My life with The Superhero and The Princess

2013 Diabetes Blog Week: Day 5 Freaky Friday

noreply@blogger.com (Tracy) — Fri, 17 May 2013 14:34:00 +0000

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!

*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.*

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

noreply@blogger.com (Tracy) — Thu, 16 May 2013 17:17:00 +0000

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!

*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.*

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

noreply@blogger.com (Tracy) — Wed, 15 May 2013 21:57:00 +0000

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!

*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.*

2013 Diabetes Blog Week: Day 3 Memories

noreply@blogger.com (Tracy) — Wed, 15 May 2013 20:59:00 +0000

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!

*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.*

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

noreply@blogger.com (Tracy) — Tue, 14 May 2013 18:48:00 +0000

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!

*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.*

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

noreply@blogger.com (Tracy) — Mon, 13 May 2013 23:17:00 +0000

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!

*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.*

More Than A D Mom

noreply@blogger.com (Tracy) — Fri, 10 May 2013 13:00:00 +0000

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! ***

"What is that thing?"

noreply@blogger.com (Tracy) — Sun, 26 Aug 2012 00:48:00 +0000

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.*

4 Years with D

noreply@blogger.com (Tracy) — Tue, 10 Jul 2012 14:00:00 +0000

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

*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.*

Appointment Update...

noreply@blogger.com (Tracy) — Thu, 26 Apr 2012 14:29:00 +0000

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.*

One Year Ago (4/25)...

noreply@blogger.com (Tracy) — Wed, 25 Apr 2012 02:23:00 +0000

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!

*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.*

I Believe in Miracles!

noreply@blogger.com (Tracy) — Sat, 03 Mar 2012 22:29:00 +0000

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.

*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.*

What a FUNK, and some updates...

noreply@blogger.com (Tracy) — Fri, 02 Mar 2012 23:31:00 +0000

Well, HELLO there!

Has it really been 4 1/2 months since my last post? Wow!

Life has been crazy.

Isn't it always?

And I have been in a major FUNK.

Diabetes FUNK.

ITP FUNK.

Sleep FUNK.

Blogging FUNK.

You get the picture.

Time to get out of this FUNK and move forward. I miss blogging, I really do. Just trying to fit it into my life these days has been impossible. Clearly.

So, what have we been up to since November 2011?

Here is the quick bullet point update...

The Princess had a sleep study done in December 2011. We had this done due to her continuing sleepless, restless nights. She hated the study and being hooked up to everything you can imagine. The results showed mild sleep APNEA, for her mostly hypopneas. It made total sense to me. She has never breathed normal when sleeping. Ever. I have always noticed a change in her breathing while she was sleeping. As to why, they have no idea. She doesn't fit the description of a "child with apnea". She isn't overweight and she didn't have enlarged tonsils. We are still working with her doctor and I have emailed a specialist in CA to see what else we can try.

The Princess had her tonsils out in December 2011. We did this in response to the above diagnosis. I pushed to get it done before the end of the year since we had met our out of pocket max for her. Of course, anytime we do any procedure, we have to get her platelets checked first. At this time, they were too low for this messy procedure and we had to do another IVIG to boost her counts before surgery. We also had to stay overnight for observation due to her ITP. And let me tell you, she is NOT a very patient patient! She tried taking her IV out a few times before we taped a sock over it. She would not let me leave the bed without FLIPPING out. It was nuts. But, we only stayed one night and she healed fine. Unfortunately, this did not help her sleep. Or it hasn't appeared to in the months following surgery.

The Superhero had his quarterly endo appointment in December and his A1C was still higher than I like. He is back in the 8's and I can't seem to get things straightened out. We go back in March and I am praying for better numbers. There is nothing consistent about his BG these days. This is making it HARD to know what to change and when. I am sure it will settle down at some point.

Both kids had croup in January. This meant steroids for both. For The Superhero, this meant HIGH BG's and, hello, that is not helping the A1C! And for The Princess, it boosts her platelets. This can be deceiving and make it look like the ITP is better, when it really may be false hope

The Princess has gone for platelet counts several times over the last few months. Each time being either after an IVIG treatment, or after steroids, her counts have been good. We go back again in April. It will be 1 year since her dx with ITP. If her counts drop by then, we will be discussing doing a bone marrow biopsy, just to make sure there isn't anything else going on.

The Superhero is still in pre-school and loves every minute of it. He has been signed up to start Kindergarten next year. I am still in denial.

The Princess has been put in and taken out of daycare again. I need her to go so I can get work done during the day, but she got sick 3 times in the 2 1/2 weeks she had been back. I have found a much better solution that is working out SO much better. A fellow D Mama and friend of mine who lives 1 mile away does pre-school with her niece and nephew a few days per week and has graciously allowed me to drop The Princess with her three days per week. The Princess is in LOVE with her and her kids. They do so many fun things that I think if there was a choice, The Princess would live over there.

Whew... Now that you are caught up on what we have been up to, I promise, ok maybe I shouldn't make a promise I am not sure I can keep... I will do my best to keep up with blogging more often. I miss it. I really do. I just need to make it fit into my life again.

*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.*

3rd Annual D Blogger/ D Family Christmas Card Exchange

noreply@blogger.com (Tracy) — Mon, 21 Nov 2011 01:52:00 +0000

It's that time of year again! And yes, I am calling it "annual" now. I think since it is our 3rd year, it should be considered "annual". :)

In years past (2009 and 2010) we had a blast sending and receiving Christmas cards to other blogging families. If YOU would like to be included THIS year, please contact me via the form below NO LATER than Friday, December 9, 2011.

Just fill out the form here and I will send YOU the compiled information to the email you include.

Please fill out the form entirely. This list will not be posted/published on a blog, only emailed to those who are interested in the exchange. So please feel free to use names of all family members if you are comfortable.

Also, feel free to post this information on your blog!

I look forward to sending and receiving cards again this year! It was a BIG highlight of the season last year!

For the names, some people usually put The ___ Family and others are listing each name of the people in their family. Either way is fine. :-)

Let me know if you have any questions. onesuperheroandoneprincess (at) gmail.com

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*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.*

BIG Princess News...

noreply@blogger.com (Tracy) — Sat, 19 Nov 2011 04:23:00 +0000

My Princess is FINALLY potty trained! 100%! She has had NO accidents during the day or night in over a week. And what did she get for that? Besides the prize every day, of course...

She got her EARS PIERCED!

We told her last week that if she went a whole week with no accidents, she could get them pierced. Well, she must have really wanted holes in her ears because she DID IT!

Here is our ear piercing experience in photos, and then a little about how things got complicated...

She has NO idea what is coming...

Putting dots where the studs will go...

Getting a little nervous, but still not really sure what is happening...

Get ready, get set...

...GO!!!

She calmed down once we showed her the earrings in the mirror. Still not happy though.

Beautiful little pierced ears...

And then the drama came in. No more than 2 hours after she got home, she snagged one on a couch pillow and pulled it out. Daddy couldn't get it back in. So, I took her back up to the mall and had them do it again. :-(

She KNEW what was coming the second time and it was NOT fun.

I had to tell her she HAD to let them do it, or we had to take the other one out. She sat still and let the girl put it in. And she now has 2 beautiful flowers again. And I have a similar pair so we can match.

And to ruin my "fun" I woke up in the middle of the night wondering how her ITP and ear piercing would go. Hoped and prayed her platelets were still up around 64,000 where they were on Tuesday. I seriously should NOT have to worry about something like another stupid autoimmune disease when all I wanted to do was have girl time celebrating a HUGE accomplishment. Oh well. Not much bleeding and the ears are done.

*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.*

I don't want to talk about it.

noreply@blogger.com (Tracy) — Wed, 09 Nov 2011 03:32:00 +0000

It is November.

November is Diabetes awareness month.

Last year I spent the entire month posting facts every day about the disease that our family and many of our friends deal with on a daily basis. (you can read last years posts under the Facts about T1 Diabetes tab at the top of my blog)

This year, you wouldn't even know diabetes was such a huge part of our lives. Not because it has gone anywhere. Not because I don't think about the stupid disease all.the.time. Because I do, of course. I spend every waking moment, and some sleeping ones too (weird dreams, so not fair to dream about diabetes).

The thing is, I just don't want to talk about it.

I am tired of this disease.

My Superhero is tired of this disease.

I don't want to talk about the fact that his last A1C was higher than it has been in a year and a half.

I don't want to talk about the fact that I have let pump sites go as long as 8 days before changing them because I am so incredibly busy that I can't keep my days straight. And I only changed it then because we had our very first low cartridge warning.

Even though I know THIS is our month to educate and inform the public about a disease that can take my kid's life, or any of theirs for that matter, I don't want to talk about it.

Major Diabetes burnout going on here.

And I don't want to talk about it.

*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.*

Appointment Update

noreply@blogger.com (Tracy) — Wed, 26 Oct 2011 18:49:00 +0000

Yesterday we went for The Princess' hematology and ENT appointments.

We received great news at hematology. Her platelets are still up, 94,000! The doc said that since it has been 6 weeks since the last IVIG treatment The Princess is probably making platelets on her own.

We have heard this before, and then 2 weeks later her platelets dropped. I am trying to hold out a little hope this tme.

The doc also said that she really feels this is just ITP and she does not see a need for a bone marrow biopsy at all. That was also great news.

We go back on the 15th, or sooner if needed.

The ENT agreed with me that a second set of ear tubes would be beneficial. The left ear, ehich has no tube currently, is filled with fluid. We will also have her adenoids removed. This is commonly done when a second set of tubes is needed. I was told the scheduler would call me.

To my surprise, I got the call this morning. They have an opening tomorrow for the surgery. Since her platelets are up today, I took it.

So, she will go in tomorrow morning to get all this done. And hopefully she will feel great by Friday for her birthday. Maybe she will even start to sleep through the night!

I can hope...

*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.*

Where do I begin?

noreply@blogger.com (Tracy) — Wed, 19 Oct 2011 21:15:00 +0000

Sometimes I don't even know which way is up any more. Our crazy normal continues around here. The kids have both been sick off and on for the past 4 weeks or so. We all currently have a sinus/ chest congestion. We all sound like we have bronchitis/ croup going on.

The Princess just really started sounding bad last night/ this morning. She woke up struggling to breathe, super seal sounding, and wheezy. I called and scheduled an appointment with the pediatrician.

Before we left I remembered that the hematologist had said she did not want The Princess put on steroids if we could help it. At the time she said it, I didn't ask why. It wasn't relevant at the time. I am thankful I remembered this today though. typically, for croup, we would put The Princess on steroids to help her.

So, I called the hematology nurse and left a message. She called me back on our way to the pediatrician. We discussed that of course if The Princess really needed the steroids to help her breathing, we would do it. But, if we can avoid them, we should.

Since The Princess has has ITP for almost 6 months, we have to start looking at other possible causes of the low platelets. It could still be just a low platelet problem, ITP. Or there could be a problem with her bone marrow. Even with no other symptoms.

So, we will be discussing a bone marrow biopsy with them at her appointment next week. If we give her steroids now, it could affect her bone marrow and give us false results.

The one plus of this, if there is one, is that we should be able to combine and do both the bone marrow biopsy and the ear tube/adnoidectomy/sinus cleanse all at the same time.

I will update after both appointments on Tuesday. Until then, please pray for calm nerves around here. I am trying not to stress about any of this and to give it all to God. It will all be ok, one way or another.

Where have I been? An update...

noreply@blogger.com (Tracy) — Wed, 12 Oct 2011 03:58:00 +0000

Hello Blogging World!

Things have been nothing but CrAzY around here, as usual. I guess that is our normal now.

Last time I posted about The Princess she had a day of an IVIG treatment prior to her bronchoscopy.

And I realized today when my dear friend, Chasiti, posted on my FB wall that she wanted an update on The Princess, that I hadn't updated anyone about anything. I have been in a funk of sorts with everything going on.

Well, here is the update...

We had her bronchoscopy on 9/15. She had her platelets checked that morning and they were above 100,000 and she was cleared for surgery. The bronchoscopy was done and over within minutes. The pulmonologist said she had the most beautiful airways you could imagine. We discussed the swallowing disorder and she, along with the other pulm. docs, are investigating the diagnoses of dysphagia. She said that more and more kids are being diagnosed with it from their radiology department that they are wondering if they are over-diagnosing. We discussed transitioning The Princess to regular liquids over time. I took it upon myself once we were home to try The Princess with plain water. She has been doing GREAT since. She originially was coughing a lot when drinking. Now I am wondering if her asthma was out of control back then and that is what caused the coughing and not her swallowing at all. Anyway, for now, I am doing plain water mostly and she is in Heaven.

We have been back to the dermatologist and the rash on her face was not clearing up. She started her on 2 months of Zythromax, to be taken 3x per week. Her face is clear now and I am hoping it stays that way.

The Princess was diagnosed with a Sinus infection back in August. After 2 rounds of antibiotics I took her back to the pedi, along with The Superhero. They were both very sinusy (is that a word?) and had goopy eyes, etc. We decided they both had sinus infections and they were both put on one month of antibiotics. The Princess can only have Zythromax, so we upped the dose this time.

We followed up with the ENT for The Princess last week due to her ear tubes. It has been a year since they were put in.The left one fell out a while ago and was stuck in the wax. The ENT was able to get it out. The right one is still in place for now. We also discussed The Princess' sinus infection. I am concerned that we are putting her on antibiotics for such a long period, and there is only ONE she can even have right now. I am very worried about the possibility of her developing antibiotic resistance. I have even contemplated pulling both of my kids out of school and keeping them in a bubble at our house. We stayed in most of last winter due to illnesses and it seemed to help. But, that is not as realistic this year. I am busy with work and can't have both kids home with me all the time. Anyway, back to the ENT. He said to keep her going on the antibiotics we were doing for now and to follow up with him in a month. He mentioned the possibility of surgery for her sinuses. We have an appointment on the 31st of October.

In the meantime, I looked up other ENT's. Not because I don't like ours, I do, but he does not do any sort of surgeries at the children's hospital. And after her ear tubes were put in at a surgery center, and they kick you out the door as if she was an adult, I decided I wanted to keep any surgeries that are required at the children's hospital if we can help it. So, I found a ped ENT who does surgeries at PCH, and he has an office about 3 miles from my house as well. PERFECT. I called yesterday and they were able to get us in TODAY. He looked at her CAT scan from the end of August and agreed she had a sinus infection. He said he would not do surgery for that alone. BUT her left ear, the one with no tube currently, was filled with fluid. He said a second set of tubes was probably not out of the question. And if we put new tubes in, we will take out her adenoids and clean out her sinuses while we are in there. We go back in 2 weeks on the 26th to see how her ear looks and make a decision.

So, that is where we are at right now. I am thinking surgery for the ears/adenoids/sinuses will be happening. And that means a platelet check and possible IVIG beforehand to make sure she doesn't bleed all over. Fun times in our house!

I feel like the "If you give a mouse a cookie..." series right now. :-) (Those of you with small children HAVE to know what this book is)

At least she is still pretty happy and growing up WAY too fast...

The facade...

noreply@blogger.com (Tracy) — Tue, 20 Sep 2011 17:14:00 +0000

There has been a lot of talk of rainbows, unicorns, and glitter in the DOC lately (Diabetes Online Community).

It has also been brought up that people who blog are too negative and are perceived that their lives suck. I haven't said much about this until now. It got to me last night when I read another comment about it on Facebook.

Here is what I would like to say to those people.

I, like I know many of other bloggers are as well, am a very positive person. We live life just like you and see positive things going on in our lives. We really do. These typically are not the things that make it onto the blog to be shared with our readers.

And I think I know why.

Each and every day in our "normal" lives we are forced to put on a facade of sorts. The people we see and the interactions we have are not typically related to the disease our kids fight day in and day out.

We know our struggles.
We know we have long nights of checking blood sugar.
We know we have long nights of fighting highs and lows.
We have days where we fight them too.
We have battles where our kids sneak food.
And battles where we can't get them to eat at all.

This is truly what our lives consist of. Sure we have other things going on too. You know cooking meals, cleaning floors, doing laundry, etc. But it is these "extra" and highly necessary tasks that tend to bring us down.

We cannot share these things with our day to day interactions. They don't get it.

So, we put on our facade for them. They often see diabetes as "easy". Why? Because they don't see all the struggles. They might see a finger poke. They might see snacks being given. But to them that is it. Diabetes is no big deal.

But we know different. We know all the work that goes into every decision we make. We have to think and make decisions on why this low needs 5 skittles and that one needs 1/2 pack of fruit snacks.

We tend to hide what is really going on from the people who don't get it and don't have diabetes to deal with daily.

Hence the facade.

Instead, we bring that here.

To the DOC.

We use blogging and Facebook as a safe place to share what is going on. To share our frustrations. To share the "negative" stuff. This is where we get it off our chest so we can move forward. Once the emotions and feelings are OUT, we can move forward. Just because we may seem negative in our posts, that does not necessarily mean we are sitting around moping all the time.

And sure, there are times when we get into a little bit of a diabetes rut and we might be a little more down that normal. And you know what, that is ok! We all have our good days, weeks, and months managing a crappy disease. And we have our share of bad days, weeks, and months too.

Because no matter how you look at it, Diabetes sucks.

The only saving grace for me is that I have all of you for support and this blog to get out the negative crap so I can move on.

There are no rainbows, unicorns, and glitter on a daily basis with this disease.

And if you want to put on a facade of your own and make it appear that is what your life is all about, go for it. That is your choice. But please don't put those of us down that don't see life that way.

In my world, in the life I live, it is ok to have emotions other than rainbows, unicorns, and glitter.

*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.*

"You don't know what it's like."

noreply@blogger.com (Tracy) — Wed, 14 Sep 2011 16:14:00 +0000

This is what I heard yesterday. Let me start at the beginning...

I took The Princess for blood work on Monday after discussing her upcoming bronchoscopy with the hematology nurse. We decided we needed to know where her platelets were before the procedure. I got the call the next morning that she had dropped from 137,000 the week prior to 68,000 this week. 50% drop in less than a week was not good. We made the decision to go ahead with IVIG now so we could guarantee her platelets would be up enough for the procedure on Thursday. We rushed down to the children's hospital, got her IV in on the first try, and got her all hooked up.

While we were sitting in our. Infusion spot for the day, I heard a heart wrenching conversation that seriously broke my heart and made me think. This conversation was between a mother and her son. I don't know their story. I just know we were in the oncology/hematology clinic infusion area. I know the boy had a IV and was getting some sort of infusion. They discussed with what seemed like his doctor about leaving his IV in and starting IV fluids at home because he was not drinking enough. When the doctor left, this poor child had a melt down. One that brouht me to tears.

He was crying saying things like...

"I don't want an IV! Take it out!"

"You don't know what it is like to have surgeries and IV's and stuff!"

And his mom's response, made me a little mad.

She said "Well, you don't know what it is like to watch someone go through all of that either!"

Mad.

And quite sad.

Why did she react that way? Why couldn't she just let him have his pain for whatever ails him? She could have just said, I know. I don't know what it is like. I am sorry you have to go through so much. It isn't fair and it is ok to be upset about it all.

Or something like that. Because the truth is as a parent I have no idea what it actually feels like to be the one going through the medical challenges myself. And I would never want to discount what the person themselves is feeling. Medical stuff sucks and it is not fair.

And I don't think it is fair to compare the pain and challenges of the parent managing the medical challenges to the kids living with them.

This mother and son taught me to let my kids feel what they feel about their diseases and to not let my feelings overpower theirs. Because what I deal with is nothing in comparison to what they live with every day.

*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.*

A glimpse into the week ahead...

noreply@blogger.com (Tracy) — Mon, 12 Sep 2011 15:01:00 +0000

It seems we never have a dull moment around here. And we rarely have a week without someone having a doctor appointment these days.

Last week we received some decent news. We went in on Wednesday for The Princess' platelet check to find out that the steroids she was on for her asthma the week prior helped her platelet count A LOT. She was back up to 137,000! Amazing. We avoided an IVIG treatment for now. We scheduled her next appointment for 3 weeks from then, on September 28th.

Today we are going to the dermatologist for a follow up for The Princess. She has had this rash (perioral dermatitis) on her face since May. The dermatologist had us using a protopic cream 2x per day for 6 weeks. I wish I could say she was "clear", but she is not. I forgot to use the cream for 1 1/2 days last week and the rash came back worse than before. The rash is not contagious, it just looks yucky and bothers The Princess a lot when it is bad.

Tomorrow I take The Superhero for his quarterly endo appointment. My dad asked me why I even take him for these appointments. We do all the adjusting on our own. The only reasons we go I guess are to get his A1C and to hear how great she thinks we are doing. Somehow that helps me keep plugging along with Diabetes. I am not nervous at all this time around. Diabetes (knocking on wood) has been ok lately.

Then on Thursday is a bigger appointment for this week. The Princess is scheduled for a bronchoscopy at the Children's Hospital. In my post about the longest day of my life so far, I mentioned that the pulmonologist wanted to see if something more was going on causing The Princess to fail her swallow studies.

I got the call on Friday that they had an opening for the 15th with our doctor, so I took it. If we waited for a date that worked better in my schedule, it would be with another doctor or more than a month out. So, Thursday of this week it is! We have to be there at 12pm and the procedure will be at 2pm. The Princess is not allowed anything to eat or drink for 6 hours prior to the procedure, which means nothing after 8am. Since her drinks are thickened and the thickening gel process as a food, she cannot have ANYTHING. This will be HARD for her.

So, that is what we are up to. I would like to request prayers and positive thoughts from all of my friends regarding the bronchoscopy. I am not really nervous this time around about her being put under, but any prayers and thoughts are appreciated and I am sure will help!

I will update when we know more.

Hope everyone has a great week!

*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.*

The longest day of my life so far...

noreply@blogger.com (Tracy) — Wed, 31 Aug 2011 03:51:00 +0000

I have had plenty of long days in my life. But nothing like today!

We started with The Princess' hematology appointment. Some good news there, sort of. Her platelets were down from the 67,000 we had last week. 25,000 today. This is of course very low, but not low enough to warrant a treatment. We will go back next Wednesday and will be prepared to stay for treatment if platelets continue to drop.

Then we went to the pediatrician. This was not originally on my plan for today, but The Princess woke up with a terrible cough at 2am. Very croupy sounding. Her inhalers seemed to help after a while and she went back to sleep around 4am. She kept saying "my ear hurts" and "my don't feel good".

The ears looked fine to the pediatrician, but we wondered if there was some sort of pressure she was feeling since she continually complains of ear pain, even with no infection. The pedi ordered a CT scan of the sinuses, STAT.

I called the lab and got an appointment for a little over an hour later. Just enough time to grab some lunch before the scan.

The kids and I enjoyed a picnic lunch in the back of our van. They thought it was cool to be in the van and out of their car seats.

Then we went for the CT scan. The Princess was SCARED. Poor thing. I had to stand above her and try to hold her head still while they scanned. She cried. Luckily, she held still enough they got what they needed. We would have results before the end of the day.

We got back in the van and I told the kids it would be a good time for a nap while we drove back down to the children's hospital for the pulmonology appointments. The Superhero was fast asleep. The Princess kept herself awake coughing her poor little head off.

I drove around extra to waste time and let The Superhero sleep. I ended up pulling over at one point to do The Princess' inhalers. She just can't seem to quick coughing. After some wasted time we headed to the appointment. Both kids had pulm. appointments. The Princess had a follow up for her asthma and The Superhero had his first appointment for a croup evaluation. He has had croup WAY too many times this year.

The appointment went well for both kids. As well as can be expected I guess. The Princess is starting steroids tonight for her "croupy" cough. She seriously can't stop coughing! She has barely stopped coughing for more than a minute since mid-day today. Crazy.

And The Superhero officially has asthma as well. He actually thinks the inhalers are cool, for now. We will follow up for both kids in November.

The doc was concerned that The Princess did not pass her swallow study again. She is going to schedule a bronchoscopy to see if something more serious is going on. This will be scheduled soon.

After that appointment, we headed home. Finally. I was/am wiped out!

I got things ready to make dinner when I got home. Then I got the call from the peds office. The CT results were in and The Princess officially has a really bad sinus infection. Antibiotics for the next 5 days, off 5 days, on 5 days. And a re-check of the CT scan in a month.

So, here we are, $150 in copays and $100 in rx's later.

So thankful today is almost over. Now hoping for better sleep tonight than last night.

*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.*

My, my, my, times have sure changed...

noreply@blogger.com (Tracy) — Mon, 22 Aug 2011 04:45:00 +0000

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!

*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.*

Sending kids off with friends...

noreply@blogger.com (Tracy) — Fri, 19 Aug 2011 04:14:00 +0000

I was thinking today, as my Superhero is off spending the day with Kris and her Sugar Bugs, that sending a D kid off is SO much different than a non-D kiddo.

I know this is no shock to most of you, but let me explain what I am thinking.

If I were sending my non-D kid off with a friend, it would most likely be HER friend. A friend of HER choice.

On the other hand, with my D kid, I tend to choose MY friends for him to spend time with. These are not HIS choice, though he always has a blast with them. Sending him off with a friend of HIS choice would scare me to no end.

I am sure there there will be a day that he wants to choose who he hangs out with.

Until then, I am SO thankful to have some friends that he loves too.

*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.*