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)???

Dec 2007

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 our 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/ ."

Oct 2007

It’s amazing what can happen in 7 weeks! We’ve done and been through so much these past weeks that I can hardly think of where to begin retelling it. Let’s see….following Labor Day we’ve plugged along with Vic’s weird(er) diet. Vic already had trouble with keeping his food down on the diet but with the replacement of dairy to oil, he clearly has issues with it. With the inception of the oil diet, it has been even more difficult on his system, leaving him crankier and urpier than ever!

Since I last wrote, Vic has not been taking regular naps and in fact, his sleep habits have been horrible and have only recently improved. For over two months Vic has been quite difficult to put to sleep and stay asleep. These past two months it has been like dealing with a newborn, but worse. It had been difficult to lay him down for naps or to just lay him down to sleep. Regardless of how tired we knew Vic would be, he would wake up multiple times through the night. Gary had been living on 4-5hours of sleep each night! Two weeks ago, after several nights in a row of trying to give Gary a break, I finally phoned our nurse and told her that we are at our wits end. We’ve been unsure as to whether he’d been having seizures in his sleep, causing his sleeplessness. I wasn’t sure if we needed to do another overnight EEG study. She suggested we do a sleep study to see if he is having apnea of any kind and perhaps another VEEG. We are still waiting to hear as to when/if either will happen.

Of course, literally the night following my phone call to the nurse Vic actually slept! Our “little noisy car” has been on good behavior almost ever since I made that call. I now know, and I suppose I always have attributed most of this to that damn teething! This is how it goes…he wakes up grinding, the grinding leads to upset stomach, he pukes, he cries and wakes up. Frankly, all of us have been wiped out with the teething, the diet, and trying to figure out what his meds have been doing to/for him.

If you recall we had an issue with his Lamictal in August. Since then, we’ve been wondering when the lamictal may have spiked in his system which could add to the impending sleeplessness, crankiness, upset stomach. Mid Sept, we flew down to Reno to visit with my family. Although we stayed in a nice resort in the privacy of our own apartment, the trip for us was extremely difficult. Victor was so sensitive in every way, leaving us unable to relax, especially Gary. Vic was still having trouble keeping his food down and was more sensitive to oral feeds than he had in the past. With the stress of travel, in general, Vic’s health issues impacted our ability to fully have a good “vacation”.

It gets worse…literally, the morning of our return flight, two hours prior to leaving for the airport, Vic profusely vomited. Nothing would stay in his stomach! I was a mess! The preparation before travel with a child is always stressful, but now we had to deal with deciding on whether we should reschedule our flight or take him to a local doctor. With the ease of his g-tube and the feeding pump we use each night, we connected him to water and kept him hydrated. He settled a bit and we opted to get home ASAP. We gave him an ativan to calm him down and thankfully, he did.

I did lots of Reiki on the flight home and sat nervously in our back row, while both Gary and Vic had time to catch up on sleep. We weren’t sure if we should take him straight to the hospital when we arrived, but he literally perked up when we got to Seattle. A few hours later, he was able to take in some food through his tube and keep it down. We skipped school the next day and I monitored him. It was as if nothing had happened; he was smiling here and there. I contacted our nurse, told her our story and requested that we test his Lamictal level. We weren’t sure if the lamictal had indeed spiked and had caused all of this commotion. I took him in 3 days later for labs. The results showed that his lamictal level was ok but he had lost so many electrolytes that he was in a fatal state. Basically, had we not requested a blood test for the lamictal, Vic could have had a heart attack and died! The solution: salt water. Since we had changed his diet, he apparently was lacking the sodium he needs, causing him to have an upset stomach worsened with all of the oil. In a matter of days, the salt water has made a huge difference! He is not puking like he was and he is actually quite happy.

With his stomach calmed but his teething kicked in, his sleep disturbed, two weeks ago, the day Gary planned a retreat to help work on a friend’s cabin, Vic had an enormous seizure! The night prior he had hardly any sleep at all, falling asleep at about 7am. I let him sleep until 10:30, woke him up for breakfast and while he sat in his highchair, he convulsed like I’d never seen. Meanwhile, Gary was outside working on our fence. I knew this seizure needed Diastat—no watching the clock, I just had to give the emergency med. I grabbed Vic, ran to his bedroom, yelled out the window for Gary and started to Diastat him. Gary finally came in, we gave him the med and Vic eventually calmed down (me too) and went back to sleep. It was horrifying! I really thought it was going to be a 911 situation. Vic slept that afternoon until 4pm and eventually slept through the night! Gary canceled his retreat.

Needless to say, perhaps you can see the pattern here. Sleep is vital to Victor’s system! Not having had enough sleep, combined with the hard teething, set him into a horrible cycle of seizures.

After dealing with that situation, the past 2 weeks have literally felt blissful. We did another blood test and found that his electrolytes have stabilized and his lamictal did spike. We regularly give Vic salt water and are weaning him slightly from the Lamictal to get him to a level that is safe for him. He is sleeping more regularly and napping but we do have intermittent days. He has been happy—and I mean, like any baby is. He has been so happy and giggling, it is such a joy! To see him smile and giggle at the things he sees or does, gives me the most tremendous feeling of gratitude that I can hardly express it here. Our little guy is so strong, it amazes me what some people (including myself) complain about and I look at this child and think, “he is a miracle”! He is showing me how to love more than I ever thought I could, how to be patient and how to appreciate the life and health that I have.

Throughout all of this hell, we’ve managed to try and remain as Normal as is possible. In September we fit in a zoo trip and day trip to Gig Harbor. Last weekend, Gary (and partly I) finished putting in a fence adjacent to the crazy rental house. We are now searching for a dog for Victor. Eventually, we plan to fill the side yard where the new fence is, in with woodchips and make it a dog run, where Gary also plans to build a shed and dog house (of course). The basement project is coming along and we’ll now re-focus some attention there, if we can get someone to watch Vic while we pound out some frustrations in the basement. Vic has been in school now for several weeks and really enjoys being with the other kids. I continue with weekly yoga and Gary regularly swims. Hopefully, we’ll have a chance to go on a date soon too!

Life sure is a mystery!

Next Update: After Thanksgiving, if not before then.

FYI: we have the ability to video chat with our cool new MacBook. I “chatted” with my sister in Mexico for 2 hours. If you can video chat too, let us know so we can set up a chat time.

Summer 2007

Ay, caramba! It’s already the evening of Labor Day and only now am I finally able to update Vic’s blog. It sure has been a busy summer; filled with fun and peaceful moments with friends, interesting obstacles for Victor (and us), and back to the basement for Gary.

My last update was just before the 4th of July, which was fun, indeed! The family took in some local patriotic tunes down at the Locks and then we hosted a small BBQ/cocktail hour with friends and neighbors. We even stayed up late with all the kids, taking in the Lake Union fireworks (seen from our bedroom window). Following the 4th, came a return trip to Whidbey Island for Victor and I, where we spent the weekend with our dear friends, taking in a local street fair and walk through the woods while Gary moved the gas line. Don’t worry…all is well, Gary did a great job and even had the gas company inspect his work (for free!).

The month of July remained busy with our typical Vic appointments, school, work, and Mom & Dad time (yoga for Mom and swimming for Dad). Thankfully, though, we were able to round out July with a special visit from friends we hadn’t seen in awhile and walked to our local Ballard Seafood Fest.

August started out on a fun note; literally, as we took in the last of our Summer Zoo Concerts on a perfect Seattle evening listening to Bela Fleck & the Flecktones. We also made time for ourselves by taking a weekend to enjoy some things outside of Seattle. We took Vic to the very small Cougar Mtn. Zoo and then to Snoqualmie Falls. Vic was a bit lethargic that day but we had a great time, leaving the city! The next day, after waiting in a very long ferry line out of Edmonds, we went to Kingston and meandered around Port Gamble; an old mill town with very quaint buildings and hardly any foot traffic (a bit Steven King-ish). We then ventured down to Bremerton and walked around the coolest ferry landing in WA while waiting to board (who knew!). The ride toward the Seattle skyline was absolutely gorgeous!

During many of our weekends, however, Gary worked diligently in the basement while I entertained Vic. Out of one weekend, we even got a new staircase leading to the basement from the front hall; an exciting accomplishment! In spite of the loud sounds, Vic was actually able to nap and had to be woken up! This past Labor Day weekend turned out quite nice, despite not having made any plans. It was basically a weekend at the park(s. Gary toiled again in the basement while Vic and I spent the day at Myrtle Edwards Park. Sunday, the family headed to Greenlake, where I finally had a chance to rollerblade and Gary walked Vic in our new $10 bargain jogger. We later walked around searching for blackberries when I realized, that’s exactly how we’d spend our Labor Day. Today, we headed to Seward Park where our mission was to fill our bucket with blackberries and we came pretty close. For dinner, we ate at Uwajimaya and I slurped down a bubble tea for dessert (ahh). Not a bad weekend to begin our September, considering all that we’ve gone through with regards to Vic.

Sometime in mid-July we got results from a food allergy test we did for Vic. The results are quite daunting, as just about 80% of his Keto Diet needs are dependent upon dairy and dairy is at the top of his reactive foods. Coming in at #1 is soy! In all, Vic has about 16 foods that negatively impact him in some way but of course, since he’s non-verbal we don’t know how those foods affect him. For one, we decided to cut out the dairy and within a week we noticed a big difference! Here’s where I get graphic…Vic finally has solid stools. Vic seems more comfortable and is certainly less gassy! However, it has not been easy adjusting his diet w/o the dairy, as we’ve had to replace ALL of the dairy (which is high in fat, fat is the crux of his Keto Diet) with oil. It has taken us about a month playing with various oils and he still had a difficult time digesting the ¾ cup of olive oil, he ingests per day. The amount of oil makes for a very urpy Victor and slows us down a lot, as we can’t simply jump in the car and go following any meal.

Aside from the diet, we discovered the importance of one of Vic’s meds (lamictal). One week ago Vic stopped taking Phenobarbital (yippee). From pulling the PB away, we also pulled back on the lamictal and noticed a horrible outcome from the slight wean. The good thing is that when we put him back up on the lamictal, his seizures weren’t as strong or as frequent. We’ve also recently altered the time of day we give his meds and today noticed him to have only 1 brief strong seizure and a few mild quick ones. We’re keeping our fingers and toes crossed!

Through all of this, Vic had a growth spurt and is about 34” long, 26.5#’s and is now working on the 2nd of his last 4 molars. This teething business is clearly impacting him and driving us nuts. We have felt each of those teeth come in! At this point, I need to call it a day!

Look for my next update, following the start of school and our trip to Reno/Tahoe to visit my family.

Next Update: sometime early October