ok…gotta start with the best news…..Day 2 of no seizures!!!!!!!!!!!!!!!!!!!!!!!!!!! Yippee!!!!!!!!!!!!!!!!

This week we are changing the diet for the last time (in the foreseeable future). As with the last changes we expected some hiccups with the change and we have had them. Gabriel had a big 6 minute seizure at my parents house on Tuesday morning. We have to use his emergency valium medicine to stop it 🙁 Big bummer because he had been having a great morning. We had all spent the night at my parents house because they live near the airport and Chuck had an early fight out on Tuesday . He got to attend a smart people conference on church communication and growth.

My mom had to work on Tuesday but my Dad spent the entire day with Gabriel and I to make sure he was ok and that I had help if I needed it. My Dad spent the night with us, then my Mom came down to my house (with my niece, who she babysits on Wednesdays) to help.

It was extra comforting to have my parents around even though G was doing well. We are so blessed to have them close by. They have been amazing, helping us babysitting and date nights Gabriel since he was born 3 years ago…and especially great since the first time I called during G’s first seizure (super bowl sunday). They spent the night in the hospitals with us, come over to sit with G so we could sleep, taken him for playdates and made him keto pancakes. Love you Mom and Dad!

We think things are improving…or at least going in the right direction this week.  Gabriel has continued to have drop seizures which cause him to fall down but he has not had any big grand mal seizure this week.

Today he had a great day. Talked well, enjoyed a playdate, interacted and played TONS with Mommy.  It is very exciting to see his personality shining through on days like this. He did have 4 small seizures tonight. Each one was a short gasp followed by a second or two of silence, then he would cry. He didn’t fall down or loose all muscle control like he has been. Then after 10 seconds or so he would be back to playing 🙂 Very encouraging.

We move up to 4:1 ratio next week. This ratio has been shown to be the sweet spot for doose kids. We are praying it is Gabriel’s Miracle in the diet. (The ketogentic diet is referred to as “The Miracle Diet” because it saves so many children.)

It is overwhelming to think where we would be without it.  We have been doing keto for 6 weeks now and it is starting to feel “normal”.  This process has reminded me so much of when we first became parents.  We are all sleeping through the night now ( haven’t had a seizure wake up in weeks).  We understand the schedule he needs and will do whatever it takes to stick to it!  We leave the house with a bag filled with TONS of extra stuff just in case.  This new addition of doose to our family is not one we expected but we are figuring it out.

THE GOOD:
The new diet ratios seem to be working well with Gabriel’s body. He has having great ketones readings almost all the time. He isn’t asking for food all the time either, which we think means he isn’t feeling constant hunger.

We have had several really fun and neat things happen the last few days. Gabriel got to go see a sneak preview of Madagascar 3 this weekend. He LOVED the 3D cartoon.

Gabriel has been able to go to Sunday School and have playdates 🙂 He wears his helmet most of time because he wants to.

We also got not 1, not 2 but 3 pieces of amazing real mail! 2 were beautiful notes from friends with gifts included and the 3rd was an anonymous envelope with 2 adorable gift cards to Toys R Us! THANK YOU!!!! I want to say again how much Chuck and I appreciate each and every personal touch we recieved. This battle we are fighting is harder than it should be and each act of kindness keeps us moving forward.

THE BAD:
Gabriel continues to have drop seizures every day. We has at least one where he falls to the ground every night (almost always at 6:30). We know we are making progress, but these are disheartening. Especially after the entire day has been good. We had a day recently where Gabriel FINALLY seemed totally himself (first time since March) then a drop seizure hit and he has been that good since.

THE BEAUTIFUL HOUSE!
We had 2 amazing women come clean our house today. They were here for 7 hours! They literally cleaned everything…from under the beds to the ceiling fans (they even super shined Gabriel’s potty chairs)! Gabriel ran from room to room saying  “Now let’s look at mommy’s room, now let’s look at Gabriel’s room”, etc.  I love that he picked up on my excitement!

Hello floors! I am currently soaking up every clean moment while the boys are sleeping 🙂

I was so impressed with the fact that even the magnet letters were lined up and organized.

Gabriel had a different opinion and took about 5 seconds to “rearrange” them to his liking. Sigh. After throwing the magnets on the ground he said “They go in time out on top of the refrigerator”.

It has been a few days since I have been able to update the blog.It has been a busy week trying to have fun in the good moments, rest in the bad and keep up with all the diet changes.

I would have that we have been having c+/ b- days this weeks. We will have several awesome hours, then several bad hours. He had one big 4 minute seizure on Thursday night but bounced back from it fairly quickly.  Gabriel’s ketones have been all over the place. They will be the highest possible, which is good, and then 3 hours later they will be between moderate and small, not good, then 3 hours later high again.  We are pretty sure the ketone issues explain the seizures.

We weighed Gabriel this week and he has gained 1 1/2 lbs in the last couple weeks.  Which is too much. We think that he is getting too many calories. So we are going to cut his  snacks by 50 calories a day this week.

We change ratios on the ketogentic diet again this week to 3:75:1 then next week to 4:1.   It is difficult to tell if things are getting better with the changes yet.

One of the benefits of 4:1 ratio will be more menu options. There are several books written at this ratio, including  “chicken nuggets”. We had our first success with him eating cream this week. I whipped it up with a tiny amount of peanut butter then chilled it. He ate every last bite 🙂 We also found a peanut butter flavor we can use that has no calories, carbs or sugars to order online.

We are so thankful for a really good discussion with one of the nurses at the hospital. She was able to cut through some miscommunication problems we have been having about Gabriel’s vitamins, recipes and calories to get some clear answers. One of those answers included a “Yes” to Scooby Doo vitamins! There is 1 sugar free children’s vitamins that Keto Kids are allowed to have and we got cleared it give them to G. He really likes them. It seems like a treat to him for now! We are glad because getting his vitamin supplements in him has not been going well. We still have some we have to hide in food but not as much.

 

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!