Victor: Now, ONE!

First Birthday!!
Victor turned one on Thursday, June 1st. It was a particularly rainy day so we waited all day for the clouds to clear so we could fly Victor's special kite. With friends, Eric and Vivian, we were able to let his kite take a short flight. On Saturday, June 3rd, we celebrated Vic’s birthday by taking him to Golden Gardens Park and invited anyone who wished to join. It was planned as a kite flying party, the weather turned out to be very warm and sunny with no wind. Regardless, it was great fun seeing friends we hadn’t seen for a very long time. There were lots of kids, bocce ball, some silly balloon thing that the kids loved (Thanks, Scott) and chocolate cake! Since it was Vic’s 1st birthday, we celebrated through the weekend by opening his wonderful gifts on Sunday night and having yet another cake (wheat-free for Dad).
By the way, Victor’s hair has a definite reddish tint to it! We are both pretty shocked as we surely thought he’d have dark hair. Suppose, time will tell. Also, he just cut his 7th tooth.

Motor Abilities: Victor is showing very slight improvements. While on his belly (mainly while placed on the therapy ball), Victor is starting to push himself up. He used to slightly pull his head up, but now he has moments of lifting his entire chest off of the surface. He is also showing better head control. He is moving his head from side to side more easily, as he plays and laughs in his Little Room. His hands are still fisted but he will open them more often than before and is starting to clearly bat at toys. He’s been scooching a lot while on his back and shows some signs of wanting to roll over. He’s still got a long way to go in all areas, but he’s getting there!

Therapy Update: Victor started Speech Therapy to help with oral motor control. As he is still tube fed, he thankfully has the desire to chew and tolerates objects in his mouth quite well. We will soon allow him to taste certain foods and he’ll start taking very small amounts of pureed foods too. I started allowing him to gnaw on a small carrot and he seems to enjoy it.

Upcoming Tests: Sometime in July, we plan to get results from the muscle biopsy that was taken in April. He will be scheduled for yet another MRI and will finally have his G-tube placed, sometime within the month.

Medical & Drug Info: Victor is completely off of the Vigabitrin, as of June 4th. There is a definite change in him: both good and not so good. Victor is becoming increasingly more alert and staying awake for much longer periods while slowly moving into a better sleep pattern (thanks to the nighttime melatonin). Victor’s seizures, however, are all over the place. For the past few months, his seizures were more predictable. He used to be awake and asleep every two hours through the day, and would seize pretty much just prior to falling asleep. Now, while he’s awake for longer periods his seizures have increased in number, intensity and are less predictable.

At our last clinic appointment (two weeks ago), we learned that Victor’s blood sugar level was quite low. We had to adjust his formula again by decreasing his ratio (currently at 3.25:1). In one day, we noticed a difference in his attitude. He has been so much happier and giggles more often than he had before. However, his seizures are more frequent and some are just more difficult to witness. He’s showing more classic jerking than he ever had and sometimes cries during and after them. His awareness of them makes dealing with all of this even more heart wrenching. We are still waiting to hear from the doctors with regards to his increased seizure activity.

In the meantime, we have started Victor on a vitamin regime which has proven to help with some seizure control (gee…it would have been nice to know this months ago!). Along with the various vitamins (B2, CoQ10, Acidophilus, Vitamin C & E) we are tabling the start of weaning his Phenobarbital. We don’t plan to start weaning for awhile until we see a positive change in his current seizure activity. It is certainly our hope to get him off of this med as we strongly feel that his motor abilities will improve once off of it but yet again, taking him off of anything brings risk.

Next Update: July 1st

May 23 update

Whoops, looks like I’m a bit late in my update. We’ve seen some changes in Victor that make us both pleased and quite concerned. As we’re continuing his drug wean he’s had the return of some of his longer seizures (Complex Partials). In fact, over Mom’s Day he had 4 of them in one day, lasting shy of 3 minutes/each. This has certainly worried us but the doctors feel it is not related to the Vigabitrin wean.

As a drug is weaned, it is not uncommon for some breakthrough seizures to occur. Typically a few may happen and then level off and (hopefully) stop altogether. It is our hope that the increase of seizures we’ve seen is due to this and they WILL eventually decrease. As of today, Victor’s averaging about 20+/day. Some are very quick and look similar to the Spasms he once had, so we are doubly worried: while it is the Vigabitrin that helped to stop the Spasms in the first place. As you can see, we are in a constant Catch 22 with many of the methods we try to help Victor. Undoubtedly, this makes it hard for us to focus on the positive.

However, as he comes off of the Vigab, he's been more alert and staying awake in longer intervals. This has helped his sleep habits, which are far from ideal as he continues to wake up in the middle of the night (1-2 hours at a time) on most nights. However, he has had some evenings where he’s slept 7-10 hours but those nights are rare and show no sign of rhyme or reason. We’ve tried and are trying everything to get him to sleep completely through the night but this kid sure has a mind of his own (hmmm, wonder where that come from?).

In the physical department, he’s showing more strength. In the mornings, we've found him scooched diagonal in his crib--this is encouraging for us as it shows us that he's gaining the ability to move. He’s also been pushing with his back and moving his legs independently. While on his belly, I’ve seen him push up slightly a few times and lift his head for very brief moments. In his Little Room, he’s been going to town! With a mirror in place, some chimes and a very bright ball and slinky he’s got lots to explore with and often moves his head in either direction, all the while making lots of happy sounds.

We continue to take him to Swim class twice/week and will for the next 2 years, until it’s time to lottery again into the next class. Being in the water has been very good for him, both socially and feeling his body move in various ways. Next week, we’ll start him on Speech therapy to help with improve his oral motor skills. Victor’s swallow is definitely obvious now, as you can hear it and he clears his throat very well. It is my belief that he will be able to taste foods (yet bland) very soon.

At current, Victor is weighing in at shy of 22 pounds and is still 31 inches long. He’s still got 6 teeth (which are big) and those feet are getting bigger too, as he’s jumped to the 12-18mos size. Victor turns one on June 1^st. It is hard to believe that a year has already passed! He’s a strong and stubborn little guy—which we’re happy about, as I think that’s what’s making him survive all of this crap!

Thanks again for your thoughtful prayers and support, it does help!

Happy Memorial Day weekend!

Next Update: June 11^th

April 30th Update

Since Victor’s test results, we’ve continued to wean him from the Vigabitrin. Although, it’s too early to really tell, it does seem as if Victor is more alert. It’s our guess that the interaction of this med along with the others could perhaps attribute to that, but as usual it’s only our guess. We finally saw Victor’s actual neurologist this past week. He’s on board with us to wean Victor from his many meds, however, this will be a very slow process (per usual). It is our hope to rid Victor of (at least) the Phenobarbital and find a different med that is much less sedating. We believe there is a definite correlation with the amount of meds Victor is on and his lack of development.

While Victor still struggles with holding his head nor can he sit alone he does show tiny signs of improvement after he’s had physical therapy. In fact, just within the past week, Victor held his head for 30 seconds (his record) and I caught it on video. It was so exciting!

Another way we hope to encourage Victor’s muscle tone and abilities is by attending a swim class twice/week at Children’s Hospital’s Therapy Pool. While, he’s the only kid of his kind in the class, the Director has offered me great advice on how I can implement some techniques that will encourage him to achieve balance

and movement. I follow techniques from the Halliwick Concept, which basically focuses on letting the child feel his body in the water and gain his own ability to adjust to the flow of the water by using his body’s strength. The Halliwick Concept has shown to aid in swimming and help with head balance, trunk stability and breath control. For example, I might have Victor floating away from me and I may only be supporting his shoulders. While his legs are extended outward, I might gently sway him from side to side. Anyway, we only just started taking him this past week and I believe it will help him get stronger both in and out of the water. Let’s hope it works!

(Easter with Laura's family)

Regarding the Diet, we are slowly upping his ratio. Unfortunately, Victor recently caught a cold so we haven’t wanted to push him to the full 3.25:1 ratio, just yet. Until he gets over this little bug, we’re just playing it cool. We hope he gets over this thing soon, as he’s hardly sleeping (neither are we) and is quite cranky. Victor’s Seizures are holding at a steady 17+/day. We think this is mainly due to his cold and the recent teething his had, plus the wean of the Vigabitrin. It is not uncommon to see breakthrough seizures when a med is being weaned. Apparently as the body kind of detoxifies itself, extra seizures may occur, level off and then decrease. So, we’re basically walking a very thin line, as we wean anything---keeping our fingers crossed constantly.

Next Update: May 14th

TEST RESULTS

This past week was quite exhausting! We spent both Monday and Tuesday nights in the hospital ( 48-hr EEG) and spent pretty much all of Wednesday (we got home at 10pm) waiting for Victor to recover from his muscle biopsy and sedation from the MRI. We expected not to get results until our next appointment with Victor's neurologist, scheduled on April 26th. However, this morning we were called in to go over the results with a different neurologist.

Scared as I was, waiting for the hours to pass before we showed up for the appointment, the results are better than we had thought or would have hoped for:

EEG Results: Basically, most of Victor's seizures are myoclonic. Some activity that we had questioned was confirmed to be just odd eye rolling, not seizure. He also had one Clonic seizure type that seems to stem from too many myoclonics: these appear randomly not as often as the myoclonics.

MRI Results: After a lengthy intro explaining that some of the neurologists felt Victor has some odd devastating syndrome, the Doc we met with confirmed otherwise since he is a specialist in mitochandrial diseases. Showing no lactate peaks in all of Victor's MRI's, the doc saw only one other case similar to Victor's. Basically, Victor has been taking Vigabitrin (Sabril) since November. This med was great for stopping the Infantile Spasms. However, there was some controversy as to whether the increased dose in this med may have also increased his myoclonic seizure activity. The Vigabitrin combined with the effects of the Ketogenic Diet have changed a portion of Victor's cerebellum--effecting his increased eye rolling (which we thought to be seizure activity). The good news is that this is somewhat reversible. In the one other case this particular doc had and only one published case, when the Vigabitrin was decreased so too did the myoclonic seizures.

Therefore, we have started to wean Victor from this medication. We also spoke with the Doc about weaning the Phenobarbitol, as it has definitely slowed all of Victor's development. Having said this, it will be just before Victor's first birthday before he will be totally off of the Vigabitrin. We will have to play another waiting game to see if these myoclonic seizures will stop and lead toward stopping the other type of seizures that he's had. We also plan to increase the ratio of the Diet in a few weeks, hoping that the Diet will be the impetus for helping Victor overcome these obstacles.

It is our grande hope that with a whole lot of positive thinking and the weaning of his meds, that Victor will start to show improved vision & motor abilities. Also, I just enrolled him in a swim class at the hospital's therapy pool. Twice a week, on top of his 2x/week physical therapy, he'll use the buoyancy of the water to feel movement in the water and hopefully out of the water.

All of this is yet another milestone that we hope to successfully pass. We urge you to join us in visualizing Victor's rapid development and success!

THANK YOU!

April 3rd Update

I grabbed the camera and enjoyed Vic's little face, tube-free, when his tube popped out by mistake. This happened the very next day after my last update. I’m still not sure how it happened, as I was holding him at the time. My friend, Amanda, was visiting and while she and I were talking; there dangled his tube. I flew into a slight panic State, realizing that I’d have to take Vic to the ER because the tube was placed by X-ray back in January.

After discussion with Gary and our doc’s office, we agreed that I would take him to our pediatrician’s office and learn to place it myself! It wasn’t as bad as I thought it would be. Victor actually slept almost through the entire process. I’m so glad that he’s so even-keeled about things!

Other than the tube, not much has changed since the last update. Victor has been tolerating his current ratio but still has 20 or so seizures/day. On occasion he’s had fewer but not quite the number we’re aiming for (zero).

Victor is still teething and drooling everywhere. He’s just about to cut the top two on either side of his middle teeth. All this teething keeps him up at night and us too! Victor still wakes in the middle of the wee hours and stays awake for about 2 hours at a time. Yes, we’re pooped and working in shifts to remain somewhat sane.
(photo to right: Vic passed out and Sammy watching over him)

FUN THINGS: This past Sunday was Victor’s first time at the public pool. It was a bit overwhelming for both he and I (it’s weird seeing other people’s reactions to Victor). There were kids and families everywhere, splashing about, making it difficult for me to allow Victor a calm place to enjoy the water. We stayed in the water for only 20 minutes or so. He really liked it when I jumped up and down with him in my arms. This boy loves fast movements! The other thing we do with him that he really loves is swinging him around in a blanket. Gary and I take ends and toss him about…it’s so great to hear him giggle! Speaking of giggling, this past Saturday while sitting at the dinner table, out of nowhere, Victor gave us a toothy grin and giggled. It was very brief but very memorable!

Boy, I really miss hearing him giggling on his own! We’re still hoping the diet will allow us to wean him off some of these meds. They really suppress his true character, which makes it difficult to stay focused but we continue to try as we see him enjoy physical therapy and vocalizing in his Little Room. (photo to right: Sammy & Zebee curled up on Vic's baby bag)

UPCOMING TESTS: Next Monday & Tuesday, we will be at Children’s hospital for a 48-hour video EEG. We are not looking forward to it. Wednesday, we’ll also be at the hospital for Victor’s 3rd MRI and a muscle biopsy. These are tests to see if anything has changed and to determine if there is a focal point to his seizures. The biopsy is one last test to try and determine the root cause of his seizure disorder. It will be a long week!

The following week, Gary will be out of town for several days, which means that I’ll be holding fort alone. We thankfully have a night nurse scheduled during those nights but those days might be a little long.

A BIG THANKS to those who have prepared us meals and offered to help us in various ways. I can’t express enough how comforted we are by your actions!

Next Update: April 23rd

March 20 Update

The past two weeks have been somewhat mellow (thank goodness) and pretty much have been all about Victor’s TEETHING! Those darn two front teeth (and the two on either side) have caused all of us havoc; Victor’s sleep pattern has been somewhat erratic as we’re still having to get up for 2 hours in the middle of the night. In fact, the day his teeth finally erupted through his gums, he became slightly nauseous which led us to the decision to wait on increasing his diet ratio and give him ample time to feel better.

We will attempt bumping him up this week in a much smaller increment and now that his two teeth have surfaced, he’s been feeling much better. Victor’s seizure activity has slightly decreased. He now averages about 23 small myoclonic seizures/day and recovers from them quickly. Unfortunately, he also has a different seizure type, which we’re not clear as to what type they are. Possibly they are tonic-clonics, they average about 4/week, and last anywhere from 45 seconds up to 2 minutes each. Following this type, he gets a bit sleepy and may take a quick snooze to recover.
**For seizure type information click this link: http://nyneurosurgery.org/ep_types.htm.

All in all the past two weeks have allowed us to enjoy Victor more. We’ve felt more comfortable taking him out into the world again (these past few months of hibernation have made us stir crazy). I was able to bring Victor to a friend’s home for an afternoon visit and also met up with Cousin Michelle downtown at Westlake Center, for lunch. Both weekends we enjoyed the beautiful sunshine and landscape of Seattle: one weekend we took Victor to the beach near our home and met up with friends. Afterwards, we all hung out on our front porch, had lunch and enjoyed having company over again. This past weekend we took Victor to a local park and walked part of the Burke Gilman Trail. He really enjoyed being in the car, as he was very alert looking at everything and vocalized a lot! We were even able to finally bring Victor to a friend’s home for dinner. All of these small activities may not seem much to the average person, but they are HUGE milestones for Victor and us—it is so nice to feel somewhat normal again!

Victor is still doing well with his therapies. He’s gaining better head control and able to fixate on objects better. In the photo to the left is Victor checking out his toys in his “Little Room”. The Little Room is a therapy tool, which allows him to see objects close up. The chimes that he hits bounce off of the walls and he clearly makes reactions to them. He loves his Little Room and so do we…there’s no need for TV, we just watch Victor have fun! He’s still not grasping at objects, unless we place items in his hands nor is he yet sitting up alone. However, he continues to make small improvements by showing us how much more alert he is each day. We are so glad that spring is finally here and that we have more sunny days ahead to share with Victor as he continues to improve. Keep your fingers crossed that this next increase doesn’t make Victor sick and all things get better!

Next update: April 3rd

9 months: March

It’s been two weeks since I last wrote and we’ve certainly had some ups and downs. The week following my last update, Victor was stable on the 3:1 ratio. He was more alert, focusing on objects more than he had been and gaining better head control. We had two clinic appointments the week of Feb. 20th. Both our nurse practitioner and dietician were ready for us to increase Victor’s ratio, as he wasn’t showing the seizure control that we were all hoping for: he was still averaging 30-40 small seizures/day.

Into the weekend of Feb. 25th, Victor really started to show improvement. While he was still having a high number of seizures/day, he was lasting longer periods of time without having a seizure until he’d start to get sleepy. Apparently, as his brain shifts from one state to the next his little connectors aren’t as able to control this shift; hence seizure activity nearing sleep.

Monday, Feb. 27th, Victor (and I) had a wonderful day…probably the best in several months! His seizure activity really started to show a difference. He actually went close to 2 ½ hours without having a seizure and during his physical therapy session! It was the first time he had a therapy session with not a single seizure…he was willing to do just about anything and with a smile. The car ride home was also great…he made noises like any other kid and looked around in either direction, he really had a great time back there. I felt more encouraged and couldn’t wait to get home to tell Gary about his progress.

Seeing Victor doing so well, we decided it was time to bump him up a notch in his ratio. We went from 3:1 ratio to 3.25:1 (fats: carbohydrates), last Tuesday. Potentially, some kids can go as high as 4.5:1 to help gain seizure control. For Victor, this little bump proved to be more than he was ready for.

He quickly started to vomit. We spent all of Wednesday doing what we could to help him get over the nausea. We then took him back down to the 3:1 ratio but he was still having a hard time keeping things down. Thursday, we took him the ER as he was still a bit urpy and we thought his feeding tube had shifted. Several hours in the ER and a few x-rays later, determined that his tube was ok and he wasn’t showing urpiness. We were then discharged.

This last point may not seem like a big deal, however, for us…it was a huge accomplishment! We were not admitted for the first time ever of having to go to the ER. We, like any other family, were able to leave through the same doors that we had entered. We saw a doctor who’d treated Victor in the past as we were leaving and gladly updated him on Victor’s progress.

Sure enough, upon returning home he vomited a little more. The next day, Friday, he was still feeling miserable. We then added more water to his regular 3:1 ratio formula and continued this tactic over the weekend (same weekend as Aunt Noellyn's visit). As of today, Monday, March 06, 2006, Victor is improving but not at his best. He’s not vomited in a few days. Did I mention he is teething? Looks like his 4 uppers want to come in—YIKES!

Interestingly, during the time he was too ketotic and vomiting, his seizures really decreased in number. He even had a day of only 12! We are very encouraged by this and feel that one day, as his body will tolerate the increased ratios that he WILL gain better control.

Sorry for this long update but thanks for reading and keeping Victor in your thoughts!

Victor is weighing in at 19.8 oz. He’s now shy of 30 inches.
Next update: March 19th

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

5 months: November 2005

At the start of November, Victor's treatment for the infantile spasms began. The treatment; ACTH, involved daily injections in his thighs. Some side effects of the treatment were crankiness and insomnia..lboth came into full force quite quickly but lasted for about a few weeks. A few weeks into the treatment, while finding no relief from the spasms Gary drove up to Cananda and got Vigabitrin. The vigabitrin showed instant positive effects. Victor was seizure-free, but that only lasted for about 16 days.

We are grateful to have Miss Lynn in our lives. She watches Victor while both Mommy & Daddy try to get some work done. Miss Lynn found just the right positions that would calm Victor during his cranky phase.

While the month of November was difficult, at times, we were able to have some very nice moments. Thanksgiving brought Gary's New Jersey friends into town and we all had some really nice visits at the park & for brunch . Laura's relatives brought all the fixin's for a turkey dinner and that same day Victor smiled for the first time in a couple of weeks. Also, we discovered that Victor started teething...little nubs were just about breaking through! He's now got two bottom lower front teeth.

At the end of the month, while Mommy & Daddy celebrated their anniversary, the family drove down to Portland. Unfortunately, the visit was not for pleasure as Victor underwent both a high powered MRI and PETscan. These tests were to help try and determine the root cause of his seizures.

At the end of Victor's 5th month his weight was 14 pounds 7 ounces.