It is 9:00 am and we are in the final stages of packing up our hotel room. O tolerated the 100% ketocal PERFECTLY and is about to start his second day of the full strength formula. Dr. Olson, the NP and dietician were all so surprised yesterday morning to read the nurse's report from Tuesday indicating that Owen had no problems whatsoever with the 2/3 strength formula. As I've mentioned, this is very atypical for kids who have a history of severe GERD. And now he's passed the 100% test and we are free to leave for home.
Last night was so great. Owen had one period of about twenty minutes where he had probably 10 seizures, but on two other occasions, fell asleep with NO seizures. This has not happened since early May. We all got about seven hours of sleep. Remarkable.
I'm always so hesitant to feel such great joy and relief when things seem to work for Owen's epilespy but, you know, I have a really good feeling about this diet and believe that it will work.
And now our sights are set on Indianola...
With much love and appreciation for everyone's support,
S/K/O
Thursday, August 28, 2008
Tuesday, August 26, 2008
Our little peanut.
Owen's metabolic study yesterday morning revealed that he is running at 170% of what his age/weight calculations predicated - so almost double what would be typical for a kiddo his size and age. It was a perfect study - he was sleepy and laid under the ventilated hood, still the entire time while they took measurements of oxygen consumption and carbon dioxide production. The numbers are quite accurate and give us a really good idea what his RMR (resting metabolic rate) is. This number is important in the keotgenic diet since we want him to gain weight on the diet while also remaining in a state of ketosis. This number surprised even O's dietician and is obviously why we've not been able to get him to gain much weight the last three months with the formula and volumes we were using from our nutrition consults at Children's.
After a day of fasting and two days of well below normal caloric intake (as we titrate the ketocal up to the levels he needs) he is back down to fifteen pounds. I appreciated the fact that Lisa, his dietician, referred to him as a "little peanut." I like that. His genes, his high tone and propensity for movement play into this RMR number. Kelsey and I both have high metabolisms - Kelsey's is evidenced by his need for two breakfasts, a mid-morning snack, a big lunch and even bigger dinner and mine was confirmed during my pregnancy with Owen when I had to measure my glucose for two weeks. I burn through calories fast. We were happy to hear that Owen's movement - he is all of the time squirming around, waving his hands, moving his feet - is a good thing. It will help to keep his muscles strong, help his respiratory system and help overall to keep things moving through his system. We were told today that Owen is definitely not one of those children who "just lays there." That's our little guy!
We get to leave the hospital tomorrow. Ahhhhhhh. Owen is such a champ and is tolerating the new formula perfectly. Since the ketocal is so high in fat, oftentimes, especially with kids like Owen who had severe GERD (reflux) in the past, things move much more slowly through the body, are less able to be absorbed and end up "backing up." Imagine how you'd feel if you ate bacon, cheese, heavy whipping cream, eggs and butter for your meals each day. Truly, if Owen was not tube-fed, this would be our biggest challenge - getting him to eat the amounts of fats he needs to keep him in a state of ketosis. Lisa said that this is the primary reason why the diet fails in older kids - they just refuse to eat these foods in these quantities. We have heard repeatedly the last two days that, given his seizure activity, it is a blessing that Owen has the tube as it allows us to easily administer the ketocal - a perfect formulation to keep him in a state of ketosis while providing him with the nutrients and calories that he needs for continued health and growth. I never expected to hear the tube referenced in that way, but we'll run with it.
Dr. Olson has requested that, in exchange for him discharging Owen tomorrow morning, shortly after O starts the full strength ketocal, we stay in Palo Alto so that should he not tolerate this, we are close by. We happily agreed as overnights in the hospital are so rough. Nurses come in and out of the room regularly throughout the night, checking on their patients. Monitors go off. The air is recirculated and recirculated and recirculated. We will be staying at our hotel Wednesday night, perhaps celebrating with a dinner out in Palo Alto (so many great restaurants here!) and will leave for home early on Thursday morning, arriving in Indianola (oh, Indianola!) late on Friday.
O's seizures continue to decrease in frequency. I was just talking to his nurse, giving her an update on his last attempt to fall asleep for a nap. Typically it would have taken him 45 minutes to two hours to fall asleep and he would have had anywhere from 20-40 seizures. He just now fell asleep within 15 minutes and had three seizures. Cautious optimisim...
After a day of fasting and two days of well below normal caloric intake (as we titrate the ketocal up to the levels he needs) he is back down to fifteen pounds. I appreciated the fact that Lisa, his dietician, referred to him as a "little peanut." I like that. His genes, his high tone and propensity for movement play into this RMR number. Kelsey and I both have high metabolisms - Kelsey's is evidenced by his need for two breakfasts, a mid-morning snack, a big lunch and even bigger dinner and mine was confirmed during my pregnancy with Owen when I had to measure my glucose for two weeks. I burn through calories fast. We were happy to hear that Owen's movement - he is all of the time squirming around, waving his hands, moving his feet - is a good thing. It will help to keep his muscles strong, help his respiratory system and help overall to keep things moving through his system. We were told today that Owen is definitely not one of those children who "just lays there." That's our little guy!
We get to leave the hospital tomorrow. Ahhhhhhh. Owen is such a champ and is tolerating the new formula perfectly. Since the ketocal is so high in fat, oftentimes, especially with kids like Owen who had severe GERD (reflux) in the past, things move much more slowly through the body, are less able to be absorbed and end up "backing up." Imagine how you'd feel if you ate bacon, cheese, heavy whipping cream, eggs and butter for your meals each day. Truly, if Owen was not tube-fed, this would be our biggest challenge - getting him to eat the amounts of fats he needs to keep him in a state of ketosis. Lisa said that this is the primary reason why the diet fails in older kids - they just refuse to eat these foods in these quantities. We have heard repeatedly the last two days that, given his seizure activity, it is a blessing that Owen has the tube as it allows us to easily administer the ketocal - a perfect formulation to keep him in a state of ketosis while providing him with the nutrients and calories that he needs for continued health and growth. I never expected to hear the tube referenced in that way, but we'll run with it.
Dr. Olson has requested that, in exchange for him discharging Owen tomorrow morning, shortly after O starts the full strength ketocal, we stay in Palo Alto so that should he not tolerate this, we are close by. We happily agreed as overnights in the hospital are so rough. Nurses come in and out of the room regularly throughout the night, checking on their patients. Monitors go off. The air is recirculated and recirculated and recirculated. We will be staying at our hotel Wednesday night, perhaps celebrating with a dinner out in Palo Alto (so many great restaurants here!) and will leave for home early on Thursday morning, arriving in Indianola (oh, Indianola!) late on Friday.
O's seizures continue to decrease in frequency. I was just talking to his nurse, giving her an update on his last attempt to fall asleep for a nap. Typically it would have taken him 45 minutes to two hours to fall asleep and he would have had anywhere from 20-40 seizures. He just now fell asleep within 15 minutes and had three seizures. Cautious optimisim...
Sleepy head
It is 4:15 in the morning. I am laying on a plastic cot in Owen's hospital room which he shares with a 14 year old girl, Louiza, who just recently had a tracheotomy due to her increased inability to clear her upper respiratory pathways. Louiza also experienced a birth injury and has a wonderful, loving family, including a younger sister (by two years) who doted on her when she came to visit today. Louiza's mom, within an hour of us settling into the room, had reached out to us, told her story, written down the name of a close friend in L.A. who has a child who has successfully been treated with the ketogenic diet and offered any support she might be able to provide while we are here. This is how it is in this newest community that we belong to.
I am awake because Owen knows he is in the hospital. He has so far slept for two hours, in one hour increments. I have slept for perhaps a half an hour. This is on top of the three fairly sleepless nights we had at the outset of the trip due to Owen's newest set of teeth coming in. Kelsey is sleeping at the hotel room tonight - I get my night of luxurious, uninterrupted sleep tomorrow night. I think the last time I had more than four or five hours of sleep was before our trip to the Methow Valley in mid-May, before Owen's spasms returned.
Owen started the ketogenic diet this morning and so far, everything is going very well. His seizures are, in fact, down by about 50% as of this evening. We were very encouraged by our conversations with Dr. Olson, the nurse practitioner and dietician during our various consults with them today. There is such a good chance that this will work, either entirely eliminating O's seizures or reducing them significantly. Dr. Olson's goal is the same as ours and he sees it through with many patients - get the diet to work and then wean off the medications. We are being cautiously optimistic as there can be the "honeymoon" period even with the diet as the one that we saw with the Vigabatrin (which is the first thing Dr. Olson said we should wean off of should the diet work) where it works for a few days or a couple of weeks and then the spasms return to their previous levels. But the fact that we are seeing a response is good news indeed.
Many of you have asked about oral feeding or continued exploration of this while on the diet. The dietician raised her voice and said, "No, no, no," when we asked about this today. She reminded us that we had prioritized seizure control when we chose this diet and said that any little bit of food thrown into the mix could cause a spike in seizures (we had read this) and set Owen back. It is true - the seizures are our primary concern and are what is diminishing Owen's quality of life as well as ours. Getting him to take food orally is not a high priority and, as the dietician said, many parents struggle with this issue but are able to get their children to eat orally once they are off the diet, even after a couple of years. If we can get the seizures under control, I can live with that time frame and deal with this issue when the time comes. When you are the parent of a child like Owen, you realize... one thing at a time.
We had a wonderful visit with Mac and Margery (Grandpa Marshall and Nai Nai) and were sad to leave as we always feel so at home there. They sent us off with goodies from the Santa Rosa farmer's market which we had picked up the day before as well as plenty of other yums made with love. I don't have access to the camera right now, but will post some photos when we return home.
Our hope is that O continues to tolerate the diet and that we can begin our journey home on Wednesday afternoon. He started on 1/3 strength ketocal (formula for tube-fed keto kids) today, will go up to 2/3 strength tomorrow and full strength on Wednesday. If he does not tolerate the increased strength formula well, we may be here as late as Friday as we take the process slower. This would be such a bum deal since Laura gets into to Seattle on Friday (she planned her trip before we knew we would be having to make this trip during these dates). But we're hopeful that everything will work out fine...
Thank you for all of the emails and phone calls. And congratulations to Spencer and Elizabeth in Indianola who had a baby girl on Saturday night!! Big thanks to Kelly for calling and spreading the cheer way down here in Palo Alto. As I type this, I'm thinking of new Indianola babies, our garden, the beach and Dutch. It will be so nice to get back home.
I am awake because Owen knows he is in the hospital. He has so far slept for two hours, in one hour increments. I have slept for perhaps a half an hour. This is on top of the three fairly sleepless nights we had at the outset of the trip due to Owen's newest set of teeth coming in. Kelsey is sleeping at the hotel room tonight - I get my night of luxurious, uninterrupted sleep tomorrow night. I think the last time I had more than four or five hours of sleep was before our trip to the Methow Valley in mid-May, before Owen's spasms returned.
Owen started the ketogenic diet this morning and so far, everything is going very well. His seizures are, in fact, down by about 50% as of this evening. We were very encouraged by our conversations with Dr. Olson, the nurse practitioner and dietician during our various consults with them today. There is such a good chance that this will work, either entirely eliminating O's seizures or reducing them significantly. Dr. Olson's goal is the same as ours and he sees it through with many patients - get the diet to work and then wean off the medications. We are being cautiously optimistic as there can be the "honeymoon" period even with the diet as the one that we saw with the Vigabatrin (which is the first thing Dr. Olson said we should wean off of should the diet work) where it works for a few days or a couple of weeks and then the spasms return to their previous levels. But the fact that we are seeing a response is good news indeed.
Many of you have asked about oral feeding or continued exploration of this while on the diet. The dietician raised her voice and said, "No, no, no," when we asked about this today. She reminded us that we had prioritized seizure control when we chose this diet and said that any little bit of food thrown into the mix could cause a spike in seizures (we had read this) and set Owen back. It is true - the seizures are our primary concern and are what is diminishing Owen's quality of life as well as ours. Getting him to take food orally is not a high priority and, as the dietician said, many parents struggle with this issue but are able to get their children to eat orally once they are off the diet, even after a couple of years. If we can get the seizures under control, I can live with that time frame and deal with this issue when the time comes. When you are the parent of a child like Owen, you realize... one thing at a time.
We had a wonderful visit with Mac and Margery (Grandpa Marshall and Nai Nai) and were sad to leave as we always feel so at home there. They sent us off with goodies from the Santa Rosa farmer's market which we had picked up the day before as well as plenty of other yums made with love. I don't have access to the camera right now, but will post some photos when we return home.
Our hope is that O continues to tolerate the diet and that we can begin our journey home on Wednesday afternoon. He started on 1/3 strength ketocal (formula for tube-fed keto kids) today, will go up to 2/3 strength tomorrow and full strength on Wednesday. If he does not tolerate the increased strength formula well, we may be here as late as Friday as we take the process slower. This would be such a bum deal since Laura gets into to Seattle on Friday (she planned her trip before we knew we would be having to make this trip during these dates). But we're hopeful that everything will work out fine...
Thank you for all of the emails and phone calls. And congratulations to Spencer and Elizabeth in Indianola who had a baby girl on Saturday night!! Big thanks to Kelly for calling and spreading the cheer way down here in Palo Alto. As I type this, I'm thinking of new Indianola babies, our garden, the beach and Dutch. It will be so nice to get back home.
Monday, August 11, 2008
And we continue to grow all sorts of goodies.
Finally... our garden is doing great and is producing all sorts of yums and showy blooms. I found a wonderful variety of pickling cucumber from Territorial Seed that I planted this year. I really like the pickling varieties as they stay small and sweet. The figs are almost ripe and have already set the second round of fruit. We have not yet, within a season, been able to harvest this second crop as it always turns cold before they can ripen. Perhaps this year...
I am also growing an heirloom variety of sugar pumpkin that I am pretty excited about. They are on the smaller side and are lovely from the outside with deep grooves and an intense shade of orange, and are fleshy and sweet on the inside, perfect for pies and all sorts of goodies. I'm open to receiving all recipes that include fresh pumpkin - even after distributing some around Indianola, we're going to have quite a few to play around with. Pumpkins always make me think of my sister, Laura. I believe it was back around 1980 that my parents, on our several acres in rural Johnson County, Iowa, where we grew most everything we ate, grew an enormous pumpkin. They sent a photo into the Press-Citizen newspaper of my sister sitting on top of this orange mammoth. She would have only been three or four years old and I think this pumpkin weighed close to 80 pounds. She could have easily fit inside. I'm going to have to dig the photo up, scan it and post it sometime around Halloween...
Our two bulb beds have really been producing wonderful flowers this year - several varieties of dahlias, gladiolas, bells of Ireland, purple coneflower, some stunning tigridia and a number of other bird and bee friendly flowers. I was out in the garden the other day and watched two Rufus Hummingbirds fight over one echinacea flower. I had to laugh - there were probably a hundred other flowers for each of them to choose from.
BASIL! We have a serious bumper crop this year and I believe we'll have enough pesto to survive the long, wet, dark winter. There is truly nothing like pulling a jar out of the freezer in February, thawing it and coating a plate of pasta with the essence of summer. Kelsey does his "selective pruning" like a true basil master and I was surprised after he was done to look at both the bountiful harvest and the still full and thriving basil garden. It looks like we will get three very large harvests this year. The evidence of the first is in the photo with the red cooler - we spent three hours on Friday night, plucking leaves off of stems while watching the summer Olympics. Kelsey then made over twenty, eight ounce jars of pesto on Sunday.
So there are some people who like to cook and who can pull out a recipe book and recreate recipes that guests enjoy and want to know more about (this is me). There are then the people who want to learn more about the culinary arts and who enjoy cooking enough that they go into this as a profession to make a living. Then there are people who are true food artists, who LOVE food and who can't NOT cook - all of the time. The latter is our friend, Joe. Joe and Sara recently moved back to Seattle and came out for an overnight stay here in Indianola last week. They always bring so much great food with them, this time we said just bring yourselves... I did not go to the grocery store or plan anything special. From what we had laying around, including a few leftover items from the fridge, Joe cooked up an amazing meal. A fresh Asian veggie salad, spicy grilled salmon with basil/peanut sauce, and grilled spring onions and zucchini which we had over lovely, basmati rice infused with cardamom and other spices. And I thought he might be able to do something with the bread, cheese and tomatoes that I initially brought out...
I was surprised, given the years we've spent apart from them and given how our lives have changed, that we fell so easily back into our close friendship, talking and laughing in the garden and over dinner. It is good to have them back. And they loved Owen... and loved Owen... That always feels so good.
I wanted to make sure I mentioned another "growings-on." I am fourteen weeks pregnant - due on Valentine's Day. We are very excited for Owen to have a sibling and know that this will be good for him AND for us. We're doing most everything differently this time, including having our second at a hospital (Swedish) and finding out the sex of the baby the first week of September. These very much feel like the right decisions for us. While our current OB/GYN assures us that this is not a high risk pregnancy and that we should not at all expect any complications, what we've learned the last year is that Owen's injury most likely occurred during labor/delivery and we want to make sure that we have all of the available technology readily accessible during our next birth experience.
We leave next Thursday for Stanford and will spend a day and a half visiting with Mac and Margery (Grandpa Marshall and Nai Nai) before Owen is admitted to start the ketogenic diet on Monday the 25th. I know I've asked for this a lot this last year, but please send him your good thoughts. We really, really, really want this to work from him.
My next posting won't be until after Labor Day, after we return from Stanford, after Aunt Laura has come to visit (!!!) and after we've learned whether Owen will be having a brother or sister. I'm sure it will be a good, long posting.
Until then, enjoy the last rays of summer!
--
"A garden is evidence of faith. It links us with all the misty figures of the past who also planted and were nourished by the fruits of their planting." - Gladys Taber
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