We are honored and blessed at all of the offers for help. This post is our answer to requests for our specific needs. Thank you to everyone who already have been praying for us, sent us cards, made us meals, mowed our lawn.  You have enabled us to care for and love our baby better.

FOOD:
(Many Recipes are brand specific so if you see a brand name it has to be that brand)
Unsalted Butter
Jell-O Brand Sugar Free Prepared Jell-O cups
Oscar Mayer Bacon
Macademia Nuts (staple of many recipes)

(all of the other foods we need are easily perishable or require detailed explanations of packaging and label reading).

Other:
Cotton make up remover pads. (We put these in his diaper to test his urine for ketones).

Size 4 Pampers Diapers. (We are officially putting off potty training for a while)

Treats for Mom and Dad:
Wendy’s gift cards
Starbucks gift cards

General needs:
Quick Trip Gas Cards (We received one in the mail and it literally made me cry!) We are doing lots of extra driving between doctor, hospital visits and last minute trips to various stores for supplies

Walmart gift cards. (Thankfully the majority of Gabriels’ staple foods are available for purchase at Walmart)

We are doing A LOT of spelling lately. M-E-D-I-C-I-N-E……B-E-D…..D-O-C-T-O-R are just a few of the commonly spelled words. While chatting with a friend on the phone today I spelled W-E-N-D-Y’S, but forget to spell french fries! It shouldn’t have mattered because G was alseep on the bed next to me. About a minute later he sat up and asked “I have frenchies (his word for french fries)?” UGH! Parent fail. I just said “No frenchies” he laid back down and fell back to sleep.

Here is another food conversation from today:

G:”Can I have some Mac-E-Roni?”

Me: “We don’t have any. It’s all gone”

G: “You go to the store and buy it?”

Me:”the store doesn’t have any either”

Silenece. A few minutes later to himself : “I need mac-E-Roni”

About 20 minutes later  he finally said yes to something we could offer….eggs. I think he only had about 50% of the calories we are hoping for today. At least he finally ate.

He slept most of the day, threw up his crystal light this morning, had some problems speaking for a while, did not go to sleep for the night until 10:30, but he did get to play with Nonna and Papa, go on a bike ride with Daddy, giggle LOTS with Mommy. Most importantly he did NOT have any seizures today!

Y-I-P-P-E-E!!!!!!!!!!!!!!!!!!!!!

We are home. My mom is spending the night with us tonight and will help out tomorrow morning and my dad is coming tomorrow afternoon. Chuck’s mom is coming up from Texas on Saturday to stay for a while and help us out. We are so blessed to have amazing family to help us out.

I have at least 10 blogs entries in my head right now but I am going to keep it short and sweet…..Gabriel finally finished an entire meal tonight! 🙂 First meal of the day he completed. Since eating every last bite is incredibly important we are celebrating the small victories!

Gabriels blood sugar levels are down and his ketone levels are up. Both are good things in our upside down little world. With his blood sugar’s down it means his brain is producing ketones (meaning the brain is burning fat).

We met with the nutritionist today. There were several pieces of good news. We are going to have a lot of support in creating menus. Each meal with be the same ratio and the same calories so we can have some flexibility as we are learning. Gabriel can drink as much water as he wants as well as sugar free, caffeine free drinks like vitamin water zero and crystal light. The approach is very much learn as you go. Keep trying new things until they work and track result. We have been in charge of measuring out and serving all of his meals while here. The reality that we are going to do this at home is a little overwhelming and not too bad at the same time.

He had several seizures today. One while they were trying to replace his IV line. After several tries they finally decided to wait for the transport team. The transport team on the people who work on patients in the helicopters and ambulances. They are the best of the best at getting lines started and had success with his line.

He has started having a new kind of seizure where he looses consciousness very quickly, falls to the ground and comes right back to consciousness. These are very scary because they are so fast. We are keeping eagle eyes on him right now. He has had 3 and each time he seems emotional and cries for about 30 minutes after them. His doctor said this is not uncommon because the diet change takes a huge toll on the body.

Whew!That was today on the roller coaster ride of our lives.  I have to say that after 2 month of extreme dips, turns and loop the loops today has been more of kiddie coaster.

Gabriel is still doing well eating his Keto Meals.  Who doesn’t like bacon 🙂  Today we start the education classes learning how to do everything Keto.  Last night was a little rough, he didn’t drink the cream that his medications were in at lunch and as a result we had a return of the head drops that the clorazapate had pretty much taken care of.  Were still seeing them this morning.  We are praying that with a return to his medication they will once again go away. 

Gabriel gets a sticker everytime they have to prick and test his blood sugar levels (before each meal). He loves the stickers and wants them to wear them immediately.

Gabriel has had his first 2 meals. He did a great job eating all of the food both times. The first time we tried mixing some medicine into the cream and he figured it out quickly and refused to drink it. The second meal we put 1 drop of stevia and tiny pinch of sugar free chocolate pudding in it and he loved it! Drank it down super fast.

They are easing him into the diet over 3 days. Today he has been eating at  a 1:1 ratio. Meaning for every unit of fat he is having 1 unit of protein and 1 unit of carb. Tomorrow will be 2:1 2 fat to 1 protein and 1 carb then next day will be 3:1.

This was his first meal. Mayonaise (2 take out packages); Chicken breast (about 1 1/2 ounces); about 3 ounces of heavy cream; and TONS of berries! Blueberries (1 cup) and strawberries (1 1/4 cup)

Second meal: 1/2 slice of American cheese, same about of ham. 3/4 a banana, 3 ounces of heavy cream and About an ounce of canola oil. Yes the canola oil came in it’s own container. Like a side dish! I dredged the ham in the oil, then poured a little in the cream, then told him it was dip for his banana. He willingly dipped every bite of banana in the oil.

We are officially checked in. G did great with all the medical professionals. He had a small seizure at home and is very tired. He had about 20 minutes of mild whiny crying but then Daddy found him some trains to play with and all is good.

Esther 4:14 For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father’s family will perish. And who knows but that you have come to your royal position for such a time as this?”

This often quoted verse from Esther came to mind tonight as I was thinking about tomorrow.  It is very difficult heading into the unknown…..especially when you foresee the unknown to be bad.  Esther’s relative Mordecai is literally asking her to risk her life by going to the king. I imagine that Esther did not think this was such a great thing and was very scared, but she trusted and took the step of faith.

I am in no way comparing our situation to Esther’s, but I can draw strength for this biblical example. I am so very glad that we were able to wait a few weeks before going on the diet as originally planned. We have had some good times at home as a family. We have been able to rest at home and avoid hospital stays for 3 weeks.  We have been able to do more research and introduce new foods to Gabriel.  We have gone through the heartache of seeing a third medicine fail to control his seizures after almost 3 weeks seizure free.  All these things make me aware that this is our “For such a time as this”

I have many worries and what ifs in my mind.  I hope like crazy the diet works. We are reading that it can take up to 10 weeks to tell.  I hope he will eat every last bite of the food and that meal times are not battles like medicine.  I hope I can overcome my “close enough” personality and can be diligent in weighing and measuring every gram as the diet requires.

I am exceedingly thankful for the abundance of resources, information and support we have available to us.  I know that if and when I fall there will be arms to catch me.

I turned 36 today.  I am sure this will be one of those birthdays that sticks in your mind for years to come. Hopefully many seizure free years from now it will be …”Oh yeah that was when Gabriel was first diagnosed and we were getting reading to start Keto”.

Today was wonderful in the simplest of ways.

3. Gabriel and I got to eat 2 of his favorite foods together today… Red Robin and Pizza.

4. Not 1 but 2 floral deliveries arrived for me.

I am typing the blog today as he takes his 3rd nap of the day.  He is taking LOTS of meds right now. While his body is adjusting,  his energy and sleep patterns remain crazy.

He had 3 seizures in the middle of the night last night. 2 short ones (under 1 minute) and one longer one (over 4). Needless to say this messed up all of over sleep for night. I woke up 10 minutes before my preschool class starts—YIKES!

I was glad I got to go to work today. I love teaching and have an especially loving class full of sweet kids.  They greet with me with lots of hugs, energy and stories. Being around my class reminds me to hope that Gabriel will be back and school having fun soon as well. It was great to see my school kids and get encouragement and support from the amazing women I work with.

He had a fun day playing with my parents today. They took him to Chick-Fil-A. They babysit on Thursdays while I work and one of their weekly traditions is to spoil him with some fast food. So this was the last time for that tradition…at least for the foreseeable future.  I think Gabriel and I will have several fast food meals this weekend before we go into to start the Ketogentic diet on Monday.

Thanks for following our story and helping me process our life events.