Too Sweet Girl in Ghana

Putting Carb Counting Skills to the Test with Delicacies from Ghana

2011-11-08T11:52:00.002Z

When you’re a type 1 diabetic, or the mom of a 10-year oldtype 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 dreamof them. High numbers (bad), low numbers (badder) and numbers that are sheerperfection, though achieved only after herculean efforts.

Yes, we look at numbers incessantly. We hearsomeone blurt out a number, totally out of context, and we think “Ooops, that’sbad.” We see a food – a banana, a stick of gum, a bowl of fried rice and rightaway, we’re trying to guestimate carbs.

That’s the worst part, for me; the carb counting. Or in mycase, the carb guessing. A nutrition scale is part of our arsenal, so it’s notall a hypothesis. We bought ourselves a Salter 1450, a nutrition scale parexcellence, with all the bells and whistles and a few thousand foods on itsvast data base. If we lived in the U.S., it would be ideal.

As we don’t live in the U.S., it’s a little less so. Alexhas been living here in Ghanafor as long as the rest of us, since early 2004. But in her case, that’s themajority of her life. She’s grown accustomed to local foods, and will often eatthem in favor of my own homemade fixings. Alex would rather eat banku andpepper than mashed potatoes. She’d take a bowl of gari soakings over a bowl ofoatmeal, any day. Give her a ball of kenkey and some one man thousand (incrediblytiny smoked fish), and she’s in heaven. Kelewele, abolo, red red, waakye, fried yam and shitorget first preference.

Tilapia, banku and pepper

Dried gari and gari soakings

Fried yam with shito

Kelewele

Abolo

Ga kenkey and pepper

Waakye

Red red

Those things, tasty as they are (and mostly, they are) areNOT on the Salter database. So Alex’singestion of any of them is more often than not a guess at what I think might be afairly 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 beadswork as a good approximation. Plantains are the only “local” dish on the Salterscale, but I have to consider how it’s cooked, with minced ginger and pepper spice, andfried in a giant vat of oil.

Community 1 market

Local foods are not pre-packaged; they’repurchased from a stall at the local market, often wrapped in newspaper. Sizesand quantity often vary from one day, and one seller, to the next, so never canwe assume that what “worked” yesterday will work today. Believe that, and you’re equally as likely to be chasing ahigh as you are fighting a low.

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.

This Artificial Pancreas Gets A Fail

2011-11-04T16:18:00.002Z

Earlier this week, the JDRF – the Juvenile Diabetes ResearchFoundation – took out a huge nearly full page ad in the Washington Post and theNew York Times. A gorgeous little girl stared out, and the caption read “1 in20 people, like Piper, will die from low blood sugar.”

1 in 20. That’s a startling statistic. More than startling,heart-wrenching. I have nearly 300 Facebook friends all of whom have a childwith type 1 – does that mean I will cry for 15 children whose lives will be cutshort by diabetes? Or will I… no, I can’t even think of that right now.

The advertisements were not to raise awareness of type 1diabetes, 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 Foodand Drug Administration to move quicker on approval for the JDRF’s pet project,the Artificial Pancreas, a computerized, closed loop system which integrates aninsulin pump system and a continuous glucose monitor. Essentially (and very basically, I know I'm missing the finer points), the AP woulddispense insulin in response to blood glucose needs, no human interactionneeded. Well, almost, you know what I mean.

Now, quite a few parents are not as happy with JDRF’s newdirection as JDRF would like them to be, and I can certainly see why.

Incredible as it might be for an individual with type 1diabetes to not have to worry about the mechanics of blood sugar control, whichwould be taken over by the AP, those individuals would still have type 1diabetes.

I watched an incredible video the other day, which followeda group of children in Israelwho were all given the opportunity to test drive the artificial pancreas. Itreally is heart-warming to watch it, though I must admit that the little girlwho said that diabetes took up half of her life saddened me. A lot.

At the end of the video, all I could think of was cool. If Ihad an AP for Alex I would love it. Even if it meant she had electrodes comingout of her little body and was hooked to a laptop computer strung off her backin a laptop for the rest of her life.

And then I thought to myself, is that you really want foryour 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.

Low blood sugar. It is an anathema to we type 1 parents. It’sscary enough during the day. We scurry for juice, glucose, anything to bringour child’s bg up. Today we hit a nauseatingly ugly 35, with 1.75 IOB. It wasn’tpretty. Alex dropped down onto the coffee table and wailed “I’m low.” No need. Icould see that, shaky and pale, with tears welling up and spilling over. Goodgrief.

An artificial pancreas? Forget it, she’s got one already andit sucks. I mean, I just nearly killed her.

I’ll just wait. I’ll take one cure, please, thank you.

Got insulin? It does a body good!

2011-11-03T10:07:00.001Z

Day 3 of Diabetes Awareness Month and I have something totell you. I like insulin. In fact I loveinsulin. 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 incase some poor misguided creature stumbles upon this post, I’ll elaborate.

Every body starts off with a pancreas which makes thehormone called insulin. Insulin helps to convert the food you eat into theenergy that you need. Every day, a fully functional pancreas will perfectly dojust 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, nolonger.

As far as organs go, the pancreas – when it’s working – is asuperstar, 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 leastAlex’s is certainly that.

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 toget it into her body some other way.

Manufactured insulin is the genius of two individuals; Drs.Frederick Banting and Charles Best. It was 1922, and the two docs, with a wholehost 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 here.Suffice to say that the pair were awarded the Nobel Prize for Medicine fortheir discovery, and they have my eternal gratitude.

Insulin was basic, back then; it only came in a singleflavor. Now we have several different kinds; fast acting, short acting, longacting, intermediate acting, and combination of two. Some parents, incrediblytalented mixologists, take it a step further and combine three different kindsof insulin at once, to minimize the number of shots their child must take in aday.

The fully functioning pancreas is amazing; it knows exactlyhow much insulin to spurt out in response to the food a person consumes, and itknows exactly when to spurt it out, too. All foods digest differently and thepancreas knows this. Me, as the pancreas-by- proxy, doesn’t do anywhere near asgood a job. Even though we can approximately calculate how much insulin Alexmight need under a given scenario, it’s still a crapshoot.

Insulin has saved many, many people since 1922; before that,they died a slow – an agonizingly slow – death. Starved of food, robbed ofenergy, truly skin and bones. Don’t believe it? Get a load of these before andafter pictures of a child diagnosed with type 1 diabetes and then a few monthsafter beginning insulin injections.

Incredible isn’t it?

And it’s pretty much like that for our children, too. Thetransformation is awesome.

Back then, insulin injections were done using a reusablesyringe that had to be sterilized by boiling, and occasionally sharpened byhand with a whetstone. The needle was terrifyingly long. I can’t imagine howmany children with type 1 cried at the sight of it, and how many parentsinwardly wept every time they had to hurt their baby with another shot of this precious liquid thatwould keep them alive.

Today, we have much better delivery devices. Insulinsyringes come with needle tips that range in size from 5/16” (or 8mm) to1/2" (or 12.7 mm). For people who use insulin pens – handy devices thathold a cartridge filled with insulin and have disposable pen caps –the needlesize is even smaller, only 3/16” (or 5 mm). They still hurt, of course, how could they not? But far less than thesyringes of yore.

Alex started off with syringes – in the “business” we callit MDI for Multiple Daily Injections. Now, she uses an insulin pump, abattery-driven, life-saving, incredibly expensive, incredibly wonderful littlecomputer.

For a type 1 diabetic person, it’s their life supportsystem.

About the size of a cell phone, the insulin pump connects toAlex’s body through a long, skinny plastic tube, at the end of which is a tinycannula that is inserted just beneath her skin. Insulin flows from thecartridge stored within the pump’s housing, at an amount and rate set by theindividual, in this case, me. Alex knows better than to fiddle with thesettings, because just as insulin gives her life, it can take it away just thatquickly. But I won’t go there just now.

The insulin pump has been around for years, butmanufacturers are working hard to make it as small and efficient as possible.Some of the newest ones are now tubeless. Alex’s Pingis not tubeless but it is remote controlled. How cool is that?

Way cooler than this, right?

That’s an insulin pump, circa mid 1960s, held about a gallonof insulin. We’ve come a long, long way.

This blog post has dragged on long enough; obviously I can’tsay enough about the miracle of insulin. But I will leave today’s post with afinal few words:

Insulin Is Not A Cure!!!

A Night in the Life of a T1 Mom: Musings on Vampires and Angels

2011-11-02T09:10:00.003Z

Day 2 into November’s Diabetes Awareness Month and I’m beatalready. And yet last night was a good night. Before going to bed last night at9:00, Alex’s blood glucose levels was a quite respectable 75 mg. We aim for arange between 70 mg and 140 mg and this was perfect. Except it wasn’t, notbefore going to bed, and not with .42 units of insulin still worming its waythrough her body as it worked its magic on the pasta and chicken she ate for dinner.

No, 75 mg is not a good going to sleep number, so I had hertake 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 propher sugar up enough during the overnight hours, or at least until 2:00 a.m.when I wake up to check.

Now, some parents of children with type 1 diabetes have beentold that there is no need for an overnight check. But Ican tell you that the few parents who choose not to wake up and check their child’sglucose level are truly in the minority. Perhaps I am overlycautious, but I am like a fanatical vampire feeling the need to wake up anddraw 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.

I think in the 1228 days that Alex hashad diabetes I’ve slept through four alarms. I remember distinctly because Istill feel guilty about them, and I thank the guardian angel (Dad, I know it’syou, thank you. I love you!) for keeping her safe.

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 alarmwhich kept right on buzzing – only to find her too sweet daughter clammy and pale, andher blood sugar at a heart-stopping 39 mg with nearly 1½ units of insulin stillkicking. 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.

And here's the reason why; I can also give you the names of at least three heartbrokenmoms who know all too well the dangers of somnambular hypoglycemia – a lowblood sugar while sleeping. I may have just coined that term, but nocturnalhypoglycemia is too limiting. It’s not as though our children are any safernapping in the daytime.

But Alex’s 2:00 a.m. check was good; 159 mg – slightly higherthan I’d like but not worth “fixing” and likely a direct result of the aforementionedunquantifiable slug of juice. But that’s how it goes. Her 5:00 a.m. check was a very nice 89mg – not too high, not too low. Just right.

Oh, that it all her bg numbers could be that perfect. But I can dream, can’t I?

November is Diabetes Awareness Month, and We're Celebrating A Life Lived

2011-11-01T08:33:00.002Z

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.

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.

Question #1

Were you aware that Type 1 Diabetes is an autoimmune disease?

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.

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?

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: No one knows why type 1 diabetes happens, it just does.

This much, I can do

2011-09-01T11:56:00.009Z

I know that this tends to be a recurring theme of mine, but I can never ever 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…

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.

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.

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.

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 Dr. Faustman can put it to good use.

Old news and some new thoughts

2011-05-24T15:22:00.009Z

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 Sweet Life'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.

For the most part, that essay was well received by my family, peers and cyber friends. 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.

But not everyone agreed. 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. My actual responses to her emails are in red, my thoughts (i.e. what I should have said) are in blue.

Email #1

Hi Barbara,
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

Anonymous Friend, thanks for your support. Lol :)

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.

How’s things with you? Not going to the states anytime soon are you? I need an insulin pump brought in? ;-)

Email #2

Barbara,
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 also need a White Castle hamburger but I’m not rushing for the plane!

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,

Did she not see the winking eye icon?

But id I were you and my child was sick

Sick? Alex is sick?

I would get my ass home asap.

Say what you really feel, Anonymous Friend.

If your daughetr were to get malaria

been there, done that – twice!

on top pf diabtes or any type f viral infection her life could be compromised,
I think that no child from any country should be brough here to be riased

Don’t you have kids with you, here, in Ghana?

especially a sick one, Lol

Oh, that makes your bluntness (some might argue rudeness) so much easier to accept.

Email #3

Hi Barb,
Did you have Alex through ivf?

No, none of my children were conceived through IVF, but what difference does that make?

I found that part of your story intriguing.
I was in richmond vA for three years, single and not well off. But I had blue cross and blue shield.

If you live in the U.S. insurance is a necessity – you can’t get prescriptions or visit a doctor without it. Here, I can walk into any doctor’s office or pharmacy and buy what I need, with cash in hand. 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. The burden, the onus,, the responsibility – 99.9% of the time – is on the patient or caregiver. In a year, we probably spend all of 6 hours in total with Alexandra’s doctor. The rest of the time, I am the expert. I make the decisions. 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.

I think that the US is better equipped than Ghana in helping all of its citizens when they are sick.

Obviously, you don’t read the CWD forums. 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. You don’t know how often they have to appeal the insurance company’s ruling. You don't know that they're struggling to meet ridiculous deductibles and co-pays. Don’t have private insurance there? Then you’re screwed. You’re at the mercy of Medicare or some other state run program. 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.

I mean that sincerly in terms of quality of life and care.

Do you really not know what’s going on over there? Or do you live in a bubble?

I think the very fcat that you need an insulin pump from home speaks volumes.

Need? We don’t need an insulin pump. I want an insulin pump –who wouldn’t want the best for their child? But in the absence of one, she’ll go back to injections. She will still live.

Also they very fact that here your daugter is exposed to mopre viral infections and malaria.

What? The U.S. doesn’t have its share of infectious disease? Hasn’t you ever heard of the flu epidemic? It seems to occur at least annually there. Alex is one of the healthiest kids I know. Aside from the occasional cold she's never been sick, never been hospitalized.

I have to say I wish you all the best and good luck,
If it were me, I would be in a plane right now on my way home.

You’re not me.

PS,

I cannot wait to go home. I have lived in eight countries and thid place is the pits.

I can’t wait to go home either, I miss my mom. But bear in mind that not every city in the U.S. is better than Accra.

Email #4

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?

I never ever said I was rich, and what makes you think that life would be better there and there’d be more opportunities? 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. Here, we’ve got a house (albeit under construction) that we own outright with no lien. I’m working from home doing something that I like at a wage that is acceptable to us because our overhead is low. My kids are getting a good education and lack for nearly nothing (McDonalds, Chuck-E-Cheese and Dave & Busters excepted).

My husband is Swedish, but Sweden is not a third world country.

My husband is Ghanaian, and Ghana is an emerging market.

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.

I have friends from civilized countries that have lived here, left and want to come back here, in spite of everything. They miss Ghana. You’re overlooking the good here.

This place is the most backwards place I have ver been to.

Again, you are overlooking the good here. You should have seen it twenty-something years ago. Ghana has accomplished great things in the last two decades and is improving regularly albeit slowly. You really can’t compare Ghana to a developed economy; that’s an unfair comparison.

Those emails came in fairly quick succession yesterday, but I responded earlier today.

Anonymous “Friend,”

Obviously you don’t know much about the nature of diabetes so that you are reacting (over?) from a place of ignorance. A person with type 1 diabetes needs only access to insulin and the ability to check their blood glucose levels regularly. 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.

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. 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. And I am not asking that question because I’m so desperate to have the pump to save Alex’s life. No, I’m asking for someone to bring it because I don’t trust the post office. Do you?

You don’t know our circumstances, so it’s really not your place to judge me. You’ve lived elsewhere in the world. Besides the U.S., I’ve not. I know there, and I know here. And I know there is better if you have insurance, but we don’t have U.S.-based insurance. Can we get private insurance if we lived there? Maybe, but at what cost. I’m 50, my husband is 59 and besides our other two we have one child with a chronic, very expensive disease. If we could get insurance it will cost nearly $2,000 a month. A month! You can buy an awful lot of medical services here in Ghana for that, and not necessarily at Korle-Bu.

We have Ghana-based insurance that lets us use medical services at 37 or Korle Bu plus some local clinics, that’s fine. 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. She’s already had malaria a couple of times, and coped just fine. Interestingly, I know when Alex is getting sick long before she exhibits symptoms because of her blood sugar.

As far as her diabetes care, it’s not rocket science, its just monotonous vigilance and it’s my job.

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. But for all intents and purposes, aside from having a chronic disease, she’s a healthy, thriving little girl.

Yes, Ghana is a backwards place. But it is my husband’s country and he is who he is largely because of being raised here. I won’t disparage it for its problems; only try to make it better. This country is my children’s legacy, such as it is, but I’m not ashamed that I live here. 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.

Returning to the U.S. now is not in our cards. We have family there, yes, all of whom have their own lives, their own problems, we visit when we can afford it. Our home is here, our lives are here. We’re not diplomats or expat employees of some international conglomerate. We’re “retirees” in effect, making do with pension, consultant and freelance revenues.

And here is where we’ll stay. I know you mean well, and you’re entitled to your opinion, but unless you walk in my shoes, don’t judge.

P.S. I can’t wait to go “home” (for vacation), either. As soon as I get $6,000 together.

Smart Pump, Now Smart Momma

2011-05-03T08:17:00.002Z

It was last year that Alexandra started pumping. That was only thanks to the generosity of many, many 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.

We’ve used it faithfully, although inefficiently, for the past 8 months or so. 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). 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. Fingers crossed it holds up for a good long while.

Now, I can’t speak for Alex – she’s a kid who really just goes with the flow – but I love the pump. 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.

In all that time, I never availed myself (I mean Alex, of course) of the ezBG or the CarbSmart features of the pump. 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. The pump features use mg, too. And I just couldn’t trust Alex’s conversion or math.

But then I ran out of strips for the (mmol) meter we always use, and had to rely on one of the donated meters. 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. And I have (well, now had) lots of strips and I just hate letting things go to waste.

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 together. 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 so easy!

I know most other CWDs use their pump 24/7. But because Alex is untethered she doesn’t have to. She attaches only when she needs to for boluses. 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).

I can’t believe it took me this long to figure it out. Better late than never, though, right?

Looking forward

2011-03-10T15:05:00.008Z

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.

First, I hit the half century mark on March 7^th. We celebrated with a weekend trip to Atimpoku, which was very nice as it always is. 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. But that’s past and (today, at least) I feel great.

I am looking forward to the second half of my life. And yes, I do believe I will live to at least 100!

The other event? Well, nothing quite as monumental as a 50^th birthday, but let’s just say I have the same degree of determination for the future and a great outcome. Now let me get you up to speed so you’ll know what I’m talking about.

Alex got her A1C results back the other day. (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). Anyway, her A1C was worse (by far) than I expected.

I know. I know. It’s not supposed to be looked at like a report card. 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? It is a report card. I flunked Pancreatic Lab. Oh, I do great in Pancreatic Theory – A+ all the way. But the lab work is 99.9% of the grade, and there’s no A for effort.

So, yeah, the “life-altering event.” Alex’s latest A1C sucked at 8.5%. Far worse than the 7.5% we got in October. Granted, I think she’s had a growth spurt, and the hormones released during growth spurts generally result in higher blood glucose. She certainly looks taller and she’s gained 5 lbs (finally, she’s only been stuck at 60 lbs. for the past 2 years!).

But growth spurt or not, her numbers have been horrible. At school she doesn’t bolus enough so she’s invariably high between 11:00 am and 3:00 pm. We play catch-up boluses because she eats something and forgets to tell me she ate something. Or she refuses to eat the food we just bolused her for, usually resulting in a low followed by a high for overcompensating. As I said, her numbers have been horrible.

Oh, you noticed that there seems to be quite a few months between our A1C tests, huh? Yeah, you would. That’s ‘cause I’m avoiding Alex’s doctor. I kept hoping that I’d get her numbers more in line and that the A1C wouldn’t be this bad. Didn’t work.

Don’t get me wrong, I’ve said it before; Dr. Renner is a lovely woman. She won’t rant and rave or chastise me or make me feel worse than I already do. She’ll likely ask Alex is there’s anything she’s done (or didn’t do) that could have given this result. Alex will smile sweetly and then lie in her face and tell her no. To be honest, Alex could be a lot less difficult and a lot less demanding.

And I guess I could do a lot more demanding and be a lot less accommodating. And there it is. I’ve said it. The problem. I’m the problem. I do not crack down on Alex. I took for face value the words “she can eat anything she wants, as long as she has insulin to cover it.”

The problem is Alex does eat whatever she wants. 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. 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. A fight or a tantrum or some horrible scene ensues if I take them away. By the time that occurs, I’m too exhausted and stressed out to fight back and I give in. Bad mommy, I know.

You have to understand something, with Alex, there’s no such thing as moderation. But that’s all about to change, and Alex knows it. We had a little discussion, she and I and her dad, and this is what we’ve all decided.

New rules:

Alex will be limited to one malt or soft drink over the weekend only.
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!).
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.
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.
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 only if she does), and take the right amount of insulin for what she’s consumed.

And yes, I know it’s a tall order for a 10 year old, but what else can we do?

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.

In Remembrance of a New Angel

2010-10-22T16:11:00.002Z

Just a few short days ago, I witnessed something at once devastating and miraculous that I pray I never ever 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.

On Wednesday morning, I read something that ripped my very soul apart; it read like this, “With heaviest of heart – the passing of Eilish.” 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.

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.

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.

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.

No one ever could have foreseen that Eilish wouldn’t wake up.

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.

We light these candles - in your memory, to honour your life.

We light these candles - to provide solace your family in their time of loss.

We light these candles - as a sign that our thoughts and prayers are with you.

We light these candles - to give ourselves courage, and to lighten our sorrow.

We light these candles - to send you our love, and to light your way onward.

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.

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.

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 that parent – we, the CWD parents – are all that parent, and we share their pain.

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.

The generosity of strangers? No... of friends!

2010-09-12T10:01:00.014Z

See that? That 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.

It took hours -- many, many 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 huge 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).

Anyway, let me give you an idea of what was in those boxes...

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.

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).

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!).

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.

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 here, 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.

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.

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).

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!).

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 (probably) covered by insurance anyway?" Trust me, it is 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 best of circumstances -- that we can sympathize with the plight of parents who have so very little that they can offer their children.

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.

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.

When the honeymoon ends

2010-07-06T16:56:00.008Z

Last 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.

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.

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.

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.

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.

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.

Then along comes my friend Tracy-Ann who works for Sanofi-Aventis, the maker of the Lantus insulin my child relies (i.e. lives) 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.

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.

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.

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.

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.

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.

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 no one -- could be more blessed than I.

Can you keep a secret? Alex is going to get a pump!

2010-04-23T08:12:00.005Z

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.

The story goes like this...

A while ago, I posted a request for donations to our CWD forums 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 different 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 blog).

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!

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*

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.

Now, Alex doesn't know the good news yet, so let's keep it our little secret.

Welcome to our Wacky World of Weirdness

2010-02-26T10:41:00.003Z

Hard 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.

I know, enough with the pity party, get on with it!

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.

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.

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).

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.

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.

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 – horse sized tablet) version instead which is half the cost.

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.

Finally, injection finished, blood work drawn, we head home. Exhausted and smelly.

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.

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 should 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.

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.

As much as this is a horrible, generally unpredictable disease, I prefer it when it’s just a normal horrible, generally unpredictable disease. This kind of wackiness, I can do without.

Open letter to our friends

2009-11-12T07:59:00.007Z

Those 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.

But I did that without any real personal involvement. I didn’t know any of those kids. I was sympathetic to their plight. But I had no had no real feeling for what they endured.

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.

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.

Boy, what a difference a year makes.

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.

Without insulin, plainly speaking, Alexandra will die. But insulin – as wonderful as it is – is not a cure.

The only cure is a cure.

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.

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.

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 – Help Cure Childhood Diabetes.

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 link will take you to Alexandra’s web page and from there you can link to the donation page at Massachusetts General Hospital.

And if you just can’t make a donation right now – times are tough here, too, I understand – I’d appreciate your prayers instead.

With thanks from the bottom of our hearts…

Barbara and Sylvester

Playing catch up

2009-10-26T15:34:00.004Z

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 nothing ever happened. Because this is type 1 diabetes we’re talking about, and something is always happening.

June 25, 2009: RIP OneTouch Ultra 2 Glucometer

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.

July 27, 2009: Lantus trouble

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.

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.

August 20, 2009: Barbara learns a lesson

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.

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).

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 we do? How about I 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?

Long story short, he calls the other pharmacist who agrees to mark it up only 10%. Barbara learns her lesson: Cheaper to buy directly from the wholesaler, all things considered.

October 12, 2009: The Humalog Dilemma

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.

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.

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.

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.

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.

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.

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).

Here we go again.

"I’m low, I’m low, I’m low."

2009-08-31T16:01:00.004Z

She was definitely low. The D-demon had reared its ugly face that day; fighting with her brothers, slamming doors, answering back – screaming 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…

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.

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…

Me: “You could have hurt your brother by throwing that at him.”

D-Demon: “That’s sweet for him.” (Translation: Tough shit.)

Me: “Get in your room and stay there! Don’t come out till you’re normal!”

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.

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.

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 – terrifying – heart-stopping number.

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.

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.

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.

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.

Now, I feel really guilty. And really proud.

4238

2009-06-26T14:11:00.009Z

One year on…

Alexandra has now had type 1 diabetes for a single year. 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). For reference, a non-diabetic has blood sugars of less than 100 normally.

At diagnosis, her A1C, which measures the sugar in her blood over a 3 month period, was 14.7%. That equates to 22.4 /mmol (or 404 in the U.S.). Her most current A1C, done a few days ago, was 6.5% which equates to 7.2 /mmol (130 /mg). That’s a full point lower than it was last March. People with type 1 diabetes would love to have an A1C like that. And parents of children with type 1 diabetes would kill to see that for their child.

That A1C does not come easy. It calls for lots of sacrifices, from all of us, Alexandra most of all, naturally. That 4,238 represents 2,718 finger pricks to check her blood sugar plus 1,520 injections. Give or take a handful, when maybe I forgot to log it. On average, though, nearly 12 times a day, my child has to have herself poked with a needle or a syringe.

In a single year: 4,238.

It’s been a long year. One in which I’ve aged probably ten-fold. I haven’t yet slept a full night through. I miss that. I also miss the spontaneity of our lives; everything has to be planned and thought through. I miss the sweet girl who used to live with us, who is occasionally replaced with her demon double. I really miss the “before” diabetes days.

But the after is what we’ve got to live with. And live with it we shall.

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. 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. 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: We each love a child who has diabetes.

Most of all, I want to thank my mom, because we couldn’t have done it without her. 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. ;-)

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.

She's still my hero.

Please, pray for a cure.

All pizza is not created equal

2009-06-22T08:54:00.008Z

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.

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.

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.

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.

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.

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.

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.

Here’s my math:

19.4 + 24.9 + 25.9 = 68.6 / 3 = 22.8

Ideal daytime range = 4.0 to 8.0

22.8 – 8.0 = 14.8 point reduction

Each unit of Humalog reduces her by 5.1

14.8 / 5.1 = 2.84 units

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.

At 1:20 a.m. I give her 2½ units of Humalog and set my clock.

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.

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.

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.

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.

Or maybe not.

At 5:52 a.m. she’s 10.8 (194). Mea culpa.

Pizza wins. Mom loses. Till next time.

Who the hell are you? And what have you done with our daughter?!

2009-06-05T09:38:00.005Z

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.

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.

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.

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.

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.

Healthilife? I don’t think so.

2009-05-14T09:31:00.005Z

On Monday, Alex came home from school more excited than normal. 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. I think the joy of being out of school and being home alone with Mommy is enough to make her nutty. But, as I said, Monday was different. She comes in all excited, and tells me she’s going to be cured!

Okay, good thing I was sitting down, because news like this is not something you want to learn standing up. Apparently, a guy at the school came in to push his company’s new product, Healthlife. Now, we’ve seen the commercials on television – a bunch of happy laughing kids who rush to get their Healthilife juice box. No marketing novices, these guys, the commercials run during all of the cartoons.

So Alex shows me this purple box of Tropical flavored Healthilife juice. And she starts…

Alex: Mom, I bought this at school. The guy says it's good for all diseases.

Me: Alex, he’s a salesman. He wants you to buy his juice. That’s all. It’s simply juice.

Alex: No, mom. It’s going to cure me. The guy said if has no sugar in it, and if you’re sick with malaria or any disease you are going to be cured! So, can I drink it? Can I drink it, please, huh? Please?!!!

Me: Let me see the box.

Hmmm. My opinion: It’s a stupid juice box. Ingredients: Water, Fruit Juices… oh and here’s the magic ingredient – GLUCOSE!! Reading a little bit more, let’s see, for every 100 ml there’s 12 carbohydrates. Okay, this box is 250 ml, so that’s 30 carbs for a single little juice box! Alex would need 1.25 units of Humalog just to drink this. “No sugar added,” my ass. What they mean is no extra sugar added. Yeah, these guys learned from the marketing masters, alright. Didn’t they used to do that in the states until consumers got savvy?

But Alex is an 8 year old girl. And the premise (promise?) is just what an 8 year old girl with Type 1 diabetes wants to hear: That she will be cured if she drinks this.

Mom has to play the bad guy, once again. 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. Similar juice boxes sell for 30 or 40 pesawas.

When the boys come home, I ask them about the salesman. 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. 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. He gonna go very fast because of ‘da glucose.”

Funny or not, if I had been at that school listening to that crap, I’d have chewed this guy a new one. Telling our kids that this drink is good for malaria and all other diseases is simply outrageous. How many kids bought that “no added sugar” diatribe as gospel, not understanding that it wasn’t the same as “sugar-free.” Too many kids, I’ll wager. According to Mike, pretty much everyone bought a juice box, and they’re now being sold at the canteen. 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.

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. I asked Sean why they’d even allow this guy to come to the school to sell this product. He said, “Mom, this is Ghana. It’s bribery. He paid someone so he could sell that at school.” How sad that my 13 year old is so cynical. But worse, that he’s also correct.

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?

We are truly blessed

2009-05-08T14:19:00.006Z

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.

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.

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!

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.

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.

On a sad note, I read a press release the other day that started off with these disturbing words, “The life expectancy for a child with type 1 diabetes in much of sub-Saharan Africa is typically less than one year.” I emailed the contact person who put out this press release and asked when we can expect to see this program come to Ghana. I haven't had a response, yet, but I'm hopeful.

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.

Parents Day at SOS School

2009-04-07T07:58:00.008Z

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.

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.

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.

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!

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.

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.

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."

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.

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.

FYI: Saliva has nothing to do with Type 1 Diabetes

2009-04-03T11:02:00.008Z

It’s been a relatively uneventful couple of weeks. Alex has had fairly stable numbers with her blood sugar readings, we got her A1C report which went up .1 this quarter to 7.4 (not too terrible, but we’re still tweaking with split Lantus and stuff), and we went for her quarterly appointment with the doctor. Kind of boring stuff. Don’t get me wrong – I like boring, especially when it comes to diabetes! I’ll take boring any day of the week over any kind of blood sugar-induced excitement.

The other day, we had something non-boring occur. Sly, the kids and I met with a very nice young woman from Vancouver, B.C. who is doing a research paper for her Master’s degree. Jillian’s a student at the London School of Economics which, if memory serves me correctly, is a pretty “decent” school. Her report is to be on the psycho-social aspects of youth with Type 1 diabetes in developing countries – kind of a comparison of the support network. She read this blog and contacted me and wondered if we’d be available for an interview. Boy, would we?! You know me; I’ve always got a lot to say, especially about diabetes care in Ghana.

So, after a late start getting to the restaurant (you know “us” Ghanaians, late for everything!), we finally arrived at 11:15 at Chicken Lickin’ in Osu. Jillian arrived a few minutes later (her driver got lost) and after the formalities we sat down to order drinks and food.

First things first; Alex had to check her sugar. Alex displayed all of her diabetes prowess with flawless execution of a sugar check and an insulin injection. A single unit was enough to keep her in range since this restaurant serves Coca Cola Light. A few minutes after the drinks arrived and the food placed before us Jillian whipped out something that brought Alex to a halt: An insulin pen. Yup, Jillian also has Type 1 Diabetes, and has had it for about 5 years. And Alex very rarely gets to see someone with D up close and personal like that. Jillian gave herself her shot in the thigh, and that had Alex propelling herself to my side of the table. “Mom,” she whispered, “she didn’t do an air squirt!” “Why didn’t she?” I suggested Alex ask her, but Alex was still a little too shy into the meeting to do it. But that question niggled Alex for quite a while, apparently, because she eventually did get up the courage to ask. Jillian didn’t realize she was “supposed” to air squirt.

So we all chit-chatted for a little while, feeling each other out, so to speak, and that Jillian got down to the nitty gritty: the interview (which, of course, was the reason she was here after all). Sly signed her release form, Jillian clicked on her recorder and we started. Oh, we had a lot to say and I won’t go into it in detail here (I know, you’re thinking, “thank God!”). I’ve really said it all before.

But after a while it was time to interview Alex, who was very excited with the prospect of signing her (own) release form, and talking (directly) into the recorder. There were lots of standard questions, and some standard responses. Alex was right when she answered that Type 1 Diabetes is a disease that you get and you didn’t do anything to get it, and that it’s different from Type 2 diabetes where you get it because you eat too much or don’t exercise. I have to admit, I was really proud of all of her responses. Except for this response, which is pretty close to verbatim: “Some people might get Type 1 Diabetes because someone who already has Type 1 Diabetes spit in their mouth.” I have no idea where she got that from – maybe some misperceived HIV/AIDS information from school?!

Then Jillian allowed Alex to interview her and offered her the questionnaire that she worked from. Alex kept to the format, but informed Jillian she was going to mix the questions around. Then Alex added a few of her own questions, apparently. The one that pops out in my mind is “How many boyfriends did you have?” Alex, I imagine, will be working as a gossip columnist when she gets older.

The interview ended and Jillian went on her way, but not before a quick hug and a gift to Alex of a heart-shaped key chain from London. Michael was very disappointed that he didn’t get one, and is still young enough to be blunt about asking why he didn’t get one. Jillian’s response was “you have to have diabetes to get one.” Knowing Michael as I do, he was probably wondering just how disgusting Alex’s saliva would taste.

The Field Trip that Wasn’t

2009-03-12T10:38:00.006Z

Yesterday, Alex had her school first field trip since her diagnosis. Only she didn’t get to go. We learned about the field trip just last week, Tuesday the 3rd I think, even though the notice was dated February 20-something. It said that Alex’s class would be going to the Akosombo Dam and Kpong Water Works on March 11th, leaving the school at 7:00 a.m. and returning at 5:00 p.m. Experience has shown the return bus from the field trips is always late; sometimes as much as 90 minutes. So we're talking a day of about 11 hours outside of my control.

And the fee for this trip was GHC 20 (about $18) payable by Thursday, March 4th. Mike also had an excursion scheduled for that day, different trip though, with a fee of GHC 15. Truth time: We didn’t have the money for the fees on the day it was due, so we didn’t send the money in until Monday.

On Monday morning, I sent a note to Alex’s teacher, enclosing the money and suggesting that I be allowed to accompany Alex on the field trip, given her “special situation” and the need for additional testing and insulin injections outside of the normal school hours. I specifically said that Alex would not attend if I couldn’t go too.

After the kids had been in school for about an hour, we get a phone call that we should come and pick them up again, because most of the students and many of the teachers hadn’t shown up for school on the assumption it was a holiday (most of the public schools were on holiday but not SOS). So I rush in to get her and find that her teacher isn’t in, only a substitute. He acknowledges that he got the money, but didn’t read the note, but he listened to my diatribe and agreed it would be best for me to go. But of course, he's just the sub.

I figured on my way out, I’d go talk to the headmaster and run it up the flagpole, so to speak. He wasn’t in either (maybe he also didn’t know it wasn’t a holiday!).

Tuesday comes and I go to pick up Alex and talk to her teacher about the trip. At least today, her teacher is in. But she knows nothing about a note that I left for her. (And what is with that! Wouldn’t you assume a substitute would pass along the day’s doings?!) So I go through it (again) with her. She also thinks it is not unreasonable for me to go along, but she can’t make that call. She says I should talk to the assistant headmaster.

The assistant headmaster is not in. The office secretary (not the friendliest of sorts, by the way – I don’t think I’ve ever seen her smile) suggests that we call the headmaster who also (still) isn't in. Okay.

I call hubby (headmaster’s old school mate, remember?) and tell him that I am something like 0 for 4 on this matter. He agrees that he’ll call Heady and let me talk to him. Now, truth is, Sly is not really sure about why I am insisting that I have to go along in the first place. He keeps thinking its all about glucose testing and insulin, and never the possibility – extreme as it may be – of an emergency situation where Alex goes so low that she seizes. I don’t think he believes that day will ever come. In a weird way, I hope it gets here soon, so it will be over and done with and he will see what I’m talking about. I’m not talking grand mal, just petit, one that I can handle with little difficulty. Sly has never seen Alex when she was low enough to be disoriented… at the point when she doesn’t know that she should suck liquid up out of the juice box straw that I inserted between her lips and has to be told to drink. No, he’s never seen that.

Well, a call is put into Heady and goes to voice mail. While waiting for his return call, we “discuss” other options. Like me riding behind the bus in Ekow’s taxi. Except that I won’t be allowed into the dam or the water works, since they are government installations and I wouldn’t be on the “guest list.”

Heady never called back. Yesterday, the school bus came and went without Alex. Alex and I went to the local pool and enjoyed the day.

So, was I being too overprotective? I know my husband thinks so. He’d have let her go on the field trip and hoped for the best. He believes that because her schools days are so “relatively” normal that this trip would be no different. Yes, her regular schools days are “relatively” normal. She tests her sugar before snack and lunch and she takes 2 units of a prefilled syringe for her lunch. But her lunch is always the same. Always. And still, her numbers are different every single day. And I’m also only 7 minutes away from the school just in case there’s an emergency.

So how can he expect that a field trip would be the same? Different eating times, different food, different snacks, different exercise schedule. All of those things combine to create a mathematical equation where you have to solve for X. Except that you don’t know all of the variables.

Sly asked me what I would do if there was an emergency. I’d administer glucagon, that’s what I’d do. I asked him what he’d do, and he didn’t have an answer.

So, am I being too overprotective? Did I blow this out of proportion? Well, we’ll never know. The bottom line is I was not willing to establish precedent by letting her go on the field trip alone. The outcome would be (in my mind) a lose-lose situation no matter what happened or didn’t happen. If she had had a problem, I wouldn’t be there. And if she didn’t have a problem, it would mean that I’d have to fight harder to go along on the next field trip. But some day, there may be a problem. And I want to prevent that some day from coming for as long as I can.

When the planets align…

2009-02-23T08:21:00.009Z

There’s no such thing as “controlling” Type 1 Diabetes. That’s like saying you can “control” a wild animal which you’ve been training and domesticating (sad case in point, Travis the chimp!). Despite all your good efforts, one day, it’s just gonna turn on ya. Diabetes is like that; the best you can do is manage it day to day, and try to keep it on a tight leash.

Well, we were able to keep diabetes on a very tight leash for a whole single day last week. It was February 18th 2009. I’ve got it imprinted in my memory, because it was so very very sweet. It was like the planets aligning. Everything fell into perfect balance.

Maybe that doesn’t sound like a big deal. But really, it is. Since Alex switched to MDI (multiple daily injections) in November, her numbers have been all over the place -- lows of 2.5 (45) and highs of 24.3 (437). Keep in mind, a person without diabetes is about 5.5 (100) maybe up to about 8.0 (140) after eating. But, that day, February 18th 2009… ahh. Alexandra was 100% in her range (4.0 to 8.0).

6.7 (120) at 1:04 a.m.

6.3 (113) at 6:00 a.m.

Injection of 2 units of Humalog at 6:40 a.m.

5.2 (97) at 9:30 a.m.

7.7 (139) at 11:30 a.m.

Injection of 2 units of Humalog at 11:34 a.m.

6.9 (124) at 3:00 p.m.

Injection of 2 units of Humalog at 3:05 p.m.
Injection of 8 units of Lantus at 3:06 p.m.

5.3 (95) at 5:30 p.m.

Injection of 2 units of Humalog at 5:38 p.m.

8.0 (144) at 7:34 p.m.

If only every day could be like that!

“Looks like we’ve just had our first glitch for this mission.”

2009-02-07T09:10:00.007Z

The start of Alex’s 8th year probably isn’t what she expected. On Monday, February 2nd, my little Ground Hog baby celebrated her 8th birthday. She has been anticipating and making plans for this day for weeks, if not months… every sentence starts out with, “When I am 8…”

Monday she goes off to school as usual. She has PE for first class, and is supposed to check her sugar before and after. No problem. She is also supposed to check her sugar at break time, which coincides with the after PE program, so again no problem. She is also supposed to check her sugar at lunch time. Problem. She ran out of strips. Evelyn, the librarian, calls and I come scampering to the school, in my cleaning-the-house skanky clothes, and pull her out of class to check her sugar. She’d already eaten lunch, but surprisingly her after lunch number is a 3.5 (63). Maybe an after-PE crash. Whatever. I crank her up with 2 glucose tabs, and promise to return later with her birthday goody bags.

Once I’m home and cleaned up, Sly and I start on the goody bags – juice, corn puffs, Milo cubes and erasers – and bring them to her class. Alex is happy, even though the bags are a bit on the lame-o side.

When she gets home from school, I have her help me make fairy cakes from a mix. Like any normal kid, she wants to lick the spoon and I figure, go for it. I’ll bolus her later. After dinner of soft tacos with rice and black beans, we all have cake and ice cream. Even with all this, Alex’s numbers stay pretty lovely and all is well with the world, or at least this small part of it.

Until 10:30 that is. Alex wakes up crying. Her teeth are hurting and she can’t sleep. She wants to go in the living room because it hurts to lie flat. So I hustle her in there before she wakes up Sly, and check her sugar. She’s running a bit high now – 13.5 (265) – probably from all that friggin’ sugar-escalating, tooth-achin’ ice cream that she consumed earlier. I give her Tylenol and a correction unit, and by 1:00 pm she’s just about in range and willing to go back to sleep.

Now, while I thoroughly enjoy (and desperately and definitely need) my beauty sleep, I have to admit it wasn’t all that terrible to sit up and watch TV at midnight, because I got to watch CSI Las Vegas, which I haven’t seen in years. Make the most of what you’re handed, that’s what I say.

When the morning comes, I tell Sly that Alex has to go to the dentist today. No ifs, ands or buts about it (‘cause we’ve been putting off a dental check-up for her for months). So we ride with the boys to school and then head into Accra to find a dentist. The good thing about living in Ghana is that you don’t have to worry about appointments for things like doctors or dentists or beauticians. They still work in the old-fashioned "Walk-ins Welcome" kid of way. So we walk in at 8:45 and we’re seen by the dentist at 9:15. Not too bad. In the states, even with an appointment, we’d probably be waiting longer.

The dentist looks at Alex’s mouth and spots a lot of trouble. Her baby teeth are wiggly, but they’re crumbling faster than they’re falling out. She’s lost a filling in one tooth, and she’s got a couple of cracks in two others. He fills what he needs to fill, and shows Sly a tooth that he’s just going to ignore because it’s too crumbled to fill and he figures it will fall out before it starts causing pain. (I certainly hope so.) Sly is a little bit green around the gills, because he’s never been to a dentist in his life and being this close to one is a little disconcerting. Sly has beautiful white perfect teeth. Oh, and his mother of 88 still has all of her beautiful white perfect teeth.

The dentist made us chuckle when he tells us that he’s glad that Alex’s teeth problems aren’t too bad and didn’t require any anesthesia, because he’d hate to have to give her a needle (Novacaine) as he doesn’t want children to have a fear of needles. We told him that needle-phobia was the least of our concerns; Alex deals with needles at least 10 times a day!

By the time we get back home it’s too late to send Alex to school, so she gets a freebie on this one. The rest of the day and that night is a non-event. That’s good. It’s lets us store energy for what’s to come.

About 4:30 am, I happen to brush against Alex and find that she’s burning up. What now?! Her sugar is in range, but her temperature is 99.7. An hour later, her sugar is still good, but she’s up to 100.2. There is no way she can go to school with a fever, so here goes another non-school day.

Another hour goes by and she’s at 101 and she’s awake enough now to tell me her “neck” is hurting – she means the inside of her neck, not the outside. Her sugar is still good, but I check her ketones and they’re at .5. Not terrible, but not giving me the warm and fuzzies, ya know? Fever is never a good thing for a child with diabetes, so today we’re off to the doctor.

Doc orders a blood count to check for malaria and a swab for strep throat, because her throat is red. The lab technician gives us another chuckle when he pulls a new lancet out of the box and tells Alex that this won’t hurt. Hah! Good luck finding an unpricked, uncalloused finger, I tell him.

The lab results come in and they’re positive for malaria parasites, and negative for strep. Oh well, can’t win ‘em all.

She’s on malaria medication, and antibiotics anyway, and Tylenol to keep the fever down which absolutely refuses to give up the ghost even as of today. The real problem is she’s got no appetite, and I hate that she’s not eating, so I give her lots of juice.

Now, when I mentioned to the local clinic doctor about giving her juice, he kind of fought me on that. He says I should give her only water, because the juice is high in sugar. To that I think, “d’oh!” “But,” I tell him, “if she’s not eating, and she’s on insulin and showing trace ketones then I’ve got to give her carbs and insulin to knock out the ketones and cover her basal.” He doesn’t really get this, but I know what I’m talking about. He suggests I call our regular doctor afterward. Good suggestion. Sly is leaning toward this doctor’s suggestion about the water drinking issue, and that’s kind of pissing me off. I keep repeating myself, “Yeah the water is fine if she’s eating, but she’s not eating and she’s got to have carbs!!”

Sly also wants me to call the doctor and see what she says. Dr. Renner agrees with me. Give her liquids with carbs if she’s not eating. I win. Good thing, because I’m a helluva sore loser.

Alexandra Updates

2009-01-29T13:55:00.004Z

I’m happy to report that the “freak show” issue has now been resolved. I was able to enlist the school’s librarian and Special Ed teacher to help me to convince Alexandra that this (giving herself her shot) was something she could and should do, and that no one would make fun or tease her for doing it. Certainly, Auntie Evelyn and Mama Caro did their best to reassure Alex that her friends were nothing more than curious and supportive. They also assured me that those children – specifically the class 5 kids who have been calling Alex “Diabetes Girl” – will get a talking to in the not-so-distant future.

Since then, about 2 weeks have gone by, and Alex has injected herself with insulin every day with no complications, and with nicer numbers. It’s really not that big a deal, unless you’re an almost 8 year old, that is. I give her 2 units of Humalog prefilled in the syringe, and since she eats almost the same thing for lunch Every.Single.Day! (blech) she doesn’t need to adjust the insulin.

About 3 weeks ago, just before the month’s end, money was really really tight. It happens here, especially when a hardworking consultant doesn’t get paid for all of his hard work, and we were down to our last vial of glucose strips. I have to admit, I was not checking Alex as often as I needed to, because I was afraid I’d run out of strips before the money came in. But eventually, we were down to our final few strips and there was no choice. We pooled all of the money we had in the house and went out to buy them. First, to Kama, since they’re the cheapest ($43 for 50 strips) – they were out. Then to a local pharmacy – they were out. Came back to Tema and tried 3 pharmacies – all were out. Finally, a so-called “wholesale/retail” pharmacy had the strips. Get this -- $65 for 50 strips. I had no choice, I needed those strips. But, boy, that hurt.

Fortunately, a few days after that, I received a huge donation of diabetic supplies from a cyber-friend in the States. Now, I have to be truthful, as you might have gathered, we’re not exactly rolling in dough, but we will scrimp and save and pull whatever money together that we need to get Alex the stuff that she needs.

One of my ideas is to make use of eBay for glucose strips. Those little things, as I’ve said before, are a money maker for companies like Johnson & Johnson. A cure for diabetes? I don’t think if they have any say in it; there’s much too much money to be made on diabetic supplies. Philanthropists they’re not. So, I’m looking at eBay but almost every seller wants PayPal. I don’t have PayPal. I used to have PayPal, but we parted ways when we moved to Ghana – a country not in favor with the majority of credit card issuers. Not my choice, but I’ll abide by it (because I have no choice). Anyway, their loss.

So, I go to my favorite CWD forum and ask if anyone can recommend a seller to me, or if anyone has any strips that they can sell me, and I’ll pay them by bank check. Well, this very nice lady named Michelle says, send me your address, I’ve got some strips that I’ve stockpiled away. I’m asking for a few hundred – 200 or 300 – which will get me through about 2 months (if that). I’m hoping that she’ll say she’ll sell them to me for 50 cents apiece or about $25 for 50 strips. That’s about half the retail price.

Michelle, though, just keeps ignoring my request for a price, and I finally get a clue. She’s giving this to me, for Alex.

About four weeks after Michelle mailed the box (first to my Mom, then repackaged and forwarded to Leslie who hand carried it), I received it here in Ghana. And I was in for a shock. It was packed – chock-a-block packed – with 700 glucose strips, a brand new ketone meter and 70 strips for that (no more hunting down urine ketone strips!), about 1200 lancets, 400 disposable pen needles, 250 glucose tabs, 2 boxes of Moo Milk, 1 box of Hawaiian Punch sugar free mix, a bag each of holiday M&Ms and Hershey Kisses, chocolate marshmallow santas and a box of Russell Stover candy. This was no small gift. This was an amazing and touching act of profound kindness. I was dumbstruck (but obviously, that didn’t translate to my fingertips). Each and every time I check Alex’s sugar or put a new pen needle onto her insulin pen, I thank the heavens for the goodness and generosity of people like Michelle.

I hope that someday, God willing, I can pay this kindness forward. But if God is really willing, he’ll cure Type 1 Diabetes first. And then let me offer my kindness to someone suffering from some other disease – like male-pattern baldness.

"I'm not adding to the freak show."

2009-01-06T16:22:00.010Z

So says Alex.

Alex has been on Lantus for about a month, and its been an interesting month to say the least. Ups and downs and me trying to snag her highs with corrections and stop her lows with juice and glucose tabs... which we're going through like crazy, by the way. But the past week, the Lantus has done something kind of weird. It's been enough for Alex for a couple of days worth, without needing extra insulin for meals. I've found that kind of bizarre, but I'll take it. Maybe its her honeymoon or just the moon in general. Whatever, it's fine, we'll deal.

But, we've still had a few days that were weird with both highs and lows, and I had to correct them. Bit, today Alex was going back to school, and in anticipation (i.e. dread) of what may come of her numbers while she's in school, we made the decision not to do anything for a couple of days and just see how it goes. I mean, Alex eats a bowl of cereal in the morning with a cup of milk, nothing out of the norm. And for lunch at school she always has jollof rice and chicken. Even if she goes a bit high, it's only a couple of days and she's home by 3:00.

So, I'm explaining to Alex what the new plan is last night, and I'm telling her that if we see that, after a couple of days, her snack and lunch readings are too high, she's going to have to give herself a shot of insulin. Her response? You guessed it (and if you didn't WTF?)... "I'm not adding to the freak show. And if you think I need insulin at lunch time, then you're gonna have to come and give it to me." Oh-kay. I'm thinking maybe it's the syringe that is the problem, so I suggest instead the insulin pen, cause it looks like a pen. Not even a second worth of consideration; still, a big fat "No way."

Hmmm. This is going to take some additional tweaking, as far as I can tell. Her numbers today are slightly out of range, not terrible, but not great. I'm going to give it the rest of the week and see if they're consistently like this, and maybe then I can figure out the right course of action. One thing is for sure, I am not going to go to school every single day to give a unit or two of insulin. Alex can and has given herself her own insulin injections... under supervision, of course. She can do it, and she needs to learn that she may have to.

Her comments really upset me, and more than just because I'd have to go and do the insulin (which I'm not going to do). I just never thought that she would see herself as a freak. I thought we (she) had this under control. Guess I thought wrong. This disease really sucks.

YDMV: What a week!

2008-12-19T07:52:00.012Z

This has been a crazy week. On December 10, 2008, we officially moved away from Alex’s pre-mix insulin to Lantus plus. Lantus is a basal insulin which she gets once a day, and which is intended to mimic the pancreas of a non-diabetic person which has a low level of insulin secreted all day long, thanks to the workings of the liver which pumps out low levels of glucose, day and night. I know, enough with the lesson – that was last post. Anyhoo, Lantus is injected once a day and that’s good, because Alex doesn’t exactly like it, as it stings going in since it’s more acidic than the other insulin.

With the Lantus, Alex also gets another 2 or 3 shots a day. “Ouch!” you say, and rightly so. But not for Alex. She really doesn’t mind, because it means that she can have her breakfast, lunch and dinner and all the snacks in between, whenever she wants. Just like a regular kid. Instead of me having to wake her up at 6:00 to have breakfast, as we had to before, she can sleep pretty much as late as she wants. Instead of ensuring that she eats lunch at 11:30, we can eat at 11:00 or hold off till 1:00. That’s pretty inconsequential for most people. I mean, who gives a crap what time you eat your lunch. But for a person with diabetes, it is a big deal. It means flexibility. It means freedom.

How it works is this: Alex eats her lunch, I estimate how many carbs she’s consumed and I give her an injection of soluble, fact acting insulin (Humulin R, in this case) to compensate for the elevated blood sugar that I know is going to come. In an ideal world, she’d get the shot before she eats, so that the blood sugar and the insulin meet at the same time. But this ain’t an ideal world. I never know how much Alex is going to eat. She is the original picky finicky kid. So, I’m a little bit slow on the uptake, because the sugar is already starting to rise, but I’ll snag it back down as soon as possible.

It’s a good insulin plan, but it isn’t an exact science. It’s still (and always will be) a lot of guess work, and a lot of checking her blood sugar to see where we are and how things are affecting her. The Lantus is not supposed to peak, but it does, but it happens to peak right around when she’s eating dinner so it often works to bring her blood sugar down without me giving her a separate shot for it. Sometimes. Her numbers are looking erratic with the change, but that's to be expected until we iron out the wrinkles.

Someone on the children’s forum board that I frequent coined an acronym that is absolutely perfect: YDMV: Your Diabetes May Vary. Everyone is different, and even a day that is the clone of a previous one won’t render cloned results. It’s weird. It’s like the Butterfly Effect as it applies to Diabetes.

This week, we also got Alex’s A1C report back. Without fanfare, it was a 7.4%. Now, granted, not as good as the 6.0% she had the last time, but it’s still a very good number for a child. Alex is definitely moving out of her honeymoon, and this number is evidence of that. But, I like this number. It’s doable. It’s livable. We’ll work to keep it here.

Alex and her brothers are now officially on school holiday, and will be home annoying us until January 8, 2009. Pray for us. Please.

A Type 1 Diabetes Primer

2008-12-01T14:47:00.014Z

A lot of people have some serious misconceptions about Type 1 Diabetes, so consider this blog posting to be a little primer, intended to educate the general population.

Type 1 Diabetes used to be called juvenile diabetes, primarily because it affects children and young adults, in truth you can still “get” Type 1 Diabetes, even if you’re an adult. There’s no “safe” age. Type 1 Diabetes is not as prevalent as Type 2 Diabetes; if affects only about 10% of all persons who have diabetes. But, it is generally considered, the most serious type of diabetes to have because you will never "outgrow" it or take such good care of yourself that you can consider yourself "cured" (case in point -- Halle Berry -- a lovely woman, but certainly a bit of a misinformed nut job.)

Type 1 Diabetes doesn’t happen because a child is fat or lazy or makes poor lifestyle choices. It doesn't happen because a child eats too much candy or takes in too many sweets. It just happens. In technical/medical terms, it’s called an autoimmune disease. The body basically turns on itself. In this case, the pancreas are attacked and the beta cells that produce insulin are destroyed.

Simply put, without insulin, your body cannot effectively use the carbohydrates that it gets from food – not just sugar, by the way. So, instead of sugar and carbohydrates converting to energy, it stays inside the body and keeps building up and up and up. When the body needs energy (as of course, it always does), it turns to the fat stores already inside the body and uses those up. Before too long, unless the individual had a lot of fat stores, you will see a quick and very obvious weight loss.

Alex, for example, lost about 10 lbs, or about 20% of her body weight. At diagnosis, she weighed slightly less than 40 lbs; the previous year, almost to the day, she had a doctor’s appointment and weighed 44 lbs.

If this were a hundred years ago, Alex would be dead. These pictures are of the same child who was diagnosed with diabetes – before, during and after—sometime in the year 1992, when insulin was first discovered in Canada. What a difference a little insulin makes, eh?

Little boy before diagnosis, circa 1922

At diagnosis, circa 1922

After diagnosis and insulin injections for 1 month, circa 1922

Insulin was not “discovered” until 1922, but it is the only thing that saves her. INSULIN IS NOT A CURE. A cure means that you no longer have the disease. Insulin merely allows her to live, by utilizing the sugar in her body the way that it’s supposed to be used. By definition, cure means to heal, to make well, or to restore to health. Insulin doesn’t heal or make well her pancreas, and she’s certainly only in restored health with a lot of effort. But she’s certainly not “good as new.” No, insulin is not a cure. She will have to take insulin injections every day of her life. Without insulin, her days would be numbered.

Alex’s day consists of a never ending… wait, let me start that over. Alex’s life consists of a never ending series of glucose or sugar readings and insulin injections. And correcting a high with still another insulin injection and treating a low with juice, glucose tabs or candy. Yes, you read that right, candy. Type 1 diabetics can and do eat sweets -- occasionally to treat a low, but just as often, because they like it. The only difference between a Type 1 diabetic and me (a non-diabetic), is that they have to take insulin to "cover" the sugar, whereas my body automatically "covers" my sugar by making insulin in my pancreas. Remember, Type 1 diabetics cannot make insulin themselves.

Here are the most basic of diabetic accoutrements that Alex needs to survive:

Humulin 70/30 premix insulin: Twice daily injections before meals.

Humulin R insulin: Needed to correct a high sugar reading.

Glucose Meter: Readings are taken several times each day, before each meal (3 meals), before each snack (3 snacks) and in the middle of the night (1). That's a minimum of 7 sugar checks, plus additional ones, say if the previous number was too low or too high from the norm.

Glucose Tabs: To counteract a low, with quick results.

Glucose Gel: To counteract a more severe low, say if she is too disoriented to swallow liquids, with quick results.

Log book: Records all of Alex's ups and downs and insulin corrections. It helps to see trends to change the insulin regimen.

Glucagon Emergency Kit: Not pictured, because I don't have it yet. but expect it soon, thanks to a donation from some lovely ladies in the U.S. (Sadly, no, it is NOT available in Ghana.) Glucagon is an essential part of all Type 1 diabetics arsenal -- when a low is so low that a person loses consciousness, you cannot feed them food or drinks (d'oh!), so this injection elevates their blood sugar levels until they regain consciousness and can drink liquids or eat solid foods. Consider it a kind of home-grown I.V.

Because of where we live, a country with only the most basic of medical necessities, Alex is on a very simple insulin regimen. She takes two injections daily of insulin called Humulin 70/30 – a premix of long acting and short acting insulins.

This is not an ideal insulin treatment, because it requires strict regimentation of her meals and snack times. That is often easier said than done. It’s probably just barely manageable for an adult who understands the ramifications of not obeying, but for a kid, well, it’s near impossible. Consequently, we don’t have her diabetes management down as well as I’d like it to be.

When we see Alex’s pediatrician later this month, I’m going to ask about something called the MDI treatment. MDI is an acronym for multiple daily injections, and if she moves to this treatment, Alex will likely get between 3 and 5 injections a day. The goal is to match the insulin to the food, and not the food to the insulin. It may take some adjustment, but for her overall and long term health, I believe it will be a better option.

Sure, she’ll have more shots than she has now, but when you consider the trade-offs of poor diabetes management – blindness, nerve damage, etc. – I think a few seconds more of daily pain is a small price to pay. Alex may not agree with that assessment; she is only 7, after all. Tough love -- and it hurts me, too.

Friday flashback – The futile search for ketone strips

2008-11-28T11:04:00.002Z

Last week, Alex was running high all week long. In truth, she’s been a lot higher over the past month or so, leading me to believe that the honeymoon is about over. Anyway, she was even higher still last week, and woke up a couple of mornings pointing to her neck and telling me it hurts. She’s been sniffling and snorting and coughing, too. So, I’m figuring she’s got a cold coming and it’s affecting her blood sugar.

On Thursday morning, the school calls me that Alex’s sugar at snack time, 9:15, is high, and it is (13.4 or 241 in American numbers; she’s supposed to be between 4 and 8 or 70 and 140 American) but I gave her her insulin at 6:00 am, so she’ll probably start to come down right around then. I tell them not to worry. Twenty minutes after that, another call from the school; Alex doesn’t feel good and wants to be picked up. Okay, off I go to get her.

When we get home at 10:30, I run her number again, and she’s 13.8 (248), a bit higher than earlier, so I know now I’ll have to keep a watch on her. She’s high all day and even the insulin correction isn’t helping bring her numbers within range.

Thursday afternoon I email Alex’s doctor and ask her review Alex’s numbers and tell me what to do. I’m really clueless, because this is Alex’s first sickness since diagnosis. The response comes back that I’m to give her lots of liquids and soluble insulin – easy enough, it’s what I’ve been doing – and to check her for ketones using something called Multistix or any ketone strips if they’re not available. That, as it turns out, is easier said than done.

Now, here’s where I get a little bit peeved. At Alex’s last doctor’s appointment in September, I specifically asked the doctor if we needed ketone strips. I’d been reading on the forums how it’s an indication that the insulin is insufficient. The doctor’s response then was a simple no. I was told that as long as I give her soluble insulin every 6 hours, she should be fine.

So, why now do I have to go scurrying around to buy these things? Urgghh!! At 9:30 our taxi driver, Ekow, comes to get us to drive us to the local hospital, cause I’m thinking that’s probably where I’ll find these.

First stop, the out-patient pharmacy. They’re not sure what I’m talking about but suggest I go to the in-patient pharmacy. Okay, where the hell is that? Public hospitals in Ghana are unlike anything in the U.S., and this one is no exception – large and sprawling and with no signage whatsoever. Fortunately, an information desk is out front and a very nice lady offers to take us where we need to go. Good thing, because I forgot my bag of bread crumbs. Five minutes later, she directs us inside the Men’s Surgical Ward. I would never have even considered looking in there!

The clerks at the in-patient pharmacy also don’t know what I’m talking about. So, they call a doctor over. A white lady in a smock comes in and they point us out to her. From her accent, I’m guessing she’s from Russia or the Ukraine, or one of those countries that end in “stan.” She wants to know what I want, and when I explain, wants to know why I want them. Really, what difference does it make why I want them, I just want them! But I go ahead and explain that Alex here has Type 1 Diabetes and she’s been having high numbers, etc., etc. She looks at Alex and says to me, “How can it be? Someone so young with diabetes?” I’m thinking, is she clueless or what? But, I give her the benefit of the doubt; maybe she doesn’t know that Type 1 is the new name for Juvenile diabetes. (Scary thought, either way, for a doctor to make that comment, in my opinion.)

She walks us to the lab where she thinks we might be able to find them. The lab doesn’t have any, but they offer to run a urine test for Alex right then and there. You don’t have any, but you can do a urine test? Makes no sense to me. In any event, I don’t think so. The place is filthy and there are about 100 people in the waiting room. Not only that, but I’d have to check Alex’s urine every 4 hours and I’m not coming back here to do it.

Off to our waiting chariot and we have our driver take us to a big pharmacy in town. By big, I mean it’s bigger than breadbox, but not much bigger. CVS has nothing to worry about.

We get there and wait our turn at the pharmacist window, but we’re told that they don’t have ketone strips. At least he knew what they are. I’m encouraged. "Have them now, or ever?" I ask. The pharmacist’s response is, "Well, we only have a couple." "Oh, so you do have some." "No, we don't have any more." I'm ready to slap the guy. "Do you have any suggestions where I can find these things?" I ask. He sends us to another neighborhood. Only good thing about going here is I found that they carry some of her insulin, so I pick up a bottle of Humulin R, which costs about $8 more than my regular pharmacy who was out. Oh, that and a box of Tic Tacs for Alex – that girl can’t resist.

We try five more pharmacies. No luck.

Thinking well, now I'll take her to the local (well-run, clean) laboratory and at least have them check her for ketones. Good news! They can do it. Bad news! They send the urine to the lab in Accra and the results won't be available until Monday. Fat lot of good that would do us.

So, home we go. Ketone strip-less. I’ll just have to do my best with what I have. I give Alex insulin corrections that are doing very little to bring her numbers down; she doesn’t have a “normal” number until Saturday around dinner time.

In the meantime, I’ll continue to be on the lookout for ketone strips for a future emergency; I’m sure I’ll find them when I don’t need them. And I don’t care what anyone says, ignorance is not bliss. It’s scary.

June 25th: A celebratory union.

2008-11-25T09:16:00.001Z

June 25th is a date of tremendous significance in my life, as two distinctly different unions happened on that date. One helped make me, the other is going to try to break me.

Nearly a half century ago, on June 25, my parents, Robert and Martha, were joined in holy matrimony. On that day, they joined hands and looked eagerly to a future full of hope and promise. Of course, I wasn't there to witness their union, but I heard it was nice. Until my father died in 1997, my parents shared a lot of joy, laughter and love.

On June 25, 2008, there was another union of a sorts, but this time, I had a front row seat. On that day, my 7 year old daughter, Alexandra, was diagnosed with Type 1 diabetes -- an unholy, undesirable union if ever there was one. On that day, though, I made a solemn (silent) vow that my daughter would have a future at least as full of hope and promise, if it was within my power.

We're now into month 5 of life with D, as we call it. It's been a challenge, as any parent of a child with diabetes will tell you. But it's been a dual challenge because we make our home in a "third world country."

Without recreating the wheel, I'm following this post up with a reprint of posts from my other website, Obroni Observations, to learn what our first couple of days were like in a local hospital.

Oh, and my title, about June 25th being a union to celebrate. It is still a reason to celebrate. My daughter is still alive, and with my help, and by God's grace, she will be for a very long time. An unholy union? Maybe. Undesirable? Absolutely, yes. But, we're in it now for better or for worse... well, you know how that goes.

5 Nights in Korle Bu Children’s Ward Diagnosis: Type 1 Diabetes

2008-11-25T09:00:00.000Z

It’s been a long while, I know, I know. Things have been busy and work has been steady and I could hardly find the time to do anything writing unless it was for money. Until now. I am now on a self-prescribed work slowdown. I have no choice.

About three weeks ago, we took Alexandra to the doctor for a check-up. She’d been listless, losing weight, waking up several times overnight to go to the bathroom, then sipping water before she even slipped back into bed. Now, at first I attributed the night time excursions to the toilet to the fact that she had wet the bed one night (sorry Alex, she begged me not to tattle, but it’s part of the story), and she knew I wasn’t happy about that. I figured she was trying to prevent a repeat performance by getting up 4 and 5 times. But the frequency to the bathroom, her thirst, her utter exhaustion, and finally, seeing the knobbiness at the top of her spine… I knew something was really wrong. I just knew.

I am not a doctor, by any stretch of the imagination, but I am “aware” of the symptoms of diabetes, and was worried sick because Alex exhibited all of them. I didn’t tell my husband what I suspected, this is his little princess, and he needed to hear the grim news from a professional, not his wife.

Unfortunately, after the GP ran a quick urinalysis and blood sugar test, he confirmed my worst fears. He sent us off to the lab for a battery of more blood tests. We were told to report to Korle Bu Children’s Unit to see the pediatrician in charge.

Dr. Renner is a very busy woman who took the time out of her hectic schedule to see us. She looked Alexandra over, read the referral note from the GP and the urine and blood test results, and then had an aide take Alex up to the ward for a weight check (19 kilos or 41.8 lbs – she weighed the same a year earlier!). While they went to do that, she told me to grab my bag and come with her, and she’d show us where we’d be staying. GULP! I don’t know what I expected to hear, but an overnight stay wasn’t it.

We went up to the ward, and I was introduced to the matron, Auntie Mary. The doctor told her that Alexandra and I should be given a bed in the “amenity” ward, which is separate from the regular “charity” ward. We were lucky enough to get our pick of the beds, since there were 2 doubles, a single and a crib, all separated by heavy blue damask curtains with the words “Donated by Angel Trust” embroidered in the middle of them. We opted for the double bed by the window so we could look out of our cell, um room, window.

We were also lucky enough to have our own locked toilet, at the other end of the ward, though. Unfortunately, that area of the building didn’t have running water, so you had to fill a bucket from the shower, and then dump it to flush. The first day, Alexandra and I must have visited that toilet at least two dozen times. I am sure that the other patients and their mommys were very surprised to see an obroni on the floor (one who wasn’t a visiting doctor), but someone just like them – a mommy taking care of her very sick child.

And that is exactly what I was, a mommy helping to take care of her very sick child. Alexandra was put on a saline drip to try to flush out the sugar that had built up in her body – her ketones were very high, and this was the only way to that. The doctor didn’t come right out and say it (that’s their way, unfortunately, and I’m forced to dig and press for answers), but I’ve since discovered that Alex had ketoacidosis, hence the drip in her hand for 36 hours. She was not happy about having this “thing” stuck in her hand, but we didn’t have any option. On the other hand, she thought it was “fun” that she could now take a leak in a bedpan. I, however, did not find that “fun” since her aim is awful, and it was my responsibility to mop up her mess, fortunately there was a sink and a mop in the room for that very purpose. The “amenity” part, I guess.

So, once Alex and I were settled into our room, and she hooked up to the drip, it was total boredom from there, at least for us. I did have my laptop with me, and the Wizard of Oz is on my hard drive, so Alex watched that to pass the time.

In the interim, poor Sly was running around like a chicken without a head. Hospitals (at least, this one in particular), do not have the luxury of a dispensary, and any drugs needed for treatment must be purchased, in advance, by the patient’s representative. So, off Sly went to the 24-hour pharmacy for the first of many many trips – insulin, saline drip, a glucose meter and strips were the first run.

As soon as he brought them, Sly had to rush home to get the things we needed for our sleepover – he still had to pick up the kids from school, so it was urgent to get home, pack, get back to the hospital and get back to Tema by 4:00 pm to get the boys (who were going to be very upset to hear that we were in the hospital). Pillows, pajamas, undies, clothes, slippers, laptop adapters, phone chargers, tooth brush/paste, soap, shampoo, towels… you name it, we needed it. This is not a luxury hotel.

While he was gone, the nurse came in and gave Alex the first of what will likely be more than 50,000 insulin shots over the course of her life time. I hope that Alex gets to live a good long life, and hope that in her lifetime there will be a cure for this horrible disease. It took all of my willpower not to break down and cry in front of Alexandra, but my heart was breaking.

Sly finally got back about 3:00 pm with two Hefty sized bags worth of stuff. He needed our driver to help him carry the stuff up, and poor Ekow, our driver, was really upset to see Alex lying in bed attached to an IV. This is not the Alex he knows, who fights to sit in the front passenger seat, and bangs on his car intentionally every day as she departs, and calls him Brother Ekow. No, this was not that Alex.

Unfortunately, Sly had to leave almost as soon as he arrived to get back and pick up the boys, and we were left alone for our first night in the hospital.

Stay tuned!

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Originally posted July 14, 2008 at Obroni Observations

Night 1 – Korle Bu Children’s Ward

2008-11-25T08:59:00.000Z

At about 7:30 p.m. we got a phone call from Sly, and the boys were standing by to talk to us. Sean had a limited understanding of what Alex was going through, but was worried and solicitous on the phone to Alex (not normal, trust me). Then Mike got on, “wuz up?” I believe was his comment (very normal, trust me). He told me on the phone that he wanted to bring Alex something when he saw her. I told him that she couldn’t have anything with sugar in it, no soda, no juice, no cookies, no candy, no cake. He listens to that, pauses and then says, “Okay, so what you’re saying is I can give her water.” Smart ass. But, yeah, I guess it did sound like that. Know what he brought her? He made her a necklace out of some buttons and, get this, a plastic chocolate chip cookie that came with one of Alex’s cooking sets. Why not rub salt into the wound.

Believe it or not, with the exception of giving birth, I had only once been away from my boys overnight. It felt weird not to give them their good night hugs, which they both come in for every night, even waking me up if I’ve dozed off.

As exhausted, both physically and mentally as I am, the night just dragged and dragged and dragged. I couldn’t sleep. Of course, it doesn’t help that the nurses were in every 2 hours to check Alexandra’s blood sugar level, and then give her an insulin shot every 4 hours. They are extremely vigilant, as much as any nurse in any U.S. hospital. Just not as chatty.

Alexandra’s blood sugar numbers were so high that they don’t even record; our glucose meter, a OneTouch Ultra 2, only registers to 33.3 mmol/L (which is equivalent to 599 in the States), and so it could have been significantly higher than that. We’ll never know, it just says HI. In any event, whether it’s 33.3 or HI, it’s too high.

The doctor has said that Alex’s reading should be between 4 and 8. Jeez, and I kept wondering, is that even achievable? We’re working towards it. As I go through the meter readings, I see that the numbers didn’t even budge until she’d been on insulin and the IV drip for a full 12 hours, and then they dropped too far and she had to be given glucose to bring it back up. Up and down and down and up. At one point, she was 2.9 (52 in the U.S.) and within 2 hours she was at 31.1 (560). It was crazy.

What was also crazy is that we didn’t get any information on what Alex should or shouldn’t be eating. I was scrutinizing packages in the little store on the hospital grounds to see what was sugar-free, totally neglecting the fact (that I’ve since tattooed on my brain) that carbohydrates convert to sugar, too. So the sugar-free oatmeal cookies had enough carbs in it to make the sugar-free point totally moot.

So, anyway, our first night… up every 2 hours or so, shots every 4. Alex took it like the champ that she is. Naturally, I couldn’t sleep. I’d scarcely drift off and the nurse was back. If it wasn’t the nurse, then it was some loudmouth in the hall outside who didn’t realize (care?) that there was a sick kid in the room. Some time after the midnight check (12:34 a.m. 22.7 mmol/L), I gave up and pulled out the laptop. I had, fortunately, remembered to ask for my mini-modem, which has pre-paid units loaded onto it. MTN made a small fortune off me that night, the frigging rip-offs… it cost me about $7 for a lousy 20 minutes online. I needed to email my mom and tell her the news anyway, and ask her to pass the info on to my brothers and sisters. My mom puts CNN to shame, that news was out there so fast, and by the next morning, I had notes and e-cards galore for Alex to read.

Alex was funny when she opened the e-cards. She’d read the message, listen to the music, watch the video. And then she’d say, “Is that all?” She is so used to getting real paper cards (with money in them!!) from Grandma, that she couldn’t really be bothered with the cyber version. Boring. Oh well, I enjoyed them.

By 6:00 am we were both up, since Alex needed her insulin shot and had to eat a half hour after that. Her breakfast was tea with milk and a fake sugar tablet, cornflakes and milk, and a banana. Then we watched the Wizard of Oz. Again.

Today, the plan was to learn to do the glucose blood readings. Doesn’t that sound like fun?

Later!

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Originally published July 15, 2008 at Obroni Observations

Korle Bu: Day 2/Night 2

2008-11-25T08:58:00.000Z

This morning, I beg the nurses to take the IV drip out of Alex’s hand for a little while, so that she can have a shower. Now, I’ve already been down the hall (at about 4:30 am since I couldn’t sleep) and had my morning shower. The water is cold, in case you hadn’t guessed, there’s no hot water heater here. But it’s a refreshing cold, you know, so it didn’t bother me. Yeah, and tofu tastes like chicken. But I can’t subject that to Alex, so I heat up water in a kettle and pour it into our shower bucket, so she can at least have a bucket shower in warm water. I realize that it will be a bit tricky for her to have a shower but not get water on the bandage, so we wrap her hand up in a plastic bag and I wash her down. She’s mostly clean. Good enough.

______________________________

The blood sugar meter we’re using is a OneTouch Ultra 2, and I assume it must be fairly new on the market, because the nurses have never seen this one before. No one knows how to work it. So, they ask me. They’re asking me? How the hell do I know how it works? I take the instruction booklet, and try to figure it out myself. Settings, time, readings… okay, I think I’ve got it. For the first 24 hours, the nurses come in and get the meter from me, then do the test on Alex. I’m forewarned, though; today I’m going to start learning how to do this myself. Guess I’ve got no choice, unless I take a nurse home to live with us.

The nurses come in the early afternoon to teach me how to take Alex’s blood sugar readings and how to give her an injection. This ought to be good. A group of about 4 of them stand over me to watch, it must be a pretty funny sight, or else it’s a slow day on the ward. Alex is biting her lip. I know she’s nervous, and I’m nervous, but this has got to be done.

Okay, wipe off the finger tip, put the strip into the meter… no the other way, check the code. Wait, where’s my glasses? I can’t see without my glasses (it sucks getting old). Check the code, what code? Oh, okay, that code. Got it, match. Now prick her finger. Damn, I wish I didn’t have to do this. Jab. Blood. Good, that’s what I was hoping to get. Enough for the reading? Counting down: 5-4-3-2-1. Success!! She’s HI. So what else is new?

Now the insulin shot. I’m an old pro at shots, or so I think. I used to be an IVF patient, and sometimes had to do this kind of stuff to myself. I’ve got to first draw air into the syringe up to the 4 unit mark (God, the markings on this thing are so tiny!), then inject the air into the vial while it’s upside down. Then, I’ve got to draw the 4 units into the syringe. Remove the syringe, wipe down Alex’s arm and inject. No problem. I can do that. Like riding a bicycle. It all comes back to you, right? Except, I do it wrong.

Back in the old IVF days (15+ years ago, mind you), you kind of made a dart throwing motion to get the needle past the thick skin of your butt. I did this to Alex’s skinny little upper arm. She yelped and the nurse oh, oh, ohed, and I knew I screwed up. Gently, gently. Pinch the skin and insert the needle a bit shallowly. Shit. I hurt my daughter. She’s rubbing her arm and shooting daggers out of her eyes. Is this going to get easier?

The nurses depart (with a story to laugh about for at least a week or so), and Alex is apparently already over the needle fiasco, asking me what’s for lunch. God, isn’t it great how kids bounce back? Well, not sure what lunch is going to be, since Sly hasn’t gotten here yet. The fridge is stocked with fruit, milk, yogurt and cheese, and we’ve got corn flakes and cream crackers on standby. After the prerequisite 30 minute after injection wait, I make Alex up a plate of everything. She eats ravenously, and it’s really nice to see, since she had no appetite over the past few weeks.

Sly finally arrives back at noon, but he can’t stay that long. We have to send him on another errand for more insulin, and he has to go to two labs for the test vials for more of Alex’s blood work. Normally, the patient would go to the lab, make the payment and then they’d take the sample and run the test. With Alex hooked up to the IV, Sly had to do the preliminaries, then we had to get a doctor on the ward to draw the blood, then Sly had to deliver the samples back to their respective labs. Poor Sly. But I am so thankful he’s here, otherwise I’d have to do it. By the time he comes back from running all around the hospital grounds, its 2:30 pm. His cell phone rings. Problem. Its our taxi driver who calls to say that because it’s Friday the boys got out of school early. Crap. We totally forgot. We tell Ekow to take the boys to a local café and let them have something to drink and Sly will be home as soon as he can. Oh, well. They’ll live.

Before he leaves, Sly goes off to get us some food, fried fish, kenkey and white rice. That’s dinner for both of us, plus her fruit, milk, cheese, etc. She’s turning into a little pig, but it’s good.

Alex’s blood sugar levels keep saying HI, and the nurses think that maybe the meter is broken, but when she’s tested on another meter, they both read the same. I guess we’ll just have to wait for the drip to flush her out more.

Another long night is ahead of us, but at least this time we know what to expect. Or so I think. About 2:00 am, Alex wakes up and says she has to use the toilet. Not the bedpan, but the toilet, she’s got to go. Now, she’d been constipated for a couple of days, and nothing seemed to loosen her up at all. I’m thinking maybe all this drip is softening the system up, you know. So, off we trot down the hall to the bathroom, and we stop at the nurses’ desk to get unhooked from the drip.

She goes in and sits and sits and sits. Nothing. I’m waiting outside, poking my head in every few minutes. Nothing. Ten or fifteen minutes of nothing. I suggest she forget about it and try later. No such luck. She absolutely refuses. She says, “It’s right there and it’s got to come out and I’m not leaving until it does.” She’s almost in tears. Thirty minutes later, and she’s still sitting there. Finally, I hear noises, and its not just grunting and heavy breathing. Persistence pays off. I retrieve the water to flush, and she gets reattached to her drip, then we’re back in the room washing our hands and sanitizing and she goes back to sleep with a peaceful look on her face. Cue the James Brown, “I Feel Good” music.

Good night.

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Originally published July 16, 2008 at Obroni Observations

Night #3: Rainy night in Accra or "Yikes, the hospital roof is leaking!"

2008-11-25T08:57:00.000Z

Saturday night saw a great big thunderstorm, and let me tell you, we can use all the rain we can get. We're still experiencing a slight problem with the water levels in our hydro dam, so a little bit rain means fewer "lights off" scenarios.

Except, that the roof leaks. About midnight, right after I'd done Alex's sugar test, I could hear rain outside the window, which is normal, but could also hear it outside the door to the room, which is not normal. Because her level was too high, I had to go tell the nurse who'd have to come and give her a fast acting insulin. I open the door into the hallway, and step into a puddle of water about two inches deep, and about 10 feet in diameter. I'm so glad I had flip-flops, and not my fuzzy bunny slippers on.

This, apparently, is par for the course, as the maintenance man tells me the next morning. "We complain and complain, but no one cares... there's no money to fix it." I can't imagine this ever happening in the states. What a mess. All of the next day, there were half a dozen buckets spread along the corridor to catch the water that must have pooled on the roof.

Alexandra is excited today, because her brothers are coming to see her for the first time. They come in quietly, toting bags of milk and apples for Alex (and Diet Coke and Snickers bars for me), and lunch from a fast food restaurant at the Accra Mall... Barcelo's chicken sandwich is to die for, it is sooo juicy! Alex gets a grilled chicken drumstick and fries (chip, we call it here), and wonders where her candy, juice box and toy are? This is gonna be a hard habit to break.

Mike brings some of his toys for him and Alex to play with, and Sean brings his apron. Yes, you read that right. One of Sean's classes is sewing, and he has brought me his apron to help hem. Final exams are the following week. He's asking for help from the wrong person, let me tell you. I failed home ec in high school. Mrs. Tierney just hated me. It takes me about 90 minutes to finish the hemming (I have got to get needles with bigger eyes... it took me 5 minutes just to thread each one!). Finally, finished, it looks fairly neat and the stitches are about as crappy as Sean's, so the teacher will never know an adult helped. Ha!

While I'm playing Susie Homemaker, Sean is messing around on my laptop; he some how gets wifi (how come I couldn't?) and is quick to jump on Runescape (do all kids obsess about this game?). Then, within minutes, there's a fight for the login rights to the game.

Poor Sly had to leave, and is running the diabetes-related errands again. Today he's on a hunt for the insulin pen and cartridges. Parking is horrible in this city, so he grabs a taxi and heads for Accra Central. No luck at the doctor recommended chemist shop. No luck at three other pharmacies he tried either. But Sly got a winner of a taxi driver who tells him he knows one that might have it, so off they go to Labone. Sure enough, the place has got the pen and the cartridges. As it turns out, this shop is 2 minutes from Sly's mother's house... if Sly hadn't been trying to avoid going past the family house, he might have been there earlier, but that's neither here nor there.

By the time he gets back to the hospital, it's starting to get late, and they all need to head back home. Sly cannot drive at night, and night falls very very quickly in the tropics. Alex gets a little depressed watching them leave her behind; I know she wishes she could go home, too, but the numbers are still way too high.

When they get home, Sly calls to tell me they arrived safe and sound, and were just getting ready to eat dinner. Then he tells me that Sean ironed a hole into his apron, right on the part I just finished stitching. He was so upset, he went and hid in the bathroom for 20 minutes (at 13, he's too big to cry in front of his dad, you know how it is). Another home economics failure... must be in the genes.

Pretty soon, Alex and I are back into our regular nighttime routine of watching the Wizard of Oz, and eating sugar-free oatmeal cookies and drinking a glass of milk before bed, and then it's off to la-la land. For one of us, at least.

Once Alex falls asleep, I decide to go down to the shower and get myself ready for bed. I hear water running (unless it's my imagination, now, since I've been hearing drip drip drip all day long), and push open the door to the "amenity ward" shower, and there's a soapy naked man in there! Oops! I can only see the back of him, but I can tell it's the maintenance man. I open the door and he's apologizing. "Don't worry," I tell him, "it's more your shower than mine. Sorry." The poor guy, I probably embarrassed the hell out of him. Didn't bother me, though. Hey, if you've seen one naked black butt, you've seem 'em all.

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Originally published July 18, 2008 at Obroni Observations

Korle Bu -- Nights 4 and 5 and Finally, Home

2008-11-25T08:54:00.000Z

Let me forewarn you. This is a long post, so if you've got to use the bathroom or need to refresh your drink, go do it now.

Nights 4 and 5 at Korle Bu were really more of the same, except we we no longer had the room to ourselves. A little boy named Issah was put into the bed next to us -- not sure what was wrong with him, though he did need to be given blood at one point. He cried and cried each time they had to hook him up to the bag. The mother was told that he would be in the hospital for 5 to 6 weeks. WEEKS!!! After the doctors left, I heard her moaning to herself, that she was going to die. You've got to understand, at Korle Bu, the parent is also the nurse, and aide and everything else a child needs. No doubt, she was worried about how she was going to exist in the hospital with her son for that long, basically abandoning every other family member in the process. I learned from her later that this was her youngest child (he was about 5), so the others were home being cared for by someone other than she. I'm sure she was also worried about how much something like that was going to cost.

As I said previously, the "amenity ward" had no amenities... just beds separated by curtains (donated by Angel Trust which was embroidered on them in big gold letters!), a small fridge and a sink in the corner. No television, no toys, nothing at all.

Alex and I were lucky because we had the laptop, so when Issah wasn't sleeping or being tended to, we drew the curtains open, turned the laptop around so they could see, and we all watched the Wizard of Oz (yes, again!) and Sponge Bob cartoons. It kept the kids quiet at least.

By the time we were ready to be discharged on Monday, we waited for the bill to be presented. And waited, and waited and waited. By 1:00 pm, no bill, and Sly was getting annoyed, and the kids were hungry. So, we told the nurse we'd be back on Friday for Alex's check-up, and take care of the bill then. Fortunately, they let us go, but for parents who appear not to have the financial means they wouldn't release them. Trust me on that; those parents would have to stay until the bill was settled. Oh, before I forget, the bill was for (equivalent) $78 for 5 nights, and some medical supplies (I.V. hook ups) and we were given credit for the saline we didn't use and gave to the doctor.

Now, even though we'd been in the hospital for 5 days, we still hadn't seen a nutritionist about Alex's food, nor had we been taught how to use the insulin pen. So we left, and figured we'd figure our way through it. And, of course, we have.

Friday we returned for Alex's check-up, and the doctor was pleased with her blood sugar numbers which showed a nice decline. Then she sent us off to the nutritionist. That was a complete joke. With all due respect to the nutritionists, they haven't a single clue as to what a Type 1 diabetic child needs. The tip off to me should have been the fact that Alex was the only child in the clinic, for the whole 2 hours that we were there.

When we went into the nutrition clinic, there was a room full of adults of all ages and sizes waiting to see the nutritionist. Sly fortunately bullied his way in and got someone to take Alex's weight and fill out her card. Then we waited and waited and waited (again). Over an hour passed before we were set to see the nutritionist. Poor Alex was starving by this point, and I kept passing her crackers and juice to eat, but she really wanted lunch and she was due.

We gave the lady a note from the doctor, which basically said that Alex is now in your care, please bear in mind that she is a child and she needs to eat to grow. Very nice. But, who cares what the doctor says. Not the nutritionist.

She told us Alex could have a piece of bread with butter for breakfast, and some tea or milo with a teaspoon of sugar. She could have a ball of kenkey or banku, she should eat a bowl of fufu. She should not take dairy, except for a few tablespoons of condensed milk and then limit intake to only 2 or 3 times a week. She should eat porridge. She should eat green vegetables like kontomire and spinach. She shouldn't eat more than a tin of meat (the tin being the size of an anchovy can). She shouldn't eat eggs more than twice a week.

Well, we listened politely to all she had to say. Thanked her for her time, and them promptly dismissed all that. How in the hell could Alex grow, much less THRIVE, on so little food?!

Here's my take on this lady. She may know her stuff, but only as it relates to overweight adults or children with type 2 diabetes, who need to diet anyway.

So, we basically ignored her instructions. I went online, found a wonderful support group at www.childrenwithdiabetes.com, and learned that Alex can eat anything she wants, as long as her insulin is covered. Meaning, I have to give her enough food and carbohydrates to support the amount of insulin she gets, so that her blood sugar doesn't fall too low.

On the day of the meeting with the nutritionist, Alex weighed 19 kg (that's about 42 lbs and below the 10th percentile for weight). As of today (almost 3 months since the diagnosis), Alex weighs 23 kg (slightly more than 50 lbs). When we went to see Alex's doctor last month, her doctor was so happy to see that her weight increased. She is now probably at the weight she should be, for her age... I just checked, and she's just below the 50th percentile. YIPPEE!!!

Her HBA1C was 14.7 a week after diagnosis. The HBA1C blood test is an indicator of how well a person's insulin needs are being met over the previous 3 months. A non-diabetic person would be around 5. There is a scale, and for a diabetic, between 6 and 7 is ideal, above 7 means you may have to tweak your insulin management, above 8 means you need a bit more tweaking, above 9% to 11% you've been doing a poor job of managing your insulin. Anything above 12% means you're doing a really crappy job and you better get help fast. Alex was 14.7%. Her next HBA1C is next week, so we'll see how she's doing.

I've been looking at Alex's blood sugar levels and averaging them, and she's down to 5.9 (106 on the U.S. scale); she was higher than 33.3 on diagnosis or up in the U.S. 600s range. We have up days and down days, and days that we can't figure out why she's high or low. But we're managing them, day to day, meal to meal.

She started school on Tuesday (grade 3!), and was entirely on her own. She had learned to check her own sugar level over the summer, so that we didn't have to leave her meter with the librarian, as we originally thought. She has shown some amazing independence, really. She's been on the low side each time she checks her sugar, first day was 2.8 (50 U.S.) and 3.2 (58 U.S.) yesterday, but she knows to eat her glucose tabs when she's low and drink some juice. We have to figure out a better breakfast solution to keep her higher until lunch time, cause her snack is not carrying her over well. Today, I tried 1/2 cup of Lucozade with breakfast, so we'll see how that works.

Today, we're off to Korle Bu again. This time, not for a check-up, but for a meeting with other parents of children with Type 1 diabetes. The doctor has realized that, in me, at least, she has found a very vocal, proactive parent, and I think she's impressed with Alex's progress. So, this meeting is a way to give the other parents some guidance or encouragement, from a parent's perspective. I'm looking forward to it. I hope I can help.

Oh, and after the medical injustice posting earlier, you will not believe the positive response to that! So many people have offered to help Ghanaian children with Type 1 diabetes. The parents forum at the childrenwithdiabetes website really rallied behind me, and we've got about 30 brand new glucose meters and some strips heading over here soon, courtesy of Leanne's wonderful husband... you all remember Leanne, right? Leanne is an American Mom in Africa, who had the best stories of life in Ghana. I'm still waiting for her to start blogging about life in Texas, cause I really miss her creative craziness.

Another poster to that blog post works for a company in the U.S. which produces Lantus insulin, and she has been communicating with me and with Alex's doctor and trying to coordinate something between the doctors at Children's Hospital in D.C. and Dr. Renner at Korle Bu. Keep your fingers crossed that soon, these children here in Ghana will have the same support as children with diabetes in the rest of the world.

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Originally published September 18, 2008 at Obroni Observations

Medical Injustice: Don't get Type 1 Diabetes in Ghana (unless you're rich!)

2008-11-25T08:52:00.000Z

Before I get into Night 4 of our hospital stay, I need to take a minute here to vent about injustice; specifically, the injustice perpetrated by medical product manufacturers and pharmaceutical companies to third world countries, such as Ghana.

Alexandra, as a Type 1 diabetic, has two very basic but very specific lifelong needs. She needs to check her blood glucose levels several times every day, and she needs to have insulin administered via multiple daily injections.

Alexandra is lucky. Not because she has Type 1 diabetes, but because she has parents who have the means and access to the things that she needs, in order to keep her alive. Not to draw too fine a point on this, without regular glucose monitoring and daily insulin injections, Alexandra will die.

I and my husband and our family will do all that we can to prevent that. We will ensure that she has her glucose levels tested as often as necessary, sometimes 6 or 7 times a day. And she will have the insulin injections that she needs to bring high sugar levels down, at least twice a day, but sometimes more. And she will be provided with appropriate and nourishing food to ensure that she will grow and thrive. It’s a tricky balancing act, but we are more than up to the task. We have our most precious commodity to consider.

Not many Ghanaian kids with Type 1 diabetes are as lucky as Alexandra. I spoke with Alex’s doctor last week, and told her that I was receiving a lot of online support from a wonderful network of parents of children with diabetes. In fact, I told her, besides the advice and encouragement, we had been offered additional glucose meters so that Alexandra could have an extra to bring to school, and one we could keep for an emergency.

When I mentioned this, Dr. Renner pointed out that the majority of her T1 patients didn’t have the glucose meters, because their parents couldn’t afford it. The meter that we bought, as soon as we were told of Alexandra’s diagnosis, cost equivalent $62. The meter strips, absolutely necessary meter strips, cost $40 for 50 strips. The lancets for the finger pricks are $20 for a box of 100. The insulin was about $17 per vial. We paid cash for all these things, and we continue to buy the strips on a regular basis. So far, I estimate, we’ve gone through about 250 strips. That would be close to $225.

Now, Dr. Renner told us, that because the parents can’t afford a meter, they don’t monitor their children daily. If they have an extra cedi or two, they might take the child to a local chemist who can check the sugar level there, for a fee. But usually, they wait and hope for the best, and if the child falls very sick, either due to low blood sugar (too much insulin) or high blood sugar (not enough insulin), then they take the kid to the hospital and admit him. It’s actually less expensive to admit a child to the hospital for a couple of days than it is to buy a meter and the needed strips.

What a sin. In the United States and elsewhere, the companies that manufacture glucose meters are giving these out free, like candy, to diabetics. Several parents on the support board had two, three or even five free meters in their house and were kind and generous enough to have them sent to me, through my Mom in N.J. We plan to donate these to the hospital.

Insurance in the U.S. covers diabetic needs, though it varies state to state. In Canada, it’s covered under social medicine. In the Ireland, and I suspect the U.K., they’re also covered. A friend of mine from Ireland told me that meter strips are free there; her husband is diabetic, so she knows. Ghana has National Health Insurance, but it only covers insulin, not the expensive strips. I estimate, in Alexandra’s lifetime (which I hope will be a very very long one), she may use 100,000 glucose meter strips. Isn’t that a frightening statistic? What typical Ghanaian family can afford that? None is the answer.

Don’t third world countries suffer the same medical tragedies as other developed countries? Don’t we have enough injustice here, in all other aspects of life? Shame on LifeScan and Bayer, and all of those other international glucose meter companies… couldn’t you donate a couple of these meters to the hospitals here? No, why not? I’ll tell you why -- because it’s not profitable, and that’s their bottom line. Not helping humanity, it’s to make a Buck or a Pound or a Euro.

Don’t average Ghanaian kids with Type 1 diabetes deserve the same chance to live as Alexandra?

Barb

P.S. I want to personally thank the wonderful people (especially you, Adjoa in Vancouver, B.C. and her sister here in Ghana who forwarded my blog) who have donated meters and strips, for either Alexandra's personal use, or as a donation to the teaching hospital for Type 1 diabetic kids. God bless you all.

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Originally published July 24, 2008 at Obroni Observations

There are other children with Type 1 Diabetes in Ghana! Who knew?

2008-11-25T08:51:00.000Z

Late Thursday afternoon, we met with a support group of other parents of children with diabetes here in Ghana. There weren’t a lot of people, but there were enough children there for Alexandra to finally understand that she’s not in it alone. The ages of the children ranged from 1 up to 14 years old. Some of them came with their mothers, fathers, aunties and in one case, grandfather. Not all of the individuals spoke English, some of them were clearly from remote villages, but I thought it heartening that they came all the way to Accra, battling crowded trotros with crazy drivers and long waits in traffic jams, to be a part of this group.

The meeting started out with Dr. Renner asking all of the children to introduce themselves – their name, age, school and how long they’d been “friends” with Dr. Renner. Again, the range was broad, Alexandra and 3 other children were all newly diagnosed, within the last 4 months, and a few of them had been with her for 10 years already.

The first guest of the day was really the most encouraging. Nashir is a 49 year old gentleman, of Indian descent, but born and raised in Ghana. At the age of 7, he was diagnosed with diabetes. He told of how difficult it was as a child, how he had lost almost half of his weight due to incorrect diagnoses for 4 months, and finally a doctor at the Military Hospital saying, “Hmmm, could this be diabetes?” He offered such encouragement, maybe not so much to the children who were busying themselves with the free food that Dr. Renner had begun handing out, but the parents were enthralled. He looked fit, trim and healthy, and his outlook on diabetes – as a disorder, not a disease – gave us all hope and reassurance. It is possible to live a long and healthy life, even here in Ghana!

The doctor was talking about nutrition, and I realized that she was aware of the (mis?)information from the dieticians because she indicated that children shouldn’t be restricted to a “finger” of this or “two fingers” of that, which is the way the dieticians describe the amount of food to eat. She understood that children need to eat to grow. With that in mind, she started passing food around. Oh boy.

Just prior to the start of the meeting, Alexandra had polished off half a dozen crackers and a small juice box. She really didn’t need all this food now, but I couldn’t deprive her, because everything looked so nice. First, juice boxes and then individual trays of fruit were handed out to the kids. Alex had both. Then they passed around sandwiches which we were told were “healthy” – consisting of tuna fish, lettuce and tomato on white bread. It looked nice, but Alex preferred the two meat pies that were handed out to the parents! So, she gobbled that down instead. Then cream crackers were passed around and some weird concoction that woman had donated – she claimed it was milk and juice mixed together, but it was warm and not so nice. A lot of whispering was going on as people sniffed and sipped, and I was reminded of one of the Little Rascals episodes… whisper whisper “don’t drink the milk, it’s poisoned.”

A clinical psychologist was on hand to talk to the children about difficulties, and the kids spoke of being upset that they couldn’t eat sweets like their friends could, and some were upset because they were singled out in school or being called “sickler,” which happened to one little girl who had passed out from low blood sugar. That little girl, well, I don’t think she’s got a glucose meter so she never knows how low she goes. Her mother saw me take out Alex’s meter to check her sugar at the end of the meeting, and asked to see it to show the girl’s grandmother.

The doctor singled me out to list some websites on the board which were very handy, and naturally I listed all of my favorites which have been so helpful to me. She also mentioned that a brochure would be available shortly and that Alexandra was going to be on the cover of it!

By the time we left it was almost 6:00 pm, and Alex was due for her insulin. She checked her sugar – 15.7!! – all that food, I guess. But I gave her her insulin and by the time we got home and she was ready for a snack, she was back to normal ranges.

I’m anxious for another parents’ meeting. Hopefully, by that time, I’ll have some donated meters to give out. These kids deserve a chance.

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Originally published September 23, 2008 at Obroni Observations

Alex's great HBA1C! 6.0% Beat that!

2008-11-25T08:50:00.000Z

Last week, Alex had to go to the lab for her HBA1C test. We went to do the blood draw on Tuesday and picked up the results on Thursday. For the uninitiated, the HBA1C shows how well insulin and sugar levels are maintained over the previous 3 month period. When Alexandra was diagnosed, her HBA1C was 14.7%. Anything over 10% is poor diabetes management, and all diabetics strive for numbers in the single digits.

Well, drum roll please, Alex's HBA1C was 6.0%!! That is almost as good as mine! (Non-diabetics are usually between 4% and 5%.) Granted, she's still in her honeymoon, so her own body is helping by kicking in a little insulin. But, it means that we're on top of this, and with God's help, we'll stay on top of it.

We go back for another test in December, and hopefully we can stay in that very nice range.

When we saw Alex's doctor on Friday, her jaw dropped so fast and far it nearly hit the desk! I am convinced it's because most locals don't have the tools and means (i.e. money) to keep their kids in range.

On a side note, meters donated by many many people have finally arrived in Ghana and I should be collecting them next week. Dr. Renner will have them in her hands by mid-October when she returns from holiday. I hope that in this small way, we are well on our way to helping other Ghanaian children achieve great HBA1C tests, just like Alex's!

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Originally published September 30, 2008 at Obroni Observations