I have been cooking all day. My family always schedules our "Christmas" on a day when everyone can be there, which means nowhere near the actual holiday. Actually, it makes it more special since we have more time to prepare and more energy. But the big day is tomorrow. This means I had to come up with special foods for Nate so he won't feel left out of all the goodies on the table. So I make "maxson" sized portions of GF/CF snacks.(maxson sized means serves 30-there are a lot of us) Usually I only tell my nephew who is also allergic to milk which ones are allergen free...but I guess my whole family will know now.  I also have to create enticing foods for Ben. He does not yet feel left out if he can't eat what we are eating, and I try to make his snacks look like whatever I am bringing. If I am feeling particularly creative, I make what I call "recipes from my old life". These consist of favorite recipes that I simply can't reproduce and miss desperately. I was, admittedly, a scratch-cooker before discovering all the boys' allergies. I made some amazing foods, and I miss them. To tell the whole truth, I have been cooking since Wenesday because I knew the things I wanted to bring were going to take some time. Here's my list-Cherry Praline Cake, Fudge Brownies, Pigs in a Blanket, Peanut Butter Fudge and Penuch. i alos had to create a couple of goodies for the gift exchange, and my sisters' birthday.My sis does not usually read the blog ( I know-boo, hiss!) so I'm not giving anything away. Penuche is her favorite-Brown sugar fudge. If you have never had it, you are seriously missing out!

Just to keep things interesting, we traded kids with my oldest brother, so they have Nate tonight, and we have my niece Grace.   I completely forgot to send food with Nate, since all I did today was think about food. Luckily, on my way to drop Nate off, I stopped a Trader Joes and bought his cereal. I didn't mean it go go wth him, but in a pinch it will do. My sister in law is great. She usually tries to plan meals around Nate so I don't have quite so much to do. Breakfast is still the hardest one-Nate's loves his carbs in the AM.  Anyway, we got it sorted out.

Sunday we are attending a Super Bowl Party. Surprised? No. I plan to go with Ben for a short period of time, then come home. Nate and Megan will hang in with their dad until the bitter end. I'm a little concerned about over doing it with Ben with two events that are so social, but if it gets bad we'll just come home. I am hoping he will last three hours at my family thing, 2 1/2 is his record.

Ben had two seizures again this morning, but they were less severe than yesterday. I'm hoping this is a good sign.  According to people who have had success with the diet, the seizures become less and less frequent until they jsut fade away. So there is a process to go through, we just have to be patient. Frnakly, two seizures a day is such an improvement, I can't be anything but thankful.

He started tugging his ears again and crying today. I suppose this cold is making them worse. I plan to contact Dr. Mark again if he is not better.

Please remember our friends, Patti, Karl and Katera in your prayers. Katera had a status seizure yesterday after several years of (mostly) successful seizure control. She has to start Trileptal tonight, and Patti(my nutritionist friend) is feeling pretty discouraged, especially after Ben responded so badly to it.

As always, Thank you for your faithful prayers and support. We couldn't do it without you!

Teena

sadly Ben had two seizures this morning, so we are starting the clock over. Amazingly, he stopped having seizures and there were no more. Ben has stopped pulling his ears, so we're hopeful that that is over at last. He and I both have come down with a new cold, so we will keep treating the ears to keep new infections from starting.  Even the meds are a little better today-someone has been praying. We managed to get full doses of both meds in him today with a great deal less fussing than usual. Ben was thrilled when we all clapped and cheered when he swallowed quickly.

We did get approved on our applications for financial services at Children's, so any services we get there will be paid for. PHEW! That is a huge relief, particularly with Dave working so little. We are still waiting to see if Ben will get disability insurance. We are going to need a lot more therapy this year, and the out of pocket expense is unbelievable.

I was talking with my friend Erica(the one with the little girl with kidney problems) the other day, and some of the things she said got me thinking. You know the part in Shrek where Donkey  and Shrek are talking about how Ogres are like onions?  It has layers. Every time I think I have come to a new place of peace in what is going on with Ben, I realize I've simply peeled off another layer. In talking with Erica, she mentioned praying over an upcoming appointment. I wondered to myself -when was the last time I prayed over an appointment? It's been a long, long time. We have felt so very much discouragement and disappointment-both in doctors, and to tell the truth, in God(being honest here). My faith couldn't take any more hits of asking God for answers, and hearing only silence. This whole idea came as rather a shock to me-I have been protecting myself without even knowing it. There went another layer.  What it really tells me, is that though I am now coping better, I am not really ok with my pain and discouragement, or I wouldn't be so afraid to pray. It's funny, I pray all the time. All day long. I pray for David and I to be good parents, to be strong for the kids. I pray for all the kids to grow in the Lord and not be afraid. I pray for everybody else. But I no longer pray for the doctors to see at last what is going on with Ben because my heart can't take the disappointment when they tell me one more time-"he presents in an unusual way" Which we now know means "We have no idea-good luck and don't let the door hit you on the way out"  In case you were wondering, it hurts the onion a great deal when you pull off each layer. Perhaps that is why we tear up; the pain of the onion is released.  What I do notice, is that peace, unlike the onion, gets bigger as you pull off the layers. I'm not sure how that works, but I can feel it happening. Perhaps, someday, I will discover that instead of an onion, I am holding a nice parfait

Teena

We're not really positve Ben is not having brief silent seizures at night, but either way this is a big improvement.  We are still having medication troubles, and tummy troubles, but his ears seem to be bothering him less today. We purchased some Miracle Noodles which have no carbs. I tried them out on Ben today. So far he's not having any, but I will keep trying.  Sometimes it takes finding the right moment to try it.

When I stopped by Dr. Marks office on Monday to get the garlic oil, Dr. Mark himself was a the front desk. He gave me a hard copy of Ben's test results and some notes he had written of his research so far. I still haven't had a chance to look them all up, but the bottom line is this-Dr. Mark is thinking Ben has an Inborn Error of Metabolism(IEM). This occurs in approximately 1% of the population and is genetic in origin. I find it hard to breathe when I read these words-I'm not so sure anymore that I want to know, now that it looks like we are getting close. Gene testing was recommended by the testing facility, so I'm pretty sure that's on the horizon. Dr. Mark is cracking me up-he's so excited to finally be on to something. We have run countless tests through Dr.Mark in the three years we have been working with him, and though Ben's test results were always left of center, aside from allergy testing nothing has ever been this definitive. I sooo have to focus on other things, the feeling of almost knowing is overwhelming, but it's time to hurry up and wait.

In the meantime, God has provided us with some crazy busyness so I can't obssess (it's my super-power). Yesterday the kids had a marvelous time with the Doles at the arisoft birthday party. David and I had a peaceful evening once we got through the med ritual(Ben was asleep by 7:30-I love Melatonin!)This morning Mr. Doles brought the kids home on his way to work. How kind! Thank you, Perry!(Quick story-Ben calls Michele "Doles" because we always refer to the whole family as one unit "the Doles". Though Ben has only seen Mr. Doles a handful of times, he ran right up to him and said "HI Doles!"He's making connections) The kids did most of their schoolwork today, but Nate is pretty distractable since it's FINALLY his birthday. We are all going to be glad when it's over! Tonight Dave is coming home early so we can have a family dinner and Nate can unwrap his presents. Then the kids are off to AWANAs. The day was made a little more bearable since a present came from Pete and Marie(Dave's brother) and a card from Granny and Grandpa(Daves' parents). It's sort of been a birthday week since my parents brought his present on friday, he had friends over on Satruday, and opened Megan's present then. Good times, good times, and more to come!

Happy 12th Birthday Nate!

Teena

Quick note-one of Nate's birthday highlights was having the AWANA group sing happy birthday to him-accompanied by electric guitar. gotta love it!

Megan took third place in the crazy hat competition, so it was a good night for all. I have to wonder-If I never win anything, and Dave never wins anything, where did our children get this winning gene? Can't say I'm complaining, though

we got this oil called MCT oil, it's made from coconuts and pretty well guaranteed to raise Ketones. Ben's immediately shot up to 160 and have stayed there the last two days. We also started putting garlic oil in his ears as dr. Mark thought this was a better idea than a different antibiotic. Last but not least-the Melatonin has come at last, and Ben has been asleep before 8 the last two nights. I readily confess, this makes the evening much less stressful on David and I.

my Dad, who shall be referred to as Mr. Wonderful from here on out, came over this morning with the last of the parts for the water heater, and I had hot water by noon. thank you, thank you, thank, you Mr. Wonderful!!!!!! Ok, actually, I think I will go back to calling you Pappy, but what I mean when I say that is "Mr. Wonderful!"

Nate and Megan were invited to an air soft war/five year old birthday party. Hmm, that sounds funny. OK, the big kids are having an air soft gun war outside, and the littler kids and most of the girls are having a five year old princess party inside. Nate asked Megan to be outside at least part of the time, he was really hassling her about it. I finally intervened and asked him why he cared so much-she didn't have to be in the war. His reason? "I like Megan, and I want her to be out there with me" Some moments just take your breath away with joy, don't they?  Anyway, the kids are staying the night at my friend Michele's house in North Bend, and her husband is driving them home to us on his way to work in the morning. When Nate will be 12....Wow!

Teena

UGH! so I have things to tell, but our hot water heater died a very violent death all over the garage. I will be mopping and my Dad and Dave will be trying to unhook it and find a new one. Praise God for dad's who are willing to bail you out over, and over, and over, and over and over, and over...how many appliances do we have left to replace? (hey, we handled the espresso machine on our own)

Teena

Ben had a very rough early morning, and some of the day was also very difficult. He is refusing to eat, and refusing to swallow meds. We suspect he is spitting out some of his Keppra, and the seizures today were a result of withdrawl.  We also think he is too far into Ketosis as he took a three hour nap this afternoon and was hard to rouse. We gave him some juice and he perked u a little-we'll see how his ketones are in the morning.

Today a little spark of hope was fanned into flame-Dave and I are both trying to dampen our excitement, but we got a very excited email from Dr. Mark this morning at 12:47.(we love this guy!) I will copy it here, but basically we have found something that may be the key to either understanding Ben, or helping him. This is the result of my researching , sending it to Mark, and him looking for related tests.Further testing is due, but this is a seriously animated email from Mark, which indicates he thinks we are on the trail at last. I made myself wait until tomorrow to begin researching, both because this Sunday, and also because I am trying not to get too excited.  Dr. Mark knows I am what they call at Seattle Children's an "internet mom" though from Children's it is more of an epithet than a compliment. I love Marks last line here-how validating!

t

The header here was _We've got something!

Hi Teena,

Attached are Ben’s lab results.  I’m still researching everything, but his most recent urine test showed elevated:

1.        Hydroxyproline

2.       Serine

3.       Alpha amino adipic acid

4.       Glycine (goes along with hydroxyproline)

5.       Sacrosine

6.       Beta alanine

7.       Alpha amino butyric acid

8.       Hydroxlysine

Several of these amino acid deficiencies/excess can have symptoms of seizures, mental development, heart arrhythmias, growth and development abnormalities, digestive problems.   There may be some genetic links to all of this and there (of course) some tests that will be done.  

I just got these tonight, so I thought I would forward them on to you so that you can do some research as well.  After I have a chance to research everything I’ll have someone call you to arrange a phone consultation so that I can share some of my findings with you. 

Always, always TRUST your motherly intuition!

Dr. Mark Monwai

We kept the plans for Nate's birthday party down to a minimum this year. Actually, he told me a couple of weeks ago that he was a little too old for a theme birthday, could he do something else.I got over it and he invited two friends to come over and go out to lunch at Red Robin. After much family drama I will tell about later, the friends arrived and away they went. Megan, Ben and I picked up McDonalds(yeah, I was slumming) and had an almost quiet afternoon. When the boys got back they played DS for a very long time. We had gluten free casein free (GF/CF) frosted peppermint brownies. so, so good.  All in all, I think it was a very good day. Nate seems happy. I wonder if he will stop being so excited? His actual birthday is Wednesday, and he wants to have his special dinner then, and open family presents. Oh, he's 12 BTW, and for all the cousins who are wondering, he got his bank last night and went and bought a brand new DS Lite. I'm sure you will all see it Saturday.

So, the morning. Well, first, last night Ben would not eat. He also had his "insomnia night" (my parents expereinced part of this, God bless them, and were properly horrified at the reality of how busy he is.) last night and was up until 12:30. The net result was several TC seizures early this morning. He had one more after waking and promptly went back to sleep for an hour. We hadn't had a chance to get meds or breakfast in him, but you can't feed somebody in a post-ictal state. He woke up, and in my stupidity, I assumed that was it for the day. I got his breakfast and arm wrestled his pills into his mouth which he would not swallow...and then he had another TC and spit out all his meds which were now liquid. Then he dozed off again. Still without meds or eating. By this time it was after 11, and Nate's guests were arriving in an hour. Dave had taken Nate out to go get his DS, and Megan was my only help. I finally woke Ben, changed all of his clothes(covered in Keppra and the antibiotic) and measured out new meds. All this time I am also trying to frost Nate's cake and make myself presentable for company.  I managed to pull it all together about 11:50. Most of that hour Megan was running around collecting clothes, towels, diapers, wipes, and just holding Ben so I could get everything else done. The whole time, all I could think was "I am so grateful Nate is only having two kids!" They were both boys who have spent a lot of time at our house, and with Ben (Grant and Sam). So no matter what state they found us in, it would be ok. Ben perked up as soon as his cousin Sam arrived, and all was relatively smooth after that. Ben had two more seizures, but both were brief and only partial-complex.

I got an email from Dr. Mark last night regarding Ben's ears.  He doesn't want to mess with Ben's meds yet, so we are going to try the colloidal silver in the ears a couple more days in the hopes that things will finally clear up. I have my doubts...

Last night we went to the auction for Annie Sullivan.  It was wonderful to go be a part of something for someone else. We love spending time with Jim and Heather(it was so fun)and realized this was the first time we had been out without kids together-ever!  The best part for me was seeing Jean, Annie's mom. We sat and talked and used word like Keto, AED, Head drops, VNS, Monitors, Status, Ketones, Induction. It was great to be with someone on a similar journey, to know their pain and joy without words. Actually, the best part was learning that over $10,000  had been raised to pay for Annie's Therapy. At $140.00 per session, and I think Annie is in 5 kinds of Therapy, this money is going to go a long way. Did I mention there are 7 kids in this family, and I think four of them are in college?  Anyway, I am so glad we were able to be a part of this. Thank you again for inviting us, Jim and Heather! OH, and Mom and Dad-you're the Best! Thank you, Thank you for babysitting again, and on such a night as Ben had!

Today Ben is busy either mauling his cousin Sam, or sitting and reading books. It's actually been a peaceful afternoon.  We are all enjoying hearing Ben sing happy birthday to Nate, too. We waited so long to hear that little voice, it is truly music to the ears, even without any consonants.

Teena

As I finished writing this, Ben came running up to me and said "I gonna get you!"  sounds like "i onna etchoo" and means "get me, get me!' then he squealed and ran away. I obliged in getting him over and over, and David reminded me that this was both Nate and Megan's favorite game at this age. They had many variations, but the game was the same. We love to find ways that Ben is developmentally appropriate.