Nate and Megan both had overnight’s last night.  Today Dave took Nate and his cousin Sam on a bike ride.  I went to the women’s group at church, then came home and did some supply replenishing cooking which took me all day..but Ben now has food to eat. Dave turned around and went to help our friends Jim and Heather get ready for a remodel.  I picked Megan up and dropped Sam off, and Dave just got home a little after eight. Tomorrow we plan to replenish….after we do the church shuffle. ;)

Ben had a tiny bit of eye blinking last night, and some movements that *could* have been seizures, but I’m just not sure. Dave and I are choosing to see this as progress-seizures so mild we are not sure they are seizures.  Things are good!

Ben finally fell asleep on my nephew Sam, one of his favorite people in the whole world.

Tonight I went in to tell Ben goodnight and give him a kiss, and he said “See you tomorrow!”  Too sweet-and he knows the appropriate time to say it!

Teena

Ben had a much better night again last night. We are so very grateful for this more peaceful time for Ben. God is good!

We had a crazy morning. Dave had to get out early for some meetings, and the older kids had their annual assessments in Edmonds. The assessments went well, only one surprise area that needs work. Overall I am pretty pleased with where they are. The assessor was impressed with the amount of progress Ben has made in 7 months, and encouraged me to keep homeschooling, it's what he needs. Always good to hear! She was also able to offer me some good tips on how to manage the areas that need work, and some ideas on how to work the system so I can get some schooling help with Ben. Ahh, I like to work the system!

My mom had come over to keep an eye on Bne here at home while I took the other two.  This was a blessing-it would have been a nightmare to do the assessments with Ben there.  thanks mom! oh, and thanks for doing my broiling pan AGAIN! It's like I plan it, isn't it? <grin>

My sister in law and I headed a panning for gold experiment with the six kids.  They all had a good time, we drank some coffee, and then we traded some kids for an overnight.  Megan was sad to leave her new mouse, but not too sad.

Dave and I are so exahusted we can barely move. This week has felt like a marathon. But we are so very happy that it is now the WEEKEND!

Teena

Ben, of course, had a bad night last night because we had told the doc how well he was doing. We ended up giving him Diazepam in the hopes that we could forestall any bad cycle getting started.  The rest of his night was restful.  I slept, too. I have been running on pure adrenaline since his last visit to the doc, and was finally able to rest.

Today we welcomed a new family member-a mouse named Rosemary. This was a compromise with Megan who wanted a new dog, Athena having two paws in the grave and all. We finally decided on something furry that I don’t have to train, pay for shots for, or clean up after.  Megan is very, very happy.  Rose is kind of cute…

Tomorrow all three kids have assessments for homeschooling. Because Ben has special needs, I do most of the work, gathering materials and telling the assessors what kind of progress he has made this year.  They will write a report based on what I tell them and show them.  So my mom is coming to keep an eye on Ben, and the other two and I are headed to Edmonds at the crack of dark. Oh, happy day!

Today I present you with Ben’s current favorite Keto meal, the recipe for which I have written three times in the past week, and I am now slightly cross-eyed. Never the less,  it remains a favorite meal. On the left is mashed turnips with goat butter, goat cheese, oil, and mayonnaise. On the right is nitrate free bacon and roasted, slivered almonds. Don’t knock it til you try it!

Teena

Lately we have had emergency labs, extra tests, phone call after phone call from both Children’s and Dr. Marks, tons of faxing and paperwork going from place to place, and to top it off, extremely spotty internet coverage.  It has been a stressful and difficult time, and it’s not over yet. All of that to say, I simply have not had the time, energy, or access to blog. Even now I am thinking to keep this short so I can get it posted before we lose connection again.

We spent this morning at Children’s. Dave went with me after I whined a begged.  Several things happened-the dietitian and the neuro were both pleased with Ben’s progress as far as seizures go…they have significantly reduced as far as the eye blinking ones go. He also gained weight since his last appointment.  He’s hungry all the time, so we are raising his calories an entire 30 calories per day.  Gee, that much, huh?  This will cause his ketones to go down, but probably that is a good thing in Ben’s unique case.  Since we are making that change, we will not….lower meds.  Very irritating, but Dave and I figured that if Dr. Simon is happy right now, and willing to keep Ben on the diet, then we’re not going to rock the boat….yet. Dr. Simon knows we are anxious, she just thinks one change at a time is enough for Ben.  She’s right.

There was a big “AHA” moment today. (OK, honestly, this makes me want to tear my hair out because I have been over this and over this, but the docs only hear what they think applies to Ben’s situation, and not all the other stuff that has been going on ever since he was born.)  Dr. Simon called Ben in last Friday to check his low B6 and B2.  We are still waiting for our results, but we discussed her reasons in the meeting today.

soooo…There is a genetic defect where people don’t extract vit B from their food. Usually this is found in babies, but since Ben still has no diagnosis, and obviously has issues extracting from food, Dr. Simon is running the test. She mentioned malabsorption, and we discussed how ill Ben was before the Specific Carbohydrate Diet, and that I believe he did have malabsorption, but by the time we got to GI he had healed enough for it not to show up in the biopsy. It was, after all, 2 years later.  We also told Dr. Simon that Ben used to get B6 shots from Dr. Mark, but we stopped because this was around the same time the seizures made their presence known.   Dr. Simon jumped all over that, and guess what? I’m transferring records today, again, from Dr. Mark to Dr. Simon. Dr. Simon seemed to think we should have told her this before…which I’m pretty sure I had. But whatever-I’m sure she mentally ruled it out because this is a condition diagnosed in infants, most kids don’t make it this far without a diagnosis…but since it’s Ben and we really don’t know, and because we have done so much with Dr. Mark and supplementing, it is possible it’s slipped under the radar all this time.  Ben is now being tested.

Ben also has low iron, and we start new supplements for both iron and B6 this week.

I will talk to the dietitian in one week, and we will choose one further change to make to the diet to see if we can make it more successful for Ben.  Dr. Simon is not convinced, and still says “if he fails the diet…” but for now, since he is improving, she is willing to let him go on. Especially since he sees the geneticist next month.  She is confident Dr. Hahn will find something.

This was a much better meeting than the last one, I am greatly relieved.  Thank you for all of your prayers!

Teena

Ben had a good night last night, we are unaware of any eye blinking or seizures. He was terribly irritable today, we assume from this cold we all have. 

Megan had the AWANA Grand Prix today. She entered the same car she has entered in past years. This time she did well...and they discovered a problem with the track and decided to re-run the race. The second time she did not do as well and got booted out. She bore her disappointment well and enjoyed watching the rest of the races.  Nate had fun-he got to set up the cars and pull the switch to let them go. Ben had fun because he loves to watch cars go, in any form.

Dave got out on this glorious day for the first official bike ride of the year.  He really enjoyed himself and is looking forward to the biking season.

Ben was mellow when not irritable(OK, I confess, I got out some Bob the Builder movies) and I got to read a book this afternoon-very peaceful.  Dave and I spent part of our evening putting the house back together after the masterful cleaning it got from Dave's parents. Thanks again!

Julie's husband Ron is doing well, last I heard. There was a possibility, even, that he may have gone home tonight.  Thank you for praying-it was a critical situtation and very unexpected. 

Teena 

Ben had an ok night. We are seeing less of the eye blinking, and a more consistent 2-3 longer seizures. This is more like what we had at the beginning of the diet, and we are hoping the tide will turn a little bit here.  Must….wean…meds! I plan to press this issue during this weeks appointment.  I’m also hoping Dave will be able to go with to this one. Certainly, a little extra support will not go amiss.

Dave’s parents arrived bright and early this morning and ready to work.  They are helping us do those little chores around the house that we just never find time for. Our garage is now somewhat cleaned out, our carpets are freshly scrubbed(after this last stomach bug, this really, really, really needed to be done. Enough said), the gutter is repaired, and many little things are wiped off and tidied up.  Thank you, thank you, thank you, Rick and Terry!

Tomorrow we get to go see Megan compete in the AWANA Grand Prix. She will be using the same car she has competed with in past years, and she has mostly done well. This is always a fun event. This time Rick and Terry will be with us, as well.

Ben blood draw went fine today. They also drew the SCN1A which is the DNA test we have been waiting forever to get done.  In just three months they can tell us the test was normal!

Please lift my uncle Bob up in your prayers today. He has emphysema, and now pneumonia, and is not doing well.  My parents are planning to go an visit soon and hopefully get a chance to say the most important prayer of his life.

Also, please pray for our friend Ron. He is my friend Julies husband, and is in intensive care after Julie found him unconscious on the floor this afternoon.

Dave and I are noting that this seems to be a difficult time for many people we know. Thank you so much for constantly keeping us covered in prayer.  What would we do without you bringing us incessantly before the Lord?

Teena

Ben threw up in bed last night. This is not great news-I’m trying to impress his Keto team with how well he is doing, and he’s still throwing up. We really, really, really need him to gain weight before his next appointment on the 24th, so pray hard!  we didn’t see any eye blinking last night, but he did have three brief seizures.  His cold is much better today. Hopefully we will continue to see a seizure decrease as he gets well. With Ben there always has to be something clouding the issue-too many variables!

Through a series of misadventures we finally got our DSHS interview.  It looks like Ben will be approved, which will make getting disability benefits oh so much more likely.

I talked with the dietitian again today.  We are to go ahead and remove cream form Ben’s meals. Now I have a mad scramble to buy all the new supplies he will need to accommodate a new menu.  He’ll be cream free by tomorrow.  I’m pretty excited to try this new step. ( and to drink all of his leftover cream in my coffee. Anyone want to join me?)

Dave’s parents came into town for a visit. The kids and I just had time to finish school before they arrived. Shortly thereafter, the medical calls began…

The new geneticist called to schedule Ben for an appointment and to get permission to see all of Ben’s files of all the tests previously done. As of now, he does not think Ben requires any blood work, but may call with requests after he reviews Ben’s extensive files.  We will see him in March, specifically to discuss what other metabolic tests we can run on poor little Ben.

Dr. Simon’s nurse called to tell me Ben needs to come in for blood work tomorrow. OK, this is totally annoying, I had an whole day planned with Dave’s parents, but I have to say I love the idea that she is looking at Ben’s test results and thinking about him when he is not sitting right in front of her.  Anyway, he is super low on Vit B 6…again.  Being Vit B deficient can cause seizures. There are these pathways in the body that can block Vit B from traveling properly(this is my totally dumbed down explanation, as I understand it) and before she will add a B supplement, she wants to make sure his Vit B is not blocked. Apparently, that would be bad news.  Ben has been very low in Vit B before, and takes a daily supplement, so this is puzzling.  It’s that whole-not properly extracting nutrients from food piece of the puzzle. Teena