Maksim Logan Belnap: Update from Las Vegas

It has been a long time since I have updated the blog, and a lot has happened since Maksim's MRI. Maksim got a bad respiratory virus in April, but he handled it without needing supplemental oxygen or hospitalization! We considered this a big PLUS and are hopeful that it was a sign his lungs are getting stronger. He had one hospitalization in May for dehydration, but other than that, he has remained relatively healthy. Probably the biggest news for our family is that Logan got accepted to graduate school in Las Vegas for the Master's of Medical Health Science degree at Touro University. He received this news the very end of April, and we rented our home in Idaho and moved down here the middle of June. It has been a whirlwind for sure!

Since being here, Maksim has had a few appointments with the Nevada Early Intervention Services. His first appointment was an evaluation for services, where they determined what services they feel would be best for him. The services recommended for Maksim were developmental therapy, nutritional therapy, vision therapy, hearing therapy, physical therapy, occupational therapy, and speech therapy. We have done a few of the evaluations, but we are still waiting to be able to schedule the nutrition therapy, PT, OT, and ST evals.

He had his vision and hearing evaluations this week. I really liked the vision specialist he was given! She seems like she will be able to help us a lot with the struggles we have related to Maksim's vision. She also had a few concerns that were validations to concerns that we have always kind of seen but never really thought of. She recommended getting an acuity rating from his pediatric ophthalmologist, because she believes he is likely legally blind, even with corrective lenses.

We have always known Maksim's vision was limited. I mean, you have to expect that when you know he needs glasses at 5 months corrected. On the other hand, I think we clung to the words of a few too many doctors who told us they were hopeful Maksim would be able to drive and learn in school without assistive aides for vision.

Unfortunately, after doing some research, the term "legally blind" makes so much sense for Maksim. Legal blindness, as defined in the United States, is vision acuity of 20/200 or worse. If looking at a standard Snellen eye chart, a person with 20/200 vision can read the top line/letter from 20 feet away, but is unable to identify letters on any of the subsequent lines. Maksim can't even locate me if I am 20 feet away from him and standing still. He is sometimes able to track some movement, but he cannot locate stationary objects from that distance. From what we can tell, there is no way he would be even close to being able to identify the top line of a Snellen chart.

So, Logan and I are trying to wrap our minds around how this is going to affect Maksim and our family. There are so many uncertainties with raising a special needs child, but vision is really scaring us. Of course, we still have to get the diagnosis from the ophthalmologist, but after researching the definition of legal blindness, it is difficult to imagine that is not the case for Maksim.

At his hearing evaluation, we were told his left tympanic membrane and hair cells have abnormal/decreased movement and response to sound. The audiologist suggested this is likely being caused by fluid behind the ear, but Maksim hasn't had an ear infection in several months. She said it doesn't currently look infected, but fluid can still be there. Because of the delays in speech and language caused by such limited hearing, she suggested an ENT consult for possible ear tubes. We will discuss this option with his new pediatrician at his appointment next week.

Maksim has had a really hard time adjusting to the move. Eating has been even more of a struggle than before. We have been lucky to get him to drink 2 ounces of his high calorie preemie formula when he has his bottles during the day, even when conditions are perfect (in his dark room with no distractions). Sometimes he will drink a little more before bed, but not much, therefore leading to multiple middle of the night feedings, because the poor kid is starving. Maksim is very easily distracted, so he actually tends to eat much better during the night, when he is half asleep, but it is becoming quite exhausting to Logan and myself with his intense school schedule and my 6am work schedule.

I think our biggest struggle with Maksim since the move is just knowing how to help him relax and calm down. He is constantly on the move, and constantly acts irritated and agitated. He gets very worked up, and NOTHING in this world calms him down. He doesn't want held; he doesn't want down; he doesn't want food; he doesn't want his blanket; he doesn't want mom; he doesn't want dad. Nothing soothes him. Taking him in public is impossible, but keeping him home is also discouraging and exhausting because of the same reasons. I just wish there was something I could do for him. I honestly just wish that I could hold him and feel his body and mind relax because he knew he was in his mother's arms. :(

We have witnessed so many miracles on behalf of Maksim, and we know we will see many more. We continue to pray for strength for our family as we learn to adapt and adjust to each new setback. As always, thanks for your continued faith and prayers!

We hope you enjoy some pictures taken during our adventures since moving to Sin City! :)

Las Vegas LDS Temple