Monday, February 21, 2011

Mayo is not the only new thing around here!

An update from the Land of Mayo! 
Yes, that really is a picture of my child eating a bowl of mayonnaise.

I feel like I have taken up permanent residence in one corner of the kitchen.  The stove, trash can, and gram scale area is where I spend my time, conveniently they are all located near each other.  I mix, pour, weigh, grind, fry, and degrease in this area.  Caroline watches me with a keen eye and has been quick to tell me she has no interest in test tasting anything.  I tried to get her to eat the first batch of pudding I made with regular jello, instead of sugar free.  She managed one taste and that was it.  Max however is really enjoying all the food that I am making with his Ketocal powder.  I made pancakes, which actually look like pancakes!  What you see in the photo is only 1.5 carbs!  He loved them.  But more than anything I think he was excited about the half a piece of strawberry he got with them.


Next I tried making fudge.  The recipe called for coconut flour, which I did not have.  However, I had just made my own almond flour (ground almonds) for another recipe, so I used that instead.  The fudge looked nothing like fudge, but Max adored it.  It was so fun to see him happy with food.  He asked me if I would make it again after the first bite.  4 squares of it equal 1 carb.  The pudding I have been experimenting with rivaled the success of the fudge.  It only has .5 carbs per serving.  Life is just more fun with treats in it.  I am pleased to have more options than the peanut butter candy I was always making for Max.

Yes, that is Max eating pink pudding on the couch...my standards are slipping.
Now life can't be all pudding and fudge, so I have been working on my avocado campaign.  We get a wonderful guacamole from Sam's club that is just smashed avocado and mild spices.  Max does not like it, but I am determined to get a tiny serving of fruits and vegetables in Max's diet.  The new sweets have allowed me to move away from feeding him guacamole in his sleep, messy yet effective.  I now hold up a piece of fudge and a tablespoon of guacamole.  Bingo, a slightly more well rounded diet, if such thing is possible on the Modified Atkin's diet.  I am not sure if these tiny amounts make a difference, but at least I can sleep a bit better at night. 


  

Wednesday, February 16, 2011

Mayonnaise and Medical Food

Yesterday I headed out early to get Max to his monitoring appointment at The Children's Hospital for the Modified Atkins Diet.  It had been over 3 months and he was due for more blood work and a visit with his dietitian and nurse. 


Max didn't even make a sound when he was stuck and 6 vials of blood were drawn.  I on the other hand, made quite a fuss.  The labs were coded that Max had intractable epilepsy and no one could tell me if they were drawing for his serum ketone levels or not.  A few phone calls later it was cleared up, but I was left with an elevated heart rate while Max smiled and asked if I wanted to play Batman with him.  He is SO used to this, it doesn't phase him.  I wish I could say the same.


After the lab work we rushed upstairs to our appointment.  I found a neurologist waiting in our exam room for me.  Now this turned my day around, a doctor waiting for me, instead of the other way around.  There is nothing like a little rock star treatment to help you forgive clerical errors.  The neurologist wanted to include Max's chart in a database he is putting together of all the kids they treat.  It was nice to meet another neurologist and he was great with Max.  I liked the way he treated him and talked to him.  Max was not just an interesting rare disorder, he was a person!  I thought the database was a great idea, so I signed the pages of forms to release his chart.


Next we got to meet our new nurse and visit with our wonderful dietitian.  The nurse was genuinely delighted with Max and they both were so forgiving about the volume of the iPad. 

With each diet visit I worry we will hear that Max needs to be switched to the Ketogenic diet.  We escaped that fate by a small margin yesterday.  Max is not gaining any weight, and he has gotten taller.  This is not good a good combo.  He is not getting enough calories.  They told me that his back sliding in January is proof that at times he was literally starving.  That was tough to hear. 


Thankfully they had a solution, medical food and mayonnaise.  The medical food is a powder called Ketocal.  It has a lot of fat and calories in it. We have tried it before, but Max rejected it after a few tries.  The dietitian handed me a new product, a juice box filled with vanilla Ketocal, for us to take home.  She directed that he should drink one a day.  I was also given a recipe book on how to make different foods with the Ketocal powder, and I was given more sample cans.  Then she started talking about mayonnaise.  My stomach was turning, really mayo?  Well I have gotten used to butter, I suppose we can do this. 


On the way home I tried to pump Max up about the drink box.  I told him it was very special and it would give him big muscles.  Max started to cry and through his tears said, "Noooooo, the new big muscles will push out my old muscles, noooo!"  I changed my approach on the fly.  I told Max that this drink was only for super hero boys.  That Caroline would NEVER be allowed to drink it.  He asked for the drink that second.  I pulled over and gave it to him.  He drank it, loved it, and then announced his burps smelled like vanilla.


Once home, I attempted a jello/pudding recipe with the Ketocal.  I messed up the first batch by using regular jello, bummer, there goes $10 worth of powder.  The next try worked well.  I created a single serving of pudding that had 20 grams of fat in it and 200+ calories, but only 1 carb!  The best part, he called it cake, ate it right away and then asked me to make more. 

 
Then came the mayo.  I waited for Ray to get home.  I made him spoon it in Max's mouth.  I had visions of my sister passing out, she hates mayonnaise with a passion.  Guess what, our super hero fat burning boy loved it and wanted more.  So now we feed our son butter, mayo, medical food, hot dogs, brie, shrimp, nuts and lunch meat.  This just feels so wrong. 

 
Today I ordered a case of the drink boxes and one canister of powder, just shy of a month's supply for $158.  I spooned my first spoonful of mayo in Max's mouth with his breakfast of cheese and bacon.  Tonight he ate a bowl of it and he calls it soup. 

If this can help Max gain weight and keep him on the Modified Atkins and off of the Ketogenic it will be well worth it, but it will take some getting used to.  Thankfully my super hero is already with the program.

I wonder if he would like this product? I checked it is low carb!
 

Tuesday, February 15, 2011

Valentine's Day 2011

When I look back over the photos of yesterday it looks like an idyllic family holiday, but then again, I rarely take pictures of crying children.


I was excited for Valentines day.  It was hard not to be, since Caroline has been planning for it since the first week of January.  She has been making hand made Valentines in her room and keeping them hidden in a hat box.  She was like a bubble about to burst she was so looking forward to giving them to us.  Ray and I were a bit nervous about how it would go with Max.  Max is not known to be a good gift recipient.  If he does not care for what you gave him he will let you know!  It is embarrassing, but at least we still can go with the, "well, he is ONLY four..." excuse. 

I awoke to find two paper dolls by my bed that Caroline had made for me.  So sweet, so she got a great reaction out of me!  Ray was also blown away by the Angry Bird's iPad drawing she had made for him.  Next it was Max's turn.  Caroline handed over another Angry Bird's iPad drawing with Max's favorite yellow bird on it.  Max smiled, he said thank you, he hugged it to his chest, we all breathed a sigh of relief.  And then Max burst into tears.  The yellow bird looked TOO happy.  Sigh.  But Caroline didn't mind a bit.  She was so excited by his initial reaction that she forgave him instantly for his critique.  She took him to her room, sat him down and had him tell her exactly what he wanted.  She drew it.  He then carried both of them around all day.

The not angry enough Valentine.  He requested the Mighty Eagle for the next one.

Max has been quite cautious about Valentines day.  He knew he was going to have Jello at the party at school and he was worried for some reason.  He would not go to bed the night before until I promised I would stay at school with him during the snack time.  He kept talking about how it was messy.  He eats Jello (sugar free of course) at home daily.  I didn't understand the issue.  We wondered if one of the kids teased him at some point about his Jello etiquette?  I went with him and it all went well. 

After school we went to pick up Caroline.  The kindergarten room mother's put on quite a party.  She was all smiles when she came out of her classroom with a huge bag of Valentines.  Most of them had candy on them.   I wonder if Max has forgotten what candy tastes like?  He showed no interest in her bag or the bag he was sent home with, also filled with candy. 

While the kids were in quiet time/nap time I decorated the kitchen for our Valentine's dinner.  As always, this was a lot of fun!  I had some paper I had gotten on Christmas clearance from Hobby Lobby that was perfect as a table runner, it looked almost like hearts.  We don't have many Valentine's decorations, but I do have a small feather tree that I decorated with red hearts.  I had gotten some balloons and heart straws from the Dollar Store, so those were a fun touch.  All we needed was Ray to come home with the heart shaped pizza! 

That took a while. 

I should have fed the kids when I realized how late it was, but I wanted us to all eat together.  I also wanted to make Max heart shaped scrambled eggs.  By the time the food was ready Max was in hysterics, he was so hungry.  He wouldn't use his straw and he refused the eggs.  Dinner was loud, emotional, but very well decorated :)


After dinner the kids opened cards and a few small gifts that their grandparents had sent.  We gave them a few gifts as well.  Since we can't give chocolate for Valentine's Day, the toys were a great substitute.  Our picky gift guy liked what he got (but I will admit I switched his gift out at the last minute for another one I had stashed in the gift closet) and so did Caroline, so I suppose it ended very well.  Especially if you don't count the part about us putting Max to bed way too late, which of course meant more tears.  Or the fact that I got a terrible head ache and went to bed not long after Max. 

Idyllic no, but it was memorable!  And I think Caroline has a future in the gift card industry.  iPad Valentines, I think that is an untapped market!

Wednesday, February 9, 2011

Physical Therapy and why my husband should give me his iPad

I have had a prescription for PT from Max's neuro hanging on our bulletin board since the Fall.  In late summer he was released from OT/PT.  Before his diagnosis he could get services, after finding out it was a metabolic condition, and thus life long, he was dropped.  Our insurance was willing to pay for it if it was considered a temporary condition, like rehab after a car accident.  I was drained from my battle with the insurance over the summer and I was not up for another fight, so the script just sat there.  I would look at it and feel guilty.  I had lots of excuses, school was starting up, hmmm another trip, I should wait until we get back, oh here come the holidays.  Thankfully I had a supermom come to my aid once again, thanks Amanda.  She told me about a program through a local hospital that would offer PT and OT for a small fee if you could not get it paid for by insurance.  I got Max on the waiting list at the beginning of 2011 and just 5 weeks later I got the call! 

I am excited about this for Max, but I do move forward with hesitation.  I remember the life of constant appointments.  I remember thinking I needed a bumper sticker saying "Therapy Mom" instead of "Soccer Mom."  I remember Caroline's jealousy over so much of our time being dictated by Max's needs.  These last few months have been a nice break for all of us.  Even if during the break I felt guilty, it was still restful. 

When you are not surrounded by specialists you get to feel normal.  The snails pace progression of Max's physical skills is something that is hard for me to face.  So, not facing it sometimes helps.  I know, it is an unhealthy game my brain plays, and pointless anyway.  Max is in an early intervention school, we have a Children's Hospital appointment next week, he eats butter as if it was a major food group.  Normal, I don't think so.  So with today's call I took a deep breath.  We are headed back to the familiar world of evaluations, appointments and homework exercises. 

But at least we get to do it all without the insurance battle and this time we will do it with an iPad. (I hope)

I truly cannot say enough wonderful things about the iPad.  Both kids love it and there are so many wonderful educational apps on there for them.  It has become Max's currency (however he prefers apps like Angry Birds).  He will do almost anything if the reward is time with Ray's iPad.  Last night we had him going up and down the basement steps to earn his time.  He was so determined, it was cute to watch.  

Hopefully the iPad will make this easier on all of us.  It will be a fun diversion for Caroline during Max's appointments.  If I keep my calendar on it maybe we will never miss an appointment, and Max can play with it as a reward on the way home. 

Now the trick is convincing Ray that we need to have it at home every day instead of him taking it to work. :)

Saturday, February 5, 2011

Waiting Room Turned Party Room - a baby shower


I LOVE babies.  My mother said as soon as I was no longer a baby, I talked about babies.  I had a pile of baby dolls that were so real to me that I would tearfully beg my father to take good care of them when were traveling with out him. 

I used to think I would have a house full of real babies.  I planned on having four, but that plan had me starting my family at age 25 and well...life does not always work out how you plan.  I also had a funny thing happen.  As much as I adored babies and wanted them, I found the care of them to be much more draining than I ever expected.  I suppose years of baby doll play do not really prepare you for motherhood after all!

After having Max, Ray and I were pretty sure that two children were a good fit for our ages and exhaustion level.  If more were to come our way we both agreed it would be best for another woman to bear them.  We have talked about adoption on and off for years.  We even researched it before having Caroline.  We just felt drawn to it.  When Max was about 2 we started talking about it again, but Max's health was such a wild card we thought we needed to wait.  When the Haiti earthquake happened we couldn't help but think about it, and then when we got Max's final diagnosis in November it again came up.  It was like a whisper from my childhood, where are the four babies?  Usually with in 24 hours of the whisper both children act up in such a way that I felt I was receiving a divine answer to the question, and the answer was always now is NOT the time.    

So it is not my time and I am at peace with that, BUT it was time for my friend Jennifer and her family.  I clearly remember almost two years ago when they started their journey to have a second child.  It was very exciting, but it turned out to be a long wait.  Two months ago, on a Sunday morning, that wait came to an end.  Jennifer and I were standing in the hall at church when her cell phone rang.  The birth mom that had selected them was going into labor!  Later that day she got to watch as her daughter Kaitlyn was born.  How thrilling! 

Today we had a shower to honor this wonderful, and down right adorable addition to their family.  I had a fun time getting out many of Caroline's baby items to decorate the table.  Tiny shoes, a carousel music box, knit caps and beautiful vintage baby things I had been given as gifts when she was born.  I found Ray's silver baby cup and spoon and a pair of his infant shoes.  I tried to borrow Max's silver rattle.  But he said No, that rattle is not for decor in his mind, no matter how nicely I asked.  Caroline and I had a great time decorating.  I found some left over fabric from the kids baby nursery that I placed on the table.  Caroline brought out some of her baby dolls to add to the over all look. 

My friend Lori helped out so much by bringing over a lot of great food.  Ray was a prince as always and did most of the cleaning up.  I love to entertain, but really I love to decorate for a party more than anything.  I like coming up with favors and tying napkins up with cute ribbons.  I enjoy setting the table and arranging a center piece.  When I step back I can see a trend here.  My love for entertaining is similar to that little girl of long ago with her arms full of baby dolls.  It is a lot of fun to play....but the real work of either a sleepless night with an infant, or scraping plates after a party can be exhausting. 

Having this party was the perfect blend of both worlds.  I got to decorate and hold a baby, and other kind souls did the rest of the work!  It was a great day!