tag:blogger.com,1999:blog-84001405947623512012024-03-20T19:38:06.707+00:00Too Sweet Girl in GhanaThis is the story of our American-born daughter, Alexandra, a precocious 10-year old, who was diagnosed in June 2008, at the age of 7, with Type 1 Diabetes. Unremarkable, in and of itself, but we live in Ghana, West Africa. If we thought it was a challenge living in a developing country before diagnosis, believe me, we ain't seen nothing yet.Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.comBlogger43125tag:blogger.com,1999:blog-8400140594762351201.post-50868346712906936702013-11-15T15:06:00.001+00:002013-11-15T15:06:18.680+00:00World Diabetes Day: The Day When Bush Doctors aka Quacks Also Get their Say<!--[if gte mso 9]><xml>
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Yesterday was World Diabetes Day, and I “celebrated” it as I
have done now for five consecutive World Diabetes Days much as I have always
done, i.e. by waking up and checking Alexandra’s blood sugars. On this
particular day (night) she was 53 at just after midnight. Not only <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">not</i></b>
a good number for sleeping but downright dangerous so I shook her awake and sat
her up and gave her three glucose tabs to chew up. About 15 minutes later she
was still only at 60 so we followed the tabs with a couple of marshmallows
(obviously, our house was juiceless since that is the go-to for a low but a mom
does what she has to). But I digress. After her blood sugar crept up
sufficiently I went back to sleep, but woke up twice more before my regular
5:00 am alarm to double check. You know diabetes is such a frigging insidious
disease that we don’t play with it because it just doesn’t play fair.</div>
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The world was ablaze with pictures of buildings, monuments
and skyscrapers awash in blue in honor of World Diabetes Day and there were
plenty of new profile pictures on Facebook – pictures of hands with the word
“hope” written, moms and dads and kids dressed in blue in support of all of the
world’s diabetics. This was my profile pic on Facebook. And I wore my “CURE” tee shirt from the Diabetes Research
Institute. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeI7vmOO00DoQA3JBjcuDEbdxQYwh_B7tVM11RFsLMXpLfqgT8ijEpUvH1Ytu9REkgNLAF_3fH5UQ4IGyW4RP3zRgbsYQbiigXQLjFkmI6WEyjEP5794FX6UHHqyjEpgFoYelebaE_aAun/s1600/diabetes+day+hope.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeI7vmOO00DoQA3JBjcuDEbdxQYwh_B7tVM11RFsLMXpLfqgT8ijEpUvH1Ytu9REkgNLAF_3fH5UQ4IGyW4RP3zRgbsYQbiigXQLjFkmI6WEyjEP5794FX6UHHqyjEpgFoYelebaE_aAun/s1600/diabetes+day+hope.JPG" /></a></div>
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Ghana is
holding a 2-day long Diabetes Fair in Kumasi (though I
wished it was in Accra
because I would have attended) and I expected that that might be the end of the
media attention. However, I was to be pleasantly surprised; I was traveling in
a taxi to the grocery story and the driver had on a local radio station. Now
what was being discussed was not clear to me since it was a tribal language and
I unfortunately know very few words (well, I do know quite a few insults, like
I know how to say you’re a fool, or ask if you’re crazy but that’s doesn’t get
you very far). Anyway, the radio was playing and the commentator was talking
when all of a sudden I heard these words… Canadian, Nobel Prize, Banting and
insulin! Now I knew what they were talking about and it warmed my heart in a
kind of bittersweet way. </div>
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Information, the right kind, was being spread. It was nice.</div>
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Then I got home and Googled Ghana and diabetes as I
occasionally do and came upon an article written on Ghanaweb about pledging to
take steps to fight diabetes. All in all it was a well written piece but as
usual it failed to differentiate between type 1 diabetes and type 2 diabetes.
Naturally, I was miffed, so I shot off a hurried comment about how it would
have been nice if this medical professional could have explained how type 1 was
an autoimmune disease, not preventable and currently without a cure. I said
that he was perpetuating the misinformation that we are constantly living with,
that my daughter’s diabetes was preventable and curable, and that lifestyle
changes would be sufficient.</div>
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In his defense, the article’s author, Dr. Kojo Cobba Essel,
replied to my comment and apologized, but that due to word constraints he
couldn’t elaborate. He said he hoped to write another article specifically on
type 1 diabetes. Then he also acknowledged my pain. Wow. That more than
anything lifted my heart.</div>
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<br /></div>
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Unfortunately, there is also the response of another
“doctor” though I believe that that is merely what he calls himself, as in
“Bush Doctor.” And he had an awful lot to say, about how I could have prevented
my daughter’s type 1 diabetes and how I could cure it with dietary changes,
such as Moringa powder, flaxseed, aloe vera, tiger nut milk, avocado, etc. </div>
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Apparently you toss it all into a nice clean blender, whiz
it around for a bit and in minutes you’ve got the cure for type 1 diabetes.</div>
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Now, why didn’t I know that?!</div>
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Of course, I couldn’t let that go. My response was he would
basically have me kill my daughter if I gave her only that and that the only
thing keeping her alive is insulin, the gift of Dr. Frederick Banting whose
birthday we celebrated yesterday during World Diabetes Day.</div>
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There were some other things I said and he responded in
kind.</div>
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It was all kind of funny until I realized that some people
here in Ghana
might read this and think it’s for real. Some people who are type 1 diabetics
themselves, or have children or loved ones that they care for. They might
actually lay down their Lantus pens and put away their syringes filled with
Mixtard or Humalog or NPH or whatever it is that the “real” MDs
here are now prescribing. I’m truly afraid that they might actually believe him.</div>
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So I sicced the DOC on him. </div>
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The DOC, the Diabetes Online Community, my friends.</div>
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Well, I don’t have to tell you what transpired because you
can read it for yourself <a href="http://www.ghanaweb.com/GhanaHomePage/health/artikel.php?ID=291932">here</a>.
And if you have a mind, please feel free to offer your thoughts and comments to
the good “Bush Doctor.” </div>
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Oh, and if anyone was wondering….</div>
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Wo Nim Se Wo Ye Kwasea Paaa!<span style="mso-tab-count: 2;"> </span>You
know you are a real fool!</div>
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W’abo Dam!<span style="mso-tab-count: 5;"> </span>You
are mad!</div>
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Wa Gimi Paa!<span style="mso-tab-count: 5;"> </span>You
are very stupid!</div>
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Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com2tag:blogger.com,1999:blog-8400140594762351201.post-82017679957632976292012-10-26T10:12:00.000+00:002012-10-26T12:32:39.763+00:00Growing Up Right<!--[if gte mso 9]><xml>
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After four plus years of playing the role of
pancreas-by-proxy for my daughter Alexandra, I thought I’d seen it all but I
was in for a surprise. My friends on Facebook know what I’m talking about;
they’ve seen my many laments about insanely crazy overnight high blood sugars
that refuse to fall in line despite a quart of insulin. I’d have better luck
just saturating the mattress with her Humalog and hoping that osmosis will do
the trick. It’s puberty. I guess my baby can’t stay my baby forever.</div>
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Other parents with daughters of a certain age I am sure
share with me that bittersweet moment when they realize that their baby is
growing up. For them I’m sure it’s the first few subtle signs –hair where there
used to be none, the newfound need for a size 28AAA bra to cover tiny bumps,
the promise of long, lithe limbs which are just now at the awkward, gangly
stage.<span style="mso-spacerun: yes;"> </span>We won’t even go into the
attitude adjustment now that Alex is a pre-pubescent tween.</div>
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It’s apparently a lot of work to grow up, and the body is a
magical thing. I think I would find it much more magical if I weren’t too
keenly aware of how hard it is. I want to be awed by the magic, damn it, not exhausted by it. </div>
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<br /></div>
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But parents of daughters (and sons to a slightly lesser
extent) with type 1 diabetes who are going through puberty know first hand how
hard the body is working to mature our child, to make them ready for adulthood
and to eventually procreate (oh God did I just write that?!). We parents of T1
kids see it in elevated blood sugars, a side effect of the growth hormones
which makes blood glucose much more resistant to insulin. I’ve had nights where
I couldn’t budge Alex’s sugar out of the high 300s and even 10 units of insulin
(quite a lot for a 75 lb girl) didn’t ever bring her blood sugars in range. </div>
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<br /></div>
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Only daybreak did. You know that very typical remark about
growing kids? Goes something like this, “My goodness! It looks like you’ve shot
up over night!” It’s true. It does happen overnight, and it can be overnight
for three or four nights in a row. That’s three or four nights when I’m losing
sleep and up every three hours re-checking and bolusing and dwelling on how
much worse it would be if I didn’t do these things. I can’t even begin to
imagine what Alex’s A1C is going to be – I might just forego doing the A1C
until she’s 18 or so.</div>
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<br /></div>
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What’s most frustrating is that the first night you get
those high numbers you wonder if it couldn’t be food related or perhaps an
illness coming on, so you just do your normal thing and hope for the best. Then
the second night you think to yourself, okay it must be puberty so maybe what
I’ll do tomorrow is run a temp basal. That seems to work for day 3 and you’re
content because you’ve been able to keep her sugars down a bit (still not ideal
but 180 is way better than 380!) though now you’re up every two hours checking
just to be sure. And then on day 4 your 2:00 am check finds a low. Oops and
ugh. Guess this growing body is taking a breather.</div>
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Then a week or two later it starts all over again.</div>
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It’s maddening.</div>
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So let me tell you about our summer. It was wonderful. We
went to N.J. for the month of August to see our family, and stayed in a lovely
little cabin just near Six Flags. We had bought season passes for a ridiculous
amount of money but certainly got our money’s worth since we were there nearly
every day for a few hours. </div>
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Now, I like amusement parks and in my younger days when Six
Flags was just Great Adventure I did all the rides including the roller
coasters like Lightening Loops and Rolling Thunder. Well Lightening Loops is long
gone though Rolling Thunder still hanging in. But the park’s main attractions
are the big boys, Superman – the Ride, Batman the Dark Knight, Bizarro, Nitro,
El Toro and of course, the king of all roller coasters in the whole wide world,
Kingda Ka.</div>
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I am no coward but neither am I a nut. </div>
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But I am a parent and before I’d let my 11-year old daughter
go on any of these rides I had to “test” them out first. Maybe I am a nut after
all. But I wanted to see how they were, and assess whether or not I thought my daughter
could handle them. In the end I got up the nerve to ride them all except Nitro (I absolutely must have shoulder harnesses to hold onto!) and Kingda Ka (just no and after I saw the picture of my two sons riding it the answer is still no, and that goes for Alex, too). </div>
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The rides can be scary for any kid but the adrenaline rush
for a type 1 kid could really mess up a blood sugar – in either direction.</div>
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My husband and I tried our hardest to be crazy careful; we
checked her blood sugar before she went on a ride, we made her carry glucose
tabs in her pocket or the pocket of whomever was with her. There was always a
soda or a juice box waiting. But still we made mistakes, all of us. </div>
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The first time was when Alex was riding on El
Toro with her brothers and cousin; it was night time and they had
just been on it once (for the first time ever for Alex and her cousin) when
they dashed back to say they were going on again. I pulled Alex over for a
quick recheck. She was 50 mg, with some insulin still in her system. Not a
number good enough to go on any ride, much less a roller coaster with a 176
foot drop and g-forces of 4.4. No.Friggin.Way. </div>
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<br /></div>
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But Alex was desperate to go again before the park closed in
10 minutes! Here’s how it played out; she gulped down a whole bottle of coke
and chewed 2 glucose tabs while her brothers and cousin stood anxiously by (it
looked like the four of them were in dire need of a bathroom, they were
jiggling so much with impatience). An 80 mg was the best I was going to get if they were going
to be on the ride, so off they raced with glucose tabs in one of Sean’s pockets
and a juice box in the other. I followed to the picture booth where they take
snapshots of all the riders as they take plummet at 70 miles per hour. There
was Alex and her crew – screaming wildly and grinning their heads off, with
their hands in the air. With their hands in the air?! </div>
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Insanity runs in our family apparently.</div>
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We had one more run in with a crazy blood sugar at the
amusement park and it was not good (I know, are they ever?). We had waited in
line to get on Bizarro, another crazy roller coaster with a lot of inversions.
I was waiting with my niece Natasha, Alex and Sylvester; the boys were
somewhere behind us. Our ride was next, maybe 2 minutes more of waiting when
Alex says she doesn’t feel well and Sly offers to take her off while I ride
with Tasha. He and Alex head for the exit ramp. I look down then look up again
a moment later and Sly is carrying Alex in his arms her head is slumped on his
shoulder.</div>
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I’m still trembling as I think of this. He said her knees
had buckled and she was on the verge of passing out, so he grabbed her and
carried her down the 4 flights of metal steps to the ground. I ran behind with
Tasha in tow – Sean and Mike had no idea and were still ready to go on the
ride. We sat Alex on the ground and I checked her sugar with quaking and
shaking hands while she drank the Coke her step-brother Jules had just run for.
She was as white as a sheet, but she wasn’t low – a rebound? I don’t know; we
had checked her before we got on the ride but we did have to wait a while so
maybe the heat of the day and anxiety conspired? I still don’t know. I do know
that I never want to see my husband having to carry my daughter in his arms
again like that. Ever. But I am also ever so thankful that he did and that he
was there with us. In a theme park surrounded by the “heroes” that I grew up
with – Superman and Batman – they couldn’t hold a candle to my husband on that
day. </div>
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Did that episode stop Alex from going on her rides, or me
from letting her? Of course not; as we T1 parents always say, our kids can do
anything that any other kid can do. And I’d be doing Alex a grave injustice if
I treated her differently just because she’s got type 1 diabetes. She’s still a kid, a
growing one, but a kid nonetheless and it's my job to make sure she does it right.</div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoJ8mDe22tD78kpwTj3mz8xzpeUjePMrajjow7i8Oh4Y8HK_zESTtniVjGWD1EnUp5TxHFkGsbhuevc1aKmY-aElzyuTjQuf9CQdsEl6asBw6yYcPhtvYLFNnqAW7X85Z0DhIUP9HtKGLq/s1600/photo+7.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoJ8mDe22tD78kpwTj3mz8xzpeUjePMrajjow7i8Oh4Y8HK_zESTtniVjGWD1EnUp5TxHFkGsbhuevc1aKmY-aElzyuTjQuf9CQdsEl6asBw6yYcPhtvYLFNnqAW7X85Z0DhIUP9HtKGLq/s320/photo+7.JPG" width="239" /></a></div>
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Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com1tag:blogger.com,1999:blog-8400140594762351201.post-12762925290736531672011-11-08T11:52:00.002+00:002011-11-08T11:52:11.147+00:00Putting Carb Counting Skills to the Test with Delicacies from Ghana<!--[if gte mso 9]><xml>
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When you’re a type 1 diabetic, or the mom of a 10-year old
type 1 diabetic who really couldn’t care less at this point in her life (and,
really, why should she have to?) you know that its all about the numbers game.
Numbers swirl through your vision, day in and day out, and at night you dream
of them. High numbers (bad), low numbers (badder) and numbers that are sheer
perfection, though achieved only after herculean efforts.</div>
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<br /></div>
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Yes, we look at numbers incessantly. We hear
someone blurt out a number, totally out of context, and we think “Ooops, that’s
bad.” We see a food – a banana, a stick of gum, a bowl of fried rice and right
away, we’re trying to guestimate carbs. </div>
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<br /></div>
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That’s the worst part, for me; the carb counting. Or in my
case, the carb <i>guessing</i>. A nutrition scale is part of our arsenal, so it’s not
all a hypothesis. We bought ourselves a Salter 1450, a nutrition scale par
excellence, with all the bells and whistles and a few thousand foods on its
vast data base. If we lived in the U.S., it would be ideal. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As we don’t live in the U.S., it’s a little less so. Alex
has been living here in Ghana
for as long as the rest of us, since early 2004. But in her case, that’s the
majority of her life. She’s grown accustomed to local foods, and will often eat
them in favor of my own homemade fixings. Alex would rather eat banku and
pepper than mashed potatoes. She’d take a bowl of gari soakings over a bowl of
oatmeal, any day. Give her a ball of kenkey and some one man thousand (incredibly
tiny smoked fish), and she’s in heaven. Kelewele, abolo, red red, waakye, fried yam and shitor
get first preference. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjOVUE9YISXJXyKhjcH7mG3Zv_OmtwB6cczYFo0CMPbxcwDY2w3AA2HWbdAleDeK_Ra18e9SwtkwfcRpAyje2H4N0QRhFI9Pb7adeNqfmwaLA2Pobwof7elZK7w4OWgQumfetkCxBjnqrT/s1600/banku+and+pepper.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjOVUE9YISXJXyKhjcH7mG3Zv_OmtwB6cczYFo0CMPbxcwDY2w3AA2HWbdAleDeK_Ra18e9SwtkwfcRpAyje2H4N0QRhFI9Pb7adeNqfmwaLA2Pobwof7elZK7w4OWgQumfetkCxBjnqrT/s320/banku+and+pepper.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tilapia, banku and pepper</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv5x6YyGRJAGnKFl8uMvmIGxWLHG4oAn_lJtAotkjOIK-DZxXUMmuVPwBYvblVm01Oopqo4UH0YaKB2pZ6eHqsmlynY4oTaSNorF_bAoFTtHRpjn1f_hDoVDpRlQ19z6rWHG9autdtI2U9/s1600/gari.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv5x6YyGRJAGnKFl8uMvmIGxWLHG4oAn_lJtAotkjOIK-DZxXUMmuVPwBYvblVm01Oopqo4UH0YaKB2pZ6eHqsmlynY4oTaSNorF_bAoFTtHRpjn1f_hDoVDpRlQ19z6rWHG9autdtI2U9/s320/gari.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dried gari and gari soakings</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDz8XOBdtsj00iGm7GeRNNLYyUz2dHsA6bnAP3LbvkqM3KkIfH4EWvZIBTkv2bMWKPMoR4xdqBnnzkj-ggPdiRlg9De176L7wMXjiOqhGQ61NXM_mEY2wv52V3ocExdXIOcEfs8O1OmUx5/s1600/fried+yam.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDz8XOBdtsj00iGm7GeRNNLYyUz2dHsA6bnAP3LbvkqM3KkIfH4EWvZIBTkv2bMWKPMoR4xdqBnnzkj-ggPdiRlg9De176L7wMXjiOqhGQ61NXM_mEY2wv52V3ocExdXIOcEfs8O1OmUx5/s320/fried+yam.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fried yam with shito</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLHMvFoIV1DLXEKdZaVhm8YK3QooFHlVX4bgBNzkyYDAypLUWKFCO3SuVJYbODxQsrYDWYk51jsuT37wgtFn1jdju-tmjsP8VkHVr6gzSWZF8QFfrFSgqMWqhjCFoIv-3UpZuLiOpAKG1Q/s1600/kelewele.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLHMvFoIV1DLXEKdZaVhm8YK3QooFHlVX4bgBNzkyYDAypLUWKFCO3SuVJYbODxQsrYDWYk51jsuT37wgtFn1jdju-tmjsP8VkHVr6gzSWZF8QFfrFSgqMWqhjCFoIv-3UpZuLiOpAKG1Q/s1600/kelewele.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kelewele</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDfWYAdNHgCPYx2s4TH-GCCRQzG9MIL5FU-liUwghvY5k-E_UWkdYGgOoRTcdqlXbmaCMa3ty2yI1TXkVIZtS8VmSRk7eyhlyFHAy3CJveLCT3BquG9Q-hBXov1ZvW1ENvfXJ2hNLSEilW/s1600/abolo.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDfWYAdNHgCPYx2s4TH-GCCRQzG9MIL5FU-liUwghvY5k-E_UWkdYGgOoRTcdqlXbmaCMa3ty2yI1TXkVIZtS8VmSRk7eyhlyFHAy3CJveLCT3BquG9Q-hBXov1ZvW1ENvfXJ2hNLSEilW/s1600/abolo.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Abolo</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgdGvXuE792of7USURRK1dHdqUuPtJGLHzog1eZ6p-dyYrw7dYWWXWeJn97m58jYcq1dGybejKxStcbXS-IC8bkXpVcwZldWnuEzkeR_7onUSdSHnOznooHvdd0uOoKq0Qvddy0FmJ16QR/s1600/kenkey.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgdGvXuE792of7USURRK1dHdqUuPtJGLHzog1eZ6p-dyYrw7dYWWXWeJn97m58jYcq1dGybejKxStcbXS-IC8bkXpVcwZldWnuEzkeR_7onUSdSHnOznooHvdd0uOoKq0Qvddy0FmJ16QR/s320/kenkey.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ga kenkey and pepper</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicrh9uf0nt5XtcTX2d4yKnz5ssw7k6qR55aWcU1w051W6b_LNGaUhI_YLe2cODkc1Bu76vGVT1g2RPwx1arUOT9fw4X_Hu-mbunNC4BeFtZbumvMriMuRXLL5dFz2ZgLJlwmHAyoeN2htT/s1600/waakye.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicrh9uf0nt5XtcTX2d4yKnz5ssw7k6qR55aWcU1w051W6b_LNGaUhI_YLe2cODkc1Bu76vGVT1g2RPwx1arUOT9fw4X_Hu-mbunNC4BeFtZbumvMriMuRXLL5dFz2ZgLJlwmHAyoeN2htT/s1600/waakye.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waakye</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgter-lxqWeEoJF0ahlkJwk5_vE52ierX3yhkjBVEbAKi9AtetNg_-bDv_M_yvh5q1X58g4tXlTdtJ3C6gDNoTryXCOGwn-_DKlpzJg3GmGGrWZ4TNpiCIkqgQYOBLdkpSWVz2Bz86tw8BS/s1600/red+red.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgter-lxqWeEoJF0ahlkJwk5_vE52ierX3yhkjBVEbAKi9AtetNg_-bDv_M_yvh5q1X58g4tXlTdtJ3C6gDNoTryXCOGwn-_DKlpzJg3GmGGrWZ4TNpiCIkqgQYOBLdkpSWVz2Bz86tw8BS/s320/red+red.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Red red</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
Those things, tasty as they are (and mostly, they are) are
NOT on the Salter database. <span style="mso-spacerun: yes;"> </span>So Alex’s
ingestion of any of them is more often than not a guess at what I think might be a
fairly good substitute, nutrition wise. Kenkey is made from fermented corn dough,
so polenta is a good substitute. Banku is also made from corn dough but often with pounded plantain or sometimes cocoyam, so polenta is as close as I can get. Gari is ground, dried cassava, so tapioca beads
work as a good approximation. Plantains are the only “local” dish on the Salter
scale, but I have to consider how it’s cooked, with minced ginger and pepper spice, and
fried in a giant vat of oil. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitgdpyAhv_M_KTUY8OgHuSITy8G3sZ2IXfaSVBMXG7w74NGbOgCX6DktSWaC3o19Bms6RVB8aZVsSNp4u7vnTAwv_Su0tTBjRRZbc-wonllkNOewWUYwXYajxH8QqIoBtRCPi02oPSgVZ_/s1600/tema+market.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitgdpyAhv_M_KTUY8OgHuSITy8G3sZ2IXfaSVBMXG7w74NGbOgCX6DktSWaC3o19Bms6RVB8aZVsSNp4u7vnTAwv_Su0tTBjRRZbc-wonllkNOewWUYwXYajxH8QqIoBtRCPi02oPSgVZ_/s1600/tema+market.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Community 1 market</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Local foods are not pre-packaged; they’re
purchased from a stall at the local market, often wrapped in newspaper. Sizes
and quantity often vary from one day, and one seller, to the next, so never can
we assume that what “worked” yesterday will work today. Believe that, and you’re equally as likely to be chasing a
high as you are fighting a low.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, next time you want to complain about carb counting and crazy numbers, even after you've search your Salter, or checked your Calorie King, think of us here doing our best guestimating. </div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
</div>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com4tag:blogger.com,1999:blog-8400140594762351201.post-2921429972072144842011-11-04T16:18:00.002+00:002011-11-04T16:18:17.236+00:00*This* Artificial Pancreas Gets A Fail<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
Earlier this week, the JDRF – the Juvenile Diabetes Research
Foundation – took out a huge nearly full page ad in the Washington Post and the
New York Times. A gorgeous little girl stared out, and the caption read “1 in
20 people, like Piper, will die from low blood sugar.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
1 in 20. That’s a startling statistic. More than startling,
heart-wrenching. I have nearly 300 Facebook friends all of whom have a child
with type 1 – does that mean I will cry for 15 children whose lives will be cut
short by diabetes? Or will I… no, I can’t even think of that right now.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The advertisements were not to raise awareness of type 1
diabetes, per se, or even fund raise, which JDRF is incredible at, but rathre it was to – in some crazy, somewhat roundabout way – encourage/coerce the Food
and Drug Administration to move quicker on approval for the JDRF’s pet project,
the Artificial Pancreas, a computerized, closed loop system which integrates an
insulin pump system and a continuous glucose monitor. Essentially (and very basically, I know I'm missing the finer points), the AP would
dispense insulin in response to blood glucose needs, no human interaction
needed. Well, almost, you know what I mean.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now, quite a few parents are not as happy with JDRF’s new
direction as JDRF would like them to be, and I can certainly see why.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Incredible as it might be for an individual with type 1
diabetes to not have to worry about the mechanics of blood sugar control, which
would be taken over by the AP, those individuals would still have type 1
diabetes. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I watched an incredible <a href="http://asweetlife.org/a-sweet-life-staff/featured/must-see-video-the-artificial-pancreas-in-action/21243/" target="_blank">video </a>the other day, which followed
a group of children in Israel
who were all given the opportunity to test drive the artificial pancreas. It
really is heart-warming to watch it, though I must admit that the little girl
who said that diabetes took up half of her life saddened me. A lot.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At the end of the video, all I could think of was cool. If I
had an AP for Alex I would love it. Even if it meant she had electrodes coming
out of her little body and was hooked to a laptop computer strung off her back
in a laptop for the rest of her life. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then I thought to myself, is that you really want for
your daughter? To be physically tethered to a machine for the rest of her days?
That’s not a real life. She’d still have type 1 diabetes. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Low blood sugar. It is an anathema to we type 1 parents. It’s
scary enough during the day. We scurry for juice, glucose, anything to bring
our child’s bg up. Today we hit a nauseatingly ugly 35, with 1.75 IOB. It wasn’t
pretty. Alex dropped down onto the coffee table and wailed “I’m low.” No need. I
could see that, shaky and pale, with tears welling up and spilling over. Good
grief.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
An artificial pancreas? Forget it, she’s got one already and
it sucks. I mean, I just nearly killed her. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ll just wait. I’ll take one cure, please, thank you.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEaSk7FJX2nU0AuQvMio-f3oMlfKHZ3niTwLHgRjW7b2bLzxQ1qgmRmJ1hf19WyzTcmY9ue1rEiJEGSB1nA1aJFobnZeQcS8dnbjDPxqNoGSo9TShU02Ycg6oUjY2NZKzce9DGqfFR9ezo/s1600/11042011436.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEaSk7FJX2nU0AuQvMio-f3oMlfKHZ3niTwLHgRjW7b2bLzxQ1qgmRmJ1hf19WyzTcmY9ue1rEiJEGSB1nA1aJFobnZeQcS8dnbjDPxqNoGSo9TShU02Ycg6oUjY2NZKzce9DGqfFR9ezo/s320/11042011436.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com3tag:blogger.com,1999:blog-8400140594762351201.post-62287796210280599362011-11-03T10:07:00.001+00:002011-11-03T10:07:46.771+00:00Got insulin? It does a body good!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7hXfULVCYza7MsG-TwvW3DDIJcLUMCLFFJ1Gz2j777Wg5BqzYvczbuV155_l8Mr6H96uk7_mh2Od5VKY7z86EY54JFEFMDK-ZCRhveoBPH3SXfJ5D-6ucOPxYB3yQaSHSwhdEql-NdfwR/s1600/LantusorHumalog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></div>
<div class="MsoNormal">
Day 3 of Diabetes Awareness Month and I have something to
tell you. I like insulin. In fact I <i style="mso-bidi-font-style: normal;">love</i>
insulin. You probably do too, and you don’t even know it. Ah, who am I kidding?
Anyone who reads this blog knows all too well all about insulin. But just in
case some poor misguided creature stumbles upon this post, I’ll elaborate.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Every body starts off with a pancreas which makes the
hormone called insulin. Insulin helps to convert the food you eat into the
energy that you need. Every day, a fully functional pancreas will perfectly do
just that. Mine does, so does Sean’s and Mike’s and Sly’s. But not Alex’s.
Alex’s pancreas is defunct. Up until early 2008 it used to be funct but now, no
longer. </div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgneKmUCYyEqJiL84cjnqnfJqceFRfwZZ23Lf7AoJQOTC96pKdu4TYIyDYtvKY14lu1rylJSVSe4ensN_Xytgxoqnx1QCeIssMUpLFoZoCLWXxgMR1sKz69Pk7_Bq4YUl1BIepQcSGN4JqR/s1600/pancreas+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="195" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgneKmUCYyEqJiL84cjnqnfJqceFRfwZZ23Lf7AoJQOTC96pKdu4TYIyDYtvKY14lu1rylJSVSe4ensN_Xytgxoqnx1QCeIssMUpLFoZoCLWXxgMR1sKz69Pk7_Bq4YUl1BIepQcSGN4JqR/s320/pancreas+1.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
As far as organs go, the pancreas – when it’s working – is a
superstar, and an ugly one at that. It's the Steven Tyler of body organs. In truth,
I think it kind of looks like a turd. Yes, that’s it, a shitty turd; at least
Alex’s is certainly that.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But it’s the insulin that is critical to one’s existence.
And because Alex’s pancreas, defunct as it is, doesn’t make insulin we have to
get it into her body some other way.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Manufactured insulin is the genius of two individuals; Drs.
Frederick Banting and Charles Best. It was 1922, and the two docs, with a whole
host of others, teamed up to discover the miracle that is insulin. It’s a long,
interesting story, but I won’t tell it here but you can find it <a href="http://www.nobelprize.org/educational/medicine/insulin/discovery-insulin.html">here</a>.
Suffice to say that the pair were awarded the Nobel Prize for Medicine for
their discovery, and they have my eternal gratitude.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Insulin was basic, back then; it only came in a single
flavor. Now we have several different kinds; fast acting, short acting, long
acting, intermediate acting, and combination of two. Some parents, incredibly
talented mixologists, take it a step further and combine three different kinds
of insulin at once, to minimize the number of shots their child must take in a
day.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7hXfULVCYza7MsG-TwvW3DDIJcLUMCLFFJ1Gz2j777Wg5BqzYvczbuV155_l8Mr6H96uk7_mh2Od5VKY7z86EY54JFEFMDK-ZCRhveoBPH3SXfJ5D-6ucOPxYB3yQaSHSwhdEql-NdfwR/s1600/LantusorHumalog.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7hXfULVCYza7MsG-TwvW3DDIJcLUMCLFFJ1Gz2j777Wg5BqzYvczbuV155_l8Mr6H96uk7_mh2Od5VKY7z86EY54JFEFMDK-ZCRhveoBPH3SXfJ5D-6ucOPxYB3yQaSHSwhdEql-NdfwR/s1600/LantusorHumalog.jpg" /></a> </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The fully functioning pancreas is amazing; it knows exactly
how much insulin to spurt out in response to the food a person consumes, and it
knows exactly when to spurt it out, too. All foods digest differently and the
pancreas knows this. Me, as the pancreas-by- proxy, doesn’t do anywhere near as
good a job. Even though we can approximately calculate how much insulin Alex
might need under a given scenario, it’s still a crapshoot.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Insulin has saved many, many people since 1922; before that,
they died a slow – an agonizingly slow – death. Starved of food, robbed of
energy, truly skin and bones. Don’t believe it? Get a load of these before and
after pictures of a child diagnosed with type 1 diabetes and then a few months
after beginning insulin injections.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg52BJB4Taje16MicukoP21wH0SFiuVPMhhPcfDjFo59CYAQHSfGZu-6IkOetsd2_0NAY0tmKAX_pdv4gdg244w3sGmjJxzgiqdgInWQaBUUeJUvjxmX2UaL9H6vq78bJGG2diCmADIDFJr/s1600/insulin+3.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg52BJB4Taje16MicukoP21wH0SFiuVPMhhPcfDjFo59CYAQHSfGZu-6IkOetsd2_0NAY0tmKAX_pdv4gdg244w3sGmjJxzgiqdgInWQaBUUeJUvjxmX2UaL9H6vq78bJGG2diCmADIDFJr/s1600/insulin+3.jpg" /></a> </div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
Incredible isn’t it?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And it’s pretty much like that for our children, too. The
transformation is awesome.</div>
<div class="MsoNormal">
Back then, insulin injections were done using a reusable
syringe that had to be sterilized by boiling, and occasionally sharpened by
hand with a whetstone. The needle was terrifyingly long. I can’t imagine how
many children with type 1 cried at the sight of it, and how many parents
inwardly wept every time they had to hurt their baby with another shot of this precious liquid that
would keep them alive.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjBnuzYNP1k2E4DU9sV90jgufoMJZixgxHHmO4HTAK_RqI3-Y6A1fslCBNu9kaNcGBFYiM8PaJaXt0tClfqxcjJX8ar5-1e8-3rX-QW5E2LTYkGMEiqc9jKPZO_nj6rUr9lqr7GnWfhNCq/s1600/insulin+syringe+old.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjBnuzYNP1k2E4DU9sV90jgufoMJZixgxHHmO4HTAK_RqI3-Y6A1fslCBNu9kaNcGBFYiM8PaJaXt0tClfqxcjJX8ar5-1e8-3rX-QW5E2LTYkGMEiqc9jKPZO_nj6rUr9lqr7GnWfhNCq/s320/insulin+syringe+old.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6NTJ4wfgkafNRUKhn6f3fxU_ugn5CuwL38mr5IsxJMXr-LWmMvLCkT-cVV5p_Gfbh2E3NBmqnMOoHZ6soaJDJh6gYXx0VwhxtHNgNAl9C0e1ZVQRmOM1OJSHRmZui8DkCP1RVElJwCJfD/s1600/insulin-syringes.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6NTJ4wfgkafNRUKhn6f3fxU_ugn5CuwL38mr5IsxJMXr-LWmMvLCkT-cVV5p_Gfbh2E3NBmqnMOoHZ6soaJDJh6gYXx0VwhxtHNgNAl9C0e1ZVQRmOM1OJSHRmZui8DkCP1RVElJwCJfD/s1600/insulin-syringes.jpg" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today, we have much better delivery devices. Insulin
syringes come with needle tips that range in size from 5/16” (or 8mm) to
1/2" (or 12.7 mm). For people who use insulin pens – handy devices that
hold a cartridge filled with insulin and have disposable pen caps –the needle
size is even smaller, only 3/16” (or 5 mm). They still hurt, of course, how could they not? But far less than the
syringes of yore.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Alex started off with syringes – in the “business” we call
it MDI for Multiple Daily Injections. Now, she uses an insulin pump, a
battery-driven, life-saving, incredibly expensive, incredibly wonderful little
computer. </div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeKs-7s0U-3qMTwlHIis1vFwp5KDulS9RCzDoG7XSPuFlfwK2OoNHfQM5SZs_DXQJlsMEZSTney7EJz5GdLUWhwUzDgWS7wTkBmNZA-v7Sbi8uU3HJjItsG1WT9NH9TYgoMbVTk7GTIsrG/s1600/Ping.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeKs-7s0U-3qMTwlHIis1vFwp5KDulS9RCzDoG7XSPuFlfwK2OoNHfQM5SZs_DXQJlsMEZSTney7EJz5GdLUWhwUzDgWS7wTkBmNZA-v7Sbi8uU3HJjItsG1WT9NH9TYgoMbVTk7GTIsrG/s320/Ping.jpg" width="320" /></a></div>
<div class="MsoNormal">
For a type 1 diabetic person, it’s their life support
system. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
About the size of a cell phone, the insulin pump connects to
Alex’s body through a long, skinny plastic tube, at the end of which is a tiny
cannula that is inserted just beneath her skin. Insulin flows from the
cartridge stored within the pump’s housing, at an amount and rate set by the
individual, in this case, me. Alex knows better than to fiddle with the
settings, because just as insulin gives her life, it can take it away just that
quickly. But I won’t go there just now.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The insulin pump has been around for years, but
manufacturers are working hard to make it as small and efficient as possible.
Some of the newest ones are now tubeless. Alex’s Ping
is not tubeless but it is remote controlled. How cool is that? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Way cooler than this, right?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWeAXhr25e3aCVrgvCzkYsNKyjaEQtwlm1c77bCN3FFjY_oNO9K5z0kXmHm_Se0h8UbE4y745Dk0BdG9Z2791ybZ1V-oc9-ujT0qI-MuqK8VCea0sRb9SuxwErmb6OXbxmXkv8SNhSLcgt/s1600/insulin+2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWeAXhr25e3aCVrgvCzkYsNKyjaEQtwlm1c77bCN3FFjY_oNO9K5z0kXmHm_Se0h8UbE4y745Dk0BdG9Z2791ybZ1V-oc9-ujT0qI-MuqK8VCea0sRb9SuxwErmb6OXbxmXkv8SNhSLcgt/s1600/insulin+2.jpg" /></a> </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That’s an insulin pump, circa mid 1960s, held about a gallon
of insulin. We’ve come a long, long way.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This blog post has dragged on long enough; obviously I can’t
say enough about the miracle of insulin. But I will leave today’s post with a
final few words:</div>
<div class="MsoNormal">
<br /></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-size: x-large;"><b>Insulin Is Not A Cure!!!</b></span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYyKCtWaEkd5jnYVzNOuJcfVgQhAbsShx0MIC69t2jYPJcXYrfVQzOdJ1Az8KVxeP2JF1jOsO0KeaWmNFix0_WGLbK9PLqbtZqwFrtpdRJ7kGC3DXd7M9GNEAv-pwGnoMy6UmJ9hqcFSH4/s1600/alex+pumping+%2528Small%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYyKCtWaEkd5jnYVzNOuJcfVgQhAbsShx0MIC69t2jYPJcXYrfVQzOdJ1Az8KVxeP2JF1jOsO0KeaWmNFix0_WGLbK9PLqbtZqwFrtpdRJ7kGC3DXd7M9GNEAv-pwGnoMy6UmJ9hqcFSH4/s320/alex+pumping+%2528Small%2529.JPG" width="286" /></a></div>
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<br /></div>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com0tag:blogger.com,1999:blog-8400140594762351201.post-3212236333431501612011-11-02T09:10:00.003+00:002011-11-02T09:11:00.964+00:00A Night in the Life of a T1 Mom: Musings on Vampires and Angels<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ToatDb05yWDvML2UJCl3zWhmO7kVyxyzCtIOPUQbnBo_zuAgVksrn3ZeKJplnHNhitUsFR7LtlTE-lWdTg_0WrELBibhGkDlTETfOeN1BCFG3zJjxR8y9yUz_b3VfrPVO7KIgUzJghgX/s1600/alexandra+prayer+pic.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ToatDb05yWDvML2UJCl3zWhmO7kVyxyzCtIOPUQbnBo_zuAgVksrn3ZeKJplnHNhitUsFR7LtlTE-lWdTg_0WrELBibhGkDlTETfOeN1BCFG3zJjxR8y9yUz_b3VfrPVO7KIgUzJghgX/s640/alexandra+prayer+pic.JPG" width="465" /></a> </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Day 2 into November’s Diabetes Awareness Month and I’m beat
already. And yet last night was a good night. Before going to bed last night at
9:00, Alex’s blood glucose levels was a quite respectable 75 mg. We aim for a
range between 70 mg and 140 mg and this was perfect. Except it wasn’t, not
before going to bed, and not with .42 units of insulin still worming its way
through her body as it worked its magic on the pasta and chicken she ate for dinner.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
No, 75 mg is not a good going to sleep number, so I had her
take a slug from the juice box that I keep handy alongside the bed. A “slug”
can’t be quantified so I’d estimate she drank about 4 ounces, enough to prop
her sugar up enough during the overnight hours, or at least until 2:00 a.m.
when I wake up to check.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now, some parents of children with type 1 diabetes have been
told that there is no need for an overnight check. But I
can tell you that the few parents who choose not to wake up and check their child’s
glucose level are truly in the minority. Perhaps I am overly
cautious, but I am like a fanatical vampire feeling the need to wake up and
draw blood from an innocent. And so, I wake up every morning at 2:00 a.m. and do the T1 mom's blood sucking thing. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I think in the 1228 days that Alex has
had diabetes I’ve slept through four alarms. I remember distinctly because I
still feel guilty about them, and I thank the guardian angel (Dad, I know it’s
you, thank you. I love you!) for keeping her safe.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Woe to the parent who sleeps through the 2:00 a.m. check,
because the guilt can eat you alive. Just ask the mom (a Facebook friend) who,the night before last, slept an extra 30 minutes – right through an alarm
which kept right on buzzing – only to find her too sweet daughter clammy and pale, and
her blood sugar at a heart-stopping 39 mg with nearly 1½ units of insulin still
kicking. The guardian angel at work again. And yes, we all know in our heart of hearts that shit happens, that we're only human, blah blah blah, but that doesn't negate the angst or guilt. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And here's the reason why; I can also give you the names of at least three heartbroken
moms who know all too well the dangers of somnambular hypoglycemia – a low
blood sugar while sleeping. I may have just coined that term, but nocturnal
hypoglycemia is too limiting. It’s not as though our children are any safer
napping in the daytime.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But Alex’s 2:00 a.m. check was good; 159 mg – slightly higher
than I’d like but not worth “fixing” and likely a direct result of the aforementioned
unquantifiable slug of juice. But that’s how it goes. Her 5:00 a.m. check was a very nice 89
mg – not too high, not too low. Just right. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Oh, that it all her bg numbers could be that perfect. But I can dream, can’t I?</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ToatDb05yWDvML2UJCl3zWhmO7kVyxyzCtIOPUQbnBo_zuAgVksrn3ZeKJplnHNhitUsFR7LtlTE-lWdTg_0WrELBibhGkDlTETfOeN1BCFG3zJjxR8y9yUz_b3VfrPVO7KIgUzJghgX/s1600/alexandra+prayer+pic.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></div>
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<br /></div>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com2tag:blogger.com,1999:blog-8400140594762351201.post-54931986447467101902011-11-01T08:33:00.002+00:002011-11-01T08:33:20.826+00:00November is Diabetes Awareness Month, and We're Celebrating A Life Lived<div class="separator" style="clear: both; text-align: center;">
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<br />
Today is the first day of November. You might say no biggie and it isn’t, unless you happen to live with a person who has type 1 diabetes, or any type of diabetes, for that matter. And of course, I do; my sweet 10-year old Alexandra was diagnosed with this mind-numbing, exhaustive, unpredictable, totally effed up disease a little more than three years ago.<br />
<br />
November happens to be Diabetes Awareness Month, so, let’s dispense with the pleasantries, shall we, and become aware. Every day, in honor of Alexandra, I will throw a little something at you to get your brain juices flowing, to perhaps provide you with an "I didn't know that" moment. And if we spark a little empathy along the way, we'd appreciate that, too. Misery loves coompany.<br />
<br />
Question #1<br />
<br />
Were you aware that Type 1 Diabetes is an autoimmune disease?<br />
<br />
That’s right! It’s an autoimmune disease; that means when Alexandra was just a cute, scrappy, scrawny 7-year old, her body turned on itself. In the case of people with type 1 diabetes, the pancreas is the scene of the destruction. No one knows why it happens, it just does.<br />
<br />
Oh, were you living under the delusion that my child did this to herself. Or worse, that I helped her to become a diabetic by plying her with candies and sweets, and forcing the television remote into her little hands and leaving her to become nothing more than a human sloth?<br />
<br />
Nah, not me. Believe me if I had seen this thing coming, I’d have sold my soul to the devil and offered myself up instead. Let me repeat: <i><b>No one knows why type 1 diabetes happens, it just does.</b></i><br />
<br />
<br />
<br />
<br />Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com0tag:blogger.com,1999:blog-8400140594762351201.post-29964000067411318232011-09-01T11:56:00.009+00:002011-09-02T05:54:06.130+00:00This much, I can doI know that this tends to be a recurring theme of mine, but I can never <i style="mso-bidi-font-style:normal">ever</i> hope to repay the many individual kindnesses that my sweet daughter is currently reaping the benefits of. But I can do this. And not just for Alexandra, but also… <p class="MsoNormal"> </p> <p class="MsoNormal">Abby, Adjoa, Aiden, Ainsley, Alexa, Alexander, Alli, Amanda, Amy, Andrew, Anna, Autumn, Ben, Beth, Boz, Brandi, Brendan, Brooke, Brynn, Caitlyn, Caitlyn, Caleb, Cam, Cassandra, Cassie, Cayden, Chad, Chell, Coco, Colleen, Connie, Connor, Dani, Daniel, Danielle, David, Dean, Deanna, Eilish, Elizabeth, Emily, Emma, Grant, Hailey, Hannah, Heidi, Holly, Ian, Jack, Jacob, Jacob, Jamie, Jayden, Jenna, Jenny, Jesse, Jimmy, Jonah, Jordan, Jordan, Josh, Joshua, Justin, Kailee, Kailey, Katerina, Katie Jane, Kayla, Kerri, Kevin, Kyle, Kyra, London, Maddie, Marissa, Matt, Max, McKenna, Melissa, Mia, Michael, Morgan, Nathan, Nicholas, Nick, Nicole, Noah, Owen , Rachel, Rae, Ray, Reann, Richard, Sam, Samantha, Sarah, Scott, Sean, Seth, Sevaun, Stephanie, Steven, Tasha, Taylor, Tessa, Tim, Tommy, Tony, Trent, Treston, Trey, Ty, Tyler, Tyler, Zac, Zane, and Zoe.</p><p class="MsoNormal">As well as all of the other children (even those now grown) who have already endured so much more than any child should ever have to and for the parents who must stand by and watch, both in heartbreak and in awe.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">So, as of today, I have set up a recurring monthly donation of $100 to the Faustman Laboratories at Massachusetts General Hospital in honor of my too sweet girl, Alexandra.</p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdvntCqK4HEG5I6kBS0dsNSImI2-abCAa-LBDKHb6EDG6LlqCsQSxzboasdUHiRVWDQthuJri9W2o9rRRcjM4eNcOQDUbo0OyaBN_B0fSbhyphenhyphenwgm3imLJz1j7JeIwEe9f0mhrJWuCeubxQd/s1600/alex+spongebob.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 170px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdvntCqK4HEG5I6kBS0dsNSImI2-abCAa-LBDKHb6EDG6LlqCsQSxzboasdUHiRVWDQthuJri9W2o9rRRcjM4eNcOQDUbo0OyaBN_B0fSbhyphenhyphenwgm3imLJz1j7JeIwEe9f0mhrJWuCeubxQd/s200/alex+spongebob.jpg" alt="" id="BLOGGER_PHOTO_ID_5647385566508897922" border="0" /></a><p class="MsoNormal">I believe that Dr. Faustman gives us our best closest hope for a real cure for type 1 diabetes. And while it’s not a lot of money, every little bit counts. If you’ve got a little spare money, too, I’m sure <a href="https://give.massgeneral.org/SSLPage.aspx?pid=388">Dr. Faustman</a> can put it to good use.</p> <p class="MsoNormal"> </p> <p class="MsoNormal"> </p> Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com0tag:blogger.com,1999:blog-8400140594762351201.post-57270448805939530872011-05-24T15:22:00.009+00:002011-05-25T10:24:12.423+00:00Old news and some new thoughts<!--[if !mso]> <style> v\:* {behavior:url(#default#VML);} o\:* {behavior:url(#default#VML);} w\:* {behavior:url(#default#VML);} .shape {behavior:url(#default#VML);} </style> <![endif]--><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><!--[if !mso]><object classid="clsid:38481807-CA0E-42D2-BF39-B33AF135CC4D" id="ieooui"></object> <style> st1\:*{behavior:url(#ieooui) } </style> <![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> <p class="MsoNormal">If you're already a follower of Too Sweet Girl in Ghana, then this is old news. I was recently invited to provide an essay for <a href="http://asweetlife.org/a-sweet-life-staff/featured/a-sweet-girl-in-ghana-managing-type-1-diabetes-in-western-africa/16504/">A Sweet Life</a>'s online diabetes magazine. It's an opportunity to raise awareness for what our T1 children go through here in Ghana that I just couldn't dismiss. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">For the most part, that essay was well received by my family, peers and cyber friends.<span style=""> </span>Most who responded know how difficult type 1 diabetes is to manage under the best of circumstances, and they were very supportive of my efforts, not only to keep my daughter alive and well, but to support the local children here as well.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">But not everyone agreed.<span style=""> </span>I received a series of four separate emails from a local (Ghana-based) “friend” (whom I’ve actually never met but who shall remain anonymous here), who was clearly appalled.<span style=""> </span>My actual responses to her emails are in <span style="color: rgb(255, 0, 0);">red</span>, my thoughts (i.e. what I <i style="">should</i> have said) are in <span style="color: rgb(51, 51, 255);">blue</span>.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal"> </p> <p class="MsoNormal"> </p> <p class="MsoNormal"><b style="">Email #1</b></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">Hi Barbara,<br />I read your artcle about your daughter. The love that you feel for her is overhelming. But I have to admit that if my daughter got sick, the first thing I would do is leave Ghana and go home. I think you are putting your daughter's life at risk by staying here. Lol</i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style=""><span style="color:red;">Anonymous Friend, thanks for your support. Lol <span class="emotetext"></span> :)<br /><br />I think if we were in the states we’d be in worse trouble – without insurance who the hell can afford anything over there? At least here, the most important thing –insulin – is available and cheap, comparatively. And I’m truly blessed because I do have lots of moms and dads who help me keep Alex alive and healthy.<br /><br />How’s things with you? Not going to the states anytime soon are you? I need an insulin pump brought in? <span class="emotetext"></span>;-)</span></i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><b style="">Email #2</b></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">Barbara,<br />I sincerely disagree with you. I wa single and I could afford blue cross and blue shiled. I also knew people less fortunate than me who had help thourgh government programs. The very fact that you need something from the US tells me in my opinion that you should go home. </i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style=""><span style="color:blue;">I also need a White Castle hamburger but I’m not rushing for the plane!</span></i><span style="color:blue;"> </span></p> <p class="MsoNormal"><span style="color:blue;"> </span></p> <p class="MsoNormal"><i style="">I have never met you and tjerefore I think it isn't fair for you to ask me to get you anything from the states, </i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style=""><span style="color:blue;">Did she not see the winking eye icon? </span></i><span style="color:blue;"><span style=""> </span><span style=""> </span></span><br /><br /></p> <p class="MsoNormal"><i style="">But id I were you and my child was sick </i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">Sick? Alex is sick?</span></i><span style="color:blue;"> </span><span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">I would get my ass home asap. <span style=""> </span></i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">Say what you really feel, Anonymous Friend.</span></i><span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">If your daughetr were to get malaria </i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">been there, done that – twice! </span><span style=""> </span></i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style="">on top pf diabtes or any type f viral infection her life could be compromised,<br />I think that no child from any country should be brough here to be riased </i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style=""><span style="color:blue;">Don’t you have kids with you, here, in Ghana?</span></i> </p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">especially a sick one, Lol </i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style=""><span style="color:blue;">Oh, that makes your bluntness (some might argue rudeness) so much easier to accept.</span></i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><b style="">Email #3</b></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">Hi Barb,<br />Did you have Alex through ivf? </i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style=""><span style="color:blue;">No, none of my children were conceived through IVF, but what difference does that make?</span></i> </p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">I found that part of your story intriguing.<br />I was in richmond vA for three years, single and not well off. But I had blue cross and blue shield. <span style=""> </span></i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">If you live in the U.S. insurance is a necessity – you can’t get prescriptions or visit a doctor without it.<span style=""> </span>Here, I can walk into any doctor’s office or pharmacy and buy what I need, with cash in hand.<span style=""> </span>One thing that’s important to clarify – people with diabetes or their caregivers see their doctor very very infrequently as it relates solely to their diabetes care.<span style=""> </span>The burden, the onus,, the responsibility – 99.9% of the time – is on the patient or caregiver.<span style=""> </span>In a year, we probably spend all of 6 hours in total with Alexandra’s doctor.<span style=""> </span>The rest of the time, I am the expert. I make the decisions.<span style=""> </span>Even Alex’s doctor has readily acknowledged that she doesn’t “live” with the disease as I do and defers to my decisions as regards her diabetes care.<span style=""> </span></span></i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">I think that the US is better equipped than Ghana in helping all of its citizens when they are sick. </i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">Obviously, you don’t read the CWD forums.<span style=""> </span>You don’t know how parents fight with insurance companies to get the right insulin, to get adequate glucose strips, to get an insulin pump or a CGM.<span style=""> </span>You don’t know how often they have to appeal the insurance company’s ruling.<span style=""> </span>You don't know that they're struggling to meet ridiculous deductibles and co-pays. Don’t have private insurance there?<span style=""> </span>Then you’re screwed.<span style=""> </span>You’re at the mercy of Medicare or some other state run program.<span style=""> </span>Maybe you haven’t heard but insurance companies and pharmaceuticals run the country there, and their goal is to maximize profits – it certainly isn’t to ensure that every citizen has quality healthcare.</span></i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">I mean that sincerly in terms of quality of life and care.</i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">Do you really not know what’s going on over there?<span style=""> </span>Or do you live in a bubble?</span></i></p> <p class="MsoNormal"><br /><i style="">I think the very fcat that you need an insulin pump from home speaks volumes. </i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style=""><span style="color:blue;">Need? We don’t <b style="">need</b> an insulin pump.<span style=""> </span>I <b style="">want</b> an insulin pump –who wouldn’t want the b</span></i><span style="color:blue;">est <i style="">for their child? But in the absence of one, she’ll go back to injections.<span style=""> </span>She will still live.</i></span></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">Also they very fact that here your daugter is exposed to mopre viral infections and malaria.<span style=""> </span></i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">What?<span style=""> </span>The U.S. doesn’t have its share of infectious disease?<span style=""> </span>Hasn’t you ever heard of the flu epidemic? It seems to occur at least annually there.<span style=""> </span><span style=""> </span>Alex is one of the healthiest kids I know. Aside from the occasional cold she's never been sick, never been hospitalized.<br /></span></i></p> <p class="MsoNormal"><i style=""><span style="color:blue;"><br /></span>I have to say I wish you all the best and good luck, <span style="color:blue;"><br /></span>If it were me, I would be in a plane right now on my way home. </i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">You’re not me.</span></i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">PS,<br /><br />I cannot wait to go home. I have lived in eight countries and thid place is the pits.<span style=""> </span></i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style=""><span style="color:blue;">I can’t wait to go home either, I miss my mom.<span style=""> </span>But bear in mind that not every city <span style=""> </span>in the U.S. is better than Accra. <span style=""> </span></span></i></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><b style="">Email #4</b></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">I do not mean to offend you in the least, but how can you go from rich to poor and give your kids a better life or a life with more opportunities?<span style=""> </span></i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">I never ever said I was rich, and what makes you think that life would be better there and there’d be more opportunities?<span style=""> </span>I follow current events closely because that’s my job; the economy sucks there, unemployment is near 10% and property values are in the toilet. <span style=""> </span>Here, we’ve got a house (albeit under construction) that we own outright with no lien.<span style=""> </span><span style=""> </span>I’m working from home doing something that I like at a wage that is acceptable to us because our overhead is low.<span style=""> </span>My kids are getting a good education and lack for nearly nothing (McDonalds, Chuck-E-Cheese and Dave & Busters excepted).<br /></span></i><br /><i style="">My husband is Swedish, but Sweden is not a third world country. </i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">My husband is Ghanaian, and Ghana is an emerging market.</span></i><span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal"><i style="">I have friends here who have brought their kids here from other countries and for the most part they all want to go back to civilization. <span style=""> </span></i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">I have friends from civilized countries that have lived here, left and want to come back here, in spite of everything.<span style=""> </span>They miss Ghana.<span style=""> </span>You’re overlooking the good here.<span style=""> </span></span></i><br /><br /><i style=""><span style="color:blue;"></span></i></p> <p class="MsoNormal"><i style="">This place is the most backwards place I have ver been to. </i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"><i style=""><span style="color:blue;">Again, you are overlooking the good here.<span style=""> </span>You should have seen it twenty-something years ago.<span style=""> </span>Ghana has accomplished great things in the last two decades and is improving regularly albeit slowly.<span style=""> </span>You really can’t compare Ghana to a developed economy; that’s an unfair comparison.<span style=""> </span></span></i></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Those emails came in fairly quick succession yesterday, but I responded earlier today.</p> <p class="MsoNormal"><span style="color:red;"> </span></p> <p class="MsoNormal"><i style=""><span style="color:red;">Anonymous “Friend,”</span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">Obviously you don’t know much about the nature of diabetes so that you are reacting (over?) from a place of ignorance.<span style=""> </span>A person with type 1 diabetes needs only access to insulin and the ability to check their blood glucose levels regularly.<span style=""> </span>The insulin pump that my daughter uses (donated) and the new one that she will be getting (also donated) are merely delivery devices – they make life easier and provide us with the ability to closer match her food intake and her insulin.<span style=""> </span></span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">In the absence of an insulin pump there are other delivery devices including an insulin pen or syringes, and we’ve got plenty of those.<span style=""> </span>As far as my “asking” you if you were going to the states – no offense, but I ask everybody who has a tie to the U.S., you’re not special.<span style=""> </span>And I am not asking that question because I’m so desperate to have the pump to save Alex’s life.<span style=""> </span>No, I’m asking for someone to bring it because I don’t trust the post office.<span style=""> </span>Do you?</span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">You don’t know our circumstances, so it’s really not your place to judge me.<span style=""> </span>You’ve lived elsewhere in the world.<span style=""> </span>Besides the U.S., I’ve not.<span style=""> </span>I know there, and I know here.<span style=""> </span>And I know there is better if you have insurance, but we don’t have U.S.-based insurance.<span style=""> </span>Can we get private insurance if we lived there?<span style=""> </span>Maybe, but at what cost.<span style=""> </span>I’m 50, my husband is 59 and besides our other two we have one child with a chronic, very expensive disease.<span style=""> </span>If we could get insurance it will cost nearly $2,000 a month.<span style=""> </span>A month!<span style=""> </span>You can buy an awful lot of medical services here in Ghana for that, and not necessarily at Korle-Bu.<span style=""> </span></span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">We have Ghana-based insurance that lets us use medical services at 37 or Korle Bu plus some local clinics, that’s fine.<span style=""> </span>If Alex falls very sick – and in three years, she’s the healthiest of all my kids! – we’ll go to Korle-Bu because I trust her doctor to do well by her.<span style=""> </span>She’s already had malaria a couple of times, and coped just fine.<span style=""> </span>Interestingly, I know when Alex is getting sick long before she exhibits symptoms because of her blood sugar.</span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">As far as her diabetes care, it’s not rocket science, its just monotonous vigilance and it’s my job.</span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">If Alex had a disease that couldn’t be well managed here then I’d find a way to get her out of here, insurance be damned.<span style=""> </span>But for all intents and purposes, aside from having a chronic disease, she’s a healthy, thriving little girl.<span style=""> </span></span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">Yes, Ghana is a backwards place.<span style=""> </span>But it is my husband’s country and he is who he is largely because of being raised here.<span style=""> </span>I won’t disparage it for its problems; only try to make it better.<span style=""> </span>This country is my children’s legacy, such as it is, but I’m not ashamed that I live here.<span style=""> </span>Granted, some days I want to tear my hair out and scream, but I’ve been coming back and forth to Ghana for more than 2 decades, and I remember how bad it was and know how far Ghana has come.<span style=""> </span></span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">Returning to the U.S. now is not in our cards.<span style=""> </span>We have family there, yes, all of whom have their own lives, their own problems, we visit when we can afford it.<span style=""> </span>Our home is here, our lives are here.<span style=""> </span>We’re not diplomats or expat employees of some international conglomerate.<span style=""> </span>We’re “retirees” in effect, making do with pension, consultant and freelance revenues.<span style=""> </span></span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">And here is where we’ll stay.<span style=""> </span>I know you mean well, and you’re entitled to your opinion, but unless you walk in my shoes, don’t judge.</span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;">P.S. I can’t wait to go “home” (for vacation), either.<span style=""> </span>As soon as I get $6,000 together.</span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""><span style="color:red;"> </span></i></p> <p class="MsoNormal"><i style=""> </i></p> <p class="MsoNormal"> </p>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com7tag:blogger.com,1999:blog-8400140594762351201.post-90646821731974580502011-05-03T08:17:00.002+00:002011-05-03T08:18:34.146+00:00Smart Pump, Now Smart Momma<!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><!--[if !mso]><object classid="clsid:38481807-CA0E-42D2-BF39-B33AF135CC4D" id="ieooui"></object> <style> st1\:*{behavior:url(#ieooui) } </style> <![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--><p class="MsoNormal"><br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal">It was last year that Alexandra started pumping.<span style=""> </span>That was only thanks to the generosity of many, <i style="">many</i> lovely people who donated the incidentals needed to begin pumping, including the pump itself (a gently used Animas 1250), the cartridges, various insets and a whole host of other stuff.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">We’ve used it faithfully, although inefficiently, for the past 8 months or so.<span style=""> </span>And a recent scare had me thinking we’d be forced to go back to MDI but it proved to be a false alarm (at least so far, knock wood).<span style=""> </span>There’s a slight crack near the battery housing, which has been crazy-glued and taped, and we’re now protecting it with a rubber skin to keep it compact.<span style=""> </span>Fingers crossed it holds up for a good long while.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">Now, I can’t speak for Alex – she’s a kid who really just goes with the flow – but I love the pump.<span style=""> </span>But because I was learning to use it on my own (for liability issues, Animas declined to help train me), I was hesitant to go beyond simple boluses for the longest time, and combo boluses were only recently added to our repertoire.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">In all that time, I never availed myself (I mean Alex, of course) of the ezBG or the CarbSmart features of the pump.<span style=""> </span>Part of the reason for that is because we read blood glucose differently here in Ghana; it’s read in mmol, whereas everywhere else is in mg.<span style=""> </span>The pump features use mg, too.<span style=""> </span>And I just couldn’t trust Alex’s conversion or math.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">But then I ran out of strips for the (mmol) meter we always use, and had to rely on one of the donated meters. <span style=""> </span>I had passed out a great many donated meters to Alex’s doctor at Korle Bu Hospital, but I held onto these because this particular meter (Freestyle Lite) isn’t sold here, so strips aren’t sold here either.<span style=""> </span>And I have (well, now <i style="">had</i>) lots of strips and I just hate letting things go to waste.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">So, when Alex started her Easter break (which lasts here for an interminably long 3 weeks!) we started to use the Freestyle meter and the pump <i style="">together</i>.<span style=""> </span>With the carb counting that we already do, adding a bg and having the pump tell us if she needs insulin or not is a no-brainer. This is <i style="">so</i> easy!<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I know most other CWDs use their pump 24/7.<span style=""> </span>But because Alex is untethered she doesn’t have to.<span style=""> </span>She attaches only when she needs to for boluses.<span style=""> </span>And I don’t have to worry about basal rates, either (though I do give her a little during school because she’s a chronic under-boluser).<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I can’t believe it took me this long to figure it out.<span style=""> </span>Better late than never, though, right?</p> <p class="MsoNormal"> </p>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com3tag:blogger.com,1999:blog-8400140594762351201.post-8836860422085123582011-03-10T15:05:00.008+00:002011-03-10T15:13:37.192+00:00Looking forward<!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> <p class="MsoNormal">So, the past week has been “exciting,” with two interesting, life-altering events occurring. I’ll tell you about the first one now, and the other a bit later.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">First, I hit the half century mark on March 7<sup>th</sup>. <span style=""> </span>We celebrated with a weekend trip to Atimpoku, which was very nice as it always is.<span style=""> </span>The kids swam, we ate great food at Aylos Bay. We saw the twinkling lights over the Akosombo Dam at dusk. Alex caught a fairly large tilapia that got away when the line snapped as we were ready to take it off the hook. All in all, it was a perfect celebration. The only thing not nice was my allergies which were amazingly uncooperative – I was sucking Zyrtec down every 12 hours for 2 days to no avail.<span style=""> </span>But that’s past and (today, at least) I feel great.<span style=""> <br /></span></p><p class="MsoNormal"><span style=""></span>I am looking forward to the second half of my life.<span style=""> </span>And yes, I do believe I will live to at least 100!<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">The other event?<span style=""> </span>Well, nothing quite as monumental as a 50<sup>th</sup> birthday, but let’s just say I have the same degree of determination for the future and a great outcome.<span style=""> </span>Now let me get you up to speed so you’ll know what I’m talking about.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">Alex got her A1C results back the other day.<span style=""> </span>(FYI, the A1C is the lab test that tells you the average glucose which “clings” to a person’s blood over the previous 2-3 month period, the lower the A1C, the better).<span style=""> </span>Anyway, her A1C was worse (by far) than I expected.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I know.<span style=""> </span>I know.<span style=""> </span>It’s not supposed to be looked at like a report card.<span style=""> </span>But, really, isn’t that something you say when your own child’s A1C is good and you’re trying to make another parent of a CWD feel better?<span style=""> </span>It <i style="">is</i> a report card.<span style=""> </span>I flunked Pancreatic Lab.<span style=""> </span>Oh, I do great in Pancreatic Theory – A+ all the way.<span style=""> </span>But the lab work is 99.9% of the grade, and there’s no A for effort.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">So, yeah, the “life-altering event.” Alex’s latest A1C sucked at 8.5%.<span style=""> </span>Far worse than the 7.5% we got in October.<span style=""> </span>Granted, I think she’s had a growth spurt, and the hormones released during growth spurts generally result in higher blood glucose.<span style=""> </span>She certainly looks taller and she’s gained 5 lbs (<i style="">finally</i>, she’s only been stuck at 60 lbs. for the past 2 years!).<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">But growth spurt or not, her numbers have been horrible.<span style=""> </span>At school she doesn’t bolus enough so she’s invariably high between 11:00 am and 3:00 pm.<span style=""> </span>We play catch-up boluses because she eats something and forgets to tell me she ate something.<span style=""> </span>Or she refuses to eat the food we just bolused her for, usually resulting in a low followed by a high for overcompensating.<span style=""> </span>As I said, her numbers have been horrible.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">Oh, you noticed that there seems to be quite a few months between our A1C tests, huh?<span style=""> </span>Yeah, you would.<span style=""> </span>That’s ‘cause I’m avoiding Alex’s doctor.<span style=""> </span>I kept hoping that I’d get her numbers more in line and that the A1C wouldn’t be this bad.<span style=""> </span>Didn’t work.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">Don’t get me wrong, I’ve said it before; Dr. Renner is a lovely woman.<span style=""> </span>She won’t rant and rave or chastise me or make me feel worse than I already do.<span style=""> </span>She’ll likely ask Alex is there’s anything she’s done (or didn’t do) that could have given this result.<span style=""> </span>Alex will smile sweetly and then lie in her face and tell her no.<span style=""> </span>To be honest, Alex could be a lot less difficult and a lot less demanding.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">And I guess I could do a lot more demanding and be a lot less accommodating.<span style=""> </span>And there it is.<span style=""> </span>I’ve said it.<span style=""> </span>The problem.<span style=""> </span><i style="">I’m</i> the problem.<span style=""> </span>I do not crack down on Alex.<span style=""> </span>I took for face value the words “she can eat anything she wants, as long as she has insulin to cover it.”<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">The problem is Alex does eat whatever she wants.<span style=""> </span>She also drinks whatever she wants, which on too many days is a beverage called “malt,” a non-alcoholic drink that has 45 carbs in a single 12 oz bottle.<span style=""> </span>If I send her to the store, she invariably comes back with sweets – “Oh, I’ll just take 1 unit (or 2 or 3 or whatever) for these,” and then she practically inhales them.<span style=""> </span>A fight or a tantrum or some horrible scene ensues if I take them away.<span style=""> </span>By the time that occurs, I’m too exhausted and stressed out to fight back and I give in.<span style=""> </span>Bad mommy, I know.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">You have to understand something, with Alex, there’s no such thing as moderation.<span style=""> </span>But that’s all about to change, and Alex knows it.<span style=""> </span>We had a little discussion, she and I and her dad, and this is what we’ve all decided.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">New rules:</p> <p class="MsoNormal"> </p> <ul style="margin-top: 0in;" type="disc"><li class="MsoNormal" style="">Alex will be limited to one malt or soft drink over the weekend only.</li><li class="MsoNormal" style="">Sweets will be considered a “treat” and I will dole them out as I see fit (and if she brings one back from the store, it will become my possession. Note to God, please Lord, let it be chocolate!).<span style=""> </span></li><li class="MsoNormal" style="">Alex will bolus when I say so (and not when she’s good and ready), and she will tell me when or if she has gone back for seconds.<span style=""> </span></li><li class="MsoNormal" style="">Alex will also always weigh her food out (even for seconds) and let me know carbs so I can figure the right amount of insulin.<span style=""> </span></li><li class="MsoNormal" style="">Alex will make an effort to check her sugar at least 3 times a day while at school (I actually bribed her to check 3 times a day – she gets paid <i style="">only</i> if she does), and take the right amount of insulin for what she’s consumed.</li></ul> <p class="MsoNormal"> </p> <p class="MsoNormal">And yes, I know it’s a tall order for a 10 year old, but what else can we do?</p> <p class="MsoNormal"> </p> <p class="MsoNormal">I am disappointed and angry (mostly at myself) for the crappy A1C, but I am resolved that, in spite of that crappy report card, we will look forward.</p> <p class="MsoNormal"> </p>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com2tag:blogger.com,1999:blog-8400140594762351201.post-49892382242733751042010-10-22T16:11:00.002+00:002010-10-22T16:21:35.885+00:00In Remembrance of a New AngelJust a few short days ago, I witnessed something at once devastating and miraculous that I pray I never <span style="font-style:italic;">ever </span>have to witness again. Once my husband and the children leave for their respective destinations each morning, I log into my social networking sites to see what has been happening to my “friends” overnight in the cyber world. I know a lot of people have disdain for sites like Facebook but for me, isolated as I am from most of my family and friends, I embrace it. <br /><br />On Wednesday morning, I read something that ripped my very soul apart; it read like this, “<span style="font-style:italic;">With heaviest of heart – the passing of Eilish</span>.” Those few words told me that somewhere in the world, some mom was living my worst nightmare. Reading on, I learned that a cyber friend and CWD (childrenwithdiabetes) support group mom lost her Type 1 daughter to “Dead in Bed Syndrome,” where a person’s blood sugar falls while sleeping to a fatal level. <br /><br />Eilish was a 13 year old New Zealand girl. It was obvious that she was loved mightily by her parents, her family, her little sister, and everyone who met her. <br /><br />The previous night, I imagine, Eilish went to bed just as she always did. It’s a routine among parents of CWDs that one of the very last things we do before we go to sleep is check our child's blood sugar. I am 100% positive that was done – Eilish’s parents were vigilant with her care, and they were no stranger to diabetes care either as Eilish was diagnosed with type 1 diabetes at the tender age of 3.<br /><br />I can just imagine after the blood sugar check… Eilish kissing her parents goodnight, teasing her little sister a bit, saying her prayers, nodding off to dreamland.<br /><br />No one ever could have foreseen that Eilish wouldn’t wake up. <br /><br />Facebook and the CWD website were ablaze with posts of disbelief, horror and sorrow. One by one, Facebook avatars were replaced with a lit candle, a symbol of hope and more; these words were shared by a CWD dad in memory of Eilish.<br /><br /><span style="font-style:italic;">We light these candles - in your memory, to honour your life.<br /><br />We light these candles - to provide solace your family in their time of loss.<br /><br />We light these candles - as a sign that our thoughts and prayers are with you.<br /><br />We light these candles - to give ourselves courage, and to lighten our sorrow.<br /><br />We light these candles - to send you our love, and to light your way onward.<br /></span><br /><br />It’s not easy to convey emotion with the written word, but when you’re feeling it inside you as strongly as it was, the pain punches right through.<br /><br />I was thankful that I had the house to myself, that I could cry and wail and grieve in private. As much as it kept the ache fresh, like a wave – always breaking, always breaking – I couldn’t look away from the outpouring of love and support my cyber friends were offering Eilish’s family. <br /><br />While we look to share our grief as a means of enduring it, there was no way I could show my pain in front of Alexandra, so before her expected arrival I shut down not just my computer, but my emotions, and put my brave face on. When she arrived, I listened to her inane chatter (yes, I love her but she’s 9 and it is often times, inane) as best I could. But in the back of my mind, I could not help but dwell on Eilish, a sweet young girl that I never had the good fortune to meet. Neither can I ever forget her parents and the pain and sorrow that the people who loved her most are currently enduring – because I am <span style="font-style:italic;">that </span>parent – we, the CWD parents – are all <span style="font-style:italic;">that </span>parent, and we share their pain.<br /><br />So, if you’ve followed along this far, I hope you’ll follow my example. Hold your children a little tighter tonight, say a prayer for a new angel named Eilish, pray that her family finds peace and comfort in the knowledge that she was their amazing gift, even if only for a little while. And pray harder still that a cure for this damned disease is found before another angel joins sweet Eilish.Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com6tag:blogger.com,1999:blog-8400140594762351201.post-13968748792275449332010-09-12T10:01:00.014+00:002010-09-15T08:39:48.048+00:00The generosity of strangers? No... of friends!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJKdgiDbGQY_kFLqCtSm088prNRdgYv_bVWAxoaAwB_YgZArj8w4ccBzi39lGU9ouyhaKto9sENyVBR6HmrHpiyZXYcQzICDvgHbvqMbwZC0jITyd4uioicIaKpDbJC2V3RBveY1U24w9e/s1600/alex+pump.jpg"><br /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMhIBCq41Fi6igA08N4s7VdbfmGt-eAicdDUZG4gQfblbB5jG4Y40f2eLmi2697IvDb98PBujLvhgL4kjKVUyci6icxipXmBEr0tsdPEzX2L8KHG9Cphz-dEtfB78nBXmich5kEKpTbLmu/s1600/donated+boxes.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 160px; height: 120px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMhIBCq41Fi6igA08N4s7VdbfmGt-eAicdDUZG4gQfblbB5jG4Y40f2eLmi2697IvDb98PBujLvhgL4kjKVUyci6icxipXmBEr0tsdPEzX2L8KHG9Cphz-dEtfB78nBXmich5kEKpTbLmu/s200/donated+boxes.jpg" alt="" id="BLOGGER_PHOTO_ID_5515967102131825106" border="0" /></a><br />See that? <span style="font-style: italic;">That </span>is just a small sampling of the donated boxes of diabetic supplies that was sent to my mom's house. What you can't see are the boxes in the closet, the boxes under the bed, and the boxes that haven't yet been handed over to me.<br /><br />It took hours -- many, <span style="font-style: italic;">many </span>hours -- for me to sort through the boxes and repackage everything so that I could transport it back to Ghana in a couple of suitcases. And just when I thought I had it all done, we went to Virginia where we met some of the CWD parents who proceeded to hand me another half dozen <span style="font-style: italic;">huge </span>boxes of stuff for donation. In truth, it was much more than I could haul to Ghana in my limited luggage allotment so some of it has been put in storage to be sent on a ship sometime later (when I raise the money to do that).<br /><br />Anyway, let me give you an idea of what was in those boxes...<br /><br />Glucose meters: About 70 meters, most of them brand new, and many including glucose strips and pokers. Most of the major brands and models were represented -- OneTouch, AccuChek, Contour, Freestyle, etc.<br /><br />Syringes: Boxes upon boxes of insulin syringes (totaling about 2,000 syringes), including those with 1/2 unit markings which are great for smaller children (and which are NOT available here in Ghana).<br /><br />Lancets: More than 50 boxes of lancets, each with 100 lancets inside (and if the Ghanaian parents of CWDs are anything like me then a single box will last for years - ouch!).<br /><br />Insulin Pens and Pen Needle Caps: Including the ones that I got from Children's Hospital in D.C., there are a handful of brand new 1/2 unit dosing insulin pens with several hundred pen needle caps.<br /><br />Books and Log Books: A half dozen books on caring for a CWD, including some brand new versions of the Pink Panther book (which, by the way, is available online <a href="http://www.barbaradaviscenter.org/">here</a>, just click on the online books and slides to the left and you can view each chapter individually). There are also nearly a hundred log books to track glucose and insulin. And I would be remiss if I didn't say that there was also a ton of pumping supplies for my own sweet girl, but that's a blog post in itself.<br /><br />From those donated supplies, I created 25 goody (ziploc) bags which include a brand new glucose meter (OneTouch or Accu-Chek brands only) with glucose strips, poker with a box of 100 lancets, 50 syringes, a half box of alcohol swabs and a log book.<br /><br />I had to limit the number of goody bags for two reasons: First, only OneTouch and Accu-Chek are locally sold, so at least I know glucose strips will also be available here; second, I only had so much luggage space to offer. As it was, I carried 100 lbs worth of donated diabetic supplies in my two suitcases (sacrificing, according to Sean, significant space for the things he wanted to buy!). Those two bags, however, raised a red flag among the TSA people who searched both at the airport (naturally, I didn't find out till after the fact by the TSA notice found among the supplies), but they came through relatively unscathed thanks to some foresight on my part (I included a letter from our Ghanaian doctor stating that it was all for donation to impoverished families).<br /><br />These goody bags will be going to the Children's Unit of Korle-Bu Hospital, to be distributed freely to needy families by Alexandra's doctor, Dr. Lorna Renner. What she will also be getting is another 25 (give or take) glucose meters and glucose strips for brands not locally available; I could not see letting these go to waste, and I am sure she can put these to use at least in the wards, and then when the strips are done, they can be tossed away (a shame, I know, but what can we do if Freestyle and Bayer do not want to come to Ghana!).<br /><br />All of these items were freely donated from parents and caregivers of children with diabetes who live in the United States, and lest you think "what's the big deal since they were (<span style="font-style: italic;">probably</span>) covered by insurance anyway?" Trust me, it <span style="font-style: italic;">is </span>a big deal. Parents understand that these supplies are their child's lifeline and they stockpile (when they can) these lifesaving items for their own child's use. It is only because we understand how difficult it is to manage this disease -- under the <span style="font-style: italic;">best </span>of circumstances -- that we can sympathize with the plight of parents who have so very little that they can offer their children.<br /><br />To us, the cost of that diabetes goody bag is trifling; maybe it was covered by insurance, or maybe it was provided as a sample by the doctor or endocrinologist, or maybe its a tiny percentage of the diabetic supplies stockpile. To a Ghanaian parent, however, it is the difference between feeding their family for the next six months and keeping one diabetic child alive. These items in the goody bag, if bought here in Ghana, would cost a very dear 180 GHC (or about $125). The parents who take their child to Korle-Bu -- a very good hospital in its own right, but with significant funding problems -- are among the poorest in the area.<br /><br />I can't wait to see the smile on Dr. Renner's face when she sees what we've brought her, courtesy of the generosity of friends.Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com3tag:blogger.com,1999:blog-8400140594762351201.post-12108658317344073022010-07-06T16:56:00.008+00:002010-07-06T17:36:33.315+00:00When the honeymoon endsLast month marked the 2 year anniversary of Alexandra's diagnosis. For some parents it seems a little cruel, perhaps even obscene, to mark it with ceremony, but I believe that it must be acknowledged for what it truly is: A blessing. Every single day, regardless of the headache my child has given me, how many more gray hairs I've sprouted, how hoarse my vocal cords are from yelling at her, every single day is a blessing. <br /><br />We've also been blessed by some amazing friends. You read in my previous post that Alex would be getting an insulin pump; well, it's a done deal. The pump is already at my mom's house just waiting for Alexandra to strap it on and put it through its paces. <br /><br />Also at my mom's house is a closet-full of donated pumping supplies and diabetic paraphernalia. I think my mom is going to need a bigger closet. Hardly a day goes by without someone emailing me to ask what they can send or to tell me about how they've mailed off a new glucose meter or strips or lancets or syringes. All I can say is, I am in awe of the generosity and kindness of the CWD community. I am sure I will need a whole suitcase (the 30" one!) just to hold it all.<br /><br />Oh, haven't I told you yet? We're going to New Jersey! Yes, on July 25th we will leave Ghana for a long over-due well-deserved 6 week vacation. Sadly, my hubby won't be coming but he will be working hard to get our new home ready for us when we return, so it's all okay.<br /><br />We are making a lot of plans, including a trip to Washington, D.C. to see a pediatric endocrinologist for Alex. Let me be clear, I love Alex's doctor here -- Dr. Renner is the most amazing compassionate woman you could ever meet. But she will be the first to tell you that she's not an endocrinologist and it was at her recommendation that I pursued an appointment.<br /><br />Boy, let me tell you what a trip it is to get a doctor's appointment in the U.S. I do not envy at all any of the PCWD friends for what they deal with. Two months ago when the trip was first planned I contacted friends for recommendations for a pediatric endo in N.J. I had my poor mom calling all over the place and no one could squeeze us in even for a single consultation. Everyone was booked, no one was taking new patients. Even under these extraordinary circumstances no one was willing to even consider an appointment for Alex. <br /><br />Then along comes my friend Tracy-Ann who works for Sanofi-Aventis, the maker of the Lantus insulin my child relies (i.e. <span style="font-style: italic;">lives</span>) on who tells me she can get me an appointment at Children's Hospital in Washington, D.C. with the pediatric endo there. How about that? Another blessed friend! So that is on the schedule for August. To say I can't wait to talk to her is an understatement. I have a lot of questions and concerns that our doctor can't address right now.<br /><br />What, you wonder? I've got celiac on my brain, truth be told. Alex has been nearly the same weight, give or take a pound or two, for nearly 21 months. Sure, she's grown a couple of inches but no weight gain? And she eats, boy does she eat! But there are also a few other things that are niggling me about her, too, like the unexplained tummy upsets on a regular basis, and her hemoglobin levels have always been low or even below the reference ranges. <br /><br />Maybe that's not evidence enough but it got me looking into celiac testing a few months ago. Unfortunately, that's not a common test here and the only lab that is willing to do it has to send the sample overnight to South Africa. At my cost, of course. We're talking $300 just for shipping it. So celiac testing will wait till we get to the U.S., and then we'll have it done. At the suggestion of another PCWD I contacted the Celiac Center at the University of Maryland and bluntly asked if they'd be willing to test Alex for free. Can't hurt to ask, right? Nope, it doesn't, because the program's founder agreed to do it, so that's set, too, for August.<br /><br />We've also been recently blessed by medical insurance through my husband's job, and Alex's insulin and most of her medical tests are covered. Good thing, too, because we needed a boatload of them done at the 2-year anniversary. One of those tests was something called the c-peptide, and I won't go into it in detail but suffice to say that the body spits out c-peptide in equal measure to insulin, so if your body makes X amount of insulin that it also makes X amount of c-peptide. I'm not an expert at interpreting medical tests, but if the test says Alex's c-peptide level is 165 and the reference ranges for someone who is fasting (which Alex was not, by the way) are between 365 and 1600 then I'm pretty sure it's okay for me to say Alex makes no insulin on her own. With what she'd eaten just before that test I'm pretty sure insulin would have been coming down in buckets if it could have, but it didn't.<br /><br />That makes me kind of sad, but it's what I expected. I saw it coming when her insulin needs rose to nearly 32 units a day from 21 units only three months ago. I think her recent upper respiratory infection might have hastened the honeymoon's demise. Oh well, what is, is. <br /><br />You've probably noticed, too, that I haven't updated in a while. My friend Leslie, who just came back to Ghana after having been away for a year, noted that I wasn't that uptight anymore. She was just being kind. I am still pretty anal. But I realize that this new normal isn't going to change any more and if I keep allowing it to stress me out as much as it did during the first year then I'm doing a disservice to my daughter, and my sons and my husband. And, more importantly, to me. I plan on being around for a long long time and I have to learn and accept that I can't really be Alex's pancreas, much as I'd like to be, but I can do the best that I can with the tools that I have at my disposal. <br /><br />So, the honeymoon is over. That's alright. I am looking forward to the joys and challenges of the future. Alexandra's diabetes may get me down once in a while, but it won't keep me down. And we have a trip to see my family in less than 3 weeks. No one -- absolutely <span style="font-style: italic;">no one</span> -- could be more blessed than I.Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com2tag:blogger.com,1999:blog-8400140594762351201.post-18315536479537830302010-04-23T08:12:00.005+00:002010-04-23T10:26:03.656+00:00Can you keep a secret? Alex is going to get a pump!This is all very hush hush, and not a done deal. Not yet, only because I haven't received it yet. But, on the basis of my faith and trust in the person who will be sending an Animas 1250 Pump (plus various accouterments), Alexandra, my too sweet girl, will be a pumper by the end of the summer.<br /><br />The story goes like this...<br /><br />A while ago, I <a href="http://forums.childrenwithdiabetes.com/showthread.php?t=50795">posted a request for donations to our CWD forums</a> and got a bunch of expected replies (CWD parents are amazingly generous and kind -- the thought that a D child somewhere in the world is doing without the basics simply because of monetary and logistical constraints physically hurts them)... and one very unexpected one. One very nice lady offered her son's insulin pump, which he doesn't use any longer because he has a <span style="font-style: italic;">different </span>type of diabetes, one that is treated with oral medications as opposed to insulin injections (a very interesting story, by the way, and it would be a disservice to try to accurately explain it here, so I will leave it to Christy to do the relating through her wonderful <a href="http://www.babieswithdiabetes.com/">blog</a>).<br /><br />Now, originally, I declined her kind offer, because I was worried about getting the supplies needed for pumping -- like reservoirs, cartridges, insets -- I mean, that's a whole new language for goodness sake! But then, Inga, another CWD parent, followed up and said that if I took Christy up on her offer, she'd be happy to send me a month's worth of the reservoirs and some other things I would need, because she had a huge supply (CWD parents tend to hoard, and I don't blame them in the least, think Katrina and you'll understand why). I started thinking This.Could.Work!<br /><br />So I backpedaled, and asked Christy if I could rethink my declination. And she happily agreed! She sent me a huge list of stuff that she would include in the box along with the pump itself, and my jaw dropped -- all this?! I'm scared now. How will I ever learn how to use this "thing" to keep Alex alive? I have a degree in finance, not engineering! I mean, I had to read the manual to figure out how to work my Nintendo DS -- an insulin pump? *GULP*<br /><br />But I am going to keep thinking positively, and I've been starting my own stockpile of things that I will need. I figure, if I can get a month or two worth of donations under my belt, I can (little by little) buy the other stuff Alex will need, without breaking the bank. I mean, it already runs us well over $400 a month just on MDI -- add pumping supplies to the mix and we're talking beaucoup bucks. <br /><br />Now, Alex doesn't know the good news <span style="font-style: italic;">yet</span>, so let's keep it our little secret.Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com1tag:blogger.com,1999:blog-8400140594762351201.post-87935130850055375012010-02-26T10:41:00.003+00:002010-02-26T10:50:55.117+00:00Welcome to our Wacky World of WeirdnessHard to believe that several months have passed since my last post, but life does have a way of catching up with you. And truth be told, I’ve been so apathetic of late, that I’ve no energy to do anything, it seems. Maybe I’m a bit depressed, too. I’m missing my home like crazy – 3 years since I’ve last seen my mom. Maybe I just need a hug. <br /><br />I know, enough with the pity party, get on with it!<br /><br />Anyway, yeah, three months. It’s been a crazy three months. Alex celebrated her 9th birthday during this time (she’s a groundhog baby, by the way), and she has grown so much taller. No weight gain, which is exceedingly worrying to her daddy, but she has grown a few inches. So, if doc ain’t worried, I ain’t worried. <br /><br />Her little body is changing changing changing. Her insulin requirements have gone crazy – up then down then down some more then up again. Part of that craziness has been because of scarily unexplained fevers that she had for well over a week last month. Every morning at 2:00 am (an insane time, if ever there was one) I’m up checking her sugar, and as I grabbed her wrist I could just feel the heat pouring out of her. Like a blast furnace, it was. I grabbed the thermometer to check -- nearly 104F. Not good at all. It took a combined dose of Tylenol and Advil to bring it down, but then I found that as soon as they started to wear off, her fever would creep right back up. Funny, aside from the fever, she says she didn’t feel that bad. Granted, she had a bit of a sore throat for a few days, but no tummy bug, no earache. <br /><br />We’d just seen her doctor for her quarterly D-check-up about a week before, and I had the doc give her a good look over, and specifically check her ears. Not so much for a sign of infection, but for something else. About a month before, Alex was playing in the room with some little beads. And I heard her counting the beads – 20, 21, 22, 23. A little while later, she asked me what would happen if she put something in her ear. (Are you rolling your eyes right about now?) Naturally, I asked, “Why, did you put something in your ear?” “No,” she says, “just asking.” Okay. I go back in the bedroom and see the beads – 20, 21, 22… where’s 23? No 23. Okay. Alex comes back in and we do the song-and-dance routine again and she still insists she put nothing in there, but I’m welcome to look, “if you want to.” Okay. I look. I see nothing. I do the hydrogen peroxide (just like our mom used to) in the ear bit and they each bubble up like crazy (please don’t judge my daughter’s cleanliness by this, I generally subscribe to the don’t-put-anything-smaller-than-an-elbow-in-your-ear school of thought, she’s really a very clean kid). <br /><br />Anyway, doc takes a look and finds nothing in her ears (just wax), and only a bit of redness at the back of her throat. Doc suggests an antibiotic if she keeps complaining about her throat. A few days later, when the fever starts up, I decide that we need to take the antibiotic route, and we get the most basic of all – the pink stuff. Amoxicillin. I was unusually vigilant in administering it; she got it exactly when she was supposed to and finished the whole course. But, still, nothing helped. The fevers continued every single day and every night. <br /><br />On Sunday, I call the doctor and she tells us to come in to the hospital, so off we head to Korle-Bu. Despite the pain reliever I’d given her, the fever still rages and the doc orders some blood work and a blood culture, and they want to give her an injection of Rocephin which is supposed to be an extremely powerful antibiotic, but it only works for 24 hours. So, Alex and I are in the emergency room, and we’re seeing the doctor on call. She tells me that our doctor said that because of the amount of blood they need and the Rocephin that they should put an IV line in her hand. The doctor assigned to do the IV asks Alex if she’s going to cry about it. I tell the doc she needn’t worry; Alex is very brave and can handle it. Well, little did I know that this particular doc failed her class in putting in IV lines. Alex didn’t cry at the first attempt (though I did see her biting her lips), but on the second try, the silent tears just flowed. The best the doc could come up with was, “sorry.” Really, this is the pediatric ward; you’d think these docs would have a little sympathy for the children in their care. This one didn’t. Apparently, she failed compassion class, too. Bitch.<br /><br />So blood is bottled up and hubby has to run the tubes all the way across the hospital compound to the main lab (and he knows where it is because he had to run there to get the empty tubes!). Unfortunately, it will be days before preliminary results are in, and a week before the final lab results come up. While Sly is out, he’s also been charged with buying the Rocephin from the pharmacy, as well as the antibiotic we’re to take home. The children’s (liquid) version is a hefty GHC 40 and we don’t have enough money, so we get her the adult’s (tablet – <span style="font-style:italic;">horse </span>sized tablet) version instead which is half the cost.<br /><br />A (nice) older nurse is preparing the Rocephin for the injection. And she comes over with it and tells Alex just to hold still and “grandma” is going to inject it very very slowly into the catheter. Alex, trooper that she is, looks at me and then holds her hand out. Two seconds later, as the nurse slowly injects, Alex says, “I think I’m going to vomit.” One second later, she does. All over me as I’m trying to catch it in my hands (oh, what we mothers do for the sake of our children). The nurse is yelling for someone to bring over a kidney basin, but everyone is ignoring her. <br /><br />Finally, injection finished, blood work drawn, we head home. Exhausted and smelly. <br /><br />It would take the whole week’s worth of antibiotic and regular Tylenol and Advil to keep the fever under control. Malaria test – negative. Preliminary blood test – negative. Final blood test – negative. So, it seems we’ll never know what was wrong with our Alex. We only know what the sickness did to her.<br /><br />Her body went wacky. Whereas in the past I could give her a single unit of Humalog and she’d drop between 4 and 5 points mmol (that’s between 70 and 90 mg), a single unit this time dropped her twice that, sometimes even more. One night, just before the fevers started, when we were conservatively correcting a pizza high, the two units of Humalog that I gave her <span style="font-style:italic;">should </span>have been fine. Instead, 45 minutes after the shot she complained that her eyesight was blurry. I’m thinking she’s spiking from the dinner. No, she’s plunged from 16.9 to 1.9 (from 304 to 34). It took several juice boxes and glucose tabs to even bring her up into range. I will always recall that day as the one when I nearly killed my own daughter. I know, not my fault, it is D’s fault. But I gave her the injection, it doesn’t assuage my sense of guilt. <br /><br />We are only just now, a month later, getting back to where she was before, in terms of blood sugar and insulin needs. For a long while, I just had to let her blood glucose run high and conservatively correct – no such thing as a pre-bolus then. I wasn’t even allowing her to take her insulin pen to school, because I couldn’t trust it. Her numbers for the month of January are as ugly as I’ve ever seen them (but very pretty on a graph!) and I suspect her A1C will have gone up as a result. Oh, well. <br /><br />As much as this is a horrible, generally unpredictable disease, I prefer it when it’s just a <span style="font-style:italic;">normal </span>horrible, generally unpredictable disease. This kind of wackiness, I can do without.Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com2tag:blogger.com,1999:blog-8400140594762351201.post-4875765005289185952009-11-12T07:59:00.007+00:002009-11-12T08:10:24.187+00:00Open letter to our friendsThose of you who know me well know that I am one of those people who, as a child, was always in search and support of a good cause… I trick-or-treated for Unicef, raised money for “Jerry’s Kids” with Muscular Dystrophy by knocking on doors, walked 20 miles with Christine or Josie for a pledge of 10 cents a mile in support of the March of Dimes. As I grew older, I did my bit with United Way and Salvation Army, too. It seemed there was always some needy kid who I was compelled to help or research group to be funded. There was always a cure on the horizon for lots of horrific diseases and disabilities.<br /><br />But I did that without any <span style="font-style:italic;">real </span>personal involvement. I didn’t know any of <span style="font-style:italic;">those </span>kids. I was sympathetic to their plight. But I had no had no real feeling for what they endured.<br /><br />Now, I have a new cause. And this one I embrace with all my heart and soul and every single fiber of my being, because it affects my youngest child. Some of you may not know this, but a little more than a year ago, our daughter, Alexandra who was 7 years old at the time, was diagnosed with type 1 diabetes, or what used to be called juvenile diabetes. <br /><br />Now, I didn’t know anything about diabetes. I knew Mary Tyler Moore had it, but couldn’t figure why it was called “juvenile” diabetes – certainly she was no juvenile. I knew diabetes had to do with sugar and sweet stuff, but I didn’t know anything else.<br /><br />Boy, what a difference a year makes. <br /><br />I’ve learned that type 1 diabetes is an auto-immune disease; that a person’s body basically attacks itself – in this case, the pancreas – and that nothing a person did or didn’t do could have prevented it. No one knows why some people get it and others not. The pancreas no longer produces insulin, a hormone needed to convert the sugar and carbohydrates you eat into energy. <br /><br />Without insulin, plainly speaking, Alexandra will die. But insulin – as wonderful as it is – is <span style="font-style:italic;">not </span>a cure. <br /><br />The only cure is a cure. <br /><br />But there is hope on the horizon, and it takes the form of Dr. Denise Faustman of Massachusetts General Hospital. Dr. Faustman has actually cured type 1 diabetes in lab mice, with an FDA-approved drug that is already on the market. The problem is, because the drug is already on the market and widely available, there’s just no financial incentive for the pharmaceutical companies to embrace Dr. Faustman’s efforts.<br /><br />I won’t bore you with the details. Suffice to say it’s something I’ve researched, and I am more than hopeful that within my daughter’s lifetime there will be a cure.<br /><br />But the cure won’t come without funding. The Lee Iacocca Foundation has contributed $10 million to jumpstart the human trials, and money is trickling in through grassroots organizations such as one I’m happy to be a small part of – <a href="http://www.helpcurechildhooddiabetes.org/Home.html">Help Cure Childhood Diabetes</a>.<br /><br />So, if you’ve stuck with me this far and you knew me as a child, you know where I’m going with this… please help. Your donation toward research for a cure would be appreciated more than you can ever know. This <a href="http://www.helpcurechildhooddiabetes.org/Alexandra.html">link</a> will take you to Alexandra’s web page and from there you can link to the donation page at Massachusetts General Hospital. <br /><br />And if you just can’t make a donation right now – times are tough here, too, I understand – I’d appreciate your prayers instead.<br /><br />With thanks from the bottom of our hearts…<br /><br />Barbara and SylvesterBarbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com1tag:blogger.com,1999:blog-8400140594762351201.post-57571816169591801912009-10-26T15:34:00.004+00:002009-10-26T15:46:30.578+00:00Playing catch up<span style="font-family: arial;">It is not easy to get back into the swing of things, once you’ve been out of the loop for a while. I’ve neglected this blog and no one except my Facebook and CWD friends have any clue what life has been like for us here in the jungle over the past couple of months. Mostly, it’s because it’s been relatively uneventful. That’s not to say that </span><span style="font-style: italic; font-family: arial;">nothing </span><span style="font-family: arial;">ever happened. Because this is type 1 diabetes we’re talking about, and something is </span><span style="font-style: italic; font-family: arial;">always </span><span style="font-family: arial;">happening.</span><br /><br /><span style="font-family: arial;">June 25, 2009: RIP OneTouch Ultra 2 Glucometer</span><br /><br /><span style="font-family: arial;">This is Alexandra’s 1 year anniversary of her diagnosis. Her meter – her very first glucose meter 2 – up and died on us that evening. (Ralph Nader would have had a field day with that fact, I think.) Oh, we tried to revive it; we changed the batteries, opened up a package of new glucose strips, all to no avail. It just would not work. C’est la vie, right? But, I couldn’t let it RIP, no way. It seemed to me that after only a single year, it should still be in good working order. I mean, we spent nearly $100 on that meter (sans glucose strips, by the way) and while I had other meters we could use, it was the principle of the thing, ya know? So I emailed LifeScan (which is a Johnson & Johnson Company) and complained. And what do you know, within two days I had a response from a local distributor. Yes, my meter was still under warranty and would be replaced. Whoo hoo! The identical meter is now back on our headboard. Bonus discovery! We found out that the distributor (Palb in Kaneshie) sells glucose strips to the public at GHC 50 for 50 strips. That’s good to know… and waaay cheaper than you can buy it anywhere else in Ghana. </span><br /><br /><span style="font-family: arial;">July 27, 2009: Lantus trouble </span><br /><br /><span style="font-family: arial;">We buy 5 cartridges of 300 units at a time, and I had opened one up that day, given Alex her shot and then noticed that already nearly 80 units were missing. Went to go get another vial, and there was no other vial! We were going through these things at an astronomical rate! Alex uses a mere 13 units a day, and even given an extra 4 units for the pen priming, there’s no way we could have finished 4 (and been on our 5th!) in only three months. So, silly old me, I email the Lantus people (Sanofi-Aventis). They put me in touch with the local distributor who agrees to replace the “missing” Lantus. I head out to the pharmacy with Alex’s insulin pen and the Lantus cartridge, and the representative comes down. He’s a nice young man just aching to help. Within a relatively short while, I’ve got two replacement cartridges and a new insulin pen (which doesn’t work for Alex, but that’s another issue). The nice young man also told me where I could find Lantus is Tema, so I don’t have to drive so far.</span><br /><br /><span style="font-family: arial;">So, two complaints solved to my satisfaction. I was happy about that. I am not so happy to think about all of the other local people who maybe have suffered the same sort of problem but didn’t know they had any recourse. </span><br /><br /><span style="font-family: arial;">August 20, 2009: Barbara learns a lesson</span><br /><br /><span style="font-family: arial;">I hate to be on the last cartridge of insulin before replacing it. You just never know. I had just opened the next to last cartridge and remembered my new friend from Sanofi-Aventis telling me about the local pharmacies that stock it, so I hightail it over to the first one. They don’t have it, but say they can order it for me. It’s a rinky-dink little place, and I’m not all that impressed. For what it’s worth, I am a pharmacy freak – I love looking at bottles and packages and drugs and wandering up and down the aisles. This had none of that.</span><br /><br /><span style="font-family: arial;">Then I head over to the other pharmacy that was suggested. Now, this is more like it! Bigger, cleaner, brighter, lots of drugs and a very nice pharmacist dressed up like a pharmacist! But they don’t have the Lantus in stock either, but they can order it for next day delivery! “What’s the price?” I enquire (knowing, of course, how much it costs me if I go directly to the distributor). Oh, well, they’ll have to see if the price went up but last time it was GHC 90 (I know it’s now GHC 95). </span><br /><br /><span style="font-family: arial;">So here I am, naïve little me, thinking okay, even with a mark-up, it’s probably not gonna cost more than GHC 110. GHC 130! How’s that for a mark-up? Alex and I walk in the next day to pick it up and I almost passed out when he told me the price. I sputtered, “Wow! That’s some serious mark-up you guys put on this.” And the pharmacist (different one than the day before) says, “Really? We only mark it up 33% -- other pharmacies mark up 40%!” Um, I don’t think so. “Well,” I tell him, “we’ve got a problem, because all I’ve got is GHC 110.” The guy looks at me and says, “So what do we do?” I’m thinking, “What do </span><span style="font-style: italic; font-family: arial;">we </span><span style="font-family: arial;">do? How about </span><span style="font-style: italic; font-family: arial;">I </span><span style="font-family: arial;">walk out of here leaving you with cold insulin in your hands and I go to the distributor and save myself GHC 35.” I say, quite frankly, “This is all I’ve got, take it or leave it. I wasn’t expecting a mark-up like that and I can’t afford it.” He’s clearly not happy, but he either sells it to me for that price or it sits in his fridge… I mean, what’s he gonna do, hold Alex for ransom?</span><br /><br /><span style="font-family: arial;">Long story short, he calls the other pharmacist who agrees to mark it up <span style="font-style:italic;">only </span>10%. Barbara learns her lesson: Cheaper to buy directly from the wholesaler, all things considered.</span><br /><br /><span style="font-family: arial;">October 12, 2009: The Humalog Dilemma</span><br /><br /><span style="font-family: arial;">Alex also needs Humalog; it’s a fast acting insulin and is one of the primary weapons in the fight against high blood sugar. She was running low (I sheepishly admit it, she was down to her last cartridge), so I called up the pharmacy who distributes this and was told that they have it in stock. I draft a letter and pull the money out to buy it and send our taxi driver, Ekow, to the pharmacy in Accra.</span><br /><br /><span style="font-family: arial;">An hour after he leaves me, I get a call from him. He’s at the pharmacy and they have the Humalog but it expires 10/09. Note to self: REMEMBER TO ASK ABOUT EXPIRY DATE NEXT TIME! I get the pharmacist on the phone, and he confirms they’re out because all of their supplies have been sent to Korle Bu Hospital, except for this package which is expiring in three weeks. “Do I want it?” the pharmacist wants to know. Of course, I don’t want it! It’s for an 8-year old girl; she’ll never finish it all before it expires. The next shipment isn’t coming in until next year, I’m told. I call my taxi driver and tell him to forget it. </span><br /><br /><span style="font-family: arial;">A few days later, I decide to drive to the hospital to find the Humalog, and Ekow takes me there. Supposedly, you’re supposed to have a prescription at the pharmacy, so like a good consumer I head up to find a pediatrician who can write one out for me, since Alex’s main doctor isn’t around. I find no one I know, but do find a surly doctor who looks down her nose and tells me to have a seat in the waiting room till she can get around to me. I’ve got little patience for beaurocracy, so within minutes I’m out of there.</span><br /><br /><span style="font-family: arial;">I tried the first main pharmacy, and they’re willing to help me (after all, the universal language in Ghana is cash!) but they’ve not got Humalog; they’ve got Regular and Lantus (good to know for later, but right now I don’t really care) but no Humalog… maybe one of the other pharmacies on the hospital grounds. Off I go in search… after the third pharmacy, I’m starting to get frantic that I’ll not find this stuff and have to rely on Regular insulin. I spot one of Alex’s doctors walking around and she directs me to the Diabetes Clinic. Saddest place (well, next to the children’s wing) that you ever want to see. They’ve got Humalog, but with the same expiration as the one from the wholesale distributor. I am sincerely frustrated at this point. I head back to pharmacy #1 and buy the Regular, just in case.</span><br /><br /><span style="font-family: arial;">I go online looking for commiseration from my CWD friends, and learn that it’s alright to use the expired insulin, because the pharmaceutical companies are usually very liberal in their dating, so that they don’t run into lawsuits and such. It’s not like on October 31st that the insulin will instantly self-destruct, it may just degrade over time. That news comes as a major relief to me.</span><br /><br /><span style="font-family: arial;">So I tell my husband to pick it up from the pharmacy, after I confirm again that they’ve got it in store. This time, without my even asking, they advise me that it will expire at the end of the month. I tell them it’s alright, I want it anyway and that my husband will be there to pick it up later in the day. </span><br /><br /><span style="font-family: arial;">You can imagine my relief when Sly came home that night and handed me a box of Humalog 75/25 Mix!!!! What! They screwed up the package in the pharmacy, and Sly didn’t think to check the box (and to be honest, I’m not convinced he’d have known that it wasn’t what I really needed, anyway). </span><br /><br /><span style="font-family: arial;">Here we go again.</span>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com0tag:blogger.com,1999:blog-8400140594762351201.post-68740481795106152872009-08-31T16:01:00.004+00:002009-08-31T16:42:29.296+00:00"I’m low, I’m low, I’m low."She was definitely low. The D-demon had reared its ugly face that day; fighting with her brothers, slamming doors, answering back – <span style="font-style: italic;">screaming </span>back, actually – just generally behaving very very badly. The D-demon couldn’t be restrained. Oh, we tried. God knows, we tried. It all started like this…<br /><br />Sunday, August 9th began like every normal day. I awoke and made a cup of coffee, surfed the net a bit and then at about 8:30 went back into the bedroom to check on Alex. She had been running slightly low overnight, which I attributed to a long day of swimming on Saturday. Not a big problem, just a matter of being sure some fast-acting glucose is on hand to prop her up a bit. Alex can gobble glucose tabs in her sleep.<br /><br />The morning was uneventful, but maybe the D-demon was just still sleeping. I don’t know. By lunch time, though, it was obvious the D-demon was surfacing. Out of nowhere and for no good reason, there was screaming. Then fighting. And throwing things. I grabbed the D-demon by the arm and banished her to the bedroom. I tried begging and reasoning and holy water, but nothing worked. The D-demon was as evil as ever…<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRLSZYq6jvyB7Q2i5L6jIpAMEbMAob-hGbBDD0zFj8DYfsQrabh1PBMbRrW95O5e2ot5aOWKcjg2uVPU6JrnPNFpeNNmcKh5kDVN8PWTz1Xv6vm79yKF_p5XXApuNZZUo_Eb8gHncbsyHF/s1600-h/13072009054.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRLSZYq6jvyB7Q2i5L6jIpAMEbMAob-hGbBDD0zFj8DYfsQrabh1PBMbRrW95O5e2ot5aOWKcjg2uVPU6JrnPNFpeNNmcKh5kDVN8PWTz1Xv6vm79yKF_p5XXApuNZZUo_Eb8gHncbsyHF/s200/13072009054.jpg" alt="" id="BLOGGER_PHOTO_ID_5376169013537164610" border="0" /></a><br /><br />Me: “You could have hurt your brother by throwing that at him.”<br /><br />D-Demon: “That’s sweet for him.” (Translation: Tough shit.)<br /><br />Me: “Get in your room and stay there! Don’t come out till you’re normal!”<br /><br />Then I slammed the bedroom door, wedged a crucifix through the door handle and sat down and prayed. Okay, I didn’t pray, but I was mumbling under my breath. Then I went back to my laptop and got back to the editing work I had been doing before I was so rudely interrupted.<br /><br />I kept meaning to get up and check on the D-demon. But 5 minutes stretched to 10 and 10 minutes stretched to 20. And before you knew it an hour had passed. And it was quiet in there. Too quiet. <br /><br />I opened the bedroom door, and immediately heard a low monotone voice repeating… I’m low, I’m low, I’m low. It was my Alex, not the D-demon, lying face down on the bed in only her underpants. My daughter was low and she knew it and she was scared. I grabbed the meter and squeezed out a drop of blood. I saw a number that I never hope to see ever again in her life – 1.0. That’s a frightening – <span style="font-style: italic;">terrifying </span>– heart-stopping number.<br /><br />I rushed into Mike’s room to grab his stash of Lucozade (I’d address this food hoarding issue with him later, but now, I’ve got another emergency to deal with) and raced back forcing her to drink. Fourteen minutes later, she’d only gotten up to 3.5. I tried more Lucozade and waited another few minutes. Whew. Finally, she’s at 9.2. High. Now we’re in the comfort zone. I made her some bread with butter and she ate it nicely.<br /><br />Once my blood pressure was back to normal, I apologized to her. I told her that I never should have allowed her to go to bed without checking her first. The D-demon cannot have that kind of control over either of us. Even if I would have had to hold her down for a blood drop, I should have done it. You see, the D-demon is a tricky devil – used to only come when her blood sugar was high. No more. Now, the D-demon surfaces whenever it wants.<br /><br />With perfect 20-20 hindsight, I realize that I did a couple of things wrong. I gave Alex her insulin for lunch and cookies, except that she didn’t eat the cookies ‘cause she didn’t like the cookies. Then I forgot to give her a replacement food for the cookies. Combined with the lows from yesterday’s exercise and my anger/frustration with the D-demon – well, it was a disaster of Hindenberg proportions.<br /><br />As I said, I apologized to her. And you know what, Alex wouldn’t accept it! Nope, I tried and tried to take the blame for her low and she would have none of it. She told me that it was all her fault. Those are some very mature words coming from an 8-year old who has to accept much more responsibility than she should have to.<br /><br />Now, I feel really guilty. And really proud.Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com3tag:blogger.com,1999:blog-8400140594762351201.post-38034041317396765042009-06-26T14:11:00.009+00:002009-06-26T14:24:53.263+00:004238<o:smarttagtype namespaceuri="urn:schemas-microsoft-com:office:smarttags" name="country-region"></o:smarttagtype><o:smarttagtype namespaceuri="urn:schemas-microsoft-com:office:smarttags" name="place"></o:smarttagtype><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><!--[if !mso]><object classid="clsid:38481807-CA0E-42D2-BF39-B33AF135CC4D" id="ieooui"></object> <style> st1\:*{behavior:url(#ieooui) } </style> <![endif]--><style> <!-- /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:"Times New Roman"; mso-fareast-font-family:"Times New Roman";} @page Section1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} --> </style><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> <p class="MsoNormal"><span style="line-height: 1.6;">One year on…</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Alexandra has now had type 1 diabetes for a single year.<span style=""> </span>In that one year, she has gone from blood sugars that averaged in the mid-20s /mmol (that’s 400 to 600 /mg) to blood sugars that average less than 7.0 /mmol (125 /mg). <span style=""> </span>For reference, a non-diabetic has blood sugars of less than 100 normally.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">At diagnosis, her A1C, which measures the sugar in her blood over a 3 month period, was 14.7%.<span style=""> </span>That equates to 22.4 /mmol (or 404 in the <st1:country-region st="on"><st1:place st="on">U.S.</st1:place></st1:country-region>).<span style=""> </span>Her most current A1C, done a few days ago, was 6.5% which equates to 7.2 /mmol (130 /mg).<span style=""> </span>That’s a full point lower than it was last March.<span style=""> </span>People with type 1 diabetes would love to have an A1C like that.<span style=""> </span>And parents of children with type 1 diabetes would <i style="">kill</i> to see that for their child.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">That A1C does not come easy.<span style=""> </span>It calls for lots of sacrifices, from all of us, Alexandra most of all, naturally.<span style=""> </span>That 4,238 represents 2,718 finger pricks to check her blood sugar plus 1,520 injections.<span style=""> </span>Give or take a handful, when maybe I forgot to log it.<span style=""> </span>On average, though, nearly 12 times a day, my child has to have herself poked with a needle or a syringe.</p><p class="MsoNormal"><br /><span style=""> </span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">In a single year:<span style=""> </span>4,238.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">It’s been a long year.<span style=""> </span>One in which I’ve aged probably ten-fold.<span style=""> </span>I haven’t yet slept a full night through.<span style=""> </span>I miss that.<span style=""> </span>I also miss the spontaneity of our lives; everything has to be planned and thought through.<span style=""> </span>I miss the sweet girl who used to live with us, who is occasionally replaced with her demon double.<span style=""> </span>I really miss the “before” diabetes days.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">But the after is what we’ve got to live with.<span style=""> </span>And live with it we shall.</p><p class="MsoNormal"><br /><span style=""> </span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">And one year on, I’d be remiss if I didn’t thank the people who helped Alex achieve a very successful first year… people like Michelle, Jane, Adjoa, Carla, Beth, Paula, Tim, Melissa, Scott and probably another dozen wonderful people who I hope will forgive me for not specifically mentioning them here.<span style=""> </span>They’ve helped us by providing meters, strips, insulin pens, i-ports and all of the things that Alex needs to live her life to the fullest.<span style=""> </span>And I can’t put a price on the emotional and psychological support I get from friends all over the world, friends who share with me one single all-encompassing value:<span style=""> </span>We each love a child who has diabetes.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Most of all, I want to thank my mom, because we couldn’t have done it without her.<span style=""> She's sent umpteen care packages, all packed with necessities and goodies. And she'd be here in a minute if I asked her to be. Don't worry, mom, I won't ask. ;-) <br /></span></p><p class="MsoNormal"><br /><span style=""></span></p><p class="MsoNormal"><span style="">Last, but not least, I want to thank Alexandra. She didn't ask for this stupid disease, and no, she didn't do anything to get it. But, she does what she has to do, usually without a grumble and sometimes even with a smile.<br /></span></p><p class="MsoNormal"><br /><span style=""></span></p><p class="MsoNormal"><span style="">She's still my hero.</span></p><p class="MsoNormal"><br /></p><p class="MsoNormal"><span style="">Please, pray for a cure. <br /></span></p><p class="MsoNormal"><br /><span style=""></span></p><p class="MsoNormal"><span style=""><br /></span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><span style=""> </span></p>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com5tag:blogger.com,1999:blog-8400140594762351201.post-30605767092951777432009-06-22T08:54:00.008+00:002009-06-22T09:21:08.199+00:00All pizza is not created equal<span style="line-height: 1.6;"><span style="line-height: 1.6;"><br />Pizza is almost always the first choice in my household when the question, “what do you guys want for dinner?” is posed. I really don’t ask that question too often, as there are very few places that make pizza that’s anything close to what we know and love in the U.S. Of course, I’ve taught myself to make pizza, and I’ve gotten pretty good at the dough thing. In truth, I like to make pizza when I’m in one of my “moods” so that I can pound the hell – I mean gently knead – the dough to the proper consistency.<br /><br />When I make pizza at home, I know pretty well how it will “respond” to Alex’s blood sugar and I can give her the right amount of insulin at the right time so that there’s very little change in her sugar level from fat spikes. See the tricky thing about pizza is the very thing that makes it perfect -- the combination of cheese, pizza sauce and dough. I've got it figured out that each slice of my homemade pizza has 30 carbohydrates in it. Homemade pizza is not a problem.<br /><br />But, once in a great while, we’ll give in and buy a pizza, which we did last night. Southern Fried Chicken has really great red red, pretty good chicken and not too great pizza, but they do know how to do mozzarella cheese. And that, unfortunately, is Alex’s Achilles heel. She loves cheese – the gooier, the better. And this pizza was pretty darn gooey.<br /><br />So before she even chewed her first slice, she got a single unit of Humalog; four slices later she got another 1½ units of Humalog. These weren’t really big pieces, and usually one unit per slice of my bigger homemade pizza pie is enough, so I assumed 2½ total units would be okay. After dinner and just before she went to bed we checked her number and she was actually 4.9 (88 to you /mg people); that would be lovely during the day, but I worried that she might still have insulin on board (or IOB, as we say in the trade – and you’ll need to know this later for the test) so I had her chew a couple of Lucozade tabs and say nighty night.<br /><br />Sometime after midnight I heard her smacking her lips, a lot, as though her mouth were dry, so I figured I’d check her already. I mean, I was already awake having to listen to that lip smacking noise which is second only to listening to my husband snoring on my sleep deprivation scale. Sugar: 19.4; that’s a decimal point short of 350 in America. No wonder she’s smacking her lips like that. Not good. Thinking her fingers might still have glucose tab residue, I wipe her finger down and prick her again. The numbers are not improving at all. 24.1 (433) this time. Okay, so which crappy number do I believe and correct for? I open up the vial to draw out another strip to check her again and the strip flips out of my hand into the basket next to my bed – mind you, each strip is approximately $1 – but I’m not about to go looking for it. I check a third time – 25.1 (451) – this is getting worse and worse.<br /><br />Here it is; the diabetes guy I hate most of all: Fat Spike. Fat Spike is going to do everything within his power to keep me from getting any decent sleep. I will have to figure out how much insulin to give Alex. But first, I’ve got to decide which number to believe. So I do the only logical thing; I figure the average and proceed from there.<br /><br />Now, remember, it’s about 1:15 a.m. Normal people don’t even drink water well at 1:15 a.m. much less do math in their head. By my estimation, I figure she needs 2½ units of Humalog to get her into the high end of her range.<br /><br />Here’s my math:<br /><br />19.4 + 24.9 + 25.9 = 68.6 / 3 = 22.8<br /><br />Ideal daytime range = 4.0 to 8.0<br /><br />22.8 – 8.0 = 14.8 point reduction<br /><br />Each unit of Humalog reduces her by 5.1<br /><br />14.8 / 5.1 = 2.84 units<br /><br />I’m rounding down to 2.5 units since its night time and who knows what’s going to happen. At night, you can’t just trust that you’ve corrected well. Nights are different. You have to check, check and check again. She could come down way too fast and crash while I’m sound asleep. The problem is consistency. At night, there is none. There’s no regular pattern for how well or poorly a correction will work. As it turns out, this one works a little too well.<br /><br />At 1:20 a.m. I give her 2½ units of Humalog and set my clock.<br /><br />At 2:24 a.m. she’s at 11.9 (214) and I think “good.” I set my clock again and go back to sleep. Only I don’t sleep, I think to myself that that’s a pretty steep decline for less than an hour’s worth of insulin. Maybe the meter was wrong. Let me recheck.<br /><br />At 2:32 a.m. she’s 13.4 (241) – that’s better, but still worrying; I set my clock again. Instead of going to sleep I check my email on my phone browser and worry that the constant beep beeping is too loud.<br /><br />At 2:55 a.m. she’s 13.8 (248) – what the hell is going on with her blood? I set my clock again and play with my phone again.<br /><br />At 3:34 a.m. she’s 6.0 (108). Shit. She’s still got IOB of at least 1/3 of her dose. I can’t let her sleep on this, so I wake her up to eat some Lucozade tabs again, and drink some of this nasty glucose drink that my mom sent. This time I don’t set my clock. I’m sure she’ll be okay. Maybe she would have gone lower with the IOB and these extra carbohydrates will counteract and she'll be in normal range when she wakes up. Maybe.<br /><br />Or maybe not.<br /><br />At 5:52 a.m. she’s 10.8 (194). Mea culpa.<br /><br />Pizza wins. Mom loses. Till next time.</span>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com2tag:blogger.com,1999:blog-8400140594762351201.post-53467571473495123112009-06-05T09:38:00.005+00:002009-06-11T10:15:57.543+00:00Who the hell are you? And what have you done with our daughter?!<span style="line-height: 1.6;">Ask the parent of any child with type 1 diabetes and they’ll tell you that it’s like living with a miniature version of Dr. Jekyll and Mr. Hyde. Blood sugars absolutely rule our kids and we work feverishly to ensure that they’re always in range. To say “that is easier said than done” is an understatement, to put it mildly.<br /><br />Alex is no exception. Early in the diagnosis, we could always tell whether or not she was low or high. When she was low, she would get all teary-eyed and upset. When she was high, she was angry and combative. Now, it seems that we’re having trouble differentiating between lows and highs, because she gets crazy for both. And when I saw crazy, I don’t mean like nutty and silly. I mean crazed, as in stark raving mad lunacy. If she were a cartoon character, her face would turn crimson and she’d have steam blowing out of her ears.<br /><br />I’ve got to say, I am glad she’s only 8 years old, because if she were stronger, we’d all be in big trouble. She will physically attack Sean for even the slightest insult or transgression (he’s a notorious teaser). I have to get physical just to get her to calm down. And I don’t mean I physically beat her (though, God knows, I’m tempted), but I have to restrain her (I know she is going to hurt Sean one of these days; fortunately, he doesn’t retaliate, but I know its coming) or push or drag her into the bedroom and force her to calm down, all the while I’m giving her an injection of her potion, er, I mean her insulin. She will throw a tantrum the likes of which you never want to see.<br /><br />The worst part of it all is that when Alex acts like that, it’s all my fault because I could have prevented it from happening in the first place. It’s my job to keep her numbers under control, and if Miss Hyde is unleashed, it’s because I neglected to give her insulin in the right dose or at the right time, or I didn't calculate her carb factor correctly or she ate more or less than I expected her to eat. I’m only human. <br /><br />But so is Alexandra. And I have to remember that, and sometimes remind her brothers and her dad, that she can’t control herself. It takes a lot of will power and effort to calm yourself down when too much sugar is racing through your veins – you can’t think straight, you can’t even see straight. It takes insulin and time, in that order. And a lot of love. Oh yeah, a lot of that. But I’ve got to be honest; it isn’t easy loving her when she’s Miss Hyde, but I do it because I know that her alter-ego – Alexandra – is in there somewhere, ready to emerge from the darkness to be our normal little girl again.</span>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com1tag:blogger.com,1999:blog-8400140594762351201.post-22538910681243305542009-05-14T09:31:00.005+00:002009-05-14T09:44:03.512+00:00Healthilife? I don’t think so.<o:smarttagtype namespaceuri="urn:schemas-microsoft-com:office:smarttags" name="City"></o:smarttagtype><o:smarttagtype namespaceuri="urn:schemas-microsoft-com:office:smarttags" name="country-region"></o:smarttagtype><o:smarttagtype namespaceuri="urn:schemas-microsoft-com:office:smarttags" name="place"></o:smarttagtype><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><!--[if !mso]><object classid="clsid:38481807-CA0E-42D2-BF39-B33AF135CC4D" id="ieooui"></object> <style> st1\:*{behavior:url(#ieooui) } </style> <![endif]--><style> <!-- /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:"Times New Roman"; mso-fareast-font-family:"Times New Roman";} @page Section1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} --> </style><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> <p class="MsoNormal"><o:p></o:p>On Monday, Alex came home from school more excited than normal.<span style=""> </span>I mean, she usually tries to “scare” me at the gate, and runs around like a kid with too much sugar in her (eeek!) until she finally has a shower and calms down.<span style=""> </span>I think the joy of being out of school and being home alone with Mommy is enough to make her nutty.<span style=""> </span>But, as I said, Monday was different.<span style=""> </span>She comes in all excited, and tells me she’s going to be cured!</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Okay, good thing I was sitting down, because news like this is not something you want to learn standing up.<span style=""> </span>Apparently, a guy at the school came in to push his company’s new product, Healthlife.<span style=""> </span>Now, we’ve seen the commercials on television – a bunch of happy laughing kids who rush to get their Healthilife juice box.<span style=""> </span>No marketing novices, these guys, the commercials run during all of the cartoons.<br /></p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">So Alex shows me this purple box of Tropical flavored Healthilife juice.<span style=""> </span>And she starts…</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Alex:<span style=""> </span>Mom, I bought this at school.<span style=""> </span>The guy says it's good for all diseases.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Me:<span style=""> </span>Alex, he’s a salesman.<span style=""> </span>He wants you to buy his juice.<span style=""> </span>That’s all.<span style=""> </span>It’s simply juice.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Alex:<span style=""> </span>No, mom.<span style=""> </span>It’s going to cure me.<span style=""> </span>The guy said if has no sugar in it, and if you’re sick with malaria or <i style="">any disease</i> you are going to be cured!<span style=""> </span>So, can I drink it?<span style=""> </span>Can I drink it, please, huh?<span style=""> </span><i style="">Please?!!!<span style=""> <br /></span></i></p><p class="MsoNormal"><br /><i style=""><span style=""></span><o:p></o:p></i></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Me:<span style=""> </span>Let me see the box.<span style=""> <br /></span></p><p class="MsoNormal"><span style=""><br /></span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Hmmm.<span style=""> </span>My opinion:<span style=""> </span>It’s a stupid juice box.<span style=""> </span>Ingredients:<span style=""> </span>Water, Fruit Juices… oh and here’s the magic ingredient – GLUCOSE!!<span style=""> </span><span style=""> </span><st1:city st="on"><st1:place st="on">Reading</st1:place></st1:city> a little bit more, let’s see, for every 100 ml there’s 12 carbohydrates.<span style=""> </span>Okay, this box is 250 ml, so that’s 30 carbs for a single little juice box!<span style=""> Alex would need 1.25 units of Humalog just to drink this. </span><span style=""></span>“No sugar added,” my ass.<span style=""> </span>What they mean is no <i style="">extra</i> sugar added.<span style=""> </span>Yeah, these guys learned from the marketing masters, alright.<span style=""> </span>Didn’t they used to do that in the states until consumers got savvy?<span style=""> <br /></span></p><p class="MsoNormal"><span style=""><br /></span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">But Alex is an 8 year old girl.<span style=""> </span>And the premise (promise?) is just what an 8 year old girl with Type 1 diabetes wants to hear:<span style=""> </span>That she will be cured if she drinks this.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Mom has to play the bad guy, once again.<span style=""> </span>Alex learns she’s been duped out of 65 pesawas for a juice box that’s no different than any other – except for the price, that is.<span style=""> </span>Similar juice boxes sell for 30 or 40 pesawas.<span style=""> <br /></span></p><p class="MsoNormal"><span style=""><br /></span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">When the boys come home, I ask them about the salesman.<span style=""> </span>They confirm that this guy had a whole crowd of kids around him and he was pitching the benefits of this drink over any other.<span style=""> </span>According to Mike (who did this amazingly funny impersonation), “If ‘dis guy over here drinks Healthilife and ‘dat guy over ‘dere drinks “someting” (sic) else, and ‘dey have a race, ‘den ‘dis Healthilife boy, he’s gonna win dat race every single time.<span style=""> </span>He gonna go very fast because of ‘da glucose.”</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Funny or not, if I had been at that school listening to that crap, I’d have chewed this guy a new one.<span style=""> </span>Telling our kids that this drink is good for malaria and all other diseases is simply outrageous.<span style=""> </span>How many kids bought that “no added sugar” diatribe as gospel, not understanding that it wasn’t the same as “sugar-free.”<span style=""> </span>Too many kids, I’ll wager.<span style=""> </span>According to Mike, pretty much everyone bought a juice box, and they’re now being sold at the canteen.<span style=""> That's great. Just wait till next year when the Ministry of Health reports that incidents of Type 2 diabetes in children has increased in Ghana, now that all of our kids are being tricked into drinking this "no sugar added" drink under the delusion that it's healthy.<br /></span></p><p class="MsoNormal"><span style=""><br /></span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">Sean told me that some of his classmates will chastise him for buying a 7-Up (saying, of course, you're going to get diabetes like your sister -- and yes, Sean does try to explain the difference between Type 1 and Type 2) – meanwhile they’re drinking a Healthilife juice box with the same amount of sugar in it.<span style=""> </span>I asked Sean why they’d even allow this guy to come to the school to sell this product.<span style=""> </span>He said, “Mom, this is <st1:country-region st="on"><st1:place st="on">Ghana</st1:place></st1:country-region>.<span style=""> </span>It’s bribery.<span style=""> </span>He paid someone so he could sell that at school.”<span style=""> </span>How sad that my 13 year old is so cynical.<span style=""> </span>But worse, that he’s also correct.</p><p class="MsoNormal"><br /></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal">And how devastating and evil is it to dash the hopes of an 8 year old girl who only wants a cure and is tricked into believing that she’ll find it in a juice box?<span style=""> </span></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com3tag:blogger.com,1999:blog-8400140594762351201.post-73816897827552921152009-05-08T14:19:00.006+00:002009-06-11T10:22:27.732+00:00We are truly blessed<span style="line-height: 1.6;">There are many ways for a type 1 diabetic to get the insulin they need to live into their body. Alex uses multiple daily injections to get her insulin. An insulin pump is another way (very common in developed countries), but it will probably never be doable here in Ghana. The technology isn’t here, and for the most part, I think the pump companies wouldn’t come because there’s no money to be made on it. Each pump costs in the thousands of dollars and that's just for the equipment. Factor in the infusion sets, and all of the other stuff needed, and it's an expensive never-ending treatment. No, insulin pump companies will not bring this marvel of medicine to Ghana any time soon because it is all about the money (and profits), despite what anyone says. But we recently received two donations, which are probably as close to (insulin) “pumping” as Alex is going to get, at least for the next few years. Two very nice ladies sent us two very interesting things: The Luxura Insulin Pen and the I-Port. <br /><br />Now, Alex already has an insulin pen, and it’s really nice ‘cause it keeps track of the last 16 doses and all, but it only doses in full units. And Alex is still small enough that she occasionally needs a half unit or a unit and a half. If I give her a full unit and it’s too much insulin, her blood sugar gets too low, and if I give her less than she really needs, then her sugar gets too high. We could get around that with a syringe, but that’s neither here nor there. But the Luxura insulin pen doses in half units, and it has been wonderful at keeping Alex’s numbers in better range. Her 7 day and 30 day averages have both gone down. Of course the proof is in the A1C, but that’s next month. <br /><br />The other interesting donation is the I-Port, which is what is known as a delivery device. It allows insulin to be injected through a port. You know how if a person needs an IV in the hospital they stick that little thingy in the back of their hand, and then they inject into that? This is the same concept. The I-Port goes into Alex, a little tiny (really really tiny) cannula stays embedded in her skin (until it removes, that is) and all of her insulin is injected through it. No more individual injections! <br /><br />I was a little intimidated by it when I first saw it, because the needle that the cannula is in is a lot bigger than her pen needles or her syringe, but I was brave and followed the instructions and 1-2-3 in it went! Alex didn’t flinch or wince or anything. For the next 24 hours all of her insulin went into the port. Then, the I-Port came off after swimming, so we had to do another. And another, and another. <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhQaqMAvrFa3wtAIspJcCU6p9rGwVD5voaQFwoObj44vIKTOVo0d6Ec7w3NnuDLFaWYHQ_CwHEGbfnONYmEz2ewhPla4hf_Amv5G24FXDj4CSKp0VbB8JqW9oXQ9dYJHpzWtUOnPGlS6lW/s1600-h/050220091463.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhQaqMAvrFa3wtAIspJcCU6p9rGwVD5voaQFwoObj44vIKTOVo0d6Ec7w3NnuDLFaWYHQ_CwHEGbfnONYmEz2ewhPla4hf_Amv5G24FXDj4CSKp0VbB8JqW9oXQ9dYJHpzWtUOnPGlS6lW/s320/050220091463.jpg" alt="" id="BLOGGER_PHOTO_ID_5333458807543153794" border="0" /></a><br />That's the I-Port in the picture, a few hours before it came off. So far, we’ve been through five of them; each lasting only a day or so. They’re supposed to last between 3 and 4 days, so that has been disappointing. But Alex loves it, because I can give her a shot before food and after food, if she wants more than she originally thought. (Oh, and that Fanta cocktail requires a full unit of insulin all by itself.) That’s the good news. The bad news is that I’ve only got another dozen left, so we’re using it a little more judiciously, and I’m telling Alex to be careful, because she’s accidentally torn out the last two by banging into things.<br /><br />On a sad note, I read a <a href="http://annualreport2008.novonordisk.com/how-we-perform/access-to-health/children-with-diabetes.asp">press release</a> the other day that started off with these disturbing words, <span style="font-style: italic;">“The life expectancy for a child with type 1 diabetes in much of sub-Saharan Africa is typically less than one year.”</span> I emailed the contact person who put out <a href="http://www.novonordisk.com/press/news/news.asp?sNewsTypeGUID=&lMonth=&lYear=&sLanguageCode=&sSearchText=&sShowNewsItemGUID=2cac4c49-2d8f-4955-8199-831ea4d007a5&sShowLanguageCode=en-GB">this press release</a> and asked when we can expect to see this program come to Ghana. I haven't had a response, yet, but I'm hopeful.<br /><br />As we approach Alexandra’s one year anniversary of her dealing with this horrible disease, I can’t tell you how amazingly lucky and blessed we are. I am sickened at the thought that there may be so many “unlucky” children with type 1 diabetes here. All of our children are blessings from God. They don’t deserve this.</span>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com0tag:blogger.com,1999:blog-8400140594762351201.post-90229277208173844002009-04-07T07:58:00.008+00:002009-06-11T10:21:18.546+00:00Parents Day at SOS School<span style="line-height: 1.6;">Yesterday was “Open Day” at the kids’ school. This is the day parents are supposed to come in and review the children’s work. Sly and I really didn’t have any intention of going, because while reviewing the work is all well and good, it’s also supposed to be the day you offer gratuities to the teachers for a job “well done” and that’s not something we condone. We’ve actually had teachers (not at this school, though) who told our kids to be sure that they brought their “parcel” to school the next day. “Or else, what?” I always wondered.<br /><br />But at about 8:15 or so, my phone rings and it’s the school librarian. Thinking it’s a diabetes-related emergency I answer. It’s Alex. She is begging me to come to school and review her work. I’ve got to give it to her for her persistence, so we agree, we’ll be there later.<br /><br />When I arrive, Alex drags me to her seat and shows me her exam papers. Nothing great about them, let me admit that up front. Alex was always a very good student, with terrific marks. At Soul Clinic she was always within the top 10 in her class. But since the diagnosis last year, her grades have suffered. On the board is a ranking sheet; Alex is 26 out of 27. Awful, and truly truly sad.<br /><br />Auntie Cornelia comes over once she’s rid of the other parents and the first words out of her mouth are that she gets very angry at Alexandra, because she just knows that she can do better. Bingo! Time for the D discussion!<br /><br /><br />I explain to Auntie that I agree, Alex can do better, and she has done better in the past. I tell her about Alex being a wonderful student in her old school, always among the top 10. Loves to read, loves math, loves spelling, etc.<br /><br />Then I tell her about diabetes (again) and how low or high blood sugars can affect Alex’s work and her concentration. I tell her that how in the U.S., children with diabetes are protected at school under a federal (504) law, because they are at a disadvantage due to their medical condition and that, by law, those children are given the opportunity to check their blood glucose before taking a test, and are allowed to adjust their sugar level if its not in range, either with glucose tabs for a low or an insulin injection for a high. I tell her that when Alex's blood glucose is low, she’ll be sleepy, and she might have a headache or a stomach ache, and may not be able to concentrate on the paper in front of her. I tell her that when Alex's sugar is high, she’ll be fidgety, perhaps thirsty or need to pee a lot, that she may have blurry eyesight and not even see the exam paper clearly.<br /><br />I think a light bulb clicked on. Auntie Cornelia didn’t remember that we had discussed this all already; she also didn’t realize that Alex was only diagnosed last June. But now she sees and I hope she understands. She and I agree that we will work as a team. On the first day of the next term, Auntie will give me a copy of her syllabus, so I know what Alex is working on. When Alexandra is out of school with sickness – and I reinforced to her that Alex can’t be in school when she’s sick because her sugar levels can quickly turn bad – her homework will be made available so that she can see what she is missing. We also agreed that when Alexandra is going to take an exam, she will be permitted to check her sugar level prior to the test. I don’t think Alex will go high at school, given her fixed meals, but a low is a distinct possibility. I also told the teacher to feel free to ask Alex to check her sugar if she feels that Alex just isn’t "right."<br /><br />Now, I’m not sure all of this is going to help, but I pray it will. Auntie Cornelia told me that she prays for Alex to “get better.” I again had to explain that this disease isn’t going to get better until a cure is found; that Alex will always have diabetes. All she can pray for is that we can manage it in a way that Alex will live a long “healthy” life. That’s my job and it’s more important to me than ensuring that Alex will be in the top 10 in her class. But if that happens as a side effect of better management, I’ll take it.<br /><br />Oh, and I did manage to find an error in the grading of one of Alex’s test papers, so her score on that test has been revised upwards from a 48 to a 69. Not a vast improvement, but enough to move her up two notches to 24 on the ranking board. By the end of next term, diabetes willing, we’ll have her up in the top half of her class, at least. Wish us luck.</span>Barbarahttp://www.blogger.com/profile/12600174510787328234noreply@blogger.com3