Tuesday, April 27, 2010

Not Very Appealing

So we have found that Johns Hopkins is not taking us (as of today; it could change).

They said it is because they can not ethically provide a service that we could get for free in our home state. Did they even listen to the part about our insurance NOT paying for this? Oh, I am so frustrated. We are still going forward with the hope that we can convince our neurologist to write a letter to the insurance. We do not meet with him for a couple of weeks, so until then we are asking for a miracle! We were supposed to start today at Primary.

Cole deserves a chance. He is a prisoner in his own home. He is lonely, frustrated and bored (and it goes the same for me)! We have been trying to get all of the medical records together for Hopkins, but we got an e-mail today that told us to not waste our time sending them until we could get our insurance on board. Anyone know some sort of interesting insurance spell that can make people see our way? I would be willing to dabble in VooDoo :)

Until then, I have to get some heavy hitters on our side to convince our insurance that it is worth their money to pay for the ketogenic diet. Sounds appealing, eh?

Tuesday, April 20, 2010

Perfect Gifts

If we are going to pay for Johns Hopkins, I am going to have to sell a LOT more Scentsy! :)For all of you who are struggling with what to get your mom for mother's day....Scentsy is the perfect gift! Go to my website, I have a party set up just for this occasion. You can always give me a call, or I can send you the basket of samples for a party. There is something for everyone in our new catalog. Order now to make sure you get everything in time for the big day!

P.S. If you are upset about Scentsy discontinuing your favorite scent, you can go here and vote to bring it back for the month of July!!

Monday, April 19, 2010

Change of Plans

Well, last week was interesting too. I have tried anything I can think of with cream, including whipping it, coloring it, freezing it, adding it to diet soda and a bunch of other stuff. It's going to take a while for Cole to get used to it. If we offer him nothing but cream then he will have no choice. He is taking oil pretty well when I mix it with applesauce or eggs. Plus, we found he likes Iceberg lettuce! Here I have been trying to get him to fancy lettuce and he wants the cheap kind that makes me sick :) This kid keeps me guessing.

We do however, have an announcement....

At this time, we will not be starting the official diet next week. We have decided after talking with a bunch of our friends who have started the diet here, that we are just going to wait and take Cole to Johns Hopkins in Baltimore. Dr Kossoff, the head of the ketogenic team is so responsive and has already e-mailed us multiple times. The problem we are having is with our insurance. We called them and they were not even aware that we were planning on going to Primary next week. Good thing we made that call, because they said that the diet would not be covered! If it's not covered at an in-network hospital, we know that there are going to have to be some miracles involved to get them to cover part of Johns Hopkins.

Brian and I know that this is going to be more expensive, and that we are going to have to put off starting the diet until July. We feel that it is the right thing to do for Cole. Plus, if we do end up moving back East in the fall, we will be close to Johns Hopkins. It may be that we have been prompted to make this career move specifically for our little boy.

Things can always change again, but we feel good about moving forward and trying to get to Baltimore. Maybe Grandma Tweet can ask a special favor?

Monday, April 12, 2010

Test Diet, Day 1

I knew this was going to be hard. I knew I was going to have to be creative. Today just re-enforced that. There have been a lot of tears today.

This diet is very high fat. The majority of it comes from cream. There is also butter, oil and mayonnaise.

Cole hates heavy whipping cream, doesn't want anything to do with it. It is a part of every meal. I have tried it frozen like ice cream. With strawberries, without strawberries. With natural vanilla, with coconut milk. Thinned with water, thinned with fruit flavored water. Cold, room temperature. It's a good thing that it is only a 4 oz serving at a time.

He immediately rejected his eggnog (a keto recipe) first thing this morning for breakfast. I just decided to try other things throughout the day. Cole would not eat all of his lunch, this is no surprise. He hardly eats anyway; but especially if it is a food that he does not like. I tried to give him water to keep him hydrated, but he was not interested in drinking plain water. Terrible two's just got more terrible.

I have officially locked the fridge. I took a strap off of my big backpack and clamped the doors together with it. Cole is strong enough to open them. He took out strawberries, carrots, and something else today that I can't remember. SO-the pantry has always had a lock, now the fridge does too.

I was really hoping that dinner would go better. I had tried to get him to eat a keto-friendly snack in between meals, but he only took a small amount. The dinner recipe was: 4 oz heavy whipping cream (to drink), 2 tsp ham, 1 Tbsp carrots (cooked), 1 tsp butter. That's it. I felt like we could do this. I told Cole that the ham was hot dog, the only meat he will eat. He wasn't buying any of it. He'll eat raw carrots, won't touch cooked. I knew this, but thought if I waited it out, he would at least try.

I had Cole strapped in the high chair for over an hour. I tried bargaining to no avail. We had practiced a reward for eating the other day with his speech therapist. He wanted Daddy, he wanted to get down, he wanted Grandma. I knew that he would beg and put up a fight. I even tried to force feed him. He just spit it out. So I just left him alone and told him that he had to eat before he could get down.

However, I didn't know that he would gag so hard drinking his cream that he would vomit what little he has eaten today.

I guess I'm back to square one. Here's to having tomorrow be a new day. On the menu-tuna (yeah, right); lettuce (in your dreams); peaches (YES-something he likes); eggs (nope); chicken (maybe); green beans (never); and a LOT more cream/coconut milk.

Prayers are totally accepted...

Sunday, April 11, 2010

Ups and Downs

Last week was...interesting. Shingles, CT that came out completely normal, unexplained pain, random infection-but that's enough about me; Cole did not have the greatest week ever either. We were stuck inside when Spring finally decided to pay a visit. It is heartbreaking to tell your 2 year-old day after day that he can not go outside.

We finally decided to venture out today to a family party. As we were going down the highway, Cole was unusually quiet. We thought that he was still trying to wake up from his nap. We pulled in to the driveway; his eyes were fixed and he couldn't turn his head to the right. Needless to say, we didn't even get past the sidewalk. I just got in the back seat, Brian ran in and told the family that we were sorry we couldn't be a part of the celebration, and we turned around and came right back home. This particular seizure was very mild compared to others, but just another slap in the face reminding us that we are far from normal. We start the test diet tomorrow.

I am more than nervous.

Saturday, April 3, 2010


We went on a short trip to Colorado this week. Brian had to be out of town again for work and I just couldn't go another week without sleep. We have some friends that we stayed with and got to see some family members that live in the area. It was just a reminder of how much Cole has changed in these last few months. In September we took him on a road trip to California where we spent the majority of our time hopping from one beach to the next. My little guy LOVES the ocean, just like his parents. He was having a lot of drop and absence seizure back in the fall, but things have definitely gotten worse. I remember how nervous I was to make that trip. This time there was even more anxiety, but it was manageable. There was no swimming, no sun, no long periods in the car. He just can't do it. This trip, we were worried that he would not even make the 50 minute flight without having a major seizure. Instead of just the two regular doses of rescue medication that we always carry with us, we carried it ALL on the plane. I think we went over our one plastic bag per passenger limit. I even looked up the local hospitals before we left to see if they could take care of our needs if we needed to go there.

Our friends were great, but I am sure glad that we have not started the diet yet. There were so many temptations! I am already dreading having to tell my two year-old that the other kids can have ice cream but he can't. We decided to venture out one day to the park because it was almost 80 degrees with cloud cover. Hoping that the temperature change was going to be small enough that Cole could handle it, I agreed to go and have a picnic. Cole had a wonderful time and we were only there for an hour, but later that day it caught up with him. He had a 20 minute partial-complex seizure that was mild, with no convulsions, but long. Needless to say, we stayed inside for the rest of the week with no activities that you would usually participate in on a "vacation". It was Thomas and toys as usual, with me watching his every move. It was actually kind of nice to do my same-old same-old routine in a different environment. I'm sure that we seemed crazy, flying somewhere else to just sit on the couch and play with someone else's toys. It was all we could do though. We're just really restricted at this time in our lives. I am glad that we got to go at all!

So even though we didn't get to go to the zoo, the outlet mall (SAD), Children's museum, or anywhere else for that matter...Cole and I had a swell time. It was great to talk to another adult during the day. You forget how much you miss being able to ask someone a question and not get an answer like "Airplane! Elmo!" I guess we just need to be as social as we can for the next couple of weeks until we start the diet. Anyone up for a play date at our house...with no light or sugar? :)
Photos by Capture Me Candid