I’m sitting in the pre-op with Sal for a quick ear tube replacement. One fell out just this past week. He should be beyond needing ear tubes, but continues to have infections and drainage. As you may remember, the one time we did try to hold off, he ended up with a very bad infection causing lack of balance, discomfort, and more speech delays.  This did not help his already existing plethora of uphill battles. Our ENT quickly agreed to a replacement in our appointment yesterday, so here we are today in surgery.  (Tuesday)

Sal knows the pre-op rooms well and it causes lots of immediate anxiety and stress. Shaking, tears, refusal to put on the hospital clothes. Luckily the iPad is charged and slothy 🦥 came to the hospital. Child life visits and their hospital gifts also help! Play-dough to the rescue.  The wake up will be tough but we will get through it. 

Other big, not so great, news is that thus far all of our eye therapy mitigations did not help his sight in his right eye. We did the VR technology, atropine drops, and unsuccessful patch (minimally). He has glasses that luckily he religiously wears. Still no luck. I was not surprised with the digression as I saw it in his day to day. 

We were able to get pictures of the back of his eyes. We’ve been working on getting these pics for 2 YEARS! The machine comes very close to your eyes, one at a time, which you must remain perfectly still, looking at a blue light for 10 seconds with no movement or blinking. Ha! Well, basically impossible for little squiggly Sal with sensory issues. But… we did it!!  With those images came the confirmation the issue is not with his actual eye. This issue is from his brain not communicating to his eye. He is officially diagnosed with CVI - Cerebral Visual Impairment or sometimes called Cortical Visual Impairment. This is a disorder caused by damage to parts of the brain that processes vision. (Thank you Google).  The sight in this eye has become so poor, he is legally blind (also diagnosed this week) in his right eye. The good news… he has fantastic vision in his left eye. He can legally drive as an adult with one good eye. There will be a few challenges with the basic loss of one eye, but he will not know anything different. We will continue to try to support the weak eye and maybe there will be new technology or medical advances in the near future. Stay hopeful with us 🤞. 

The positive news about these diagnoses is he will get visual impairment support within the school system in his near future. (More about this near future change below.). After speaking to a friend of Alex’s family that works in this field, he will receive a team of specialists that help with learning, sensory, and classroom needs through special education vision therapy as an additional layer. If there is anything that comes from knowing the issues, it is support follows! 

Updating post surgery now: ear tubes went well! A bit of bleeding during surgery reported, and they only replaced the 1 tube, left the other in place to avoid future damage (permanent hole, scar tissue,etc.) since he’s already had multiple of these procedures. We decided to not do an IV when he was under which now that we are out, we will note that no matter the little amount of anesthetic, he needs an IV for post operative meds. Whew. Lots of pain and nausea. (Neither of our clothes survived.) Poor kiddo had quite a bit of ear pain. We are back at Bevie’s now, so juice, pizza, and movies are finally helping in healing. 

Speech eval this week - Long and short, we have moved beyond basic language and into two different aspects; articulation and selective mutism (some OT and some anxiety based needs for this as well). There are other aspects to address, but for now we want to focus on his confidence and use of language within play, learning, and life skills. His language has grown incredibly with the use of ADHD meds. The short of the long, starting new meds at 6 years old has given this amazing child access. Access to friendships, play, body control, and language!! We are so grateful for modern medicine (obviously on many levels) but his speech and behavior increases with meds in particular at his stage of development are absolutely, unequivocally life changing. So our jobs as his parents and his trusted people, play in a language based way that does not pressure him with questions, but allows him to find his own verbal avenues and confidence. And, find next steps for the selective mutism piece (choosing to not speak at all in certain situations which are usually due to anxiety/confidence.) We are hopeful with the continued intentional confidence building this issue will naturally correct itself.

Last, our next move as a family. We’ve decided to move to the East Coast. I will not get into all the details now, soooooo MANY moving parts. Long and long, kids will start school in August in Higganum, CT. The school district is phenomenal with special needs supports and diversified, rigorous general education. I could go into more, but will save that for another time.  Medical wise, the amazing aspect of the East Coast is ALLLLLL the available resources. We are being referred to the Kennedy Krieger Institute for their pediatric Traumatic Brain Injury Rehabilitation program. Apparently this is the best of the best of peds TBI and our Denver team is excited for us to be a part of their program and research. We will travel to Baltimore for this once we are on that side of the world. We will go to the Philadelphia Children’s Hospital for their Pediatric Ophthalmology Clinic where we are being referred to docs with both Pediatric Ophthalmology AND Neurological backgrounds (2 of the 10ish docs with this background are located in Philadelphia). We will see the Yale Child Study Center for developmental needs and potential selective mutism needs (supports to accessing language when uncomfortable or shutting down). We will have other various appointments through either Yale Children’s and/or Connecticut Children’s Hospital, plus having other of the many resources at our fingertips. Finally, the school system will provide and be a wealth of knowledge and rehabilitation during his time with peers. Their support systems in house are beyond anything I’ve ever seen within a school district or individual building within public education. 

We still have his special care clinic, dental, neurosurgeon, and follow up with ENT in the next week. Sal is exhausted. I am exhausted. But, we (I) am always happy to be in Denver to have all of Sal’s needs met by this amazing team. To note: while I’m so excited for this next chapter, I am equally incredibly heartbroken to leave the supports we have in Denver. This medical team has become more than the docs we see, but the people that are a part of our community. I cannot even delve into this now as I will start to cry. All in all, I’m grateful and grateful and grateful.