D's trying to win...UGH

Obviously it has been a lengthy break...Seth has been sick in some way or another since November.  His D numbers are whacked and I am so overwhelmed that I can only PRAY we survive until Spring Break next week.  He is finally getting healthy, but now.  Ugh, NOW.  I wish I could post that we are rocking right along, but somewhere along the way this year, Seth's hormones have kicked in and so has anger, defiance, disprespect, yelling... and overnight my sweet boy has disappeared.  I mourne the loss of him, it physically hurts the direction our relationship is going.  This is a post I made today in one of my online forums, it's just mentally easier to cut and paste the basics and add to that than it is to relive.

I am honestly at my wit’s end with my son.  I have become the enemy in his eyes and he does not want me involved on any level in his D care.  I have been backing off, per his request, and not taking as much of an active role in his care and it is totally biting me (and him) in the butt.

The school nurse called last week and said that she doesn’t feel like Seth is being honest when he is telling her his numbers.  I downloaded his pump that evening.  When he asked to take a CGMS break, it was agreed that he should be testing 10-12 times a day because he is wrestling and swimming for P.E.  It had been two weeks since I had downloaded his pump and during the two week period, he had tested 45 times, by my calculations he should have tested a minimum of 140 times.  Many times he ate without testing or even bolusing.  Seth was straight up lying about testing, he was making up these glorious numbers, when he was flying high.

He had a wrestling tournament this past weekend and it involved him being gone extended hours, 3-8 Thursday, 9-9 Friday and 6am-10pm Saturday.  He and I had a chat about personal responsibility, calling me with his numbers, what a good range is for him to be when he hits the mat, etc.  And he was so sincere, I was relieved…lesson learned.   He called periodically on Thursday and less on Friday.  He was done for the day by the time I got off work on Friday.  When his dad and I got to the tournament on Saturday at noon, he had already been self-managing for 6 hours.  We talked for a bit, found out when his next match was and then I carefully asked what his number was.  His completely over the top response was that he was 175 and he is sick and tired of being just a number to me, this is his D and none of this is any.of.my.business.  His attack was very rude and vile and ANGRY,  people stopped cheering for the wrestlers and stared at us.  I was speechless…and then p.o’d.  and I still didn’t get it, until his dad said, show us your meter son.  We want to see that 175.  His only test for that whole day since I had dropped him off was taken about 10 minutes before he came to see us (which was about the time we got there and were walking around looking for him) and he was 400.  I let his dad deal with him since he doesn’t try the attitude with him as much as he does with me.  We let him wrestle his match, which he lost and which eliminated him from the tournament and then I went and told his coach that Seth was experiencing some integrity issues, was not being at all honest about his D numbers and as such we couldn’t trust him to self-manage at the tournament, so rather than let him stay the rest of the day, he would be leaving with us.  Coach was not happy with Seth, because he trusts Seth to manage himself honestly, so he agreed that Seth needed to leave.  Oh Seth hit the roof when he heard I told the coach, said it was a family matter that should have stayed within the family.  I told him I disagreed, that it was very much a matter that coach needed to know about.

When I called the nurse today to let her know what had happened this weekend and that he needs to show her his meter every time he tests until he earns trust back, she said he had just lied to her, told her his number was 62 when it was actually 82…so it’s not just me that he is being dishonest with.
 
I am in the process of looking for a counselor.  Due to his crummy grades, he has not had any electronics for 6 weeks, so I have no idea what to do punishment wise.  I am just so afraid that if we don’t figure out a way to address these D issues and the behavioral issues with Seth, we are going to lose him and look back years from now as this being the pivotal moment.

I want my boy back in the worst way and I don't know how much of his attitude is D or hormones.  UGH, UGH, UGH!

Thankful...not a big enough word

I am sitting here completely at a loss for words.  My heart is overflowing and thankful does not even seem to be a big enough word.

As we have gotten deeper into our diabetic world and the world of diabetes advocacy.  I have heard countless stories of people denied the medical supplies they need by their insurance companies to live their life to the fullest while managing their D.  Strangers in offices thousands of miles away look at a patients name and their diagnosis on a piece of paper and decide that they should only NEED to test their blood sugar 1x a day, or X amount of insulin should be enough for the month.  Countless patients and parents spend hundreds of dollars out of their pocked on a monthly basis for necessary medical supplies/medicines that insurance will not cover.  Strangers look at the short term financial output and do not look at the short term AND the long term medical gain of these decisions.

Our family has been incredibly blessed to have an insurance company who is very pro-diabetes.  They have covered 4 different meters for us this year as we have switched to find "the one" that is a good fit for us.  They have covered an insulin pump and all the supplies for it 100% so that Seth can have the best chance at the most normal life he can live.  They completely shocked me when they went against the norm and instead of fighting me and making me prove our need for a Continuous Glucose Monitoring System, they approved it  because they saw the value of having this information in our D arsenal.

Today, they stunned me.  In August I asked Medtronic to check with our insurance company and see if they would cover the MySentry.  It is a monitoring system that communicates with Seth's CGMS system that wirelessly transmits his BG numbers to a screen that sits by my bed, but I can take it with me anywhere in my house.  It will sound an alarm to wake me if he goes low, or goes high.  It will eliminate my need to get up and do middle of the night checks, and I think it will help Seth feel like I am a little less naggy about his numbers because I can look at a screen rather than ask to see his pump.

Medtronic called me today to tell me that my insurance company covered the MySentry 100%.  They will be shipping it out and we will receive it on Wednesday.  Medtronic was excited because this helps them encourage other insurance companies to cover the equipment as well.

Once again I want to say a big ginormous thank you to my insurance company.  They have been incredible and not having to fight for every little thing for Seth's care this year has made this diagnosis, just a titch easier to handle.  We have enough battles to fight.

I hope every single one of you has a wonderful Thanksgiving.  I will be counting my blessings...and looking at the Black Friday ads.  :)

DAD: Diabetes Awareness Day

Today is Diabetes Awareness Day (DAD)...I had some great plans and true to form, D has decided it needs to take a starring role this week, swimming and wrestling are kicking my butt numbers wise.  Sleep, whats that?  So just know, I had some GREAT plans.  :(

I planned ahead.  I ordered DAD t-shirts for my whole family to wear today.  They got held up with the storm on the east coast and then the company mailed them this really weird way which insures it will take the absolute longest way possible to Alaska...I have no idea when they will actually arrive.  But they were ordered over 3 weeks ago.  I guess this just means I am UBER prepared for next years DAD day.  :)

Seth was officially Diagnosed with Type 1 Diabetes and admitted to the hospital in Diabetic Ketoacidosis earlier this year on January 4, 2012.

It has been:

• 27, 302, 400 Seconds or
• 455,040 Minutes or
• 316 Days or
• 45.143 Weeks

that we have lived with Diabetes.  What does this mean?  It means that since diagnosis:

• 2528= the number of times Seth has pricked his fingers to test his blood (averaging 8x a day)
• 11,060= the number of units of Insulin Seth has used to keep himself alive (11 bottles)
• 57%= the number of times Seth's BG is high when we test
• 316=the number of night checks we have done at 3 am
• $57,659.00= the cost of Seth's Diabetic care this year.  Hospital x 5 days, Insulin Pump and CGMS shoot this figure right up there.
• $800.00= the cost of Seth's monthly prescriptions before insurance.
• 316= the number of days I have found a used BG strip somewhere other than the trash.  The weirdest place so far was in the dishwasher, no idea how that got there.
• 6= the number of BG monitors we have gone through this year.  We now have 2 main ones (Telcare) and 3 back up ones.  A backup in the nurses office, Seth's wrestling bag and my purse.
• 2= average number of daily phone calls I get from Seth or someone at his school to confer with me on D care.

What I want to represent with these numbers is how consuming D is.  There really is no break.  It is always there, if it's not in the forefront, it is in the back of our minds at all times.

My sister took the T1D challenge for a day and she received 14 texts before opting out for the night.  She said it was very eye opening to realize how often she was reminded of decision she needed to make related to D and it made her sad to think of a 13 year old always having to think about it.

And lastly...I want to thank everyone who supports us in this journey and our battle.  Your support and encouragement mean the world to us and make it easier for us to fight the fight each day.

We are wearing our plain (wah) blue t-shirts today, did anyone else join us?

Love,

Becky

Happy Birthday

November 12, 2012

There are no words to describe how much this kid means to me.  Today he turns 13, a teenager.  I am filled with wonder and excitement as I contemplate is future.  His possibilities are amazing and inspiring.  Every day he comes up with something new he wants to be “when he grows up” and I love to listen to his ideas.

Right now at the top of his list:

A video game designer, or tester

Heavy Equipment Operator in the Military

Doctor who cures Diabetes (I LOVE THIS ONE!)

Seth, you are an amazing young man facing a world full of possibilities and opportunities.  You bring light and joy to us and I am so blessed to call myself your mom.  As you work more towards your independence, don’t forget that your dad and I are always here to guide and protect you and be your home base...and rein you in, it’s our job. Most importantly, ALWAYS remember that you can pray to your Father in Heaven for guidance and assurance in your decisions.  We love you buddy.

T1: Every 8 Seconds

Pretty sobering, huh?  According to the American Diabetes Associations Website:

Morbidity and Mortality

• In 2007, diabetes was listed as the underlying cause on 71,382 death certificates and was listed as a contributing factor on an additional 160,022 death certificates. This means that diabetes contributed to a total of 231,404 deaths.

I feel very strongly that it is my duty as Seth's mom, to empower him to be the best manager of his diabetes, the most vocal advocate for his medical needs and to surround himself with a strong support system so that he can be successful in his diabetic care and do his very best to minimize his diabetic complications...I will do everything within my power to ensure he is not part of these statistics.

T1: Complications

• Complications:
• Type 1 diabetes can affect many major organs in your body, including your heart, blood vessels, nerves, eyes and kidneys. Keeping your blood sugar level close to normal most of the time can dramatically reduce the risk of many complications.
• Long-term complications of type 1 diabetes develop gradually, over years. The earlier you develop diabetes — and the less controlled your blood sugar — the higher the risk of complications. Eventually, diabetes complications may be disabling or even life-threatening.
• ·         Heart and blood vessel disease. Diabetes dramatically increases your risk of various cardiovascular problems, including coronary artery disease with chest pain (angina), heart attack, stroke, narrowing of the arteries (atherosclerosis) and high blood pressure. In fact, about 65 percent of people who have type 1 or type 2 diabetes die of some type of heart or blood vessel disease, according to the American Heart Association.
• ·         Nerve damage (neuropathy). Excess sugar can injure the walls of the tiny blood vessels (capillaries) that nourish your nerves, especially in the legs. This can cause tingling, numbness, burning or pain that usually begins at the tips of the toes or fingers and gradually spreads upward. Poorly controlled blood sugar could cause you to eventually lose all sense of feeling in the affected limbs. Damage to the nerves that affect the gastrointestinal tract can cause problems with nausea, vomiting, diarrhea or constipation. For men, erectile dysfunction may be an issue.
• ·         Kidney damage (nephropathy). The kidneys contain millions of tiny blood vessel clusters that filter waste from your blood. Diabetes can damage this delicate filtering system. Severe damage can lead to kidney failure or irreversible end-stage kidney disease, requiring dialysis or a kidney transplant.
• ·         Eye damage. Diabetes can damage the blood vessels of the retina (diabetic retinopathy), potentially leading to blindness. Diabetes also increases the risk of other serious vision conditions, such as cataracts and glaucoma.
• ·         Foot damage. Nerve damage in the feet or poor blood flow to the feet increases the risk of various foot complications. Left untreated, cuts and blisters can become serious infections. Severe damage might require toe, foot or even leg amputation.
• ·         Skin and mouth conditions. Diabetes may leave you more susceptible to skin problems, including bacterial and fungal infections. Gum infections also may be a concern, especially if you have a history of poor dental hygiene.
• ·         Osteoporosis. Diabetes may lead to lower than normal bone mineral density, increasing your risk of osteoporosis.
• ·         Pregnancy complications. High blood sugar levels can be dangerous for both the mother and the baby. The risk of miscarriage, stillbirth and birth defects are increased when diabetes isn't well controlled. For the mother, diabetes increases the risk of diabetic ketoacidosis, diabetic eye problems (retinopathy), pregnancy-induced high blood pressure and preeclampsia.
• ·         Hearing problems. Hearing impairments occur more often in people with diabetes.

  ~B

T1: Risk Factors

• Risk Factors
• There aren't many known risk factors for type 1 diabetes, though researchers continue to find new possibilities. Some known risk factors include:
• ·         A family history. Anyone with a parent or sibling with type 1 diabetes has a slightly increased risk of developing the condition.
• ·         Genetics. The presence of certain genes indicates an increased risk of developing type 1 diabetes. In some cases — usually through a clinical trial — genetic testing can be done to determine if someone who has a family history of type 1 diabetes is at increased risk of developing the condition.
• ·         Geography. The incidence of type 1 diabetes tends to increase as you travel away from the equator.
• ·         Viral exposure.
• ·         Low vitamin D levels. Research suggests that vitamin D may be protective against type 1 diabetes.

~B

T1: Causes

Causes:

The exact cause of type 1 diabetes is unknown. Scientists do know that in most people with type 1 diabetes, their body's own immune system — which normally fights harmful bacteria and viruses — mistakenly destroys the insulin-producing (islet) cells in the pancreas. Genetics may play a role in this process, and exposure to certain viruses may trigger the disease.

Whatever the cause, once the islet cells are destroyed, you'll produce little or no insulin. Normally, the hormone insulin helps glucose enter your cells to provide energy to your muscles and tissues. Insulin comes from the pancreas, a gland located just behind the stomach. When everything is working properly, once you eat, the pancreas secretes insulin into the bloodstream. As insulin circulates, it acts like a key by unlocking microscopic doors that allow sugar to enter the body's cells. Insulin lowers the amount of sugar in the bloodstream, and as the blood sugar level drops, so does the secretion of insulin from the pancreas.

The liver acts as a glucose storage and manufacturing center. When insulin levels are low — when you haven't eaten in a while, for example — the liver converts stored glycogen back to glucose to keep your blood glucose level within a normal range.

In type 1 diabetes, none of this occurs because there's no insulin to let glucose into the cells. So instead of being transported into your cells, sugar builds up in your bloodstream, where it can cause life-threatening complications.

Seth was eating and drinking normally, but he lost 25 pounds in a brief period of time.  He was literally starving to death because his cells were not receiving the nutrition from the food he was consuming.  I look at pictures now and it is so obvious that he was sick, but seeing him every day, it was not as obvious.

However, the day before I took him to the doctor I knew in my heart what the diagnosis was going to be, something had finally clicked and all the bits and pieces of information that I had seen finally broke through the filter in my brain and I was not shocked at all when the doctor said...DIABETES.

If this blog or this information helps someone in their journey or puts a piece of information in their brain that helps them...then it has been successful.

T1: for a day?

The Juvenile Diabetes Research Foundation is offering you the chance to walk in a T1's footsteps for a day...will you accept the challenge?

JDRF Website:  "When you sign up for theT1D for a Day text challenge, you agree to receive as many as 24 text messages over a 24-hour period that simulate the constant blood sugar testing, insulin injections, and dietary decisions that confront people with T1D."

At first glance, it doesn't sound like it will be that big of a deal, or really give you a lot of insight into this condition.  But IT IS!  It's a way for someone without diabetes to get a very slight idea of just how pervasive Type 1 diabetes is during the course of the day.  Testing blood sugars, calculating insuling doses, figuring out food choices, cramming in some exercise and figuring out why numbers don't match?  That gives you just a SLIGHT sense of diabetes knocking on your door all day long.  This exercise is brought to life by the JDRF.

One the statements from their website is:

"While no virtual campaign can recreate the many needles required or the physical and financial tolls of this serious disease, T1D for a Day seeks to deepen understanding of the many heroic steps our friends and loved ones with T1D take each day."

To sign up for T1D for a Day, text T1D4ADAY to 63566. You will receive a confirmation text that will cycle you through registration.  Or you can CLICK HERE to sign up through the web. 

Heartfelt thanks to anyone who supports a person with diabetes (PWD) everyday by being a friend or a loved one.  PWD's have a heavy load to carry and having others who understand or seek to understand, means the more than you can imagine.

If you take the challenge and would like to share your experience, I would LOVE to hear it either via email (link on the right sidebar) or leave me a comment.

T1: Symptoms

Symptoms:

Type 1 diabetes signs and symptoms can come on quickly and may include:

·         Increased thirst and frequent urination. As excess sugar builds up in your bloodstream, fluid is pulled from your tissues. This may leave you thirsty. As a result, you may drink — and urinate — more than usual.

·         Extreme hunger. Without enough insulin to move sugar into your cells, your muscles and organs become depleted of energy. This triggers intense hunger that may persist even after you eat. Without insulin, the sugar in your food never reaches your energy-starved tissues.

·         Weight loss. Despite eating more than usual to relieve hunger, you may lose weight — sometimes rapidly. Without the energy sugar supplies, your muscle tissues and fat stores may simply shrink.

·         Fatigue. If your cells are deprived of sugar, you may become tired and irritable.

·         Blurred vision. If your blood sugar level is too high, fluid may be pulled from your tissues — including the lenses of your eyes. This may affect your ability to focus clearly.

I  If you or someone you love is experiencing symptoms like this, please seek medical attention quickly.

   ~Becky

T1: Diabetes

Type 1 Diabetes (Juvenile Diabetes/Insulin Dependent):

Type 1 diabetes, once known as juvenile diabetes or insulin-dependent diabetes, is a chronic condition in which the pancreas produces little or no insulin, a hormone your body needs to allow sugar (glucose) to enter cells to produce energy. Although type 1 diabetes typically appears during adolescence, it can develop at any age.  Despite active research, type 1 diabetes has NO CURE, although it can be managed.

I started with this because I have received advice from several people, who I am sure were very well meaning.  But contrary to well meaning advice, I want and need people to understand that:

• Changing Seth's diet will not reverse Type 1 Diabetes.  We count Seth's carb's at every meal as a way of counteracting them with insulin.  Carb's= sugar.  Any sugar Seth eats when his blood sugar is within normal range must be balanced with insulin to keep him from having too much sugar in his system.  We practice healthy eating, but we also do not restrict his diet any more than we do Leah's.
• Seth MUST have insulin to live.  Without it he WILL DIE.
• Seth does not have the bad kind of diabetes (just because he is on insulin).  Ask any person who has any of the types of diabetes...they all suck.
• This has not gotten easier, we still work to manage this on a day to day, hour by hour,minute by minute basis.  What works one day, does not necessarily work the next.  There is no autopilot for diabetes.

Diabetes struck us when Seth was 12.  You can read our diagnosis story, the links are in the right hand column.  If you are concerned that you or your child may have diabetes, please seek medical attention.

~Becky

November: Diabetes Awareness Month

November is designated as Diabetes Awareness Month...funny, last November, I had no idea how intimately  familiar I would become with Diabetes.

Diabetes affects nearly 24 million Americans, that is 7.8 percent of the population.

November 14th is World Diabetes Day!  A day designated to bring awareness to this disease and blue is the color assigned to Diabetes.  Will you join me in wearing blue that day to help get the word out? If you wear blue take a picture, I'd LOVE to see it.  You can email me a picture or a blog link, leave a link to your blog in the comments, or if you have a Facebook account and want to post a picture, make sure to tag me (Becky Sossaman Dustin) so I can check it out.  If you want to share diabetes information, you could post a link to my blog, the Diabetes 101 tab would be marvelous, or the Juvenile Diabetes Research Foundation is a good source for people to find out more information.

I am dedicating myself and this blog to Diabetes Education this month.  I will be focusing on both the sobering educational facts as well sharing how Diabetes is having to fit into our lives.  It's a journey that's for sure...join me for the ride.

Honeymoon's Over

We had Seth's quarterly appointment on Monday.  It was good and bad.  The doctor was all over Seth for his risky behavior.  It was nice to have back up with that.  We even said that if he continues to bolus without testing, we will discuss going back to shots and taking a pump break...he was not happy about that.

The big news is...the Honeymoon is over.

Seth's pancreas is no longer producing any insulin.at.all.  His insulin needs in the last 4-6 weeks have doubled and I didn't catch what was happening because I have been so tied up emotionally with my mom that it has just exhausted me..I need to let some of that go, because my children need to be my first priority.  Where he was using around 20 units a day, we are now using 40-50.  That explains why I have not been able to get him in range very easily despite making some adjustments to his pump.  We have adjusted it some more and are starting to see better numbers.

The bad news...we got his A1C result.

9.9

Oh.my.gosh...that means his blood glucose has averaged 237.4 for the last three months.  Hanging head in shame. I was prepared for a bad number...but this shocked me and woke me up that I cannot be on autopilot.  I feel awful.

I guess the good news is we will definately see an improved A1C in January.  :)

Seth wants to join the wrestling squad...we are coming up with a plan for that.  Does anyone have experience keeping the pump site in during wrestling practice/meets that would like to impart some wisdom?

~B

Mitzi Update: 2

In amongst all my crazy...I realized I have neglected to update about Mitzi.

She has come a long way my friends.  She graduated from therapy last week.  We continue to work with her at home as she is still not 100%, but she is walking completely on her own now, no wheelchair.  She has regained control of her body functions (thank heavens) and tell us when she needs to go out, q-tipping her to poo was NO FUN!

She still has residual weakness in her hind legs, the vet is unsure at this time if that is permanent or if she will regain that over time.  Time will tell and we are doing are best to help her.  Daily we can see that she is making progress.  She can now chase her ball, albeit slower than before, do her Mitzi peck and most importantly snuggle with our son unimpeded.  Life is good...and we have much to be thankful for.

Mitzi Before

Take a look at her now, go Mitizi go!

That's Seth's happy face...boys, whadya gonna do?

Kicking it!

If you have stuck with me through all my whines...thank you.  I have put on my big girl panties and we are kicking 2012 back!

Now that we have had more time and a consultation with the doctor, we have discovered that Thyroid Cancer is pretty easy to treat.  Who knew?  And it would have been nice if the doctor would have shared that when he called and dropped the C bomb at 4:45 on a Friday evening and said "lets talk next week about treatment options".  But what do I know?  Maybe he had somewhere to be that was more important than setting our minds at ease.

Turns out they give you a mega dose of thyroid to stop your pituitary gland from producing the hormone that your thyroid normally produces and that the cancer feeds off of.  So...my mom takes a pill and it keeps the cancer in check.

She is still in stage 3 (of 5) Kidney Failure.  It is my understanding that:

Stage 4 = Dialysis
Stage 5 = Transplant list

She meets with the doctor next week to see what Stage 3 means and if it is reversible, etc...this scares me more as it is a huge fear of mine for Seth later in his life.

Seth and his diabetes is really what this blog was designed to be about, it evolved a bit, but it always comes back to that.  Because diabetes is not as easy to treat as thyroid cancer.  :)

Seth is in full diabetes rebellion/burn out.  And.it.super.sucks.

Arguing about testing....check!
Not testing when he's not with me...check!
Lying about his numbers if I don't make him show me the BG screen...check!
Bolusing (giving himself insulin) without testing...check!
Eating without bolusing...check!
Dropping his BG tester that wirelessly transmitted to his pump into the slough...booyah!

BLERGH!!!  The good news is that our insurance has finally seen the light and started covering the strips for my previously purchased Telcare meter...and now that Mr. Smartie has ruined his aforementioned tester that wirelessly transmitted to his pump with slough water, we are again using my beloved Telcare.  I call that a happy natural consequence.  :)

So now there is no lying about numbers or getting away with no testing, because if I don't receive the text with his BG number...he is busted.  I am in LOVE with this meter, it has solved a few of these issues and I am working with Seth on the others while trying my hardest to be empathetic as to what it is like to be in his shoes.

We go in Monday for his quarterly A1C...I fully expect a crummy number.  Does anyone have any suggestions as to what I can do to get through to him how serious this is?  I lay awake at night worrying about what this is doing to his body.  I know I am here to be his parent and not his friend, but this is driving a serious wedge between he and I.  D Moms...I could use some advice.  :)  I have my big girl panties on and I am ready to deal.

Blergh...enough.

Yesterday...our little part of the world cracked a little bit more.  The doctor called and said "it's cancer".  Her surgery did not go as we'll as we had hoped.  They took mom from me at 7:17 for what they estimated would be a 90 minute procedure and it was 11:15 when they got done.  The doctor came and talked to me and was very optimistic.  Said I could see her in about an hour as long as she woke up ok.  3.5 hours later, I was finally taken back to her.

We have been discussing her options from a family standpoint.  But are waiting to hear what stage it is at...that will take a week.

Mom and I went out to dinner last night and she also broke the news to me that she is in stage 3 of renal (kidney) failure.  Meaning...I don't know if her body CAN handle chemo or radiation treatment.

I don't even know what to say at this point...we are badly battered and bruised.  Is it possible to feel like an orphan at my age.  Cause I feel pretty lost right now.

2012 has sucked on so many levels and every time I think I'm about to overcome it, it kicks me in the teeth AGAIN.

Praying for strength and courage.

Bear with me

Please bear with me...I am flying down to Anchorage to  be with my mom.  She has recovered from her stroke (YAY) but is having surgery Thursday to have 1/2 of her thyroid removed to see if it is cancerous...prayers please?  This will be hubby's first time completely managing D for an extended period where I can't just run home and take care of stuff...pray for them too?

Oh...and good news.  Mitzi is recovering.  She is now walking 75% of the time without the wheelchair.  I'll post video...it's amazing how far she has come. Lot's of good things happening, just need a titch more.  :)

Hugs to all of you.

When it rains it POURS

They say when it rains, it pours...I am in the middle of the storm and I have no idea how to reach shore.  I am a strong person, but this year...2012 has brought me to my knees.  Starting with Seth's diagnosis, a family issue that I am still struggling with, my son's dog's paralysis and on Monday my mom had a mini-stroke.  I am throwing up my flag of surrender, I am not in control in any way shape or form.  I am just along for the ride on this tempest tossed sea of life.

Serenity now! (Any Seinfeld fans out there?)

Mom is home, she has lost use of her right hand, but we are hopeful with therapy she will regain that.  My mom means the world to me.  I cannot imagine my world without her.

~B

Mitzi update

I wish I could say that she is better.  The vet is still hopeful she will get better and we are knee deep in rehab, but we have also ordered a wheel chair for her to get around the house.  :(

This is a video we took of Mitzi yesterday before we started water therapy:

She is still unable to stand up on her own, but she is able to hold her weight for about 5 minutes once we get her up.  She has a hard time on the carpet, but once she gets her feet behind her she can drag herself pretty good.  We don't want her to rub her feet raw though, so we have ordered a wheelchair for her as a temporary solution...cause really, how does a dog tell you she wants a drink of water?

Today was a big day for her, it was her first day on the water treadmill.  The water makes her rear end buoyant and then the vet tech gets in their and simulates walking.  We were thrilled to see that about 4 times during her session she tried to move her hind legs herself....that is excellent!

~Becky

Crazytown

Our son tends to internalize his feelings and get angry when he is sad or upset about something.  There has been a whole lot of internalizing and stuffing going on since his diagnosis.  A couple of years ago Seth got his own dog, Mitzi.  She is a firecracker, a bundle of energy and Seth's bud.  He has cried into her fur when D got to be too much, and she always gets it.  She has licked the blood of finger pricks away (gross, but he's a boy), worried with me when he is low and guarded him when I have come in to do middle of the night checks.

Last Friday evening when I got home from work I noticed that she was a bit sluggish, but we chalked it up to her being outside while hubby got ready for our garage sale and wearing herself out.  Her stubby little legs get tired easily.  Saturday she just wanted to snuggle with me, but when I took her downstairs it was apparant that something was wrong, but what.  She was just acting a little different, but there was nothing obviously wrong...we kept her quiet and she wanted to be in her cage, so we moved it into the house, we thought she might be a little bit sick. 

But, when I got home from work on Tuesday, I took one look at her and rushed her to the vet. She could not hold her back end up, it would flop over whenever she tried to stand up and her back feet were rolling over and she was walking on the tops of her feet.  My son had crocodile tears in his eyes when he asked me to "fix her".  I asked if he wanted to come with me and he quickly shook his head and said "no, he didn't want to be there...just in case".

The vet I took her to is a DVM who also practices holistic medicine. So we are doing a lot of alternative treatments as well.

At our appointment on Tuesday the vet determined that Mitzi somehow damaged a disc in her back, it is pretty common in long spined dogs such as her breed.  She was extremely hopeful that Mitzi would recover.  She was still wagging her tail, holding some weight on her back end, and feeling deep pain.

Today we went back, she is still wagging her tail and feeling deep pain.  She is no longer holding weight on her back end and she has lost urine and bowel control.  BUT, the vet is still hoping that once the swelling comes down that she will fully recover.  She asked if we would give her a couple of weeks of working with Mitzi before we make "the decision".

So on top of D, I am trying to save a parapalegic dog.  She is wearing diapers now and I am doing my darndest to "save her" for my son.

D, new job, sick dog, it's always crazy around here, I'm the mayor of crazytown!  :)

A Meaningful Choice

The end of July, the librarian that I work with texted me to tell me about 2 elementary school librarian positions that were open so that I could apply for them if I choose.  I scooted on over to the district website and saw those positions...but I also saw that a position as a library assistant at the high school my kids will be attending in 2 years was open.  I immediately saw the possibilities in this so  I applied.

I have been commuting 35 minutes to work, this school is 10 minutes away and it is only 1/2 mile from the school my children currently attend.  I am right down the road if Seth has a D emergency, there is a LOT of comfort in that, not to mention that the teen/hormone years will be much easier when we can tweak and do our pump magic at school together.  (The other assistant had some asperger issues with her son so they worked out a sign if he wanted to talk to her at school and then they had a place in the stacks they would meet and talk, I think this is a great idea and am going to offer that to my super private son.)

And seriously, how could I pass up the opportunity to work in the same school my kids will attend, get to know the same kids they will know, rub shoulders with the teachers who see them everyday?  If I can't be at home mom...this is the next best thing.

So Mark and I talked and I made the decision to table my dream of being an elementary librarian to further my dream of being mom to my children.  I only have 6 short years (this takes my breath away to even type it) of my children at home...I have plenty of time.  I don't ever want to have regrets.

Yesterday, when I accepted this position, I made a meaningful choice for myself and my family.  I feel blessed.

~B

Lost

Have you ever struggled with where you are?  That's where I am at right now.  REALLY struggling with me and personal (not family) relationships and how they impact my family...and while I am trying to figure it out I have been keeping to myself, it's what I do.  As a mama bear, it is our nature to protect and defend.  But this situation continues to defeat me and I just am at a loss at to how to overcome this continuing the way we have been.  Yet doing something different causes loss and heartache for my children...as I said....STRUGGLING.

My summer is over, I've started back to work...it's always a rough transition from summer to school year.  Especially when the kids are home for 2 weeks while I'm at work getting things ready until their school year starts.

Anyway...

Lost in thought.
~Becky

Heavy hearts

At midnight last night, my husbands cell phone started ringing.  We were hoping that it was his parents, they often forget to look at the clock before calling.  I looked at Mark and said...It could be A.  When he got to his phone and saw that he had missed A's call, our hearts were heavy as he immediately called back and when he answered...we knew.

A was calling to let us know that his son N, their only child, had lost his 5 year battle with cancer.

Our hearts go out to them and what they are going through as well as the battle they fought for 5 years.

The husband of this family is my husbands best friend.  We went out to dinner with them a few nights before N was diagnosed, he had some knee pain that only presented when he was asked to do certain chores.  We were laughing and talking about kids and what they will pull to get out of work.  They had made a doctor appointment for him on Monday to get it looked at, but none of us thought that by Tuesday mom and N would be on a plane to Seattle to begin cancer treatment and their lives would never be the same. It's so unreal to think about...even all this time later.  They were the first to call when we found out Seth had D, we were literally in the doctors office when they called to tell us they were thinking of us and offer support.  We are so blessed to call them friends.

I posted a video on here a while ago that children at Seattle Children's Hospital had made.  This family loved it and hoped it would go viral.  Their son was already in hospice care when the video was made, so he was not in it.  But in honor of their courage, I invite you to watch and get a glimpse of some special children who are fighting everyday to live.  It is inspiring and heartfelt.  To the B family, you are in our prayers.  We watch this in honor of N and the many families who you met on this journey who were fighting the same fight...you touch everyone who's lives you come in contact with.


~The Dustins

Herbal Iced Tea

I have been bothered lately by my (an my families) soda consumption.  We definately have a strong preference for flavor in our drinks.  For a long time, my husband and I were comfortable being hypocrites and drinking our soda in front of the kids while telling them to drink water or crystal lite.  But lately my husband (non-verbally, so I am assuming) has been allowing the kids to drink 2-3 diet sodas a day...and it has bugged me.  ALOT.  Often, we are not on the same page when it comes to parenting.  I am wanting to move more towards a cleaner way of eating for our family and am looking into more natural sweetners and cleaner eating for our family.

I decided that I need to set an example and put my foot down.  I am no longer going to buy the excessive amounts of soda we have been consuming.  If I want a soda, I will go buy one and drink it, but I will not be buying the cases we always had in our garage (hanging head in shame).  Yes, I am making the decision for the kids and myself, husband will have to decide for himself.

However...I needed to find an option for myself and that I would feel comfortable offering to the kids as well on days that flavor is desired.  And who am I kidding, I'm going to need flavor for a bit while I go through my withdrawls.

For a long time, I have been searching for a good HERBAL iced tea recipe.  I've not found one that has worked for me...until tonight...and I am really excited about it.  I am hoping my kids will like it too, but even if they don't I see this is a realistic flavored drink for me...a soda replacement and that is HUGE!

I buy my tea from Adagio and I use their IngenuiTEA system.  It is a wonderful way to brew loose leaf tea.  If any of you are interested, send me an email and I will send you a coupon for $5.00 off your first order.

Anyway...just in case any of you are searching for a great iced tea recipe...here's mine:

Vanilla Peppermint Iced Tea
Makes 1 Gallon

1/2 C Green Rooibos Tea
1/4 C Peppermint Tea
Vanilla Stevia Drops
2 Cups Water
8 Cups Cold Water
Ice Cubes
Gallon Pitcher
IngenuiTEA Brewer

Put 2 cups water in the IngenuiTEA brewer.  Put in microwave for 5 minutes, until water boils.  Put green rooibos and peppermint tea in the brewer for 7 minutes.  While the tea is steeping, poor 6 cups cold water into your pitcher, fill with ice to about 2 inches from the top.  Once tea is done steeping, push the bottom of the steeper up with a spoon so that the concentrated tea pours into the pitcher.  Mix with a wooden spoon.  I put 3 droppers of the vanilla drops into the pitcher...you can obviously do to taste.

Putting the hot tea into the ice water stops the brewing process immediately so that it doesn't get bitter, and I love the mild vanilla undertone in this.

The recipe I adapted this from...and I am trying to find it again to give proper credit, my husband jumped on the computer while I was making this and closed it out...grrr.  :) Had the following ingredients if you don't want to use loose leaf tea:

1 family size tea bag
2 regular size peppermint tea bags
1/4-1/2 C sugar
2 cups boiling water
6 cups cold water
1t vanilla extract

Steep tea bags in boiling water for 5 minutes, remove bags and dissolve sugar in the water.  Mix with cold water.  Add vanilla extract, refrigerate till cold.

Rooibos tea is a powerful anti-oxidant, very healthy and good for you.  :)  Enjoy the recipe and wish me luck as I kick soda to the curb!

~Becky

I'm afraid to say it

Life has been...normal.

I know I've been very quiet of late.  I looked at the calendar today and realized that I have just under two weeks until I go back to work for the school year.  Ack!  WHERE has the time gone?  We did take a little road trip family vacation to beautiful Homer...which was not as beautiful this year, weather wise. 

While we were there, Seth got to go on a 3 day kayak trip across Kachemak bay.  It was unexpected and unplanned for him to participate.  Once we made a family plan and Seth earned it by managing his own D for the 4 days leading upto it (and did so rather spectaclarly I might add) he got to go.  I typed up a 3 page list of instructions, added an emergency cell phone to our plan and Grandpa kept the boat hooked up to his spare vehicle so we could jump in and go across the bay at a moments notice to provide assistance or get Seth if needed.  Our instructions were for Seth to check in with us each night so we could go over numbers.  He also knew to call us at any other time if there were problems or we needed to troubleshoot.  He missed his first nightly phone call, but called the next morning.  After my talking to, no other phone calls were missed.  :)

The trip would involve a 4 hour paddle to get to their camp site, a 3 mile hike one day, a 7 mile hike another day, swimming in glacier water (uber cold), swimming in the inlet (cold), lots of carby food, staying up late, getting up early, no showers and then a 4 hour paddle back to the Homer Spit.  Sounds like a dream right?

I am happy to report that Seth rocked this trip.  There were so many opportunities for D to rear its ugly head, but it played nice and Seth...got to enjoy being as normal as possible...except for finger sticks and putting his pump in an aquapak to swim in the glacial water that 75% of the boys who went, wouldn't even wade in...but (in his words) he had to represent for North Pole, cause we have thicker blood.

On our way back from Homer, we put Mark on the train to Fairbanks...work calls.  Seth and Leah and I stayed in Anchorage for a couple of day and hung out with my mom.  Then on June 25th, we dropped Seth of for Boy Scout Encampment at the Palmer Fairgrounds.  There were close to 1000 scouts there.  Again we had our plan in place.  And again, Seth rocked it.  I was even getting ready to head out there on Thursday to change his infusion set, but he called me and said he had a dream early that morning, as he was waking up, that leeches were attacking his body and he ripped his infusion set out trying to get them off, so he got a new reservoir of insulin and a new infusion set and hooked himself up.  We've practiced him doing it before and when he told me everything he had done, I knew he'd done it right...mom was not needed...or wanted.  I could just pick him up on Saturday.

When we got home, I downloaded his pump and CGM readings and looked at every single one (yes every 5 minutes worth) while he was at camp.  Not one single low and only 15% of the readings were high and those were brought down within 2 hours.  Seth managed himself, there was medical personnel for emergencies only.  For all the junk food I saw out there, I would say that was rockin' it!

As a side note, we are now 6 months into this journey.  These are things that I couldn't even imagine Seth doing when we got the diagnosis.  Not because he couldn't physially do them, I just couldn't wrap my mind around how we would work out the logistics of it.  We made a decision that D would have to work around us and as often as we can, we stick to that.  That is what we are striving to teach Seth. 
For now things have been calm.  I am not naive enough to think we have this managed or controlled.  We are simply enjoying the lull that IS right now.  And I am trying to settle into my role as D co-pilot instead of pilot. Life goes on.

New D Bud

While I was in Anchorage, I got to do something that I was super nervous about.  It was a little out of my comfort zone, but she her blog had helped me so much, I wanted to meet the person behind the words.  I was anxious and afraid that it would be akward.  I look back on it now and think, what on earth was I thinking?

I took the opportunity when I was in Anchorage to finally meet Denise, from the Blog: My Sweet Bean and her Pod.  After I was late because I went to the wrong place, we got down to the business of chatting and laughing and connecting and we had so much fun.  The food was great the company was fantastic and it was incredible to talk with someone who "got it".  Who understood my fears and my concerns, who lives with D 24/7 just like us.

Not all of our talk was D related...Denise...is a HOOT!  This was a time for connection, something I really needed.  I cannot wait for the next time I go to Anchorage.

So without further ado...I introduce you to my new D Bestie Denise:

The waitress couldn't get the picture right, we'll shoot for a better one next time.  :)

~Becky

Sadness and Happiness

I meant to write a post before things got so crazy...and then things got prematurely crazy.

This dog...meant the world to me (I am welling up as I type).  My husband, whom I love very much, is not a touchy feeling person, and as I have mentioned numerous times works nights.  I rescued Peanut 6 years ago and it was instant love for both of us.  And I really don't mean love, I mean LOVE.  I could walk into a room and no matter what her sleep level was, she would lift her head to see if I was just walking through or if I was sitting down so she could come join me.

Peanut was an older dog when I got her and in the last 6 months, I started seeing signs that my time with her was drawing to an end.  We had planned (and are currently on) a 2 week vacation to see my in-laws on the Kenai Peninsula and had butted it up to the week that Seth would be attending Scout Camp in Palmer since they had asked me to stay close by since this is everyone's first year dealing with his diabetes.  Meaning I would be gone for 3 weeks.  I made the difficult decision to have Peanut put down before we went on vacation as I didn't feel it would be fair to have her kept in a kennel for that time and then have her put down when I got back.

So, we left for our family vacation:

And when I saw this:

I felt happiness.  I miss the mountains and the ocean.  It makes me so happy.  So that is where we are, enjoying our family time and I am nursing my broken heart.

:):

CGMS? Yes please!

A lot of insurance companies do not routinely cover Continuous Glucose Monitors (CGMS) for children with diabetes.  It's so absurd really, and it frustrates me that parents have to fight so hard (submit months of BG logs, get doctors letters) to get this valuable information in their hands...or do without it.

A CGMS is a sensor that a person wears.  The sensor is inserted into the interstitial fluid under the skin where it reads the blood glucose levels and wirelessly transmits them to a receiver.  We chose the Medtronic pump because it has the CGMS receiver built into the pump itself.  I already knew I planned to fight for this technology.  The sensor reads the BG levels every 5 minutes 24 hours a day.  We will still have to test Seth's BG 4x a day via finger prick to calibrate and test for accuracy...nothing is perfect.  But the information this will give us is so valuable, it is worth it.

Let's talk about that for a moment.  Right now we test Seth's BG 8-10x a day.  But we only get a singular reading and it doesn't give us any context unless we test multiple times within a certain time limit.  For example a 70 means Seth's BG is good and in range and during the day, I'm okay with that.  But at night, I am uncomfortable sending him to bed like that because I don't know if that is a stable 70, a 70 that is heading lower or a 70 that is going higher.  So I have to treat it like it is "low".  BUT, with the CGMS, if calibrated and using an accurate sensor, it will show me if it is a stable number, a number that is heading down or a number that is heading up.  VALUABLE information to help me keep Seth's numbers more in range.  I can make more minute corrections to keep him more tightly in range.

The more you can keep a diabetics numbers in range, the more you can help prevent potential long term damage.  I will do anything I can to help prevent this.

The conversation I had with my rep at Medtronic went something like this:

Me:  I am interested in ordering the CGMS system with our pump.

Medtronic:  We generally recommend ordering the pump first and once you have received that, then ordering the CGMS system, because insurance generally fights those a bit more and we would hate to have your pump delayed for the CGMS.

Me:  Sounds good, lets order the pump.

I called again the day they shipped the pump

Me:  Ok...so I am ready to order the CGMS system for our pump.  What is the process for that?

Medtronic: We will put the request in with your insurance.  They will then have 14 days to make a decision.

Me:  Perfect.  So here is what we are going to do.  We are going to make the request.  If they do not approve the request for a CGMS, then the day after we receive the denial, we will make another request and we will continue this cycle until they say yes.  If they need anything from me to help make this decision, please let me know so I can send it in.  I do not want to hold this process up.  They have met a bulldog who is fighting for their child.  I will not stop until we have this...it is that important to me.

Medtronic:  We will submit the request right away and be in touch as soon as we hear.

3 days later my rep called me and said that my insurance had approved the request.  They agreed this was medically necessary for diabetes and as such would cover it.

I.kid.you.not.

I welled up and my jaw dropped.  I couldn't believe it.  I was prepared to fight and battle for this.  I wasn't prepared for a simple, we couldn't agree more.

So, we go in next Monday to be trained on the insertion of the CGMS sensor.  The needle is a lot bigger than the pump, so we got some prescription numbing cream.  Wish us luck!