Quick Update: The ratio change seems to be going ok. Gabriel has had not had any grand mal seizures in several days. He has had at least 1 head drop everyday since Friday. Today was both the best and the worst day we have had since the diet change on Friday.

Gabriel and I had so much fun this morning: playing in water outside, making glue/paint projects, swinging and playing Ipad. We’ve had the Ipad for several months but G has just developed a LOVE for it the last few days. I try very hard to limit his media in take but all bets are off right now….especially when we are changing something. I figure his motor and verbal skills are impaired so I am going to give him every enjoyment that is safe.

After naptime he had a couple head drops. Then between when Chuck got home and bedtime he had several more including 2 falls. 🙁 He fell straight on his back one time and bonked his head pretty bad. After the fall we put his helmet on. Chuck and I put our helmets too. I really want to get a picture of the 3 of us in our helmets. I know think of days in turns of “helmet days” and “non-helmet days”

On a positive note, I was able to successfully administer Gabriel’s medication by myself today! I have been lucky to have someone available to help everyday until today. Needless to say I was very concerned about it, but we found a new trick to get his mouth open and it worked brilliantly!

Hoping tomorrow is a non-helmet day. 🙂

Chuck and I have been blessed and overwhelmed by the support we are recieving! Please know that every facebook comment, package of Jell-o, gift card, hug, playdate touch our hearts and warm our souls. Especially, as we read the doose syndrome and ketogentic online support group boards. We have friends and family helping us make meals for Gabriel and show care and concern for Chuck and I as well. Thank you! Thank you! Thank you!

This blog is dedicated to a few specific things that I remembered to get pictures of….please know that every gesture is equally valued and being recorded for Gabriel to know about as he gets older.

We received this beautiful prayer blanket from a seminary friend this week.

I love this picture because it shows a common and natural moment in our lives. Gabriel wants us to hold his hand while he goes to sleep. He also LOVES blankies,so it was especially touching that he started requesting his prayer blankie right away.

Another kind family passed along this super cool Gator that their kids had outgrown.

I would be forever regretful if I didn’t take to time to give a HUGE public thank you to Chuck’s Mom. She literally left her entire life behind for over 3 weeks with the sole purpose of helping us! You name it….she did it—dishes, laundry, yardwork, liter pan duty, babysitting, late night emergency runs to Wendy’s for Frosty’s. She would literally sit in Gabriel’s room on seizure watch while Chuck and I learned to cook his meals. She earned the title “Miss Grandma” at preschool because anytime Gabriel went to school she was with him every second. She made sure he got his snacks, and helped his teachers learned to care for him as well as play with the other kids. She played outside with him everyday and passed on a love for gardening.

Early during her visit he learned how to plant and water.

In the middle of her visit he learned about trimming trees and breaking down limbs.  Grandma used trimmers and Gabriel used his hands.

Near the end of Grandma’s visit we potted this flower and G knew just what to do.

We have had some set backs this week with several small seizures and a couple big ones. The doctors plan is to change Gabriel’s diet each week of the next 3 weeks and get his diet up to a 4:1:1 ratio (which means 4 units of fat for every 1 unit of protein and 1 unit of “sugar”–sugar being the natural juice of an apple).  The long and short of this means more fat…butter, oil and cream.  Chuck has been doing a lot of research and believes that this ratio is the BEST for a doose kid. We are excited to have the opportunity to give our little man the BEST shot at Seizure freedom!

Last night Gabriel walked up to me and said “I eat a strawberry”. I turned to see an open container of strawberries I had left on the counter! YIKES! I asked him to open his mouth and sure enough bright red!  We gave him a tiny amount of butter to offset the strawberry and called it night.

The day went well expect that his ketone level were very low first thing in the morning then again tonight.

While Gabriel and I were leaving church tonight he had a small drop seizure. I was holding his hand, while walking out of the parking lots, when he suddenly slumped.  He stood right back up. I had to squat down and look at his eyes and ask how he was. A second later he started crying 🙁 and I knew had been a seizure. I think he cries after these because he is aware something went wrong, but is not sure what.

I had to pause and check because he thinks it is funny to suddenly slump to the ground while we are walking and holding hands.  If it is not a seizure he chirps “I am ok! :)” and keeps walking. Sigh. Really wish he would stop doing this but haven’t figured out the solution, because on nights like tonight it is good that I was holding his hand.

We hope to start counting seizure free days again. Going to keep a close eye on ketones tomorrow, make sure all food is put away immediately, and sit with him while he eats to make sure every bites gets chowed down (even if he tells us to go away!)

I didn’t get the camera out fast enough today to get a picture of Gabriel covered in stickers. He had them covering his shirt, on his legs and even on his socks! I think he had at least 40 on him!

The hospitals and doctors office almost always have stickers for the kiddos and they are always very generous when they hear how much he loves them.

This is a picture from one of his hospitals visits. The gown had been bothering him so he was wearing just a diaper, but he still insisted on wearing his stickers.

He has received many sticker sets as gifts. He loves creating things or decorating himself.

We spent almost an hour arranging and rearranging the stickers on Noah’s ark.

I love that this is the sticker he decided to wear this day! It says “God Keeps His Promises”. A plain and simple reminder to me that God is with us through the good and the bad, and faithful to his promise to never leave or forsake us.

We had an AWESOME weekend with Gabriel. Chuck and I both commented several times on how great he was doing.  We both felt very hopeful after our doctors visit on Wednesday.  It is so promising to know the diet is doing it’s job!

Needless to the seizure that hit at 2 a.m. was a surprise. It was a full grand mal but only lasted about a minute.  I am glad it surprised us, because just a couple weeks ago we expected seizures after a good day. Now we were a bummed out because that isn’t the pattern anymore.

We are putting one foot in front of the other as we figure it out together!

This wal-mart gift card showed up in our mailbox a few days ago. After some investigation I discovered it was truly a gift to us 🙂  THANK YOU to the generous soul, who cashed in their credit card points to bless our family. The credit card company can’t share the personal information with us…so for now it is a beautiful mystery!

This is only 1 of many amazing generous, kind and thoughtful gifts we have received in the past few weeks.  It has been delightful to cry happy tears as these blessings come our way!

I was really excited to try a new recipe of Almond Bread this week.  It has cream cheese, butter, almonds and a little sweetner. I was hopeful it would look like real bread and taste good. My excitement grew when I realized  I got to use a regular sized bowl and pan to make it!

YIPPEE! Looks like a yummy cake bread!

He LOVED it! Chomped it down in no time!

I am excited to give it to him again and hope he still likes it as much!  I have about 30 servings ready to go since the recipes made a full sized pan and he can only get 1 tiny piece at a time.

On a bummer note, Gabriel had a big seizure last night. The worst part is we know what caused it and it was my fault! 🙁

We had tried to mix his meds into his eggs the previous evening.  When he caught on 1/2 way through the eggs he refused to eat.  We should have just called the meal a wash and fed in the morning. But I was so excited about the bread,and I knew he would be really low on calories for the day, so I quickly sliced a small piece and gave it to him.

DING DONG Mommy! you know better! Long story short…I have learned my lesson…and if 15 grams of ketogenically balanced bread can cause a seizure….we will be diligent in every way moving forward! I am not beating myself up about it, learned a good lesson and learned it well.  Now we are back to aiming for 100 seizure reduction before our next doctors appointment.

We just got home from Gabriel’s follow appointment. We met with 4 different people in total.  It went very well. In general we have determined that he has had an 80% reduction in seizures since starting the ketogenic diet!

The doctor emphasized many times it takes at least 3 months to know anything. He was saying it in an encouraging way! Seems like it is very good that we are seeing results so quickly. For now G will stay on the diet and all the medications.

Gabriel was the exact same height and weight as when we left the hospital about a month ago. This means he gets an extra snack each day! Since they want him to grow, the nutritionist are going to adjust his calorie intake up about 5%. In our world that will mean an extra snack sometimes after nap time to keep ketones up through the night.

We also met with a neuro psychologist whose team will be working with us to monitor Gabriel’s development.  We are excited that he seems to be back to himself in language, cognition and motor skills. It is nice to know we have a lot of support.

Our last stop was to get his blood drawn. I am totally amazed at how well he handles getting his blood drawn. He doesn’t cry, fuss or scream at all. Today he just sat next to Chuck and watched the entire process. His  brow furrowed and his lip puckered a little..but he held still while she filled 3 viles.  (Amazing, in contrast, to the struggles we have getting medicine in him everytime!)

Thank you everyone for asking, checking on us, reading our blog, caring and praying! Today has been a gooooooood day!

On Sunday I gave Gabriel a couple of mothers day cards to sign. He wanted to keep the pen, so I gave him a blank piece of paper. Before leaving him alone I  reminded him “write on paper”. About a minute later I hear him say “I write my name (Pause)….on my leg”. I turn the corner and sure enough both legs are covered in black pen marks!  I can’t help but smile!  There he goes being all 3 again….pushing the boundaries just to see how much he can get away with. Needless to say the pen had to go to time out.

This was the 2nd incident this week that I found myself with wonderfully conflicting emotions! Soo frustrated because we have been over the “write on paper” bit about 70,000 times….at the same elated that the my sweet boy is wanting to write and telling me about it!

The first incident was on Wednesday morning as he was getting dressed to leave the house. I was holding the shorts he was stepping into, and he bent down and bit me! Twice on the arm!

I immediately sat him down and said “No! We do not hurt each other in this house. That hurt Mommy! Tell Mommy “I’m sorry, I won’t bite”

to which he replied…”No I not! I go to time out.”

He then took about 5 backwards while saying “I walkin backwards”.

Sits down for 3 1/2 seconds, stands up, walks to me, gives me a hug while saying “I sorry”

Seriously melt Mommy’s heart! He not only figured out his wrong but knew what to do to fix it.  The best thing is these were 2 things that had been BIG headaches for me several months ago before doose hit our lives. Makes me feel normal 🙂

Things with the diet seem to be going well.  He has not had any  “big seizures” in several days now. He does continue to have 1-3 little head drop or quick partial falls a day. My husband reminds me these are still seizures and our job as his parents are to advocate for NO seizures.

We go for his follow up appointment with the nutritionist and doctors tomorrow afternoon. I am slightly anxious…just because I don’t know what we will find out or if things are going as well as we hope.

We went to Powell Gardens, a local botanical garden, today for Mothers Day. Gabriel and I met parents and my sister as well her husband and his mom and brother. I was sure to schedule things around his medicine and meals (he ate lunch right before left and he ate a waffle in the car before we drove home). Obviously, Mother’s Day has taken on a whole new meaning for me this year. Not all about me…but about my heart full of love and hope for my boy!

"Cheese" Look at this sweet face peaking through one of the forts at Powell Gardens. Amazing shot of his face! These are hard to come by!

Gabriel's adorable cousin, LYDIA!

They say cousins are your first friends. Hope these two stay close friends for a lifetime.

Overlooking the lake. Trying to get pose of all of us facing away from camera. As usual G is looking the opposite way. Oh well 🙂

All the mommies! Left to right:Sharon Treese, Lisa Treese, Amy Russell, Barb Fluchel (notice both kids have their hands in the mouths!)

It was a fun afternoon. It was nice to be in an open public space and not have to wear his helmet! He has been pretty steady on his feet lately. He still have 1-3 small head drops or trips each day but they are not enough to necessitate extra head protection.

Today, I got to say things “No”, “Stop” ,”Not safe”, and “What are you doing?”. My little man is acting like a regular 3 year old, pushing the limits 🙂 So exciting.  He was a total chattberbox today, asking lots of questions, bossing my around. “You STAY THERE! “Put your glasses ON!”

He went to the church nursery for 2 hours today while I was in my mom’s meeting, then we went the local children’s farm, and then he played outside for hours after his nap.  He is so great about his helmets! He just goes to grab one anytime he is going to play outside! We maybe going a little overkill with them on good days like today, but he isn’t bothered by them and gives us extra peace of mind.

Gabriel and Grandma transplanted the flower he started at school yesterday.

He loves his new t-ball tee!

He even kind of let Grandma help him.

Last week, at this time I felt like I was hanging off  tallest building in town, gripping on for dear life, hoping not to plumet to into certain disaster. This week, things are much better. I’ve been saved from the immediate danger and have my feet firmly planted on the rooftop. The only problem is I am still on the rooftop and I belong on the ground!

Doose has certainly turned our lives inside out, upside down and caused all kinds of crazy….but for today…the view from up here on the rooftop is good. My kid did have not seizures today, he is talking, laughing and playing.  He has had 2 good days in a row. I made sure to stop and write down a few of victories today because we will need them for darker days when the rooftop seems too high and unsteady.

Gabriel got to go back to school today! He even ate lunch there! Chuck’s mom spent the day in the classroom with him, just to be sure he didn’t have any seizures or other issues.

Playing Dominos with one of his school friends.

Playing outside. Apparently he ran to the top of the play structure first thing.

He loves the diggers on the playground. He does a great job wearing his helmet. I heard all the other kids were really nice about it too.

Our boy loves trains! So fun to see pictures of his day and hear a great report. Since, he only goes one day a week, next week will be his last day of school for the year. Sniff, sniff…his first year of “big boy school” has gone by so fast.