My life with The Superhero and The Princess

Friday, July 10, 2015

Diabetes is...still here 7 years later.

Diabetes is... here. 7 years have passed yet I still remember it like it was yesterday.

Diabetes is... 24/7. It never sleeps. Ever.

Diabetes is... inconsistent.

Diabetes is... exhausting.

Diabetes is... a whole family disease. Not just the person with T1 themselves.

Diabetes is... relentless.

Diabetes is... numbers floating in your head. All.the.time.

Diabetes is... painful. Physically and emotionally.

Diabetes is... always, always on our minds.

Diabetes is...poking your kid with needles multiple times per day. To keep him alive.

Diabetes is... insulin. Which smells like bandaids.

Diabetes is... expensive. EXPENSIVE.

Diabetes is... life changing.

Diabetes is... all consuming.

Diabetes is... counting carbs.

Diabetes is... scary!

Diabetes is...what brought me best friends I never knew I needed. And I know they'll always be there. No matter what. Forever.

Diabetes is... what saved my baby's life. And for that, I am forever grateful.

Friday, July 3, 2015

Mundane Mom Tasks

Long time no blog! I always have good intentions of getting back into writing. I miss it. But, life keeps getting in the way and I just don't have the time I once did.

Anyway, today, I felt the need to write something longer than a Facebook post, so, here I am.

It all started when one of my best friends, Heidi, was dx with cancer in December. You may know her as she is (was) also a blogger. (http://www.diabetes-tales.com/)

She has endured 8 rounds of intense chemotherapy to battle this beast inside her.

I am thankful to have been by her side to support her as much as possible.

I cannot even imagine what she is going through.

It was in a recent conversation with her that sparked this thought about "mundane mom tasks".

You know, the tasks that we as moms do without thought or maybe we do think about them and hate them.

Things like cooking dinner for our family.

Cleaning the kitchen.

Taking our kids to a random doctor or dentist appointment.

Day to day "mom tasks" that probably don't seem like a big deal.

And until this last week, I would agree that they are the "not" fun parts of parenting (or life, really).

I hated laundry. I hated cooking. I hated cleaning.

You get the idea.

But you see, my friend, Heidi, hasn't been up to doing any of these things for MONTHS now.

She has been so drained and run down from the intense cancer fighting chemo that she hasn't been the mom I know she wants to be to her kids.

This week she mentioned feeling a little better.

She had a little more energy.

And for the first time since her dx in December, she cooked a meal for her family.

She took her daughter to an orthodontist appointment.

And she was SO thankful to feel well enough to do those things and be a "mom" again.

And that's when my brain started thinking.

*I* need to be more thankful for the "Mundane Mom Tasks" daily.

I may not enjoy certain tasks very much, but the fact that I *can* do them is something I take for granted.

It is time to be thankful.

These tasks may seem "mundane" or "not important", but somewhere there is a mom wishing she had the energy to do them.

From now on, my goal is to do my "mom tasks" thinking of Heidi, and all the women who are unable to do them, because for right now, I AM able to do them.

And for that, I am grateful.

Tuesday, October 22, 2013

How it all started...

When The Superhero was diagnosed with T1, I longed for a connection with other people going through the same thing, the same life we were.

I found some online support in a forum and that was adequate for a while.

Then I met some local mamas and we became friends on facebook.

And it was there that they would post links to their blogs. I had never read a blog or ever even thought about writing one until I started reading their posts.

Reading their posts and the comments from other people and feeling the "SAME" from them, I had never felt so connected. I felt like I found a place where I belonged.

It was around The Superhero's 1st Diaversary that I decided to start my own blog.

Not long after, several of us who would read and comment on each other's blogs, we started a weekly chat.

Sunday nights.

We had the BEST time getting to connect in a "live" setting.

Our chats were one of the highlights of my weeks each week.

I don't think I had ever laughed as much as I did on Sunday's!

These women became more than just "bloggers in my computer".

We became a sisterhood.

Friends that were more like family.

Slowly overtime, we started to use facebook more and more, and chats and blog posts became fewer and farther between.

We were able to kept up with each other in a different more "real time" way.

Shamae was one of these women. She blogged. She chatted. And she sure made us LAUGH!

She was more than a friend. She was family.

And I am beside myself in saying that she has passed away.

I am still in shock. As I am sure many in the DOC and her family are. It feels so surreal.

Shamae, you will be so, so missed.

Know that your girls will hear stories about you and will know what an amazing mom you were.

Love you, friend. More than words.

*Disclaimer: I am a mom of a T1 Diabetic child and a child with Allergies/Asthma. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Sunday, August 4, 2013

5 years of D and what I didn't expect to have now...

We have now been living with D for 5 years!

This is the first year that I have no posted ON the anniversary of The Superhero's dx.

I just couldn't think of what to say that day.

I was pretty emotional this year.

And all I posted on Facebook was this picture...

It wasn't until today that I could even put into words how I feel now after 5 years of living with T1 Diabetes.

I have realized that while I despise the disease itself, I am more Blessed today that I ever could have pictured.

5 years ago I had NO idea how I would EVER leave The Superhero with anyone.

5 years later, I am grateful for family and friends who I can leave my kids with and trust them to keep my T1 kiddo alive!

Many of our friends are also T1 families, but not all.

We have one special set of friends who offered to learn about Diabetes and what it takes to manage The Superhero.

They are amazing and I am beyond thankful for them.

All of our support is what keeps me sane.

5 years ago I had NO idea how I would EVER send The Superhero to school!

School?

I was just going to keep him home.

Forever.

5 years later, I am sending him to FIRST GRADE!

He has survived pre-k and full day kindergarten! (and so have I!)

And the school has been pretty awesome.

And he comes home alive.

Also, they love him there. That makes me feel good.

His 1st grade teacher is AMAZING. I think we have been luckier each year and this year, I am blown away with her attention to learning how to keep my kiddo safe at school.

I am ready for school to start! (2.more.days!!!)

And the other thing that hit me as we celebrated 5 years with D...

5 years ago I had NO idea I would EVER meet the best friends I could ever imagine.

I never really felt like I had friends. Don't worry, I was not "alone", I had some friends that we would hang out with and do play dates with.

But I had never had the type of friends you can call on for anything.

True, genuine, life long friends.

Friends that are seriously like family.

They would drop anything to help you.

They will answer the phone in the middle of the night.

They will keep your kids on short notice when something comes up.

Friends I could tell anything to and know they will be in my life no matter what.

5 years later, I finally can say I have exactly that.

I have several friends that I have met because of Diabetes.

But Diabetes is not the reason we are friends.

These are moms who truly "get" my life.

We parent alike.

We think alike.

And we manage "D" alike.

I don't know how I lived life without them, but now that I have them, I know they are truly forever friends.

And they are what makes living a "D" life, a Blessed life.

Related Links:
The Superhero's Diagnosis story (age 18 months)
The Superhero's 1 Year Diaversary
The Superhero's 2 Year Diaversary (Part 1)
The Superhero's 2 Year Diaversary (Part 2-the Celebration)
The Superhero's 3 Year Diaversary
The Superhero's 4 Year Diaversary

Friday, May 17, 2013

2013 Diabetes Blog Week: Day 5 Freaky Friday

Today's Diabetes Blog Week Topic:
Freaky Friday...Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

I have been thinking about this since I saw the topic list for this week.

And I have decided that IF I could switch Diabetes with any other chronic illness, I wouldn't!

All chronic illness are crappy.

AND I wouldn't wish Diabetes on any one!

Whomever we made the switch with would be starting from scratch learning about this disease, and that is not a fun place to be.

No, I would just keep the crappy chronic illness we have come to know and love.

Ok, maybe not love, but we KNOW it.

As much as we can anyway.

We know how to manage it most of the time.

We have friends who know it too.

And staying with something familiar rather than trying something new, in this case, is the best place for me/my T1 kiddo to be!
___________________________________________________________________________________________

As far as if the DOC has affected how I treat friends and acquaintances with medical conditions, I definitely think so!

Maybe not just the DOC as just going through a chronic illness in our immediate family.

I think I am definitely more aware and sympathetic to them.

I never compare one disease to another. Or say things like this is worse than that one.

We are all doing the best we can to live life with the chronic diseases we were given.

And supporting each other and being sympathetic towards one another is an ok place to be.

Click here to read more posts from Day 5 of the 2013 D Blog Week.

See you tomorrow!

Thursday, May 16, 2013

2013 Diabetes Blog Week: Day 4 Accomplishments, Big and Small

Today's Diabetes Blog Week Topic:
We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

I originally wrote this post in August 2011, when The Superhero went to school for the 2nd year.

This has definitely been one of our biggest accomplishments to date.

School.

After his dx at only 18 months of age, it was hard to imagine how we would handle school. How we would let someone else care for him. Someone else keep him alive.

After the first year, things have been MUCH easier.

I am less stressed. And more "go with the flow".

We have gone through a few nurses, and are about to lose another one, BUT we have an amazing nurse assistant (she is not technically a nurse), who is very well trained on taking care of my kiddo.

I love her.

Anyway, here is my post from 2 school years ago...

It was just over a year ago that The Superhero was first officially heading to pre-school.

Our first day was ROUGH, and that is putting it lightly.

The second day was a little better.

The third day drop off went amazingly well! And he came home alive.

And before I knew it, we had survived the first week of school. We got our 504 in place.

We survived a change of clothes and pretty panties.

We survived a REALLY rough day.

We battled breakfast. And survived.

We even survived a field trip!

We did end up pulling him out after he was in the hospital with a tummy bug in January. I couldn't spend the money for him to not be going.

And after ALL that, I would go through it all again. He LOVES preschool. A lot.

Tomorrow he starts. We have his first day of his second year of pre-k. And this time, I am not nervous. I am not worried. I am super excited and can't wait to take him to school!

The difference? We have been there. And not only that. We have been there with the SAME nurse AND the same teachers. No one new to train. They survived 1/2 year with him last year. And I know they will again.

It was a GREAT sign that THEY emailed ME to set up his 504 meeting this year. I went in and they already had the papers printed from MY revised copy. All we had to do was sign the papers saying we held the meeting. And that was it. Easy peasy this year.

So, to all of you who are sending your little ones to preschool with Diabetes this year, know that YOU can do this. The kids will be OK. And you will too. I promise!

Click here to read more posts from Day 4 of the 2013 D Blog Week.

See you tomorrow!

Wednesday, May 15, 2013

5K's are Bad for you. (ok, not really, keep reading...)

I've always wanted to do a 5K. Ok, maybe not always, but recently I have been wanting to do one! You know, one of those "fun" ones?

Then there was a groupon for the Bubble Run. And Wendy convinced my mom and I to sign up with her. Ok, it didn't take much convincing. We saw how much fun it looked in the pictures and knew we had to do it!

This past Saturday, the 11th was THE day. The day we would run...jog...walk? the 5K. We had super awesome shirts that Wendy decorated. And we were set to have a great time!

And we did!

We walked the whole time and had a blast getting covered in colored bubbles.

And we finished!

We did it!

We (my mom and I) completed our first 5K!

It felt good!

We went home and showered. And then it happened. Our weekend went from FUN to CRAP in an instant.

My mom had chest pain. The kind that landed us in the ER. After a 2nd EKG she was rushed to the cath lab and had a 2 1/2 hour procedure to put a stent in her heart.

And then IT happened. The cardiologist was giving a SUPER detailed and SUPER graphic (including video) explanation of what he had done to her heart. Some may think this is cool. And usually I can handle medical stuff just fine.

BUT, I had an empty stomach. I hadn't had time for lunch. Or hadn't taken the time. I wanted to wait until my mom's procedure was done. So hearing all of this on an empty stomach, made things worse.

I started to feel sick.

I remember thinking that I needed to get to the floor.

To sit.

Just needed to get DOWN lower.

I remember actually saying "I don't feel so good..."

The next thing I know, at least 6 people are above me calling my name.

And I could barely respond. I kept thinking in my head "Ah crap! That means I passed out!".

I felt stupid.

But I couldn't get up. I felt sick.

They ended up getting me onto a gurney and into the ER.

What?!

Yep, I had an unexpected trip to the ER too.

They started an IV with fluids. They ran an EKG, lab work and a CT Scan, as a precaution.

My awesome hubby dropped the kids with our friends for the 2nd time in one day and came down to be with me. He stopped and bought some crackers and was smart enough to grab me a Snickers bar too. The Snickers sounded SO good after not eating for so long.

After about 4 hours or so, I was fine and was released to come home.

My mom spent 2 days in ICU with only a short part of that time in a regular room before going back to ICU.

She was able to be released on Monday.

And she is now home recovering well.

So, now you see why 5K's are bad for you. LOL!

I am sure at some point, we will do another 5K. Maybe not for a while. I would like to skip the ER and ICU parts though! I will make sure I don't skip any meals afterward though!

2013 Diabetes Blog Week: Day 3 Memories

Today's Diabetes Blog Week Topic:
Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

After a lot of thinking and debating with myself, it was clear that the MOST memorable day in our Diabetes life would have to be July 10, 2008. This of course was the day my Superhero was dx with T1 diabetes at the age of 18 months.

After almost a week of being "sick" and visiting the ER and pediatrician a few times, we arrive at D day, 7.10.08...

Rod went off to work and I had my mom come over so I could shower before his appointment. Before she arrived I was getting The Superhero’s medicine ready with some juice. I could not do it one handed, so I put him on the floor and he almost fell over. He could not stand on his own. He was so weak. All he wanted to do was be held and to sleep. My mom watched him while I showered. When I came out into the living room she and I decided to take him straight to the Children’s Hospital. We knew if we had gone to the Pediatrician again she would have taken one look at The Superhero and sent us there anyway.

We finished getting everything ready and headed out. We called my dad and Rod on the way to let them know we were headed to the ER. My dad picked up Rod on his way down there. My mom was driving and I kept peeking in the back seat to make sure The Superhero was still breathing while he slept. As soon as we got there we were taken in to a room in the ER. The doctor came in and asked the routine questions. It seemed as though they thought he had swallowed something. He was taken for x-rays of his throat. Nothing. They tried a steroid breathing treatment. Nothing. No change in him at all. During this whole week I had been researching online and knew his symptoms could mean Diabetes, but I thought there was no way. I mentioned this to the ER doctor and they went ahead and checked his blood sugar.

I sat on the ER bed with my baby in my arms as the meter read 598. I immediately started to sob like a baby. I remember hearing my mom ask if it could be that high for any other reason. The doctor assured us there would be no reason for his blood sugar to be that high than Type 1 Diabetes. We were told he was going to be admitted immediately and would be taken to the PICU.

One of the doctors from the Endocrine team came to visit us while we were still in the ER. He explained a little to us about The Superhero being in DKA (diabetic ketoacidosis). He told us the IV team would be coming in to insert an IV into The Superhero ASAP because he was severely dehydrated.

After his IV was in and the room in the PICU was ready, we were moved to our room. During his time in ICU he had 2 more IV’s inserted and began to have his finger poked every hour for blood sugar checks.

And so began our T1 journey!

Other memories that made my top list...

Memories of the tiny straw

The Superhero's first day of school

Memories of D Meet Ups

Our D experience at the Children's Museum

Click here to read more posts from Day 3 of the 2013 D Blog Week.

See you tomorrow!

Tuesday, May 14, 2013

2013 Diabetes Blog Week: Day 2 We, The Undersigned...

Today's Diabetes Blog Week Topic:
We, The Undersigned...Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

Today, today I want to petition the body of people with T1 Diabetes to make a change.

Of course some easy answers would be for the pancreas to begin working properly again or even for a cure!

Today, that is not what my petition is about.

This petition is about carbohydrates and bodies of people with T1 Diabetes.

I mean, why the discrimination?

Why does the body have to treat carbs differently.

Some are fast acting, some are slow absorbing, and some are in the middle somewhere.

I need them to be treated the same.

I need the composition of all foods to be treated the same.

Carb absorption shouldn't be based on the amount of fat or having to subtract fiber.

Life with T1 would be SO much easier and less stressful if I wasn't having to chase high blood sugars due to eating some pizza before bed. Stupid fat slowing the absorbtion!

Therefore, I petition that all carbs be treated equally.

We, the undersigned petition the bodies of people with T1 Diabetes to treat all carbohydrates equally.

If only...

Click here to read more posts from Day 2 of the 2013 D Blog Week.

See you tomorrow!

Monday, May 13, 2013

2013 Diabetes Blog Week: Day 1 Share and Don't Share

Pre-post Note: I know I haven't blogged in like, forever. At least until last week's More Than A DMom post. Then I saw a link to Diabetes Blog Week and I am hoping it will be just what I need to get back into the swing of blogging. I miss it and I miss all of you!

Today's Diabetes Blog Week Topic:
Share and Don't Share...Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

Dear Dr. Dajani,

First I want to say, thank you.

Thank you for being an amazing doctor and relating to us on a real life level.

... for never judging when you find out that The Superhero's pump sites sometimes go without being changed for 4, 5, 6, and occasionally 7 days!

... for trusting that I know what I am doing and can care for him.

... for giving me the confidence in making changes.

... for believing in me as the mother of a T1 Child.

... for never making me feel like his A1C is my report card, even if I still make myself feel that way!

... for never judging highs.

... for understanding that LIFE happens and can cause Diabetes to be "ignored" for a short time.

... for always being available.

... for understanding that Diabetes doesn't play by "the rules".

... for supporting me when The Superhero has been in the hospital and the ER staff didn't know what to do with us.

... for being the most amazing and supportive endo we could ever imagine.

... for making me feel like there is nothing I can't share with you!

And that brings me to the topic of today's post.

There is honestly nothing our awesome doc doesn't know about our day to day life.

I feel like we hide nothing.

She sees our good, our bad, and our ugly.

She has heard about the times we have "forgotten" to take D supplies with us. We always manage to make things work, so in the end it is fine.

She has heard about the times we over or under-bolused for food. We always manage to make things work, so in the end it is fine.

She has heard about the times we have forgotten to bolus completely! We always manage to fix it, make things work, and in the end it is fine! :-)

Hopefully, The Superhero will stick with our awesome endo until he is too old to do so! Which, lucky for us, is well into adulthood!

Click here to read more posts from Day 1 of the 2013 D Blog Week.

See you tomorrow!

Friday, May 10, 2013

More Than A D Mom

May 2004

I became a teacher.

I had my first teaching job before I even finished school.

Long-term sub for a teacher moving out of state.

5th grade, unruly class.

I honestly loved this job.

Life was good.

October 9, 2005.

I became a wife.

Being a teacher, a wife and managing a house became my life.

Life was good.

December 21, 2006.

I became a mommy.

I became a full time work-at-home teacher.

Being a work-at-home teacher, wife and mom became my life.

I loved this life.

Life was great!

July 10, 2008.

I became a D Mom (aka Diabetes mama).

Being a Diabetes mama became my life.

This life consumed me.

I was not in love with it.

Life was different.

It became a life of blood sugars

...of insulin

...of chasing a toddler to give him shots

...of pump sites

...of counting carbs

...of constantly have numbers float around in my head

...of second guessing my decisions

...of panicking if my cell phone wasn't nearby

...of sleepless nights, every night, FOREVER.

It became a life of going through the motions just to survive each day.

And to keep my Superhero alive.

After a few years and another baby (aka, The Princess) it was time to do something for ME.

I needed more than being a teacher.

I needed more than being a wife.

I needed more than being a mom.

I especially needed more than being a D Mom.

I have no idea who I was before Diabetes.

Before babies.

Before marriage.

That person, that woman, is long gone.

But it was time that I needed to find something for ME that could show me who I am.

Who I could be.

Or at least who part of me could be.

Being a teacher, a wife, a mom and especially a D Mom wasn't going away.

It wasn't until my husband's grandmother passed away, and I inherited her sewing machine, that I finally had found something for ME.

It started simple with pajama pants for my kids and pillow case dresses for The Princess.

Then it evolved into some quilting.

And now I am constantly challenging myself with new projects.

I have made burp cloths, chenille baby blankets, car seat canopies, nursing covers, tote bags, and duffle bags.

It turns out that I am actually creative (that is SO hard for me to say about myself!).

I even started my own little online store.

Sewing is my time.

Even though I make most of my projects for other people, it is MY time.

My therapy.

My kid free, husband free, DIABETES free, ME time.

And life with Diabetes never goes away.

And sometimes my ME time gets interrupted.

But I am able to go to it when I need a break.

When I need to breathe.

Even if just for a few minutes. Or a few hours.

The rest of the time can be filled with life.

Including life with Diabetes.

Diabetes doesn't just go away. And focusing on me time doesn't always happen. (Hello, cell phone within arms reach!)

Sometimes D just needs the attention. And usually I am ok with that.

But, it is important to have something to escape to.

Once in a while.

When I need to be "More than a D Mom".

Because I am more than that. Right?

*** This post is one of more than a week long series of posts titled "More than a D Mom". Here are the other Mamas who have already shared their posts... Hallie, Meri, Lora, Wendy, and make sure to check out Donna tomorrow! ***

Saturday, August 25, 2012

"What is that thing?"

For the first time ever, The Princess was invited to a friend's birthday party.

Sure, she has been to birthday parties before. But this time was different. It was for one of HER friends. She is only 3 after all and doesn't have a ton of friends. This particular friend is from dance class and her mom and I have become friends.

So, last weekend we wrapped up a present and I took both kids to the Mermaid/ Pirate Party. They had a BLAST and The Superhero has now decided he wants a Pirate Party too!

This was the first time being at a party where not everyone knew Diabetes was in our lives. It was kind of weird for me. I just did my thing off to the side and most parents didn't notice anything. (LOVE using a remote to bolus for the cupcake!)

Except this one mom. She saw me lift his shirt and check Dexie.

Of course, she didn't know it was a Dexie or what that even was. She asked me a while later "What was that under his shirt that you were checking?"

I was taken aback a little. In my world, everyone just knows that he has Diabetes and that is that. For a minute I forgot that she didn't already "know".

I simply answered "He has Diabetes and I was just checking his monitor". And I left it at that.

She didn't really need to know details.

And to be honest, I was just not in a "Let me explain Diabetes to you" kind of mood.

I just wanted to enjoy the chaos of a kid birthday without having to think about D too much.

After my "short" answer, I assumed that would be that and we would move on.

Then a bit later she asked "When was he diagnosed? How did you find out?"

Sigh.

I didn't really want to go into details. I just didn't feel like it. Did she really want to know that he was 18 months, almost died, and we are luck he is alive today?

"He was only 1 1/2 at the time. He got really sick and we took him to PCH. I had googled and that was that."

It felt weird to have this conversation with a stranger. I don't have to explain his diagnosis much these days. Our "circle" of friends all know what we deal with day in and day out.

After my very short explanation of the diagnosis, it wasn't mentioned again. Every now and then I could see her watching what I was doing. Checking Dex, giving insulin via remote, etc. Nothing else was said.

For the first time, I surprised myself for not going into more details.

I hadn't really thought about going to a party that didn't involve people who were already in the "know".

I never really thought about the fact that even though we will attend non-D events, that D really never leaves.

And I guess sometimes people will ask "What is that thing?".

Maybe next time I won't be caught so off guard so I can come up with a better answer to educate about D.

Maybe.

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Sleep Apnea. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Tuesday, July 10, 2012

4 Years with D

I cannot believe it has been 4 years.


In PICU, IV's in both arms and neck. :-(

It hurts to say that my 5 1/2 year old (that 1/2 is a BIG deal right now) has had Diabetes for 4 years.

That is almost his whole life.

I am trying my best to not think of the what ifs that could have happened had we not taken him to the ER that day.

I thank God every day that He has allowed us to take care of The Superhero while we are here on this Earth.

In TX, enjoying his new Star Wars pump/Dex pouch (from TooSweetBoutique).

And when I told The Superhero the other day that his 4 year Diabetes anniversary was coming up, he said "Wow, that's not that long.".

I was kind of surprised.

But to him, I guess, 4 years doesn't seem like that big of a deal.

His perspective is what helps me get through.

And the cake. We are having cake. That will help too.

Here's to 4 years of health and happiness with Diabetes!

Related Links:
The Superhero's Diagnosis story (age 18 months)
The Superhero's 1 Year Diaversary
The Superhero's 2 Year Diaversary (Part 1)
The Superhero's 2 Year Diaversary (Part 2-the Celebration)
The Superhero's 3 Year Diaversary

Thursday, April 26, 2012

Appointment Update...

Yesterday, we had 3 appointments for The Princess. Here is our update on each one. :-)

1) We went to neurology first. She has never slept well and has been diagnosed with sleep apnea a few months ago. The neurologist is not sure her restless sleep is due to her apnea or due to learned behavior. I have agreed to try sleep training to get her to sleep in her own bed and fall asleep on her own. This means we will have to let her CRY all night if necessary. (remember doing this with babies?) Should be super fun! I am planning on working on this over the weekend while Rod is off at a work training event for 3 nights. Please pray we make it through.

If she still has issues with sleeping/breathing at night after we "train" her, we will go back to the doctor to discuss options to help her.

2) We went to hematology second. Her platelet count was still up at 162,000! This was GREAT news! Since her counts stayed in the same range for the last month, we are not moving forward with a bone marrow biopsy at this time. The doctor thinks she *may* have recovered and *may* never have an issue with platelets again. I am not going to get my hopes up at this time, but really want to be done with the ITP chapter of our lives. We will go back in 2 months to do another platelet check. If she has dropped by that point, we will definitely do a biopsy.

3) We went to her allergist. One month ago she broke out in a rash in the morning. We had her tested for several things through a blood draw (since I had given her benedryl we couldn't do scratch testing), all came back negative. This appointment we wanted to do some scratch testing. The last time we scratch tested The Princess she was 1 1/2 years old and it was no big deal. They used this thing that did about 10 scratches all at once.

NOT THIS TIME!

They did each and every scratch individually. She had 63 scratches on her back. She was NOT a happy Princess. There were more tests on the tray, but I had to stop the nurse. The Princess was D.O.N.E. Then we waited our 15 minutes and they came back in to read the results.

The Princess is officially allergic to mesquite trees (yay, AZ! We have LOTS of those), cockroaches (shouldn't be a problem), a certain type of mold (not a problem here either), shrimp (never eaten it before, now will avoid), and CINNAMON. I was surprised that Cinnamon came back positive because it was negative on the blood test. But, she did have benedryl on the day of the lab work, making me wonder if those were false negatives. So, we avoid these things, have an epi pen just in case, and do some more testing in a month.

After our LONG day, The Princess earned her Mermaid Dora she had been wanting. I told her if she was good for her appointments I would buy it for her. She was allowed to cry when she got poked, but had to cooperate for being weighed, measured, blood pressure done, pulse/ox done, when the doctors were looking her over, etc. She was AMAZING yesterday. She has been fighting all of these things lately, so this was a HUGE improvement. Yay, Princess!

Here are some pics from our day...

Waiting for lab results...

Watching a Barbie movie while we waited for our lunch...

Watching Dora while we waited for the Allergist...

A very unhappy Princess after being scratched up...

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Tuesday, April 24, 2012

One Year Ago (4/25)...

our lives were changed again. This time it was The Princess' diagnosis with ITP.

The first year with Diabetes seemed to go faster for me than the first year with ITP in our lives. It has been a LONG year of ITP.

You may remember a year ago we were waiting for lab results. We weren't completely sure what we were dealing with or why she was bruising like she was. Then we thought it would be a simple round of steroids, turns out steroids are NOT the first choice of treatment.

The treatment we choose for her comes with some NASTY side effects. We have learned to "beat" the side effects (most of the time)

I learned a lot about ITP in a short amount of time.

We were holding out hope that she would recover and go into remission within the first 6 months. It has been shown that 80% of kids will go into full remission within 6 months of diagnosis. Sadly, this didn't happen. Then we were hoping within 1 year. Well, that hasn't happened either. The Princess has had many IVIG infusions and many, many blood tests to check her counts.

She has also had a bronchoscopy, ear tubes, adenoid removal, and a tonsillectomy in the past year. Each one of these procedures required a platelet check and IVIG for most of them prior to putting her under.

Her platelets have not dropped as low as they did in the beginning, but they never stay up on their own. Her last check was 1 month ago and she was at 150,000. This is good, but they were 250,000 a month prior.

We are going to her hematologist for a check-up tomorrow. If her counts have dropped again, we will be discussing a bone marrow biopsy to rule out any other cause of her low platelets. Since she has had ITP for one year, she is considered to have Chronic ITP at this point, which means it will NEVER go away completely. She may have periods of remission, but may also have periods where her counts drop and she needs treatment.

(I will update after her appointment as to her counts, etc)

I have to say that this diagnosis has changed me and taken over my life more than I thought it would. It has put me in a "rut" if you will, with Diabetes. I can only seem to focus 100% of my attention on one disease and ITP has caused me to lose my Diabetes fighting "mojo". I am working on getting back on track with the D management. I don't want to let this disease to cause The Superhero any complications because I have not focused on him in the last year as much. Time to get out of the funk!

Even with another autoimmune disease in our lives, I am beyond thankful to have my beautiful, happy and healthy Princess in our lives!

Here are some pictures from her ITP journey...

Keep the prayers coming!

Saturday, March 3, 2012

I Believe in Miracles!

If you have been on Facebook this past week, or read some other DOC blogs, you may already know that our sweet friend, Meri and her family were given some not so good news last weekend.

You can read Meri's post HERE. Her amazing husband was just diagnosed with metastasized melanoma. He has 6 tumors in his brain, as well as tumors in his lungs and abdomen. In Meri's post you can read about the treatments they started this week.

A FB page, Schuhmacher Family's Miracle, has been set up for friends and family to gather for updated information, prayer and support during this journey. We invite you to post prayers and reflections of hope on your personal blogs and websites. There will be a thread started there, where your links can be shared. If you do not have a blog/website, and would like to share your prayers, please feel free to add your thoughts and reflections to the thread as well. By keeping them in one place, the family will easily be able to access your words of encouragement in the days, weeks, and months to come. Please spread the word to anyone, and invite others to join this massive prayer effort as well.

I truly believe in miracles and I know that this family, specifically Ryan, need one NOW.

I am joining the Schuhmacher family and friends in a day of prayer and fasting tomorrow. I will spend the day praying for a miracle. A true, God is the only one who can do it, kind of miracle.

And to quote my pastor (thanks, Steve!) "Big issues demand big prayers to a big God."

And I truly believe it can and will happen.

I am not typically a "public" prayer kinda person, please bear with me.

So, God, I know you are listening. Here is my plea.

Dear God,
I thank you for being a God who can do so much more than we can do ourselves here on Earth. I have complete Faith that YOU, God, can heal Ryan Schuhmacher. And that is what I am asking of you now. I ask for comfort and peace while he endures the treatments in the days, weeks, and months ahead. But what I want more than anything, is for a miracle. The kind of miracle I know only you can give. In Jesus' name I pray, Amen.

Again I say unto you, That if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my Father which is in heaven. For where two or three are gathered together in my name, there am I in the midst of them.

Mathew 18:19-20

We are also uniting to raise money to help with Ryan's battle against cancer. If you can help in any way, please visit the Give Forward site below.

Medical Fundaising Made Simple

Most importantly, please continue to pray for the Schuhmacher family, specifically for a miracle for Ryan.

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