Well, Thanksgiving came and went and Christmas is already only a few weeks away. It’s hard to believe that we’re nearing the end of 2007 and that so much as happened in one quick year! Our last update seemed to touch many of you, as we received many comments about how hard things had been going with Victor and us. Yes, our lives are not easy and our reality is far from most but we recognize the many ways we are blessed!On November 3rd, we brought Bernie into our lives: a true blessing! Bernie has been wonderful with Victor and has really been a new light in our lives. We can hardly recall what it was like prior to him being here; it feels as if he’s been with us for years. Bernie bonded with Gary on Day 1, Victor on Day 2 and myself on Day 2
½. Victor seems to really enjoy having Bernie around. Bernie’s already gotten involved with some of Vic’s therapy sessions and has also been to Vic’s school. He takes treats from the kids very gently. He has a special awareness of people and
kids, in general. He will play tug with Gary, hard & rough and the next minute, play tug with Vic, carefully while he gingerly pulls on the rope.Now we spend a lot of our time going on numerous walks per day (typically it was 1x/day) and since we avoid the playground, we’ve now discovered some wonderful dog parks that I can take Bernie and Vic. This past Thanksgiving, while feeling a bit overloaded, we decided to take
it easy and at our own pace. It turned out to be a beautiful, sunny but cold day. The whole family jumped in the car and went to the Sandpoint dog park. It was great and relaxing; Bernie ran around and showed us his comfort level by playing with two new friends but remained by our sides. At one point, Bernie and his new buddies were vying for Vic’s attention and all I can say is, it was a good thing Vic had his glasses on! Needless to say, our lives feel more complete and happier having such a wonderful dog around. We are so proud that Bernie watches out for Victor and have made becoming dog owners, so easy (minus the extra vacuuming of dog hair).Bernie has definitely opened some new doors for us. We love going to the dog park and having something positive to share with people, along with our dear son’s. I’d also like to share that while we avoid most playgrounds, one is finally on o
ur list of places to go (in addition to the Children’s PlayGarden). At our nearby community center, the special swing that I requested in August was finally installed. Last Friday, while walking the Boys, there was Vic’s new swing! I plopped Vic in it and with a look of wonder on his face, he just laughed and laughed as he swung OUTSIDE! When I returned home, there was a message on the machine from the City of Seattle letting me know that the swing was installed. What timing!
Medical update:
Since I last wrote, I discussed Vic’s electrolyte issue and his quick turnaround. That situation still haunts us and is another reason why we feel so blessed. However, Vic’s moods have certainly changed. In fact, his moods change so frequently that it drives us nuts trying to figure out WHY. While Vic’s moods swings are for many reasons it is most certainly related to the amount of oil in his daily diet. Therefore, we have discussed with a new GI doctor the option of changing Vic’s feeding tube to a “G-J” tube will help alleviate the discomfort he feels from all of the oil. Basically, the thought is that the oil would bypass the stomach (the J part of the tube) and go to the duodenum, where it would be highly unlikely that Victor could reflux any oil; Vic’s greatest discomfort and mood enhancer. Vic will have this new tube placed on Dec 19th.
In terms of medications, we have learned that it may take several MORE months for the phenobarbital to completely rid his system, because he was on such a high dose for most of his life. Also, we recently learned that Vic’s lamictal level spiked excessively high to a blood level of 21 (normal is 4-14). Now that we are carefully taking him down from the Lamictal we are also attempting to wean him from the Keppra. With the support of a new neurologist, we are working to see how far we can take Vic off of his current meds to rely mostly on the diet and perhaps try one more medication that is supposed to not have any cognitive side effects.Throughout all of this we have gone through some hoops at our current hospital, leading us to be ever more grateful for the new neurologist we have. We are saddened by the dismissal of one of our closest medical professionals, Patti. Due to unfair circumstances, the ONLY person we’ve found to be truly caring and dependable is no longer going to monitor Vic and guide us through
this horrific medical maze. While dealing with those issues, we were also faced with having to choose Vic’s current diet or our new neurologist. Realizing the absurdity of this option, our previous neurologist has agreed to help us manage Vic’s diet and have our new doctor handle Vic’s medications. Although these situations have caused us extra worry and work, we are grateful that Victor will be allowed the physician monitoring he requires and deserves. Both Vic’s neurologists are wonderful doctors and we feel fortunate to have these options where others do not.I end now with thanks to everyone who continues to think of Victor and us; keeping healing thoughts in your minds. Victor is such a wonderful Light and in spite of his difficulties and mood swings, he still finds brief moments to share with us his laughter and wonderful smile. We wish everyone a wonderful Holiday Season and we look forward to many positive updates in 2008!
THANK YOU, everyone. We wish you the same we wish for ourselves: That this Holiday Season and 2008 be a time of rest, hope, fulfillment, joy and may unanswered questions be answered!-The Leeman Family
Please consider one of the following for your Holiday charity giving:
Boyer Children’s Clinic http://www.boyercc.org/
(Vic’s school, please watch the video slide show)
Children’s PlayGarden http://www.childrensplaygarden.org/
(a wonderful future play space for kids with special needs)
Epilepsy Foundation https://www.epilepsyfoundation.org//howtohelp/donate.cfm?
(Research & education are essential to supporting medications and therapies that may improve Vic’s life and millions of others)
Soulumination http://soulumination.org/victorgallery1.html
(Check out Vic’s page in the Gallery)Washington & Oregon Flood Victims;
"If you wish to designate your donation to a specific disaster please do so at the time of your donation. Call 1-800-REDCROSS or 1-800-257-7575 (Spanish). Contributions to the Disaster Relief Fund may be sent to your local American Red Cross chapter or to the American Red Cross, PO Box 37243, Washington, DC 20013. Internet users can make a secure online contribution by visiting http://www.redcross.org/ ."
