Wednesday, February 26, 2014

The January and February Marathon

This is my first blog post of 2014 and the fact that it is almost March is very telling.  The end is in sight!  We are almost to longer days and already there is more sunshine.  As much as I try to live in the moment and find joy in each day, I struggle during this time of year.  The short days, low light, and lack of fun holidays to distract me from the cold weather wear on me.  And like most of the country this year, it has been COLD.  We have had our windows freeze on the inside, our front door freeze shut, and the beloved cottage has been on the wrong side of a large snow drift until just a weeks ago.

I wish I could feel the love for January and February...
but I can appreciate it in ice castle form

Last year I vowed to get out of town for the better part of February.  It didn't work out like I had hoped, but we did manage two week long trips.  In January we headed south from the cold to sunny San Diego.  It was our second annual "friend trip" with Esther and Craig and their boys.  Last year we went to Minnesota, and as enjoyable as that trip was, San Diego was a perfect choice for January! 

We went back to LEGOLAND.  I am not sure if I will ever tire of that place.  The creativity of the Lego designers is amazing.  LEGOLAND has opened a new hotel and we decided to stay there.  For anyone planning a trip, I highly recommend doing this.  I would say it took the fun factor up by 50%, if not more.  The elevator alone is worth the stay.  When you get in you hear elevator music, but as soon as the doors close a disco ball turns on and disco music plays.  We had a dance party on every ride!  Most other families did this as well, however a few looked at us as if we had lost our minds!  Each floor has different themed rooms.  We were on the pirate floor.  The kids had their own bunk beds and every where you turned were fun Lego details.  There was a safe in the room and the kids had to follow a treasure hunt to get the combination.  When they opened it there were mini figures in there for them! 

Note Caroline's adorable new glasses!

A very squinty picture of all of us!  Love that sunshine!

After LEGOLAND we went to see Ray's father's grave.  It was one of those perfectly odd moments in life, Ray knelt to pray and reflect, Caroline followed suit, all the while Max stood there loudly asking questions about coffins and body decomposition.  I snapped a quick photo and led Max away to give Ray some peace.  We then went to visit Ray's mother.  Sadly, she was quite sick with a cold.

After a day of relaxing at Ray's mom's house, we met back up with Craig and Esther to visit Sea World.  It was a fabulous day.  There were no crowds and we saw lots of shows, rode on rides and even had a very special lunch with Shamu!  Caroline has now altered her career aspirations to include being an Orca trainer.

I have never been quite so close to an Orca before!  It was quite a lunch!

Our next trip was without Ray.  We headed west to Utah, it was not a warm get away spot, but it was a heart warming getaway!  Our friends there have become our family and we always come home refreshed and well loved. The kids were beyond excited to see their precious Auntie Caroline.  We were there to see her son Keaton in the play How to Succeed in Business with out Really Trying.  He was amazing!  The kids adore him and his brother Dane.  We also got to spend a lot of time with our sweet friend Karen, who lives two doors down.  Her grandson and Max are great buddies and Caroline bonded with another girl in the neighborhood, spending quite a few days with her at different activities.  Karen has a wonderful craft room that entertained us for days.  And then their was Tim's cooking...a reason to drive to Utah all on its own! 

We LOVE visiting the Salt Lake Children's Museum. 
I think they did not let go of Utah Caroline's hands the whole time!

After the museum we met up with UC's nieces and made Valentine's cookies!

One of Keaton's lines in the play was "they call me Mr. Money Bags." 
So Caroline and her friend helped Utah Caroline make him a Money Bag as gift!

The girls were so proud of Keaton and their Money Bag creation!
Max hero worships Keaton and for years insisted his name was Max Keaton.

After reading on a friends blog about the Midway Ice Castles, we decided that we would go there on our way home.  Since I have two Disney Frozen obsessed children, it was the perfect spot to visit.  The kids brought their Disney toys and became quite an attraction unto themselves, many people stopped to photograph their toys!  Caroline said she felt like she was a celebrity.  Max thought the ice castles were incredible.  He climbed and crawled and explored, it is always wonderful to watch him "on the move".  It was the last day the Ice Castles were open and it was SO crowded, but we had a fabulous time.  It was the perfect end to a great getaway.

Thanks to UC for these amazing photos!

We came back to Colorado to find all the snow and ice thawed!  I think the wind blew it all away.  The wind has been beyond description!  On our drive back I actually got a blister on my hand from struggling against the tug of the steering wheel.  There were 50-70 mile an hour gusts on both legs of our drive. 

The wind is still blowing, but the sun is shining and I know Spring will be here before we know it.  I look back at my two least favorite months with fond memories.  I suppose this is the way to do it, I can't create more sun, but I can find some "bright" friends and family to visit and some beauty in the ice!

Monday, December 30, 2013

The Blur...AKA November and December

I am not sure I can remember a time when 60 days went by in such a blur.  November is always busy with both children's birthdays and Thanksgiving and December I think flies by for most people, but this year was one for the record books.  Not only with how quickly it went by, but the extreme highs and lows our family experienced in just two short months.

November started out with the usual excitement of Caroline's birthday.  For the first time we did not have a party at home.  Since Caroline was hoping for a large present from the American Girl store we told her that any party would be small and low key.  She requested a trip to the Butterfly Pavilion with two friends, two cousins and one brother.  Deal!  It was a fun day and although I didn't get to hang anything from the chandelier or decorate the house, I was able to slip a few crafty elements into the day.

My little girl is nine!

The kids spent most of the time like this, hoping and hoping
a butterfly would land on them.

Max was one of the lucky ones!

On the heals of Caroline's birthday, Ray and I had a large surprise for the whole family.  We both have a habit of talking about something for years, never acting and then, boom, in a split second we make a major decision.  Left alone for a date weekend with plans to go out to eat and a trip downtown to the art museum...we ended up buying an RV!  This has been a life long dream of Ray's and one I have stalled on for years.  I always said that an RV would be my life, only smaller, and how would that feel like a vacation? But that was before children and special diets and travel goals to see all 50 states.  We both assumed an RV would not be in our budget either...but then we saw a used RV and the wheels started to turn and with in a day we were the proud owners of an 18 year old, much loved, much driven, 32 foot motor home!  We kept it a secret until we were able to take delivery of it and then we surprised my folks, the kids and my nieces all at the same time.  It was awesome on so many levels.  Ray has made so many of my dreams come true, it was really special to have his dream become mine too and for it to happen.  

She may be old and faded, but she is ours!

One of Ray's secret wishes with a motor home was the idea of driving his father up to Sacramento in it.  His dad had been in poor health for so long and the family had begun discussions of both his parents moving to Sacramento to be closer to Ray's sister.  With his dad often in and out of the hospital, we were not sure he could fly, the RV would be a way to get him there comfortably.  Sadly, with in days of us getting the RV, Ray's father had a stroke.  Two days later Ray was at his bedside saying goodbye.  It was such a tough time and so very sad. Caroline cried and cried when I told her and Max, unsure of how to react chose to recite the 23rd psalm to anyone who would listen.  He had just committed it to memory and his little logical brain though this would be the best thing to say.  He didn't know that Ray had read that very psalm to his father with in hours of his final breath.  Ray stayed out in California for a few days and then came home to us, so we could all fly out for the funeral together.  Although it was a tough time for everyone, there were bright spots during our time in San Diego.  The kids got to spend time with their beloved cousins Rebecca and Steven.  They played their hearts out, as only children can with out a firm grasp of death and loss.  It was a balm to all of us to watch them together.  Another highlight was seeing Ray's cousins.  We rarely get to see them, as we are all scattered about the country, but those girls wasted no time getting to San Diego to honor their uncle and to cheer us all with their smiles and quick wits.  I don't think I have ever met a group of four sisters who can joke and laugh like they can, something we all needed.

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We arrived home at 4AM due to plane delays.  Max could barely walk or stand.  

Right in the middle of the passing of Ray's dad and the funeral was Max's birthday.  He had only one request after last year's not so smooth karate birthday party.  He wanted a family party, only his parents, grandparents, cousins and sister were allowed and it had to be at Chuck E Cheese.  He wanted a full party with 4 kids and 4 adults and he really didn't understand why it had to wait.  So in the few days that Ray was home before we all left for the funeral, we went to Chuck E Cheese.  Although I had little desire to be there (Chuck E Cheese is rarely on any adults top 10 list), and none of us were really in the mood for a party, it was great fun watching Max have fun.  It was equally touching to watch Ray dutifully play "air" guitar along with Chuck E Cheese and Max, knowing full well that he had so much on his mind and heart.  We lost a great man in Ray's dad, but I see him live on in Ray.  I hope Max will follow in the footsteps of men who delight in their children.  That is one thing I will always remember about Ray's father, he was just so proud, interested and engaged with his kids and grand kids.

We came home from the funeral to Thanksgiving and then the rush of getting ready for Christmas.  This year Caroline danced in the Nutcracker.  Having a part in the ballet was really a family affair with how much she had to practice.  And with the worst timing ever, I came down with flu during her tech week.  She had to be two towns away every night to rehearse on stage.  This was not a grab some tissues and get on with life kind of flu either.  It was a lay in bed, not sure what day is it, and did anyone remember to feed Max, kind of flu.  With the help Mom, Jim and Ray we all made it through the week and I was just well enough to make it to the performance.  Oh the joy, she was so adorable and thrilled to be in two shows of the ballet.  She was the sweetest little mouse up there and is already planning for next years show. 

Sadly this was the ONLY picture taken.  Ray was able to snap it on her way
to the dressing room during rehearsal one night.

Although I was over the worst of it, Christmas looked like this for me.  

And to compound things my mother got the bug too.  But not from me, I am sure of it!  So there was no Christmas eve dinner at our house, no Christmas day party at her house.  Everyone just stayed in their PJs.  We did welcome Jim to our house Christmas night for dinner, he decided we were the least germ ridden and had better food than my poor mother.

So there you have it.  Two months that were filled with highs and lows, birthdays, ballets and flu bugs.  As we close out this year I couldn't be more thankful for my family.  A line in a book I read recently really sums it up....Your cup of joy can only be as deep as your cup of sorrow.  It is so true.  The sad and tough parts of life are never welcomed, but they are the counter point to the joy and in many ways what makes the joy so rich.  

So we continue to try to live each day to the fullest and to choose joy at every turn.  I look forward to 2014.

Wednesday, October 30, 2013

Blood, Oil and Butter - the complex brain of our son

I keep thinking that after 3 years of Max being on the Keto Diet (Mod Atkins) that we would "have it down."  I often beat myself up over the fact that we so clearly don't.  But I think I am finally making peace with the concept that we are working with a moving target, tweaks and changes to the diet are just part of life and mistakes do happen.

A few months ago we got the chance to go to a special Ketogenic Diet program put on by the hospital.  Families were invited to come and meet each other and to try all the tasty (I jest) new Keto recipes and foods available.  I was very excited to attend and so was Max. I was so touched by his reaction when we entered the conference room.  His little eyes grew big and round, he asked over and over, "all these foods are for me?  I can eat anything?!?"  After repeated reassurance, I let him loose.  He worked the room.  Talking with any child or adult that would chat with him.  He tried every food, often twice.  An extremely special part of the evening was when we met another Glut 1 family for the first time.  It is hard to put into words, but it was like meeting a long lost relative.  Glut 1 kids are often described as having an abundance of charm, and sweet Miss P had it in spades.  She had a great receptive vocabulary, but was limited in her speech.  That did not matter a bit.  She was joking with us and carrying on.  

Another benefit to the Keto diet evening was the chance to talk with other neuro nurses and dietitians.  No sooner had we walked in when our regular dietitian said that she had been meaning to call us, Max's ketones were low...again.  I used the evening as a chance to get some more advice from a different set of experts.  One nurse was very surprised to hear that we did not monitor his blood ketone levels at home.  She said all of her diet families did this.  I had heard of this, but our team had never recommended it.  I checked back with them and they agreed it was time to give it a try, especially since we have had a hard time with his ketone levels for about 5 months.  Then came a KEY piece of information,  a nurse I had never met over heard me saying we had removed Ketocal from Max's diet.  She asked what fat we replaced it with.  ??  Well, we had tried the MTC oil, but stopped that.  I then was informed that the Ketocal drink box had over 36 grams of fat per serving!  How did this slip through the cracks?! It all fit together, the weight loss, the low ketones.  

Once home we got right to work fixing this quite significant error in his diet plan.  Back came the Ketocal, back came oil (just not MTC), more butter was added.  I ordered a home blood monitoring kit and the drama of family blood letting began :)  Oh the drama.  Max was non too keen on this plan.  Caroline, of course, was inthralled.  I have a whole new appreciation and sympathy for families with diabetic children.  Pricking a child's finger is not as easy as I would have thought.  Especially when they run away from you.  Somehow I managed to prick my own hand numerous times and was surprised at the volume of blood a good prick can produce.  

Slowly Max began to gain weight, but his ketones were still quite erratic.  We got orders to do the blood draws every day for a week.  We were asked to record all foods and try different combinations each day, oil, drink box, powder, different amounts of food at different times.  This was the same week as the floods, which only added to the drama of that week, but at the same time it did provide a distraction.  The results were very informative.  Timing of the food was the key, not the kind of fat involved (he just needed a certain amount of fat).  Oil verses Ketocal did not matter, but if we ended the day with 3-4 carbs left over (he only gets 10 carbs a day) and then gave him that food in the evening, his ketones were always very low.  If we fed him every 3 hours and made sure he finished dinner with only 1 carb left for a bed time snack we got amazing ketones.   

Dare we say we have finally found the magic formula...three years later...have we found it?  I won't be naive enough to think that, but I think we are closer than we have ever been to feeding Max's brain the right way.  AND we have the proof, powerful proof.  As I have written about before, Max began to exhibit OCD like symptoms centered around being clean.  It began almost over night in January.  We now look back and it is all so clear, it started not long after the removal of the ketocal and failure of the MTC oil.  When we stopped the oil we failed to replace it with another fat.  This left Max with a fat deficit of 36 grams a day, no wonder he was losing weight.  And since burning fat creates the ketones that fuel his brain, no wonder we were seeing neurological consequences.  This was very sobering and guilt inducing.  Max was really suffering.  I didn't write about it too much, mainly because it scared me.  He was so obsessed with fears about being greasy that we were often devoting at least 5 minutes of every hour to discussions of his fears.  I got calls from his homeschool enrichment teachers, we heard from his Sunday school teachers...everyone could see that something was wrong.  His team at Children's didn't realize the deficit in fat and suggested a psych eval.  Then with one butter and cream laden keto diet evening we got the clues to solved the mystery!  I am beyond pleased to report that with his weight gain and stable ketones the OCD symptoms have disappeared.  In fact, I can't even remember the last time he asked me if he was clean (okay, he did ask after a goat ate food from his hand last week, but who wouldn't?) and that is just stunning when I think back to how our lives revolved around his fears for so many months.  

Who wouldn't want to wash up after this?
Max's movement disorder has also seen significant improvement, perhaps the biggest to date.  The long elusive goal of him going up the stairs foot over foot is finally being realized.  He has also had a huge jump in his confidence.  A month ago, while at the pool, he asked to go down the water slide.  I was floored.  It was a long shoot, very fast, and I was not sure he could even get out of the trough unassisted.  I watched him zoom down the slide and hop right out.  Then to my complete disbelief he took off back towards the slide, and went up the staircase foot over foot, as if he had been doing it for years.  It was one of those moments that I will never forget and the sheer full body, smiling so hard it hurt, JOY that came from watching him is a gift I am so thankful for.

We have learned a very big lesson this fall, fat is gold, don't mess with fat.  Now with oil, Ketocal and the home blood tests, our sweet boy has been released from his greasy fears and thriving once again.  Glut 1 is a roller coaster!  The dips on the ride can be pretty scary and can last longer than I would wish, but the highs, oh the highs are amazing and so sweet.  As Max approaches his 7th birthday I have never seen him so healthy and I have never felt so full of hope.