Busy Leeman's

First, I must address any concerns people may have for Victor. Victor is doing Ok. I realize that some of you may have worried about him as I’ve taken a bit of a Blog hiatus. Life sure has been busy and it’s simply been difficult for me to the find uninterrupted time to update this Blog and do a host of other things.

Now, to backup a bit as my last post was weeks before Christmas; I am delighted to say that our Holidays went very well. We took time to relax a bit, put our long standing basement project on hold and enjoyed time with each other and with our new best friend; Bernie. Not only did the Holidays bring us celebration with close friends it also brought us together as a family in our home. Each Holiday that we steer clear from rushing to the hospital for an unforeseen event, we feel blessed as we recall too well, Victor’s 1st Christmas (and Halloween).

At Christmas time Gary did a wonderful job setting up the tree again with trains rushing around the base. And, Victor made Gary very happy as he really has shown the same liking to trains as Gary. Vic literally was so happy about the trains that we feared taking them down. Gary rigged the train to one of Vic’s buttons, so that he could activate the train himself. Victor loved it (see videos on youtube so much that we often placed him in front of the tree just so he could listen to the train sounds. We even recorded the train before dismantling everything and regularly play the sounds as a way to soothe and distract him from a cranky fit he might be in at the moment. Since then, Gary has purchased a smaller train for Victor that now permanently is affixed to an eye level table. When Vic needs trains, we pull out the table and he’s in his train zone!

Regarding some health concerns: prior to Christmas, we needed to address the issues surrounding Victor’s inability to gain weight because he was having a difficult time keeping down the oil required for his daily caloric intake. So, Victor had his new G-J tube placed. I’m happy to say that the tube procedure went extremely well and has made a huge difference for Victor. He has been able to tolerate his feedings and had finally begun to gain weight again.

Then, right around Christmas Victor began teething again-- Yes, the last of his big molars; which meant that he wasn’t sleeping and neither were we. Thankfully, after some serious convincing from our doctor’s office we were able to secure Respite Nursing care at night. Sure, it’s odd having someone else in our home while we’re sleeping but we’ve finally been able to catch up on some much needed sleep!

During all of this, Victor’s seizures have continued but stayed steady at less than 5 per day. However, his sound sensitivity had most certainly increased and so much so that he can hear the slightest sounds which may sometimes trigger a seizure. It is most frustrating! The hum of the TV, a sneeze, something dropping, a change in verbal tone or a sudden burst of sound of almost any kind has seriously been an issue for him (us). So, we now rely heavily on those soothing train sounds and I’ve recently purchased earmuffs, which we use when we predict a regular burst of sounds. We have become just as sounds sensitive as Victor.

Another method we practice is using a special CD intended for kids who are sensitive to sounds . I’ve been playing it in the car To/from School and need to get some good headphones for him to practice at home. Also, I’ve learned about Listening Therapy; which is a method of exercising the inner ear to help with balance, concentration and desensitization. I recently met with a woman who specializes in this and have met a few parents who swear by it. However, while we would like him to begin this therapy, because it is so intense we are going to try this therapy next fall instead.

In the meantime, we’ve decided to focus attention on Victor’s vision and work with what he does see. Although, Victor is technically blind, we know that he has vision; it’s just that his vision is extremely poor. The thought is that if we can shift his focus on the visual world that he won’t rely as much on the sounds that bother him. At the end of March, I will take Victor to a few sessions of vision therapy at his optometrist’s office.

Most recently, Victor caught the same horrible stomach bug that many kids seem to be experiencing these days. It was an awful experience. He couldn’t keep anything in his stomach for 16 days. He literally lived off of chicken broth and salt water (helps with loss of electrolytes) and was extremely listless. He missed a lot of school/therapies. At some point, he somehow managed to pop out his new G-J tube, which brought us the ER on Valentine’s night and back to the hospital the next morning for them to replace it. Along with the stomach bug, surprisingly, Vic’s seizures nearly diminished. Our guess is that his ketosis must have been so deep that he just wasn’t having the same activity; another sign that this Keto Diet is actually helping him.

Now, taking us into mid-March, Victor has finally bounced back to his cranky stubborn self. He has more energy than we’d seen in some time and has been keeping his seizures below 5/day, sometimes as little as 2 or 1! Victor is showing some improvement in all areas when all of his little stars are aligned. He needs a lot of warm up time and when he’s warmed up, we see little signs of him wanting to do more.

At this I will end and ask that you keep your fingers crossed for his next venture; which is hippotherapy. We’ve been on the wait list for over a year. I was recently contacted by the therapist and will soon set up an evaluation; whereby he’ll be riding and strengthening his low tone areas. I hope that my next update will include stories of him riding on a horse and loving it!

Thank you for reading, sharing and your continued support!

Next Update (soon)???