Ten Things I Love - in one day

1. Finding a new way to get to the hospital that avoids morning rush hour traffic.

2. A husband who races the bus to school to comfort a distraught Caroline, who often struggles on hospital mornings.

3. A neurologist that spends over an hour with us,  addressing my fears and questions before I even have a chance to say them.

4. Having the neurologist bring a genetic disease specialist in because Max's case is interesting.  And learning that interesting means that you qualify for tests that are paid for by grant money.

5. Going to a phlebotomist that Max adores so much that he races to hug him as soon as we walk in the door. 

6. Knowing what phlebotomist means (thanks mom)....I like feeling smart. 

7. Costco, how can you not love Costco?

8. Watching my soccer loving girl practice, and having her grandparents come to watch too.

9. A sweet five year old boy named James, who played with Max all through soccer practice and got him to run, run, and run some more. 

10.  That even though there were 10 things I could have written that I did not love about today, that I choose this list instead = progress. 

Up Up and Away!

Our week of ups and downs has been followed by some pretty amazing events!  The new level of carbs seems to be the magic ticket for Max!  Every day since we started the increase we have seen more and more movement and energy.

Today at Caroline's Field Day at school the principal walked up to me as Max ran around and said "you must have your hands full!"  I turned and smiled and responded, "yes, as of this week, yes, he is running, RUNNING!"  I then gave a 20 second explanation on why the fact that an almost 4 year old running is such a big deal.  Max was out of the stroller the whole time, he even joined in when he was allowed.  As the events were wrapping up two of Caroline's classmates mother's came up to me saying, "Max is running!"  I was almost in tears, yes he is running.  He is acting like a typical little boy, running, getting tackled by another little boy, laughing, running, RUNNING!

To add to this great joy Caroline had so much fun at field day and then she had her first soccer practice today, in the rain.  However, not much was going to dampen my day (even Max over turning a full potty in the back of the mini van).  Caroline has been so excited to start soccer and both kids were quite worried it would get rained out.  But I guess you play in the rain.  I also learned that soccer socks are not thigh high socks (although she looked adorable that way), they are meant to stretch down over the shin guards.  I did not put two and two together about this until practice was over, oh well.  Caroline is a soccer natural and it was fun to watch her zooming around with the ball with a huge grin on her face.  During practice Max kicked his ball, threw his ball, and ran.  He also had some very wet sand time in the the adjacent playground.  Today was very wet, very muddy but oh so very happy.

As I type this Caroline is in the bath and Max is RUNNING back and forth from me to the bath room, over and over.  Wow...please tell me today was not a dream.

 

Down, Up, Down....hopefully Up soon

A week of ups and downs!

Part 1:
We ended a long school week with Max waking up saying "I want to go to MY hos-a-bit-al!.....I want to go to My hos-a-bit-al!"  Hmm.  Am I proud that I have made the hospital fun to the best of my ability OR am I alarmed and concerned?

As I type this Max is in my lap eating his breakfast, he is tired and out of it, but my gut says he is ok.  I have been concerned that he is getting more and more lethargic.  I talked with his team the day before yesterday and got clearance to up his carbs.  He is registering a 5 with his blood ketones, the goal is a 4.  I think he is in too high of a ketosis.  I had to push a little to get this change.  They wanted to wait a few month.  No...waiting was not an option for me.  He is on day two of the higher carbs.  I hope we see him perk up soon.

Part 2:
Ray's dad is back in the hospital again and we are concerned for him.  Ray flew to California over Labor Day weekend when he was in the hospital at that time as well.  I can see the stress written all over Ray's face. 

Part 3:
Caroline got off the bus in tears twice this week.  Once because she was on a different bus with a different driver and even though all her neighborhood friends were on the bus, she just could not wrap her mind around the change.  She was worried she would not go to the right neighborhood.  The next time she lost her beloved water bottle during a bus exiting drill (something about climbing out of the back door of the bus.)  Poor thing!  But on a positive note, another little girl saw her tears  and heard about the missing water bottle, and with out a moment of hesitation grabbed her own water bottle and gave it to Caroline.  I was SO touched.  What a sweet heart.  I can't say enough about our kind neighbors and it is so wonderful to watch their thoughtful children watch out for my little girl.  Thank you Ellie!

So in keeping with trying to live in the waiting room, I tried to find some fun things this week.  For me fun often involves decorating or organizing something.  I rearranged the kitchen cabinets and I worked on a new center piece for the dinning room table.  I am quite pleased with both.  I also got to have a long chat with a beloved friend, which is always good for me.  Today I tucked a yard sale Kelly Barbie in Caroline's backpack as a surprise and I have a feeling the Mommy/Son day will be just fine as soon as I get Max distracted with a game, I would not doubt spending the morning in my lap is helping too....even if he doesn't get to go to his hos-a-bit-al. 

A Twist on Basic Parenting Advice

I have read many times that if you involve your children in the making of food they will be more likely to eat it. 

I have a twist.  If you involve your child in the preparation of his medication he will be more likely to take it.

Here is Max and his mortar and pestle.  He loves to grind up his Levocarnitine three times a day. 

I then mix it into soft butter and he happily eats his Sugar Butter.

In case anyone is wondering about the wooden contraption in the background (everyone asks when they see it)...it is called a Learning Tower.  We were given it by a friend when her children out grew it.  Both kids love it!  It allows them to be in the kitchen and a part of the action in a safe way, as opposed to sitting on the counter, like Max is doing in these photos :)

The meds are ok, so why do I not feel ok?

Update: I have talked with the pharmacy at the hospital and they assure me that there are NO carbs in the tablets we have, only the liquid form has the carbs. 

SO in many ways that is a relief since he really needs the carnitine, but at the same time....a mystery. Why did his ketones drop so suddenly?

Now I am just stumped and waiting for neurology to call me. I will have to admit this has really thrown me.  Not the medication question, but the whole need for carnitine in the first place.  His original labs were flagged that his levels were low before he even started the diet.  I only saw this when I asked for copies of his labs a little while ago, no one ever told me.  I should have asked more then, but I didn't.  When I heard how low his levels were on Thursday I felt terrible, why hadn't I asked earlier?  We could have been supplementing all this time.  I also just felt fear.  Then when his ketones started to drop I panicked.  I guess Google didn't help me too much this time.  The meds were the right ones.  I wish I knew what was happening.  I wish I didn't worry so much, sometimes it is hard to turn it off. 

I suppose it all comes down to the fact that I feel 100% responsible for his little life from beginning to end. The idea that I can't know everything and troubleshoot everything is overwhelming at times.  Often I can feel peaceful and trusting, lately this has been absent.

I feel like I need a medical degree

However...even those with the medical degree are messing up!  I am angry.  Never a good thing at 11:30 PM when there is nothing I can do about it except vent into cyberspace

ETA 9/7/10: Ok, getting very upset late at night and blaming doctors is not productive nor helpful...and it now turns out not even accurate.  Another lesson learned.


Max's ketones have fallen quite a bit in the last 24 hours.  Ray and I were stumped and concerned.  What could be causing this?  Max needs those ketones to fuel his brain.  We are a bit obsessed with ketones in our home.  We even have our own verb for it,  Ketoed - checked his urine for ketones, "have you ketoed Max today?"  Max asks us to do it and Caroline even asks us and volunteers to get the Keto Strips.


Max's ketones are low.  Nothing has changed in his diet except his now 3 times daily dose of carnitine, which was prescribed by his doctor.  The one who should know what medication to prescribe.  Well, a quick Google search tonight of the words Carnitine and Ketosis revealed that there are two forms of the prescription, one with sugar and one with out.  Guess which one we were given?  Since Max can only have 10 carbs a day sugar in medication can really cause a problem.  This is one of the most basic things you learn with these diets, be careful of medications!


I am upset.  He needs the carnitine because his levels are dangerously low.  We are given a form that might/will cause him to fall out of ketosis and it will be days until we can fix this since these kind of medication are so hard to find.  I am supposed to trust doctors to care for my child, yet I have to rely on Google repeatedly to get answers?  This is frustrating.  I suppose it could be an error of the pharmacy and not the doctor.  I should not be so quick to throw around blame, and I guess blaming won't get us anywhere anyway. 


The only hope I have is that the Children's Hospital will have some of the Sugar Free Carnitine, it will be a 2 1/2 hour drive but worth it if I can get it faster than our local pharmacy.  Sigh.  Some days the waiting room is a very hard place and a place where I get little sleep. 


I was just telling Ray yesterday that perhaps I should go to medical school.  I was kidding, but part of me was not.  We have to be the experts for Max.  Another lesson learned, check all meds.  Question everything and maybe go to pharmacy school and medical school.

How do you make a child drink unsweetened coconut milk?

You add equal parts diet root beer and let him dip pork rinds into it!

If you are lucky he will offer you a free sample (he prefers that term over sharing). 
His sister almost took him up on it but I advised her against it.

A day in the life of the Modified Atkins Diet.  You don't want to know what he ate for breakfast....

Super Moms

This summer I added a new pillar to the foundation of my support system.  That pillar is comprised of the Super Moms.  I met the Super Moms through my friend Heather, Samantha's mother.  During a play date in June she mentioned a group of women that she meets with for dinner once a month, that very night I went with her to a Super Mom dinner.  The group started from the coordinated care unit at the hospital and it slowly grew as women brought in others who they thought would benefit from the monthly dinners.  We eat, we laugh, we cry, we joke about things only someone in our shoes would find funny, and we use a lot of big medical words with out pausing to define them.  Most of us have blogs, so we get to know each other even more through the blogs and through Facebook.  I felt very bonded to my fellow Super Moms after just one dinner, especially when I saw their tear stained faces at Samantha's memorial.  Seeing each other was a comfort, a great comfort. 

Today I had a wonderful Super Mom moment.  I posted yesterday on this blog about today's trip to Children's Hospital due to Max's concerning lab results.  Deana (a Super Mom) commented on my post with some helpful information about the North Campus for the hospital.  Because of her comment I was able to find out ahead of time our lab orders were not in the system correctly and I was able to get them fixed.  I also knew who to contact today when I was told no one would have the medication Max needed, and it would take days to get it due to the holiday weekend.  Ray messaged Deana for me through Facebook and within minutes she called me at the hospital.  Deana knew where we could get the medication since her son is on the same one.  Before I knew it Max and I were headed to a pharmacy near her home to get the prescription filled!  How perfect was that?!  Thank you Deana!

Today could have been so different.  It could have been a day full of frustration and anxiety, but instead it was a great day.  I was able to go from one challenge to the next with ease.  This new pillar of support is amazing, it is SUPER amazing!

A piece of the puzzle

I have had high hopes for how the diet would effect Max's energy level and although he is sleeping less I have been puzzled by what we see as an increased weakness in him.  His teacher even commented on it today and then Children's Hospital happened to call an hour later with his lab results from last week. 


Max's carnitine levels have dropped significantly...they are low, very low.   They want to re-run his labs, I said that will be no problem since we are coming down next week.  I was told no, come tomorrow.   The doctor wants the level re-checked, plus one other level, bicarbonate, and then supplements started right away.  When I asked the risks of the low levels and was told heart failure, my own heart then skipped a beat.  However, the very nice nurse assured me that this is common with kids on the diet and not to be concerned, and that supplements three times a day should take care of everything.  But lets face it, when someone says heart failure, not being concerned is really not realistic. 


During the phone call with the hospital, and of course my mad dash to google low carnitine, Max sat happily dipping pork rinds into his diet root beer.   He is such a happy little man.  So blissfully unaware and content.  


So, we are off tomorrow for another Children's Hospital adventure while Caroline is at school.  I think we will visit the north campus to mix it up a bit, it is only 40 minutes away instead of the 70+ minutes we have to drive when we need to meet with any of the doctors.   There is also a Costco near by so it will be great to stop and buy some more bacon, butter and cream in big sizes.

Work out time!

When Max and I were down at Children's Hospital last week I had a long talk with his team about his gait.  We are seeing great progress on the diet with concentration and language and he seems to have more energy, but we are still seeing very slow progress with his movement disorder. 

They had Max run up and down the halls of the hospital without his shoes (shoes really help his gait).  His little legs look so cute, almost like a marionette when the strings pull too tight from the knees down, they sort of fly out to the sides.  Although it is cute at 3, I know it won't be cute when he is older, so I thought we should talk more about it. 

The next move is leg braces.  Cool!  He will think he is a robot.  I think this will go well.  I was able to get an appointment next week which is a relief (I am used to waiting a long time for appointments).  I want to get him moving more outside while the weather is still mild.

However we are VERY prepared should we get a cold snap!  Look what I found at a yard sale!  Last year his OT rigged up an old tricycle over a pole to create a stationary bike for him at school.  I thought that was so creative and I wanted something for our house.  I could not be more thrilled to find this little bike, just his size and ready to go, no rigging up needed.  It was only $2!  I was lucky to pick up a scooter for Caroline so both kids could have some new equipment (I have learn since the caterpillar incident) 

Max loves his new exercise bike and quickly asked for a cup holder, guess what?!  Mommy got a brand new cup holder at the yard sale too!  He was so excited for the bike that he insisted we drive it over to his Nana's house to show it off.

He will have a bit of a learning curve on the bike.  This has been an area where he has always struggled and it is on his IEP for him to learn to ride a tricycle.  In the spring, when we were working with a private OT, I had to fight back some emotion as I watched him press down on his legs with his hands while attempting to ride a tricycle.  He could not get his brain to talk to his legs.  He has made some improvement since then, but when he tried out the stationary bike I had to sit on the floor in front of him holding his feet on the peddles.  I am going to look into toe clips for the bike to help him out more.  I wonder if the new leg braces will make it easier as well? 

It was great to see both kids so excited about their new equipment.  Caroline wants to decorate her scooter.  Ribbons and stickers are being gathered.  I anticipate quite a transformation!