tag:blogger.com,1999:blog-6009003640218264522024-02-20T01:39:14.052-08:00True's TruthChristyhttp://www.blogger.com/profile/08709117747289512736noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-600900364021826452.post-61324707952930252652012-11-14T13:03:00.005-08:002012-11-14T13:03:57.337-08:00World Diabetes Day <!--[if gte mso 9]><xml>
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<br />
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Today is World Diabetes Day, and it’s National Diabetes
Month, and I wonder what that means for us personally. When I went to the
grocery store today there was a sign on at the register that you could donate
money to the JDRF with your order. It’s everywhere right now. Bu it’s not like
I ever forget though that I have a child with diabetes. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remembered yesterday when I jabbed my finger with his
needle after giving him a shot in the arm and then instinctively putting my
finger in my mouth and finding out the hard way that insulin does not taste
good. </div>
<div class="MsoNormal">
I remembered a few weeks ago when True broke his collar bone
and suddenly could not give himself his injections without help as his arm was
in a sling to allow the collar bone to heal correctly. </div>
<div class="MsoNormal">
I remember every night when Todd’s phone alarm goes off to
remind us to give him his Lantus (long-acting insulin) since one night we both
got busy and forgot and it was unfortunately the night before going to an
endocrinology appointment and we both felt like stupid parents. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remember every day when he comes home from school and the
first thing I do is ask him about his day, and the second thing I do is remind
him to check his blood sugar. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remember every time my cell phone rings, worried that it’s
about True, that something is wrong with True. </div>
<div class="MsoNormal">
I remember every day when I sit down at my computer and read
my Google news feed for type one diabetes and I read about the newest form of
insulin or a pancreas transplant or about the man who died of ketoacidosis
because his insulin pump malfunctioned. </div>
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<br /></div>
<div class="MsoNormal">
I remember every single time I leave the house with True as
we must pack along a glucose monitor, his insulin pen, some 15 carb snacks to
treat low blood sugars and his glucagon shot for an emergency low blood sugar
situation. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I remember at every birthday party we go to because we have
to try to guess how many carbs are in the slice of cake that True is about to
eat and hoping we guess pretty close so we can give him the accurate amount of
insulin. </div>
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<br /></div>
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I remember at every single meal because every single meal
includes blood sugar testing and a shot of insulin. Every single time. </div>
<div class="MsoNormal">
<br /></div>
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Basically, I never forget that True has diabetes. It is such
an active part of our everyday life. And I wish I could say I’m not still
worrying about it, but I am. I wonder when I’ll stop, or if I’ll stop. It doesn’t
matter how many people tell me about how well their diabetic children or friends
or relatives are doing. There is always someone there to tell me how their
friend or relative died or faced amputations or blindness and then I read about
the death rates and it just scares me. I think it will always scare me. I
figure I’m in control of his diabetes care until he is at least 18. For now I
will manage it the best I can and feed him the best I can and then he will go
off to college and I can only hope that he will take good care of himself. </div>
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<br /></div>
<div class="MsoNormal">
For now, I still worry on a day to day basis. If he comes
home and his blood sugar is low (as happens quite often) I wonder why. If his
blood sugar is low in the evening, Todd will often get up in the middle of the night
to check it again to make sure he is okay. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s been exactly two months now since diagnosis and I guess
you could say we have sort of normalized diabetes care in our life, but I
wonder how normal it is to have to cut your skin and inject yourself at least 5
times a day?<span style="mso-spacerun: yes;"> </span>True doesn’t complain. We
thought Halloween might be an issue but he managed the candy well, having just
one after school and having the rest with meals so that he was covered
insulin-wise. And on occasion he’d take an extra shot to have candy. We had no
problems with blood sugars and the candy season. It all went well. He doesn’t
seem to mind other than occasionally voicing that “diabetes sucks!” and as
always, I just agree with him and we move on. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As we approach Thanksgiving I am both thankful for his
health, and resentful that he has to put up with this. I’m also wondering how
the hell we will guess at the carbs for a Thanksgiving dinner. Anyone know how
many carbs are in pumpkin pie?! I’ll know by next Thursday! Everything is
complicated now. A peanut butter and jelly sandwich is no longer just a
pb&j, it’s a carefully measured and balanced food item that I know the
exact carbohydrate content of. I have a food scale that measures everything.
True requested chips for a treat today and since I was at the store I bought
some and I had to weigh out those chips to make sure he didn’t go over his allotted
“free” 15 grams of carbs snack. It’s always somewhat complicated. I can’t ever
just throw dinner on the table anymore. There is always carb counting and
insulin calculating to do. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So it may be World Diabetes Day – but for us, <i style="mso-bidi-font-style: normal;">every day</i> is Diabetes Day. </div>
Christyhttp://www.blogger.com/profile/08709117747289512736noreply@blogger.com2tag:blogger.com,1999:blog-600900364021826452.post-19807189685622998372012-10-16T12:01:00.002-07:002012-10-16T12:02:35.714-07:00One Month<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
It’s been one month and three days since True’s diagnosis.
It’s funny because Todd and True say that they feel like it’s been much longer
and that it feels like we’ve been dealing with diabetes forever. To me it still
feels like yesterday. I’m still not comfortable with it. It still scares me. It
still confuses me. It still worries me. The day will be going by as usual and
then suddenly True will say he doesn’t feel well – he might feel dizzy or
headachy. I’ll tell him to check his blood sugar and it’s dropped to 62. For no
reason. It’s just dropped. I quickly give him some juice or a sugary snack to
bring his blood sugar back up and then in a few minutes he feels relatively
okay again. But there is no warning for these little episodes. It just happens,
out of the clear blue. That leaves me disconcerted. What if he drops really low
at night and we don’t know? I shudder to think of what could happen. Todd is
really good about checking his blood sugar in the middle of the night if we’ve
noticed he’s been running low on a certain day but that doesn’t give us 24/7
reassurance. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are these little devices called CGMs – Continuous
Glucose Monitors that stay on the person all the time and alerts the user of
high and low blood sugars and I will definitely ask about getting one at our
next endo clinic appointment, but they are very expensive and IF insurance even
approves them there is still a lot of high co-pays, so I hear. But that
reassurance, while imperfect, might be nice. I don’t know how True would feel
wearing a device on his body all the time, but it might make his life easier as
well. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Easier. That’s not really a word we use very often. Nothing
is really easy with diabetes. Everything has to be so pre-planned. Yesterday
True went to a friend’s house after school. He called and asked if he could
stay for dinner – they were ordering pizza. I said yes, and drove over all his
supplies – glucose meter, insulin pen and needles, emergency snacks. He called
me at 5:30 and said he checked his blood sugar and it was only 73 and they didn’t
have dinner ready yet. I had him eat one of his emergency snacks. He usually
eats at 5pm. It did not surprise me that his blood sugar was dropping at 5:30.
I cannot control what time other people eat. He called again at 6:20, dinner
was finally ready. I had to look up the nutrition information for the pizza
place they ordered from and try to figure out the amount of carbs (it’s the
carbs that matter, NOT the sugar as many people think) and in two slices of
pizza and one bread stick. It was a huge amount of carbs and it needed a high dose
of insulin. I figured out his dose and told True and he injected himself and
went and ate dinner. I got a text 20 minutes later that he wanted “one more tiny
bit of breadstick.” Previously in our lives that wouldn’t have been a problem.
But he couldn’t have one more breadstick, because he’d dosed for a certain amount
of carbs and more carbs would throw off his carefully calculated blood sugar
level. I had no way of knowing what the carb amount was for a “tiny bit of
breadstick was” so I had to tell him no. He was frustrated that he couldn’t
just have a damn little of piece of bread. So was I – but right now it’s just
complicated. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That’s again where technology comes in. If he had an insulin
pump, he probably could have had that tiny bit of bread. But now it’s just too
complicated. And we are told that a pump, if we can afford it and get insurance
approval for it, is a year off. The endo clinic said maybe by his diagnosis
anniversary. That’s eleven months away. So for now, we do it the old fashioned
way with calculators and needles. It’s only been one short month. One little
month. A lifetime to True. Mere seconds to me, still bumbling to do everything
right. </div>
<div class="MsoNormal">
Last night I was tucking True into bed and he said, “I hate
diabetes.” I never know what to say or do when he says that. I just said, “I
know. I do too.” Is that the right answer? Is that supportive or the opposite
of supportive? Some say we are made stronger by life’s challenges and that we
learn from them. I don’t really agree. This is just one big pain the ass for a
sweet little boy to have to go through. It complicates life immensely. We
endure the challenges because we have to. We are strong – but because we have
to be. To have to endure endless finger pokes and injections takes tremendous strength
and True complains so rarely. One kind person at temple told me the other night
that he is a little hero. He kind of is. At least to me he is. Any kid that has
to deal with a disease is, and he does it with such grace and dignity. So much
more than I. I am still calling Todd for reassurance at times with certain
insulin doses. I don’t yet have the confidence that Todd has. Todd handles the morning
and lunch insulin doses and I handle the afternoon and dinner and we share the
evening shot depending just on who is around to give True his nighttime shot
(the only one he needs help with as it’s a different insulin, not in the pen,
and it goes in his hip.) </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This seems like an insane way to live sometimes. For the
year 2012 it seems like a not very modern approach to a very old disease. I
wonder if there will be a cure in this life time. I read an blog post yesterday
about little research there is for diabetes compared to breast cancer. It read:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">In 2012, according to
the National Institutes of Health, 39,920 women and men died from breast
cancer. In 2007 (the latest year for which statistics are available) 231,404
women and men died from diabetes, according to the Centers for Disease Control
and Prevention.</i></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">According to Marie
Claire magazine in 2011 “an estimated $6 billion is raised every year in the
name of breast cancer. And the money keeps pouring in.”</i></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">By contrast, in 2010,
according to diabeteshealth.com, “$150 million [was] earmarked for research
specifically on type 1 diabetes” by the federal government’s National
Institutes of Diabetes and Digestive and Kidney Diseases. The Juvenile Diabetes
Research Foundation, meanwhile, raised $1.4 billion for research. But, oh wait,
that’s the total amount of money raised since the JDRF was founded in 1970.</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Why so little money for diabetes? It’s just not trendy. I’m
glad breast cancer gets so much money, I just wish the disease True has could
get as much money. It scares me that so many people die from this disease and
that compared to other diseases, there is so little research money going
towards a cure. Yes, insulin is a god send. But it’s still an archaic treatment
when my baby boy has to poke himself a dozen times a day. I know a pump would
help, but that’s not a cure either. I want a real cure. Not just management. I
hope I live to see that for my boy. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s only been a month and I miss our carefree life. I miss
baking cookies for my boy. I know I still could, but not without doing a hell
of a lot of math and then him having to take a shot to be able to have more
than one. I miss buying little treats for him in the store that he can have
after school as a surprise. I miss just sitting down to dinner and not having
to spend 5-10 minutes figuring out carbs and insulin doses. I miss just going
out to dinner anywhere we want and not being limited to places that have posted
nutritional information with carb content somewhere online or otherwise. I miss
the days when food was just food and not a mathematical experience. Everything
is so complicated now. I can’t believe we’ve survived a whole month of this. I
wonder if I will ever get used to it. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I suppose I will. I suppose one day I will gain confidence
and security in what I’m doing. But I wonder if I’ll ever stop worrying. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What really helps is the amazing support from family and
friends. Everyone’s patience and encouragement and understanding has been so
helpful. Tag’s friend Desiree made a great poster board for True that says, “Stay
Strong True” that was really special. True was really touched as was I. In this
month even though it’s still complicated, things have somewhat normalized. We’ve
established routines and True is just used to it. True and I have been going on evening walks each day which has been nice. We talk about life and rarely does diabetes come into the discussion anymore. Life goes on – just in a more
complicated way. We’ve survived the first month. We’ll keep on surviving. </div>
<div class="MsoNormal">
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<a href="http://3.bp.blogspot.com/-ZYmQ9_Kv3Vk/UH2uVFCr66I/AAAAAAAAAG4/4C6O8y0XhjU/s1600/12+-+1" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-ZYmQ9_Kv3Vk/UH2uVFCr66I/AAAAAAAAAG4/4C6O8y0XhjU/s320/12+-+1" width="239" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What I don't like to see!!! It always comes out of nowhere... </div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-7d2qvKb7l7k/UH2uXtJinnI/AAAAAAAAAHQ/U2f4npcBqqE/s1600/12+-+1" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="http://3.bp.blogspot.com/-7d2qvKb7l7k/UH2uXtJinnI/AAAAAAAAAHQ/U2f4npcBqqE/s320/12+-+1" width="320" /></a></div>
Poster by Desiree.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-vjEEoOszI7w/UH2uv_lVyWI/AAAAAAAAAHo/GhIRBsP1FLc/s1600/12+-+1" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-vjEEoOszI7w/UH2uv_lVyWI/AAAAAAAAAHo/GhIRBsP1FLc/s320/12+-+1" width="239" /></a></div>
True and Willoughby out for our regular evening walks. <br />
<br />
<div class="MsoNormal">
</div>
Christyhttp://www.blogger.com/profile/08709117747289512736noreply@blogger.com0tag:blogger.com,1999:blog-600900364021826452.post-14410358336825116632012-10-08T14:47:00.002-07:002012-10-08T14:47:59.633-07:00First Days <!--[if gte mso 9]><xml>
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Honesty, the first days at home with True were kind of
scary. At least for me. There we were with needles and syringes and a bottle of
insulin, a couple glucose meters and test strips and we a folder full of
information and we were expected after just 3 days of education to be able to
care for a diabetic child on our own. We felt both ready and unready and also a
little bit terrified all at the same time. The impact of the situation had not
yet hit us and I think we were running on autopilot those first days. We got
through the weekend and on the first day back to school we skipped Rosh
Hashanah services and instead I met with the school nurse to deliver True’s
school plan that the doctor’s sent us home with and the nurse knew more than I
did. I felt like an idiot. She knew when he should test and when they should
call me and honestly, I didn’t even really know those things with real
confidence. </div>
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<br /></div>
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Somehow we got through it all though. We got through the
first weeks of testing in the middle of the night (which Todd took care of
since he is a lighter sleeper than I). We got through the meeting with the
school counselor, nurse and assistant principal to make a 504 health plan for
True. We got through the first three hour diabetes education class. And then
came our first clinic day. </div>
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Our appointment was at 9:00am. We valet parked at U of M
Children’s Hospital which is so much more convenient. We found the
endocrinology clinic and filled out some paperwork. The wait wasn’t too long
and the waiting space was large and cheerful with big windows. Then we were
ushered into a typical clinic looking room. Unfortunately, for the first time
in his illness Todd and I had both forgotten to give True his Lantus (the long
acting insulin) the night before so when they checked his blood glucose it was
high, making us both feel like bad parents. We had to admit we forgot it, and
we truly looked like idiots. I don’t know how we all forgot – it was the first
time (and the last) it happened. After the nurse checked his blood sugar we met
with the dietitian who tried to talk True into expanding his diet. Nice try. I’ve
been trying for years. She gave him a handout about Halloween and talked to him
about nutrition. After seeing her we saw the children’s diabetes social worker.
We all talked to her about how things were going. Then we saw one of the
endocrinology fellows. She checked over our blood glucose logs and did a
physical. It surprised me that she checked his feet already. It felt rather
daunting of risks to come. She said they just like to get in the habit of
checking at an early age but that they don’t expect to see any problems for
many years to come, but still, it was smart to keep an eye on the feet. My baby’s
sweet little feet. I cringed in fear of anything ever being wrong with them. </div>
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She left and came back with the attending who talked to us
for about 10 minutes and by the time the doctors left we had been in the clinic
for a good two hours and twenty minutes. We went from there to seek out the big
cafeteria in the main hospital so we made the long trek through the hospital to
find it. We got the guys lunch and then found a Starbucks for me where I could
warm up with a chai latte and then Todd found us a lounge area to kill time in
before our second 3-hour diabetes class started. By the time the class was over
we had spent 7.5 hours in the hospital. We were relieved when it was over as
God willing, that’s our last time at the hospital until our next clinic
appointment until December! It feels like a huge relief to be free of all the
meetings and appointments. </div>
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Now it’s been over three weeks since True’s diagnosis and we
feel pretty comfortable managing his illness. I’ll admit that both True and I
finally did have a breakdown day where we both lost it. Mine was after an
appointment I had. I came home, made a pot of coffee, and just sat here at my
laptop, writing and crying for hours. The diagnosis just seemed so unfair and
so harsh. He’s only eleven. Why not me, instead of him? Why a boy so young? Why
my boy? Why the rest of his life? Where is the cure? This is forever! It just
all finally caught up to me and I just needed to cry it out. I halted my tears
before the boys came home. Interestingly, True had a similar meltdown that
night, with the same frustrations. He was sick of the restrictions. Sick of the
shots and blood checks. He just wanted life to go back to the way it was. His
meltdown was so painful to me. What could I say other than he was right, it was
so unfair, and I wish I could take it away from him. </div>
<div class="MsoNormal">
I worry all the time now. I worry he’ll get sick. I worry
his blood sugar will go too low. I worry about complications. I worry about his
future. I worry about his day-to-day life. I worry that I’m doing things wrong.
I worry because I don’t get the math and have to depend on the excel program
that Todd gave me to do the math for me. I worry. I worry. I worry. For the
past three weeks diabetes has basically consumed me. I live it. I dream it. I
have nightmares about it. I dream he is unconscious and seizing and I cannot
find his lifesaving injection of glucagon. It’s as if diabetes has invaded my
brain and taken over. I read books and blogs and try to fill my brain with
information, as if somehow that will shield us from anything bad happening. If
I just know more about it I can protect my child. I wish it were that simple,
but for now I feel this great need to arm myself with knowledge. I want to
understand this, and why this happened. But really, I’ll never truly know why,
will I? </div>
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<br /></div>
<div class="MsoNormal">
For now we are doing okay. As okay as we are going to get
for now. True has adjusted well. He checks his blood glucose like a pro and he’s
graduated from syringes to an insulin pen which he likes much better and it
makes dosing insulin much easier. He’s not limited on his carbs anymore now
that we have a carb insulin ratio and correction factor. We just have to put
his carbs into that mathematical equation and adjust his insulin accordingly.
He even managed to go camping overnight with his trusty pen in hand. We still
have bumps in the road – like me forgetting to pack a needle with his insulin
pen when he went out to dinner this weekend – but it’s all part of the learning
curve I suppose. And that’s what we are doing right now – learning as best we
can. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-WZh8IyAOX8w/UHDQHraKjLI/AAAAAAAAAF0/b-45dOaDfds/s1600/12+-+1" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-WZh8IyAOX8w/UHDQHraKjLI/AAAAAAAAAF0/b-45dOaDfds/s320/12+-+1" width="239" /></a></div>
Hanging out at Children's Hospital<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-lY9ex-soVQY/UHDQK4Ye64I/AAAAAAAAAGI/opFvP55kfmo/s1600/12+-+1" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-lY9ex-soVQY/UHDQK4Ye64I/AAAAAAAAAGI/opFvP55kfmo/s320/12+-+1" width="239" /></a></div>
Waiting for the car outside the hospital<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-CIjbpGva_xE/UHDQNYBsUTE/AAAAAAAAAGU/DSDQ30ybfwQ/s1600/1061212" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="http://4.bp.blogspot.com/-CIjbpGva_xE/UHDQNYBsUTE/AAAAAAAAAGU/DSDQ30ybfwQ/s320/1061212" width="320" /></a></div>
Fancy new insulin pen<br /><br />
<br />
<div class="MsoNormal">
<br /></div>
Christyhttp://www.blogger.com/profile/08709117747289512736noreply@blogger.com0tag:blogger.com,1999:blog-600900364021826452.post-86041889753952764962012-10-06T17:36:00.005-07:002012-10-06T17:37:18.175-07:00Hospital Days<!--[if gte mso 9]><xml>
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September 13-16th </div>
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I couldn’t sleep that first night in the hospital. The chair
that opened up into a magical bed was surprisingly comfortable but I couldn’t
fall asleep. My head was buzzing with anticipation of what would happen the
next day. True was sleeping soundly, or as soundly as one can sleep with an IV
hooked up to one’s arm, and having a nurse come in and poke your finger to
check your blood sugar multiple times, and waking to use the bathroom multiple
times. I barely would fall into a light doze when the nurse would come in and I
would startle into an alarmed state of alertness thinking something was wrong
and she would smile and say, “It’s just me” as I jolted upright. I’d smile and
nod and she would say, “You poor thing, you wake up every time I come in the room.”
I would say, “That’s okay,” as I wasn’t really sleeping anyway. My head was too
full of worry for sleep. At 5am some light started to enter the big window. I
climbed from my chair-bed and gazed out and realized it was raining. Such a
grey, bland morning. I also realized that we had a beautiful view of the river
running through Ann Arbor that we hadn’t been able to see in the dark of night.
I stretched out and waiting for the sun, that wouldn’t really show itself. </div>
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While True slept I decided it was a good time to sneak out
of the room and try that coffee from the nutrition station room that the host
had so kindly shown me. I walked down the brightly lit hall. It was eerily
quiet. I went in and there was thankfully a fresh pot. I poured myself a
stryrofoam cup full. It was pretty awful coffee, but it was warm, and fresh and
thus welcome to my tastebuds on a dark, damp morning. I went back to room 11 to
wait for Todd and wait for our very active day to start. </div>
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At 6am the lab tech came to do a blood draw, which woke True
up. He couldn’t fall back to sleep after that. I helped him up and helped him
to the bathroom. I was so relieved when Todd finally got there at 8:00,
grateful for company. I had Todd bring me my coffee tumbler from home and
filled that sucker up, prepared for a full day. We ordered True breakfast. We
were now on a regime of 75 grams of carbs and a set dose of insulin. We had to
calculate out just how much he could eat, and actually we had to give him a bit
more to eat then he usually has. He had a nice breakfast of pancakes with
butter, no syrup, just like he likes it and a side of bacon and some chocolate
milk. He said the food was “amazing”. To this day he will say that was the best
part of the hospital. Go figure. </div>
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The dietitian team was the first group of people we met –
they were there bright and early at 9am. Three of them! A dietitian and two
students. They gave us an hour long talk on reading nutrition labels and
counting carbs. None of it was news to us and poor True was bored senseless.
All he wanted to do was turn back on the television. I could hardly get him to
pay attention. They gave us a big folder full of information, a booklet on food
nutrition info and then a book on fast food nutrition info so that we can count
carbs while eating out. True was relieved when they were finally gone, and
admittedly, we were a bit too. Perhaps some people don’t know how to read
nutrition labels or count carbs, but we aren’t those people. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
True had a little time to relax, but not much. Next came the
children’s diabetes social worker. She was very helpful. She explained a lot to
us and told us how things would work with school and talked to us about
insurance issues and emotional issues and how the clinic worked and she was
just really helpful. We all instantly liked her. She talked to us for about an
hour and then it was time for lunch and another round of blood sugar testing
and more insulin.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After that the endocrinology doctors came in to meet us.
They taught us about what diabetes were and how insulin worked. They talked to
us for about a half hour or so and they were actually very helpful but they
came around lunch time and all True wanted to do was eat. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The day was busy, with many blood sugar checks, insulin
injections, doctor visits (residents, attendings, etc.) and the dietitians. We
also started learning to give True injections and he started learning to give
them to himself. We started practicing on a nectarine, and I was actually the first
one to give True a shot and it was easier than I thought. True never winced or
complained the whole time about the pain except for saying that the blood sugar
testing did hurt a little. There was one moment when Todd was gone at the
cafeteria that True had a slight meltdown and was in tears saying he was sick
of the pokes and shots and he didn’t want to do it anymore. I didn’t know what
to say except that I understood. At that moment the nurse came in to give him
his insulin. I gave him a hug, told him we’d get through this. He wiped away
his tears, took the needle, and injected himself right in his belly. And that was
the end of his tears. </div>
<div class="MsoNormal">
We were also busy fielding phone calls from family and
friends and the school and even our Rabbis. We were grateful for all the
support. In the evening Todd went home and got Tag and brought him back to
visit. The boys played around with the gaming system until about 9:30 and then
left for the night. This time I wanted True to get some sleep and get to bed at
a decent hour. There was no way I was letting him stay up late again and I was
exhausted.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By 11:00 we shut everything down and I turned that magical
chair into a bed again, put the sheets on it and changed into a hoodie and
crawled into bed and this time, I fell almost instantly into sleep and stayed
that way until nearly 6am when I heard the nurse come in. I sat up and she said
hello and I told her I couldn’t believe I slept this time. She said she was so
glad I did, and she told me that True didn’t even wake up when she tested his
blood sugar. We were both exhausted. I let True sleep, and this time there was
no lab tech to wake him up. The endocrinologist said she’d be back early so I
asked Todd to be back at 7:30 so I patiently waited for him. I once again
filled my tumbler full of that awful but suitable coffee and waited for another
busy day to start. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We saw the resident early and she said if we got True set on
learning to do his own injections and blood sugar testing we could go home that
day. We were given a “Bag of Hope” from the JDRF with a glucose monitor, a video,
a book about diabetes, a carb counting book and tons of literature about
diabetes and a teddy bear (named Rufus!) that all kids with diabetes get and we
got a huge bag from the pharmacy with all the starter supplies we’d need. The
nurse helped us practice so we’d be ready to be on our own. True even practiced
giving an injection into his Dad! By this third day we were sick of the
hospital and it was a beautiful Saturday and we were all tired and ready to go
home so we definitely wanted to prove ourselves and get out of there. We met
with the endocrinologists again and that went well. We made sure we knew what
we were doing, and we saw all the doctors and True’s labs were all good so by
late Saturday afternoon we were given the go-ahead to get out of there. Grandpa
and Grandma came to visit True around discharge time which was great as they
were a welcome distraction while he was getting his IV out and while Todd and I
were busy getting the lengthy discharge instructions. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We left with not only our own big bags but now a backpack
full of supplies and two grocery size bags full of diabetic supplies. Monitors,
test strips, keytone strips, alcohol wipes, syringes/needles and two kinds of
insulin. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Three days after walking into the hospital, confused and
frightened, we walked out, confused and frightened. We were certainly afraid of
the task that lay ahead. For three days we had medical staff watching over us
making sure that True’s blood sugar was stable and making sure he was okay, and
now it was all up to us. The endocrinologist was going to be calling us the
next day to check on us, and we had an appointment in the clinic in two weeks,
and we were scheduled for two three-hour diabetes education classes one in each
of the next two weeks. And the nurse practitioner would be calling us every day
until we got True’s “carb ratio” and “correction factor” at the clinic
appointment. So we weren’t totally abandoned. We had emergency numbers to call
in case there were any problems. During the long hospital days I had read the
145 page “First Book of Understanding Diabetes” that was in our free backpack
so I had a beginning grasp of what we were doing and the doctors and nurses had
prepared us well. Still, it was scary. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But we were as ready – or at least as ready as we were going
to be. Now came the real challenge. We were on our own. </div>
<div class="separator" style="clear: both; text-align: center;">
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<div class="MsoNormal">
Sleepy Boy</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-MD_f1VShqbY/UHCZADTwsnI/AAAAAAAAACs/zjsg_AL809w/s1600/12+-+1" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="http://4.bp.blogspot.com/-MD_f1VShqbY/UHCZADTwsnI/AAAAAAAAACs/zjsg_AL809w/s320/12+-+1" width="320" /></a></div>
<div class="MsoNormal">
True's Room</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-qOUHGGkIBHY/UHDF39snVnI/AAAAAAAAAEE/k-GuMOSQD28/s1600/12+-+1" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-qOUHGGkIBHY/UHDF39snVnI/AAAAAAAAAEE/k-GuMOSQD28/s320/12+-+1" width="239" /></a></div>
<div class="MsoNormal">
Room Decor</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-pY7kA9Ivi94/UHCZHYEIAnI/AAAAAAAAADI/kVBEKRaLaXc/s1600/12+-+1" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-pY7kA9Ivi94/UHCZHYEIAnI/AAAAAAAAADI/kVBEKRaLaXc/s320/12+-+1" width="239" /></a></div>
<div class="MsoNormal">
Rainy View </div>
<div class="MsoNormal">
<br /></div>
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Practicing Injections on Dad <br />
<div class="MsoNormal">
<br /></div>
Christyhttp://www.blogger.com/profile/08709117747289512736noreply@blogger.com0tag:blogger.com,1999:blog-600900364021826452.post-65735042111805374302012-10-06T13:11:00.003-07:002012-10-06T13:39:33.380-07:00Diagnosis Day <!--[if gte mso 9]><xml>
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<div class="MsoNormal">
A mother knows when there is something wrong with her child.
Something seemed off with True. He didn’t look right. He didn’t seem right. He
seemed unusually tired. Todd said it was from starting middle school and
getting up earlier, but he still didn’t seem right to me. He seemed thirsty to
me, and told me he was going through his water bottles quickly at school. He
also told me he was using the restroom between most of his classes. My mother
instincts just told me something was wrong. I thought maybe he had a UTI, but I
also thought in the back of my mind that those were symptoms of diabetes. I
looked up his symptoms online and both were possibilities. Being a paranoid
mother I wanted to rule them both out so I asked Todd to call the pediatrician
and make an appointment on Thursday morning so that we could take him for labs,
thinking they’d send me for a fasting glucose and UA on Friday morning – and thinking
that it would suck having to wait the weekend for results.</div>
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On Thursday September 13, 2012 we had an appointment at our
pediatrician in Ann Arbor right after school at 4:30. We were told to tell True
to not use the bathroom after school as they would want a urine sample when he
got to the office. I was a bit surprised by that since they don’t have a lab
there, I didn’t realize they did any type of lab-type tests. We headed out at
3:45 for the long drive due to construction and we had plenty of time to chat.
True was talking about how different school is this year, being at a new school.
“Middle school is a game changer mom. It’s so differnet! <span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">Life</i>
is a game changer!” I just nodded my head in agreement. “You’re right True.
Life certainly is a game changer,” I said. Not knowing how in one short hour,
how significant those words would be. </div>
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We got to the doctor’s office and they had True do the urine
sample right away. I had to explain to the poor boy how to pee in the cup and
he laughed at the awkwardness of it. Then we saw Dr. S and he did a physical
exam and asked some questions. Then he went and got True’s urine sample and did
a dip stick. We sat there nervously waiting for the results to come up. I was
waiting for it to show bacteria or something weird that would prove to be a
urinary tract infection or something. I had no idea what to expect. I was truly
ignorant. Then he nodded and said, “Yeah, this is what I thought when you
described the symptoms. There’s glucose and keytones in his urine. It’s type I
diabetes.” </div>
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I was shocked. Absolutely shocked. I didn’t even know you
could diagnose diabetes with a urine test. The first words out of my mouth
were, “But we did everything right! I fed him well and he exercised a lot this
summer!” Dr. S said, “It’s not that kind of diabetes. It’s type I, it’s not
caused by diet and exercise. It’s just something that happens. The pancreas
just stops producing insulin. There is nothing you could have done to prevent
his.” </div>
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I looked at True and he looked as blown away as I was. Dr.S
said, “It’s getting close to 5:00. I need to get on the phone with the
endocrinology doctors and see what they want you to do. The probably will want
you to go right to the hospital. Probably through the ER. You have Blue Cross,
right?” “Yes,” I said, Suddenly so grateful for our privilege of good health
insurance, away of what that meant. “Good,” he said. “I’m going to call them
and get ahold of them before they leave for the day.” </div>
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He left us alone and that’s when True lost it. He burst into
tears. “I have diabetes! My life sucks!” He knew what it meant. “I have to take
shots for the rest of my life! My life is going to suck! This sucks!” I tried
to hold it together but seeing him so shattered, tears filled my own eyes. I
sat down next to him and held him as tight as I could. “I know it sucks, but we
are going to get through this together.” And there we sat, our own little team
of two, huddled together, bound in tears. I felt ashamed of crying, wanting to
be strong for him, but I couldn’t help it. My heart was breaking for him. He
was only eleven. I was devastated for what this meant for him. “Mama!” he said,
“I know you love me because you’re crying too!” I held squeezed him a little
tighter and kissed his sweet head. We sat there for a couple minutes and then I
knew I had to pull it together. I wiped my tears and told him everything would
be okay. “We have to call Daddy,” I said. I knew I couldn’t speak, so I texted
Todd, “It’s bad. He has type 1 diabetes. I need you to leave work right now.” </div>
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True continued to cry, and I wiped his tears. He thought it
was because of something he did. I kept trying to convince him it wasn’t. After
about ten minutes Dr. S came back in the room. I was still trying to console
True. I said to Dr. S, “He’s taking this pretty hard. He feels like it’s
because it’s something he did wrong.” He said, “No, it’s nothing you did wrong.
It’s just something that happens. You couldn’t have prevented this.” I said, “It’s
just bad luck True.” True nodded, and sniffled. My poor sweet boy. Dr. S told
us that the endocrionology team wanted us to go right to the University of
Michigan Children’s Emergency Room, and that we’d be admitted from there to
Children’s Hospital probably for a few days, and that True would be treated
with IV fluids and insulin and they would get us educated on how to manage the
diabetes. “You can go home and pack a bag first if you want,” he told us. Which
was a relief. We were already in Ann Arbor, but I knew True would want some
things to keep him amused and I’d want some change of clothes as I knew I
wouldn’t be leaving his side. </div>
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I thanked Dr. S and we headed out. True started to cry again
in the parking lot and said he wanted to call his brother and tell him. He
called Tag from the car and told him. I have no idea what Tag said, but I know
he was kind and supportive. I texted my sister and told her. I had told her
earlier that I was worried about True but I’m that mom that’s kids cough and I
think they have pertussis. I always think something is terribly wrong with
them, and then it turns out they have a bad cold. Never in my wildest dreams
did I think my paranoia would come true. </div>
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To ease his pain a little I told True we’d buy him the new
Super Mario game he’d wanted so badly to keep him busy in the hospital. “You
get diabetes and a new game I said.” That cheered him up a bit. I told Todd to
go pick it up and we’d meet him at home. By the time we drove through rush hour
traffic True had settled down and was okay once we arrived home. The tears were
gone and when we got home he went outside and told his friend Joey he had
diabetes, like he’d known his whole life and like it was no big deal. I, on the
other hand, was frantic. My sister called, and I was so grateful to talk to her
while I was madly packing a bag that would last me several days. I’m so
grateful to Kim for basically talking me off the ledge while I was losing it
that day. She said all the right things. I threw together some clothes, my iPad,
a couple water bottles and my phone charger and quickly fed True some dinner
and within an hour we headed back to Ann Arbor to the hospital. </div>
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We got to Emergency around 7pm. Not knowing that there is
free Valet we parked in the garage and walked a couple blocks to the ER
entrance which was rather comical and ironic. We didn’t feel like it was an
emergency. There we were with True with his backpack, me with my large tote
full of things and Todd with his big messenger bag like we were going to spend
the night in a hotel. When we arrived they took True’s blood sugar and it 292.
It was quite high compared to normal but not nearly as high as some we’ve
heard. We caught this quite early – we were lucky. My mother paranoia paid off
for once. We didn’t wait that long before they got us into a room. The Children’s
Hospital is brand new – just opened last November and it was quite the set up.
True was fascinated with the nice flat screen TV with movies and games in his
room. </div>
<div class="MsoNormal">
The young resident came in to examine him and I felt quite
old. Residents are so young! When the nurse came in to start the IV I was
really nervous. True has never even had a blood draw so I was really nervous as
to what his reaction would be at the IV stick. Would he yell? Would he cry?
What if they couldn’t get the IV started? What would he do? How would he react
if they had to stick him more than once? It took the nurse forever to get all
her supplies ready, as she was going to do all the labs from the IV stick. She
went for the left arm, and sure enough, the stick didn’t take. True barely
winced at it, much to my surprise. We distracted him with television, and he
was so good about it. I was so relieved. But it didn’t take. She couldn’t even
get blood from it. She went and got another nurse to do it. That nurse went for
the left hand. That didn’t take either. After that, she got the doctor to do
it. He found a vein in the crook of his right arm, which was a last resort spot
because it basically meant he couldn’t move his right arm, but that’s where
they put it. True never fussed at all through any of the needle sticks. I was
so impressed and so proud of him. He takes after his mama and isn’t needle
phobic at all. </div>
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They got the IV going and put in a bolus in one hour to
flush out the large amounts of keytones in his blood. We spent the majority of
the evening just hanging out in the ER. We saw a couple residents, an intern, a
very stupid medical student, an attending and multiple nurses. We were told he
was going to be admitted either to the PICU or a regular medical floor depending
on whether he’d need IV insulin or not. In the end, they decided to put him on
a regular floor but there were no rooms open so we had to wait it out in the
ER. I was worried I’d have to spend the night in the cramped ER on a very uncomfortable
chair. Todd left around 10:30 and I stayed with True. Finally around 11:30 they
got us a room. True said he hoped he wouldn’t have a roommate. </div>
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They took us upstairs and we were both happy to see that all
the rooms were private! True had a big private room with a nice big window and
reclining chair and a chair that opened up into a bed for me. It was nearly
midnight when we had to do an intake with the floor nurse. She was so sweet to
us. Again in this room there was a large flat screen TV with internet so True
played with that while I did the intake with the nurse. True seemed full of
energy while I was exhausted. After the intake the “floor host” showed me
around the unit and showed me where the “Nutrition Station” was – a nice little
room with a coffee pot and cups and cupboards with snacks and cereals and soups
for parents and a refrigerator with juice and milk and ice and such. By the
time we were all settle in it was nearly 1am and then I insisted that True shut
down his fancy little gaming system and go to bed. </div>
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I knew that the next day would be a full day for us. We’d
survived diagnosis day. We had no idea what was in store for us next. </div>
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<a href="http://1.bp.blogspot.com/-__R5k0LfZwY/UHCSfneVcSI/AAAAAAAAACA/TA2lUk3KQdk/s1600/12+-+1" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-__R5k0LfZwY/UHCSfneVcSI/AAAAAAAAACA/TA2lUk3KQdk/s320/12+-+1" width="239" /></a></div>
True in the ER. <br /><br /></div>
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Christyhttp://www.blogger.com/profile/08709117747289512736noreply@blogger.com2tag:blogger.com,1999:blog-600900364021826452.post-61965348967388448972012-10-06T10:37:00.001-07:002012-10-06T10:37:54.714-07:00True's Truth Here's True's Truth.<br />
<br />
On September 13, 2012 he was diagnosed with Type I Diabetes.<br />
<br />
Forever, that date will be ingrained in my brain. <br />
<br />
He will be diabetic the rest of his life. His diagnosis will never change. He will be checking his blood glucose levels and taking insulin every single day for the rest of his life. There was nothing he or us, as his parents, could have done to prevent this. No diet could have prevented it. No diet or exercise regime will make it go away (unlike type 2 diabetes.)<br />
<br />
It's a daunting diagnosis. It's a scary diagnosis. It's a life changing diagnosis. But it's our reality now, and we have to find a way to deal with it. Thus far, True has faced it with unbelievable dignity and courage. More than I could have ever imagined. He's one brave boy. I am in awe of him every day.<br />
<br />
As a writer at heart, I've decided to start this blog as a way to breathe and vent through the trials and tribulations of our every day life as we face the challenges of diabetes and share it with our family and friends so you all can have some idea of what it is that True goes through on a daily basis and what life with diabetes looks like.<br />
<br />
What I'm not is a tech person so it will take me a few days (or weeks!) to get this space looking more polished and pretty with Todd's help. Bare with me until then. <br />
<br />
I look forward to sharing our journey with everyone. Christyhttp://www.blogger.com/profile/08709117747289512736noreply@blogger.com0