learning to navigate the world, j-bear style

Tag: doctors

A Little (In)Sight

I cannot remember the first time I noticed it with exact dates or times. I only remember that he was very, very small. Newborns do not focus their eyes well, but babies start to. Toddlers assuredly do so even better, yet somehow, J’s right eye was always seeming to turn inwards. It was typical of me though to constantly question myself. Was that really happening? Was it something to be concerned about? Growing up with a lazy eye myself was on my mind, so I kept watch on it.

Last year, it grew more obvious. He was definitely dealing with something in terms of his vision. The strangest part was this child has never missed a beat in terms of picking up on visual stimuli in his environment. An issue that truly affected his sight to any measurable level was not the first thing that came to mind, strangely enough. He was and is a very visually stimulated child. The journey began to figure out why this one eye decides to do its own thing.

Our first visit to an ophthalmologist was horrifyingly bad.  The woman advertised herself as working with young children and people with disabilities. She claimed to be a developmental ophthalmologist too. This should have uniquely qualified her as someone able to work with a kid like J.

Nope. Nope. Nope. Nope.

She was a nightmare. She was impatient with him, he could not settle in her office and I spent the entire appointment chasing him around to try to settle him while she complained about his lack of cooperation. I’m sorry, but when you’re about as personable as a cactus you’re going to get what you give. She charged us a stupid amount of money for the privilege of learning nothing we needed to know. I was angry and discouraged.

Then we went to the pediatric ophthalmology department at Floating Hospital. This was a whole new world! The techs that work there have a truly golden touch. Our first visit was not perfect but it was good enough that the doctor could see that there was something there, something to be kept watch over and something to try for better assessment of in the future. She did not dismiss us nor did she push J so hard he was in hysterics by the time we left. She worked with him, not against him, his best interest firmly at heart.

That first visit was in December. We were newly home with Brooklyn so her place by his side was not as solidified. She was there for him at the appointment but it wasn’t what it could be. Flash forward to late April…

Perfection. Absolute perfection.

J walked into the office without a fuss. He attended to what the doctor asked him to do, no coaxing from me. I assisted with directing him to reading the board across the room but little more than that. She got an excellent read on what exactly he could and could not see, plus what his vision needed. This visit the crossing of his eyes was very, very clear to her as well. Brooklyn stayed nearby and kept a watchful eye over her most calm of boys. He struggled having his eyes dilated but that was expected. Once the drops were in, his good humor returned and he did just such an impressive job with the rest of the visit.

two pictures together

I cannot even get over the cute here folks.

Trying on glasses was a hardship but he did it. He now sports some dark blue Miraflex glasses that can withstand his level of activity and just general J being J. He has taken to wearing them much, much better than we all expected too. The entire team (doctor, therapists, family) had a plan in place with a back up plan for that plan if he rejected the glasses. They have not been needed yet. He has truly, truly impressed all of us.

The amazing thing is hearing him speak even more about what he sees. Let me tell you, he sees everything and is fascinated by it. Most parents enjoy their children detailing the world as they see it at a younger age… I am so excited to be hearing it now. Car! Truck! Bird! Helicopter! Clouds! … His observations are quick and cheerful. He loves the world around him, so very much.

And every dog is Brookie.

It’s another new little chapter in our great adventure of life adding glasses to his world. He is adapting, he is growing and he is continuing on his own amazing course. It is not always easy but it is the successes that come, like this one, that make any pitfalls seem so very small.

Return of a Problem?

Yesterday we did something awesome that was mentioned on Facebook but that I will go into detail next week. Suffice to say J had a lot of fun and we made a new friend.

On the way home, something troubling happened. This kid is, in general, a great car traveler. He hunkers down in his seat and watches the world go by. He’s gone on very long car trips many a time and just plain done great on all but a couple occasions. The lesson was learned the hard way that rear facing and him do not, for any reason, get along and once that was remedied he’s mostly had great success.

So why then did he vomit, violently and suddenly, just as we were pulling into our driveway yesterday?

Yeah, I know, it’s “just puke”. Yet… it’s not. Remember, this is the child who was routinely vomitting several times at points. Having him only puke once a week was a relief. This is a major component into why his tonsils were removed: his vomitting seemed primarily caused by gagging since they were overly big tonsils. He could gag on water sometimes, it was beyond frustrating. The tonsils came out on June 3rd and apart from just after surgery (anesthesia is mean) and a bad incident with too much dairy on a 100 degree day (baaad)… There’s been no sign of recurrence.

So either he has a bug which I cut off at the pass with a dose of zofran last night, it was just a fluke, or there is something going on. He has been having staring episodes again which frightens me every time they happen.

Back to calling doctors I go. This merry-go-round, it is NOT fun.

What a Week

This past Tuesday, we visited the ER in the wee hours of the morning. I wrote about how frustrating that experience was.

Wednesday afternoon, J spiked a violent fever and would not accept fluids. His diapers were dry, he was starting to vomit up what little he had taken in… We returned to the ER. 

The experiences were night and day. This is why we should in future seek out a pediatric ER that is open in the middle of the night. This hospital, while great, closes the pediatric ER at midnight. 

The nurse was warm, understanding and respectful of J. The doctor was thorough, compassionate and most of all she listened. When I expressed concern about his throat, she braved checking it even though he hated it. She noted that because he is non-verbal, she was going to be a bit more thorough than usual which was fine by me. He had a chest x-ray and abdominal x-ray, both of which were handled by a very gentle and very patient radiology tech. I held him, she coaxed calm from him and between us the experience was not nearly so awful as it could have been.

Both x-rays came back clear, too. Major phew.

Apparently there is a violent virus going around and if there is a violent virus going around it comes to visit poor little bear. His doctor noted at our follow up yesterday that this fever might linger, as it had already, but knock on wood he’s seeming alright this morning.

I am up to my eyeballs in vomit and mucous stained laundry. I am wearing hot pink sweatpants because that’s all I had clean. I cannot remember the last hot, good meal I had. 

But the fever is down. He’s showing signs of his usual mischief. He just dragged his snotty nose across the top edge of my laptop screen (OMG REALLY?! guh. yes I took time to sanitize the daylights out of THAT maneuver).  He will have a bath later and hopefully we will have a nice if low key Easter.

Happy Passover, Happy Easter, Happy Spring, Happy whatever holiday you might celebrate this time of year and if there’s none – Happy Saturday and enjoy the Feast of St. Markdowns on Monday.

Oh, The Woes of Paper Trails

Today I took J-bear to an appointment with his primary care doctor.

This woman is lovely. You can speak with her easily and casually, she relates to you like you’ve known her for years and she looked after my son with tender care when he was dearly sick as an infant. 

Yet, since August and his inital diagnosis of autism, I have had no feedback from this doctor nor have I had any cooperation from the office staff. Referrals were a nightmare to get, staff repeatedly ignored requests for information… This was not what I was used to from her or her staff. 

Cut to today…

I walk in and explain about why we were there (follow up about his diagnosis, plus recent problems with intensive defensive gagging) and she just stared at me. She had never been told he’d been diagnosed with autism. She had no record of any of the paperwork sent to her, or requested from her, from all the agencies involved with his care. 

Let’s break down how many people would have had to drop balls here:

– Early Intervention sent her nothing?

– Tufts Floating Hospital for Children / Center for Special Needs sent her nothing?

– Kioko Center for Pediatric Occupational Therapy sent her nothing? 

– Building Blocks, the early intervention arm of the Northeast ARC, sent her nothing?

One or two groups dropping a ball, I could see. But all of them?! That seemed a bit far fetched. I felt so awful for his doctor. I truly did. She saw immediately to pushing his referrals through for the evaluations he has upcoming and made a plan for how to investigate the cause of his defensive gagging, including speaking more to his OT and getting his evaluation results from Tufts Floating back in two weeks to make sure we do not subject him to redundant testing. 

This weekend, I have to find all his glorious paperwork in my possession and put it together to copy for his doctor. I keep it in two binders since each therapist outside of his OT gives me a note at the end of every visit so it’s easy to just keep everything together. 

I admit to feeling so much better about his doctor but so much less confident about his office staff.

A funny story from the visit though:

J-bear decided while the doc and I spoke that he was going to open the office door and peer out. He would open the door a crack, peer out, say bye to whomever passed and close the door. He did this several times, finding it the most amusing game on earth. Whoever thinks children with autism cannot be socially motivated clearly has not met my little guy! Granted, he refused to talk to his doctor or when prompted by his doctor but he did speak with me, give her a high five, and demand to leave by saying all those “bye”s. 

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