Yanny

May 2008

Yanny finally was approved for a augmentative communication device. We were very excited to see the ease in which learned how to use the device and move about the system using two switched mounted under his wheelchair tray. Yanny was very serious during the various training sessions he had with the device. He could work up to 90 minutes without a break. Having this communication system will help Yanny get his needs met more efficiently as well as help him communicate easier with his family and friends. Once the system arrives, which could be several months from now, Yanny will be able to use his voice and the Dyna-Vox together to communicate with all people in every one of his environments. This will definitely reduce Yanny's daily frustration with not getting his message across to people who are unfamiliar with his oral speech. We look forward to watching Yanny become more and more proficient with his new communication device.

February 2008
Yanny has been doing very well since he had the g-tube put in. He is less stressed out about eating and is able to keep from getting so thin with the Ensure supplement. Yanny hasn't even had a cold since his last hospitalization! This of course is great news, since his health can be a little fragile as he is susceptible to upper respiratory infections.

Recently Yanny was assessed for an augmentative communication device. He did very well and proved to be a very focused and hard worker. Yanny was able to concentrate and work for up to two hours without much down time. Yanny was able to use his hands fairly successfully as long as his arms were restrained. He even was able to make isolated finger movements with little effort. This control will allow him to access a device easily. We hope to find a funding source for an augmentative communication device as we definitely feel this would enhance Yanny's social life and reduce his frustration when using his oral speech exclusively.

November 2007
Yanny has been out of the hospital and feeling much better for a little over a month now. While in the hospital Yanny received a g-tube to help supplement his caloric intake. Yanny still eats by mouth by now is able to take extra fluids and nutrition by g-tube as well. Since being discharged Yanny has gained about ten pounds which is excellent! An interesting situation happened when Yanny was discharged from the hospital. he stopped all of his self-destructive behaviors. He no longer used his hands to grab at himself or others, his spitting stopped entirely, and he didn't use any bad or negative language. For about a month after his hospitalization Yanny did not require any restraints during the day or night. Recently some of the behavior has returned and Yanny is now back in restraints about 40% of the time during the day and all night long, just to be safe. We are not sure what happened and why the behaviors suddenly disappeared for a month then almost as suddenly reappeared. Still Yanny can be showered and toileted with the assistance of only one person at the moment, prior to his hospitalization it took three people to assist with the same tasks. We are hopeful that Yanny will be safe out of his restraints a period of time every day and that the reoccurring behaviors will not come back full force. In any case we are obviously extremely happy that Yanny made it through the hospitalization and it back home and feeling great!

September 2007
Yanny has been in the hospital since the beginning of the month. He started feeling poorly during the recent heat wave. When Yanny refused to eat or drink we took him to the Walk-In clinic. The Walk-In Clinic sent Yanny home with an antibiotic diagnosing a ear infection. When Yanny did not look or feel any better the next day we took him to the emergency room. After admitting Yanny to the hospital it was discovered through blood work that Yanny's kidney function was not good. While Lesch-Nyhan does effect the kidneys, this revelation was a surprise to everyone as Yanny recently had blood work that looked good. Yanny has also been extremely healthy since joining our family. The blood work also revealed some muscle wasting which is not consistent with this disease. Yanny's unusual blood work results has the medical professionals scratching their heads. No one has any idea at this point why Yanny's blood work shows muscle wasting and we are all hoping that Yanny does not have another disease besides the Lesch-Nyhan. Right now we are anxiously waiting for Yanny to be discharged home.

July 2007
Yanny is attending summer school for the first five weeks of summer then he is off to a few day camps. Yanny has seemed to settle in to the Silcock Family household very well. Yanny loves all of the daily activities, he especially loves going to the movies and out to eat. Yanny enjoys his brothers and they are very engaging with him. Yanny enjoys watching the boys ride their skateboards and take Karate lessons. Yanny is involved with MYART Children's Theater and will start rehearsing for the next play in September.

We are still struggling with ways to help Yanny sleep more comfortably and safely. Yanny wakes-up throughout the night and is uncomfortable. It takes at least two people 10-15 minutes to get him in a comfortable and safe position. We have joined specific Internet groups looking for other families who have children with Lesch Nyhan Syndrome. We are hoping to learn from other families successes.

April 2007
Finally!!! Yanny joined our family officially on his tenth birthday! What a great birthday present! We had a nice birthday party on Yanny's group home then we packed everything up and moved Yanny's to our home. Yanny is very excited about joining our family and so are we. Yanny loves having Saul as his roommate. Yanny enjoys Saul's guinea pigs especially when Saul sets them on Yanny's wheelchair tray. Yanny also loves "helping" me with the breakfast. Yanny is in charge of making sure everyone uses their napkin and clears their dishes when they are finished eating. Yanny loves being a big brother and especially enjoys being the "boss."

Yanny's older brother