It’s already July and Victor is now two years-old! He had a wonderful time at his hoedown held June 10th at the Leif Erickson Hall, down the street
from us. About 50+ guests enjoyed dancing to the fun Cajun band and noshing on sandwiches and cupcakes. We had a great time; reconnecting with people we hadn’t seen in a very long time…it was all-around a good time filled with great memories for us. THANKS Laurie, for putting it all together and THANK YOU to everyone who contributed!
June proved to be as busy as we expected. Early June, another of my sisters; Noellyn, came to visit. She came during Vic’s actual birthday and was able to join Gary & I (along with other friends) for Vic’s Seattle Film Festival debut. It was fun to actually be a part of the film festival and see us playing with Victor on a huge screen. We also enjoyed cocktails post-film with friends.Later that week, Victor & I made it up to Whidbey to visit our dear friends; Dana, Vada & John. They surprised us with a beautifully decorated ice-cream cake in celebration of Vic’s b-day. We had so much fun with them that Vic and I didn’t return home until 10:30pm!
The rest of the month has been quite busy with work, school, therapies and multiple appointments per usual. But we were able to round out the month with two outdoor zoo concerts (with Brian, Yvonne & Conor), support the Ronald McDonald House by drinking beer with our neighbors and fit in some "Gary & Laura" time with friends at a nearby hip restaurant. THANK YOU Rebecca, Kristy & Powell!!
We are delighted to share photos of Victor wearing his new glasses. They arrived the day before his birthday and he tolerates them quite well. Although he doesn’t lift his head the way I witnessed at the doctor’s office, he certainly seems to focus better and really takes in the world around him. At a very recent follow-up appt. (this past week), the doctor was very pleased to see Vic in his glasses and performed a small series of tests with another set of prism glasses over his current lenses. Sure enough, Vic lifted that head up and loo
ked around the room. He seemed very pleased with himself. The plan for now is that the prism lenses are on order for us to use at home (with the advice of the doc) and during his Vision group at school. For those of you not familiar with prism glasses, the lenses are thicker at the bottom than at the top. They force the eye to look upwards. The type that are on order are meant for testing/therapy at the clinic, as the lenses are enormous and may be rotated in various directions to train the eyes. Vic’s current glasses are also prism glasses but the power is only a 1/3rd of the training lenses.
MEDICAL UPDATES:
MRI & Spinal tap- The results showed that Vic has a loss of brain matter but he is myelinating at the rate of a typical 18-21mo old. The spinal fluid test showed that he is not missing any neurotransmitters.
Chiropractic-Vic has had 5 adjustments since he began at the beginning of June. It is too early to tell whether the
chiropractic has helped control seizures or aid with his motor delays, but we have seen a reduction in seizures and an increase in him lifting his head.Cranial Sacral- We continue this treatment on a weekly-basis. It is also difficult to know how much he is impacted by this, but we feel that it does help.
Phenobarbital- Vic is now at 15mg/night.
Pyridoxal Phosphate- According to one of Vic’s docs. This vitamin is widely used throughout Japan as a first line of treatment for kids, like Vic, whose Sz’s are harder to control. We started this today at 1/3 the advised dose and will gradually increase it. We are testing it for about a month, before we’ll know if it’s doing anything for him.
Reiki-I continue to give Victor Reiki just about every time I hold him. Having this gift has helped me so much in how I cope with Victor’s issues. It is so wonderful having something that I can do directly for him, helping not only Victor but myself and Gary also.
Seizure Update:
Being Mr. Predictably Unpredictable, Vic’s Sz’s seemed to have changed literally just after his last EEG
. While his Sz’s appear to have lessened, we witnessed one absolutely horrendous Sz that lasted just shy of 5 minutes. It was one; we had never seen before and left us unsure if we might have to call 911. Seconds before we were about to administer Diastat, he finally came out. This Sz was so disturbing that I was unable to eat dinner and go to yoga that night; it had exposed the same feelings I had when we were first in the hospital doing tests.However, since that horrible night, Vic’s stronger of the 3 types of Sz’s he has, have decreased. It’s almost like he peaked and he’s on his way down (just my feeling). While we don’t track Sz’s like we used to, we’re guessing that his Sz’s have decreased to about 2-5/day with some quick twitching-like Sz’s. He even had a day where his first Sz wasn’t until 5:30pm!
Currently, we are in the midst of changing Victor’s entire school/therapy schedules. For months, we’ve struggled with juggling everything against his strict diet, his constant reflux and his naps. Finally, we will have Victor on a morning schedule whereby school and therapies will start at 9am each day. Hopefully a more regular schedule will allow him to rest and recoup as is so vital for him!
NEXT UPDATE: Early August.
The photo to the left shows Vic's new toy/communication learning tool. With some of his birthday money, we bought him a red button, bubble machine and power link. When he hits the button, it activates whatever is plugged into the power unit; lights, a fan, music and his special bubble machine. He played with this while we worked in the yard for over an hour and loves the bubbles! THANKS EVERYONE!
