A Carb Free Halloween

I really was not sure how Halloween would go for Max this year.  Halloween is the one holiday where it is VERY hard to escape candy.  There is no commercially made candy that Max can eat.  One piece of candy would use up all of his daily carb allowance.  I have been worrying on and off about Halloween since we found out that he would be going on the Modified Atkins diet. 


Max had a Halloween party at school this week.  I thought about keeping him home, but his teacher encouraged me to bring him.  She felt he could handle it, and she was right.  I sent him to school with some homemade peanut butter candy in a thermal lunch bag with ice packs.  I also sent some pork rinds just in case.  He had a wonderful time!

Yesterday I took Caroline to a local Halloween event.  We met up with one of her school friends and we went from store to store tricker treating.  The girls had so much fun.  Caroline kept saying over and over, "this is the best day ever!"  Max spent the time napping at home with Daddy.

Tonight was the big night.  Max was tired and kept saying he wanted to go out without a costume.  I finally talked him into wearing it, and we all headed out.  The thrill of the night kicked in at the first house.  Max ran up to EVERY door.  He went up all the steps without ever putting his hands down.  Such a change from last year when he crawled up most of the steps.  He fell quite a few times, but only because he was so excited and rushing.  At the first house he tried to explain he was on a diet.  My neighbor looked heart broken when she realized she had nothing she could give him that he could eat.  I told her not to worry we had a plan! 

The plan went off with out a hitch.  Both Caroline and Max agreed before hand that they would trade in their candy for a DVD of their choice.  Max would be able to get some peanut butter candy in the trade and Caroline was able to keep her candy from yesterday's event.  They ran in the house and poured their candy out and waited for the DVDs.  They were both thrilled, and I was relieved.  Max did not feel left out, Caroline did not miss out, everyone enjoyed Halloween.




And....Mom and Dad have a nice little pile of candy to enjoy!

Hedgehog Breakthrough

Over the weekend I bought a small clay hedgehog. It just spoke to me. I thought I could write a story about it for the kids. A story was written tonight, but not by me.

We have tried to ask Caroline about what is bothering her so many times, and in so many different ways. We always get the same answers, and not a lot of information. The school counselor talked to her this week and heard all the same things we have heard. Nothing huge, nothing that added up to all the emotion we have been seeing. So tonight, on a whim, I started playing with the hedgehog and a small toy cat, Libby Lou. I wanted to see if Caroline would open up to us while playing. I had no idea if it would work, and frankly I am in shock at how well it did work.

As soon as we started playing with the hedgehog it all became clear.  I started with a story about how the hedgehog was nervous about the bus and maybe her kitty friend could help. Within a minute Caroline joined the story. "The hedgehog is scared, but she doesn't want to tell her mommy about it..." I held my breath and waited. She kept going, telling a story where it was clear she was the hedgehog and her good friend on the bus was Libby Lou. Occasionally Ray or I would catch each others eye, but mainly we looked away. Ray did the dishes, and I sat with her at the table. We took turns asking either Libby Lou or the hedgehog questions whenever Caroline slowed down in her story, and then more details would come out.

She filled in the missing pieces on why the bus was making her so nervous. We then heard about a mean bunny, who was pushing the hedgehog at recess, but after a class program on tattle tales, she didn't think she could tell about it. She said Mrs. Snail was never fast enough to help her, but once another Kitty teacher stopped the bunny. After the bunny story we learned that the hedgehog was concerned about math. This was the one part of the evening where we cracked a few smiles. The hedgehog felt she could never win a cake walk if she could not read large numbers!

As I put Caroline to bed tonight she looked at me and said, "I think me and the hedgehog are alike.... we both have a lot of worries."


My sweet high strung little hedgehog, I love you! Thank you for talking to us tonight.  We will help.

I will be keeping my eye on the bunny and having a chat with Mrs. Snail (I am not sure what Caroline's teacher would think if she knew how she has been scripted). I think it is time for a break from the bus. I think hedgehogs prefer mini vans anyway.

The Worry Monster

When I was 4 years old my mother gave me the book Mr. Worry.  At 5 I remember waking up to find my pediatrician standing over me in a tuxedo.  In England in the late 70s, doctors made house calls, even if they are at a black tie event.  I had been doubled over with stomach aches again and again.  In retrospect, we realized that my little American psyche did not take well to being a Brit. It was not until I returned to my native soil at age 8 that I settled down.  A few years later I developed the dreads.  The dreads were an intense Sunday night worry that lasted for years.  I usually ended up crying myself to sleep out of fear of not getting enough sleep.  I was a WORRIER!  I have spent a good deal of my adult life getting a grip on it.  It really should not have come as a surprise that I gave birth to a worrier.  Caroline is a mini me in so many ways and she has the worry gene.  As a baby we would joke that it looked like she was wringing her little hands as she frowned up at us.

Caroline has been really struggling, and it has me struggling to keep my own worries at bay.  To watch her so overcome with fear and worry is heart breaking.  At her recent parent teacher conference her teacher told me that Caroline was highly emotional compared to her peers and yesterday her afternoon Kindergarten teacher pulled me aside to inform me that Caroline has been crying, sometimes hysterically, pretty much ever afternoon that she is there (twice a week).  My poor sweet little girl.  She takes on worries I can't even comprehend sometimes, and it is hard for her to even tell us why she is so upset.  Starting Kindergarten seems to have pushed her over the worry cliff.

It is common in a family like ours to label the kids.  Max is our sick one, Caroline is our healthy one.  But that is so unfair.  Both of our children have strengths and weaknesses.  I think it is all too easy for Ray and I to say to ourselves "she is healthy, check, done!"  Then we get a reality check like we have had in the last few months.

Thankfully we have learned that resources abound, if you know where to look for them.  As part of Max's program through the county we have access to a child psychologist that the whole family can use.  Caroline's school has their own school counselor who is a child psychologist.  We know how to read and research.  We know to try calming techniques due to all our research for Max on sensory issues.  We can work with this.  We can get our little girl out of her own waiting room. 

Times like this are a good reminder on how our work is never finished.  I was up a lot last night....worrying.

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No news yet on the blood test at Columbia University.  I have done a pretty good job on not worrying about that one :)

Off to New York

In a few hours part of Me, Ray and Max will arrive in New York.  It is really too bad it is only part of us....our blood.  I am pretty sure the rest of us would like a trip back East.  I hope our blood has a very nice time at Columbia University and I hope that it gives us the answers we are looking to find.


What are we looking to find?

This test, preformed only by the research team under Dr. De Vivo, the doctor who discovered Glut 1 DS, will tell us once and for all if Max has Glut 1 DS.  Max is considered to have it clinically, meaning all his symptoms fit, and there is nothing else that does fit (that medical science knows of at this time).  However, he does not have the genetic marker.  So if this test comes back negative it means that he does not have Glut 1 DS.  It means he has Looks like Glut 1 DS, but is not Glut 1 DS. 

My gut says the test will come back negative.  Max is one of a kind, truly, and I think this test will prove it.  That does not mean we will stop the diet.  The diet is working.  A negative result will not mean we stop looking for a name for what he has either.  His neurologist has already put in orders for the metabolic team at the hospital to review Max's charts. 

AND, it could come back positive.  If it does then we will breath a sigh of relief, because one aspect of the waiting room will have come to a close. 

Either way, the fact remains that the glucose in Max's body is not getting into his brain enough to power him 100%.  Is it because of Glut 1 DS, or is it because of Marvelous Max DS? 

We will know in a week.

Food Envy

At our recent party I was marveling at how Max accepted everyone eating brownies in front of him as he ate Jello and homemade peanut butter candy.  He really amazes us at every turn with how he has accepted the Modified Atkins diet.  Snacks at school and church are no issue, as long as his beloved bacon and cheese are offered.  We travel with diet soda and Crystal Lite everywhere we go, and I am pleased to report most restaurants are wonderful about creating a children's menu offering of a cheese burger, no bun, baby carrots and a side of bacon. 

However, Max has slowly been exposing his food envy in down right adorable ways.  Yesterday we had another of our mommy son days, due to a teacher work day.  We started it with his usual request to go to the hospital, but alas no appointment was needed, so he was stuck with plain old mom instead of the exciting staff of the Children's Hospital.  He then asked to play.....Funnel Cake.  Yes, funnel cake! 

Last weekend at a Fall Festival Max saw us eating funnel cake while he enjoyed some Jello.  At the time he did not seem very interested in the funnel cake, but I do remember he was staring at it.  Now I can fully understand this need to process, we are after all talking about a heaven sent treat that few should live without.  I was unsure however how to play funnel cake.  But Max knew how!  He got out a bag of cotton balls and a pair of salad tongs and proceeded to make his version of funnel cake.  He made cake after cake.  He then asked to go downstairs to the ball pit for more funnel cake fun.  We headed down there and he directed me to get inside.  I love the ball pit, so in I went.  He climbed in after me, and Max became the funnel cake.  I fried him up over and over by swirling him around in the balls.  He LOVED it! 

This is not the first time he has played food games.  A lot of his games involve cooking.  On Fridays when he is off of school, but Caroline is not, he loves to sneak into her room and take over all the doll food.  A usual Friday morning involves birthday parties for different toys.  The menu is always french fries, candy and cake.  It was not until the funnel cake game that I really connected what was happening.  Max wants these foods, but knows he cannot have them, so in Marvelous Max fashion he has found a way to cope. 

I think I could learn a thing or two from Max.  I am off to play Hawaii and later I think I will play day spa!

Waiting Room turned Party Room!

I love to plan a party.  Sometimes I love the planning more than the party itself!  Last weekend we had a wonderful party.  It was a 6, 4, 64 party.  Caroline turns 6 this Fall, Max turns 4 and my mom and step dad turn 64.  So on the eve of mom and Jim's departure for their winter home, we had a party to honor the four birthdays.

Caroline enjoys the planning as much as I do and she was a big help, although I think she would have preferred a pink color scheme.  Max was on the fence about it and was a bit concerned when he realized I was using what he calls his fruit salad, which are really red Christmas beads, as a table decoration.  Both kids really enjoyed the theme of numbers.  We even made candy in the shapes of 6s and 4s using Max's candy molds. 

Max has quite a collection of candy molds.  One of the few candies Max is allowed to have is peanut butter candy.  It is equal parts butter, coconut oil and unsweetened peanut butter.  I mix it together, add a few drops of Stevia, pour it into candy molds and refrigerate.  Max enjoys the candy when it is shaped to look like french fries the best.  Due to its high fat content, the candy is a main part of his diet.  I am glad he likes it so much.  We all had brownies for dessert, but Max requested jello and peanut butter candy.  I had been concerned about how the diet would effect special events like birthdays.  So far so good.  I stuck a candle in his jello and added a side of his candy, he was thrilled.

I consider the evening a grand success!  I was able to indulge in a little creative fun, we honored special days that otherwise we would have spent apart and Max thinks peanut butter rules the world.  Life is good!

Waiting Room Turned Craft Room

While in the Waiting Room I like to make things, arrange things and organize things. When life is very stressful organizing is usually top on the list. I think it gives me a sense of control and order when things are feeling chaotic. At slightly calmer times, creating and decorating take over. The pictures above show some of my latest projects and favorite things.


Left to Right:
The back to school center piece for the dining room.
I got the idea for the glass urns from a wonderful blog I found A Little Loveliness. The idea of the apples and the pencils came from a friend of a friend.

I made a magnetic memo board for Caroline's room.
Caroline needed a place for all her special school projects. I used an old frame, ducting metal and left over fabric from another project and a lot of duct tape.  I then made the green magnets to go on it.

I arranged my favorite tea cups in the kitchen, so I could enjoy them all the time.
My father gave me the glass tea pot and I found the wonderful plate and cups at Tuesday Morning last winter.

My favorite thing to look at...my bed side table.
This is not a new display but something I adore, so I wanted to include it. Ray gave me the monogrammed silver box years ago.  The hand painted china plate was a wedding present.  The velvet rabbit and flowers were a birthday present from dearest Utah Caroline. My little Caroline sneaks in all the time and rearranges them, having the rabbit hold the flowers.

The ultimate though, is when the Waiting Room turns into a Party Room.....stay tuned!