8 months: February 2006

With Victor showing us that he was feeling better, it was finally time to start him on the Ketogenic Diet. We were admitted on Jan. 31st and returned home on Feb. 4th. He started the diet fairly well, but into his 3rd day, he showed that he needed more time to adjust to this huge change in his metabolism. We left the hospital with Victor in ketosis but not quiet on the strength that should help relieve him of his seizures. We were told that as he tolerates things, we can slowly increase his ratio of fats & carbs. The diet has so far, been quite simple for us. Not much for us to weigh and measure, as Victor takes a special formula (KetoCal) mixed with regular Similac Advance and his daily regimen of medications & vitamins.

It has only been 2 weeks since he started the diet. We have increased his ratio to the full strength only Thurs,Feb 16th. As of today, Victor is feeling the effects of his body changing...he is feeling urpy, as he's vomitted a little and sleeping a lot more. We expect this to get better, as he begins to tolerate the diet more. He still takes medications and will for some time, as we won't be able to decrease any meds until he's shown a significant decrease in seizures. Unfortunately, Victor's seizures are still present and have actually increased somewhat. He is averaging about 30-40 seizures/day...they are generally brief (5-15 seconds) and he recovers rather quickly. We are quite dissapointed, but keeping in mind that the diet will take some time to work through his body to his brain. For more info on the diet: http://www.our-kids.org/Archives/Ketogenic_diet_FAQ.html http://www.epilepsy.com/epilepsy/ketogenic_diet.html

Victor shows us that he is developing well in spite of everything. While he fights to hold his head up (all those hospital visits laying in bed didn't improve anything, physically), he is teething again! Yes, those two uppers are showing indents and certainly allowing Victor to react quite normally. He's crying, at times, and smiling at others. Good news: we learned that Victor's vision is better than we once thought. Although his acuity is at a 3 month-old level (his age at diagnosis), he has vision and the physical makeup of his eyes are on target with any other 8 month-old...he is tracking objects and imroving daily. We also recently learned that his lung capacity is normal. There was some concern while in the hospital in January, that perhaps his lungs weren't at the size that they needed to be to provide him enough oxygen...well our last clinic visit proved otherwise. He is breathing well, is spite of how his breathing sounds.

From some of the photos, you may have noticed a small yellow tube peering through Victor's nose. It is an ND-tube used to administer his meds and his KetoDiet because earlier swallow tests showed he was micro-aspirating. We believe his ability to swallow will get better in due time and he will gain strength to take foods orally, but to make sure he is safely taking his medication and not aspirating we needed to have the ND-tube placed (placed at the start of ACTH). Since medications will be a part of his daily regime for quite awhile, we've come to accept that we will need to place a G-tube in his belly. This may not happen for a couple months, however, and we do not expect him to require this tube for the rest of his life. For G-tube info:http://pediatric.um-surgery.org/new_070198/new/Library/gastrostomytubeplmt.htm

I realize that what I've shared in this latest update is quite difficult for many of you to read and truly appreciate. However, based on many of your questions regarding Victor's status, I thought it important to just lay it out there. Yes, Victor is delayed in several areas. He is not developing as a typical 8 mo-old....how could he (he's had hundreds of seizures)? Victor's level of ability is closer to a 2 1/2 or 3 month-old. But, he makes progress each day that he stays cold/flu free and continues with his therapies (physical therapy, occupational therapy, & cranial sachrial). In spite of Victor's shortcomings, he tolerates everything quite well. Victor continues to fight his battles and we are at his side each day along with many of you supporting us to root him on and see that he will overcome these obstacles.

7 months: New Year 2006

January proved to be the most difficult month we would have in dealing with Victor's seizures. We were so happy to be home after spending Christmas and several nights in the hospital. Yet, we continued to walk on eggshells. We celebrated New Year's with our good friends: Laurie, Eric and their daughter, Vivian, on our front porch. Despite the cold, we toasted to a better year ahead with champagne and some odd music.

Eight nights later we had the worst night of our lives! While changing Victor's diaper at 1am, Gary saw Vic have a seizure that ended up putting him into status (http://www.epilepsyfoundation.org/answerplace/Medical/seizures/types/statusEpilepticus/statusepilepticus.cfm). We called the on-call neurologist followed up with a call to 911. Victor & I were taken to the hospital by ambulance. His seizure lasted for 30 minutes! Eight hours later, by a chance look at his eyes, I saw that he was in status again...it lasted for 45 mintues. It was later determined that the cause of his status was due to aspiration pneumonia. We ended up staying in the hospital until Jan. 14th.

It was that hospital stay that we heard more from doctors about the Ketogenic Diet (http://www.neuro.jhmi.edu/Epilepsy/Peds/keto_diet.htm), but Victor was not in good enough health to start it at that point. Happy (again) to be returning home, those eggshells were still there. After a lot of home remedying to get Victor well, we took him to the ER on Jan. 19th to have his breathing checked. He was still rather gunky, clearning his throat better but still laboring hard to breath. We were admitted again. That stay lasted until Jan 24th. All we could think of was getting him well to start the Keto Diet. Finally, we got Victor over his immediate health concerns. He was breathing better, eating well and interacting more each day. On January 31st we were admitted to start him on the Ketogenic Diet.

By the end of this month Victor weighed 19 1/2 pounds!

6 months: December 2005

(look at Dad's cool train!)

Victor continued the ACTH treatment (http://www.epilepsy.com/articles/ar_1063753092.html) up until mid-December. As many of our local friends & family know, this was a time of near quarantine for us. Victor's immune system was highly suppressed while on the ACTH and we were informed that it would be at greater risk as we began to wean him from this treatment. This last point certainly rang true, as we stayed overnight on Christmas Eve and 5 days afterwards. Yet, however difficult December ended for us, we still managed to get in some smiles and even visits from both Gary's sisters who flew out to help us with the many things we deal with in the course of our day with Victor. (Nice hug Aunt Janine)
(Cozy time with mom. Check out the blanket that Mom's friend made for me. Thanks Miss Linda.)


(look at me! I'm hanging out with my
friend, Carolyn and bouncing on the ball!)




By the end of this month I weighed 17.5 pounds