It’s been a while since I’ve updated! It has been crazy, usually about 2 trips to the cities a week! We’ve seen GI, Dermatology, ENT, Surgery, Audiology, Opthmalogy, Infectious Disease, Neurology, Interventional Radiology, and the Speech Pathologist this month.
To sum most of it up, Easton is switching to a new high- super high cal formula now that he is old enough. This also gives him a 3 hour break of the pump (21 hours hooked up)!!! We are about 1/2 way through our slooooww transition into this. Trying not to upset his gut by transitioning extra slow.
His hearing took a nose dive over the last 3 months. In Decembe, his hearing tests were flawles. This month, he miserably failed. His eardrums showed almost no movement and he responded to only a few tones. While this is crappy news, it does have some hope. His ears have a TON of fluid in them, which could be impacting his hearing. So, he will be getting tubes put in his ears in a few weeks and then 6 weeks later his hearing will be retested.
Other check ups showed his glasses are doing their job and preventing the cross eye. His neuro development is still behind but his doc is hoping he will catch up. We keep a close eye on that, as if he falls too far behind he will need more therapy and a special type of pediatrician. We had to get a new Infectious disease doctor becuase our old one left to do more CMV research, but we like our new one too! His skin condition is getting to be better controlled with meds. He had to have his tube replaced emergently as it broke, so our IR team helped us out by squeezing us in on a Friday afternoon.
Now TODAY, he had a swallow study. A swallow study is a test done under fluroscopy (think a video x-ray). They have Easton sit in a special chair and drink a solution mixed with Barium. The Barium shows up on the x-ray film and they can watch where the things he drinks go and how his swallow functions work. This is to test if Easton is still aspirating (some liquid going into the lungs instead of the stomach/ not protecting the airway while drinking). At 3 months old, he aspirated all consistencies (thickened and thin). At 6 months, he was cleared on honey thick liquids (Very thick). At 9 months he was cleared for purée as well. Today, his results were more inconclusive. He passed on thick and thin consistencies (yay!) with some heavy stipulations. He aspirates on ALL consistencies, again, when he drinks independently as he drinks too much at once. He chugs. So, no straw or open cups, no syringe feedings or sippy cups. He can have any type liquids off of a spoon. I ordered a special therapy cup as well that only allows a tiny amount out each time it is tipped. But this means that he can eat foods that are thin liquids too, like berries and melons!
Later this week we have 2nd opinion at the Mayo Clinic. Hopefully that will go well. We will also have speech and physical therapy as well as a pediatrician appointment with a weight check. I also am still waiting on my own tests results from my docs ❤️
Easton as always, is a cheese ball. He is making milestones in his own sweet sweet time. Being cute as ever, and loving his kitty cat, trains, and books. He has also been a little sick, hopefully just a cold, and has become attached to my hip. He won’t even sit in a shopping cart or on the floor next to me! So that’s fun.
Thank you for supporting us,
Emma💕
Comentarios