Monday, August 28, 2017

Buzzy bee review

To be precise, we got the Buzzy Ladybug (LadyBuzz), but other than the paint, the premise is the same; put a cute vibrating toy insect with ice pack 'wings' on the arm above the injection or blood draw site, and you won't notice the pain so much.  We have been putting off our biannual blood draws since coming to Germany (for 18 months!  Ouch! Bad parents! But we weren't getting along with our pediatrician, who was refusing to send us to a geneticist or lipidologist, so we were feeling very unmotivated...) and so today was our first time to try it out!  Monica did really well with it.  For the first time in years she wasn't screaming and kicking at me, struggling to get away, which is nice!  I often think these blood draws are harder on me and Dad than they are on the girls.  She did well with watching the ipad instead of watching the needle going in, and I don't think she hardly noticed pain. She still gets a little traumatized by the bandage itself - they always seem to do the gauze pad and coban rather than just a band aid, probably to decrease bruising - but I can also see that it looks like more of a 'serious' bandage, showing that something seriously bad happened to her. Perception affects reality!  She even stuck around watching from the hall to see Teresa get her blood drawn, which was significantly more traumatizing for everyone involved (three pokes and still not enough blood!)

I tried to make the Buzzy Ladybug more approachable and familiar by letting Teresa play with it a week before the day of the blood draw.  She apparently whacked it a little too much in her enthusiastic investigation, however, because now you have to whack it again to turn it on.  Actually, trying to turn it on again right now, it's not working at all... this gadget may have been single use for us!  For $40, yikes...  So maybe let them examine it before the day of the blood draw, but not walk off with it.  It's a good concept and, for parents looking for literally anything to make these blood draws less traumatizing, it seems a good investment.  Even if it's 'just' a distraction and doesn't actually take the pain away, what's the difference?  When no end of toys, movies, video games, singing, or conversation can distract your child during a blood draw, but a fancy ice pack and a buzzing gadget actually DOES work at keeping their attention?


Tuesday, August 22, 2017

Don't order (or let your doctor order) more than you can chew

Not her expression at blood draw time
I adore lab personnel that can draw blood on my daughters' tiny arms.
Having attempted many a blood draw and IV myself, and failing innumerable times on the healthiest and plumpest of veins, I am always willing to wait for the best 'peds stick' to come back from lunch or wherever he or she has gone.  That being said, wonderful as they are, keep in mind that lab personnel generally have no idea why they are drawing the labs that they are drawing.  This morning my 2 year old, fasting and grumpy, went in for her blood to be drawn, and when they chose which tube to fill with the most blood, they chose the tube that
had to be sent to another facility for evaluation of her fatty acids and fat
soluble vitamins.  It makes sense to some extent - those labs will take
longer to get back, so if we are going to repeat a blood draw, might as well
repeat the one that we can just get the results of in our own facility!  The
thing is, I don't really care about her fatty acids and fat soluble
vitamins.  All right, if we already have the blood, I don't mind checking
it.  But the lipid panel and triglycerides are all I REALLY care about,
especially since she's fasting!  Fatty acid and fat soluble vitamin panels
don't require fasting!  If the lab personnel had asked us (but what do
parents know?) we would have emphatically explained that the lipid panel was far more important than any other lab.  I bet they've never faced the wrath of a fasting 2 year old and haven't thought about it much.  But I have.  And now I am trying to come to terms with bringing my baby girl back to that same horrifying lab next week, to repeat a fasting lab draw.  It's sure to imprint itself on her memory in a special way, such that she won't be able to even see the lab in the future without starting to cry and scream.  Sigh.

Other tips for blood draws on little ones:
-always ask for pediatric sized tubes.  It's pathetic to see the little baby drops of blood in a giant grown-up sized tube, and it's unnecessary for many labs to have that much blood.
-warn the technicians, especially if they run the lab in the facility, to expect a highly lipemic (read: greasy) sample.  They might have to do fancy dilutions to figure out how many triglycerides are really in the sample, because the TGs of many folks with LPLD are literally off the chart.
-our typical supplies for blood draws include: ipad or portable DVD player, new toys (or ones hidden months ago and taken out as a surprise), water, granola bar for immediate post-draw calories, candy for just in case bribes.

How do you survive blood draws?

Thursday, August 3, 2017

Independence Day Fruit Pizza

When it comes to making a crowd pleaser that I don't have to feel too guilty about health-wise, this fruit pizza is one of my favorite recipes.  All whole wheat crust, with probiotic-rich yogurt and cream cheese topping, and fruit on top?  It's hardly a dessert!

This was my first time making a fat free version and it was a great success that I wanted to share with you.  For my non-LPLD family members, I made a half batch following the recipe.  Then I made a few modifications and made a second half batch fat free!  Instead of butter, I used apple sauce - the crust was definitely sweeter from the sweetness of the apples (I might leave out any sugar next time), but it was thin and crisp after baking and an excellent base for the rest!

Keeping track of which half was which, I baked it following the recipe, and after it cooled I put regular cream cheese and yogurt on the fatty half, and fat free cream cheese with fat free yogurt on the LPLD side.  Then I loaded it all down with fruit (the blueberries are on the LPLD side, if you're wondering) and brought it to our 4th of July picnic.

The adults enjoyed it and the kids gobbled it up, both sides of it!  Wild success!

Tuesday, May 23, 2017

Continuous Grief of Chronic Disease

Lovely! Inside and out!
I am again surprised by LPLD.  Every one in a while, it just seems to sneak up and hit me hard!  I continue to find more ways that it impacts me emotionally.  Even just as the mom of lovely girls with LPLD, not as someone with LPLD myself!

She's 2!!
I was talking with a young man over a year ago who was wanting to be tested for a genetic disease.  His wife came from a heritage that was known to be more likely to carry this particular genetic disease, and he was sure that if there was any chance whatsoever of their offspring having that disease, then he would just never have children.  Having two girls with a genetic disease, especially having knowingly pursued pregnancy even after my eldest was diagnosed, his statement hit me hard.  Harder than I would have expected.  This young man didn't know anything about my family, and so wasn't trying to be hurtful, but man did it hurt.  I was shocked at the strength of my emotion and had to get away from him to shed a few tears and recover my equilibrium.  It wasn't my job to convince him that life is worth living, even with a genetic disease.  That there are far worse things out there.  That having my children has made me a better person, far more than anything else ever has, crazy low fat diet and insane worries about stomach pains notwithstanding.  That it's worth it to have a baby even if you know your baby won't be perfect.  Because, after all, NO baby, no person, is perfect anyway.  And to think we are in control of our lives, our children's' lives, or really anything at all, is just silly.  I could get involved in a terrible car accident this afternoon and never move my arms or legs ever again.  Or I could lose my capacity to think clearly and do my job.  In the face of psychiatric illness, not even my thoughts and perceptions of reality are really under my control.  My thoughts got pretty existential pretty fast, all from a newlywed sharing his thoughts on having children.
Note the 'I love you' sign.  Sigh :)

More recently, I happened to visit with a beautiful young girl, just my daughter's age.  Now, Monica is perfect in every way to me, but talking with this other 7 year old, I reflected on how LPLD may have made her a little shorter, a little more scrawny, than she might be otherwise.  And again, unexpectedly, my heart just broke.  This is what my lovely girl should look like, and it's not fair that she doesn't.  It's not fair that she can eat an entire (cheeseless) pizza and still be hungry.  It's not fair that we walk into an unexpected celebration and she sees the beautiful spread of sugar cookies, and she pulls me aside and asks that no one in our family eat a cookie, since she can't.  It's not fair that she has to eat more snacks and bigger meals, since a whole healthy food group is shut out to her, and some days it's so hard to think of something interesting to eat that won't make her sick!
7 years old!

Finally, Monica's 7th birthday was just over a week ago.  We were visiting my parents that week, and we called literally every bakery in their city.  No one was willing or able to make a fat free cake for us, and Monica had requested a cake that looked like the cakes other kids had for their birthdays - frosting that is smooth and perfect, edged in a way that I just can't seem to pull off, with a screen print on top that I certainly don't have the supplies to do.  She wanted a store bought cake rather than home made.  Preferably with a print of Frozen on top, iced in blue.  We called and called.  We visited store after store.  Who knows what the employees were thinking, I'm sure some were rolling their eyes at the idea of someone who wants to eat cake and not gain weight, 'have their cake and eat it too, ' as it were.  I'm sure they weren't stretching their imaginations to figure out a way to help a little girl have a birthday cake like everyone else.  The happy ending is that we finally found a small bakery who pulled it off.  The result was both fabulous and heart breaking for me: perfect sugary smooth frosting (without any of that rich buttery satisfaction of flavor)!  Two layers of chocolate cake that was light and fluffy (and honestly rather bland and dry)!  A chocolate creamy layer between (of fat free pudding, pretty blah if you compare it with a mousse)!  And of course an image of Elsa and Anna printed on top (perfection!!)!!  It was a wild success, and even the other kids ate pieces, but I had to stand in the kitchen crying for a little bit.  

It. Was. Perfect.

This is not what I want for my little girls.  I want to make them buttery and rich cakes at home, or roll my eyes and buy them the stupid store bought ice cream cake covered with crisco-y icing.  There is a certain fakey sugariness about so much of the treats Monica has to enjoy, missing the richness that I wish could be there instead.  It's hard that I can't give her everything.  But it's also a reminder that the empty fakey sugariness is the truth of our worldly desires - I'm not a perfect mom, I can't love her in a perfect way, I can't be everything she needs.  Monica needs to encounter the emptiness of life and seek Someone who really can fill her every desire.  This life is imperfect and empty for everyone, no matter what images are on their Facebook page, how joyful and healthy they seem in a chance encounter, or how Pinterest perfect their birthday party.  LPLD isn't the real problem here, this is life.  What I really want for my little girls is Heaven.