'm not sure what the recommendations will be at one year old, but it will be interesting to find out. Also on our agenda for tomorrow is a one year follow-up with the cardiologist. Leo will have a repeat EKG and Echo to see if there are any changes to the PFO (patent foramen ovale). It's actually a very common hole between the top two chambers of the heart. His PFO measured a little larger in diameter than most, but we are still hopeful that it may have closed on its own. Please say a prayer for that result tomorrow!
In feeding news, there are still baby steps being made toward texture. We found out during the swallow study that Leo has a "texture aversion". He gags just by feeling the textures on his tongue, before the food even gets close to his esophagus. We are still trudging through the tedious process of slowly increasing textures in his smooth baby food. Oh so slow....
On the physical side of things, just WOW. Leo has come along amazingly in the past six weeks! He is not only transitioning quickly from laying down to sitting up, he is army crawling swiftly like nobody's business. He also began pulling up to stand this past week and has been working on doing that with everything he can get his chubby little hands on! His crib, the coffee table, fireplace, brother's toddler chairs, the couches, the side of mom and dad's bed, you name it! The little boy is on a mission to not only stand, but try to climb or belly up onto things and also starting to move his feet a little into cruising mode. He has thoroughly impressed this momma with his physical determination! He has also given himself a few bruises on the face area when he loses balance, but cuddos to the little one for not giving up.
On that note, I close out with this total cuteness, from our friend Heaven's birthday party this month...
with love,
Joyce
