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!



*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.*

3 years later...

3 years later...and we are still grieving. The stages of grief change over time and some days/weeks/months are harder than others. But we still grieve over our life with Diabetes.

3 years later...and we are still smiling. Sure we have our hard days, but we also have lots of good days and have learned to appreciate all the good things we have.

3 years later...and we are still learning. Sure, we have been managing this disease for 3 years now, but there is always something new to learn and something changing causing us to learn even more.

3 years later...and we are still grateful. So incredibly grateful that The Superhero is alive and well. Grateful for insulin. Grateful for the technology that allows us to manage this disease the best we can. And grateful for all the friends we have made along the way.

3 years later...and we are still sleep deprived. Diabetes has been known to cooperate and allow a night's sleep in 2-3 hour stretches. And also not cooperated and allowed a night's sleep in 1 hour or less stretches. We do whatever is necessary to keep him alive each and every night.

3 years later...and we are even closer as a family. I feel Rod and I know our kids and are much closer to them than we would be without Diabetes in our lives. We are also much closer to my parents than I ever thought we would need to be.

3 years later...and we are still scared. We try not to be scared all the time of course, but sometimes our emotions and the thoughts of "what if" get the better of us and we think about what could happen if we gave too much insulin, or not enough insulin, or what if he doesn't wake up this time. This is not all the time now, just sometimes these thoughts take over.

3 years later...and we are still hopeful. Hopeful that a CURE will come in The Superhero's life time. And until that cure, we will do everything possible to provide him the latest and greatest technology has to offer. We will continue fighting each and every day to keep him alive and healthy. And if the cure does not come in his lifetime, I only wish he can have the happiest and healthiest life possible!


And with that, I would like to wish my Superhero a Happy 3 Year Diaversary! I can't wait to celebrate your life being saved 3 years ago today!

Thank you to those of you we have known since the beginning and to those we have "met" along the way. I don't know where we would be without all of you!


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)


*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.*

Blog Post updates, 3rd Edition

Here are some updates on recent blog posts...

1) To bang, or not to bang...

Well, initially I had decided "not to bang" and to grow The Princesses bangs out. She had a different idea. I always put her hair up out of her face when she goes to daycare.

This last week she started pulling out her hair thing and the teachers could not find it. So that resulted in her having her hair look like CRAZY the rest of the day.

After picking her up Friday with CRAZY hair, I decided we just HAD to get the bangs cut. And I decided to get all of her hair cut so it would look more even and "finished". Enjoy the pics below from her cut experience and the resulting cuteness when we were done.



2) The Diabetes MeMe for kids

First, we know no one named Karen. So I am not sure how she is his best friend. That CRACKED ME UP.

Second, we don't eat cookies all the time. I don't even know where that one came from. This is a RARE thing in our house.

Third, I want to be 5 when I grow up too!



3) Update on the Ears for The Princess

Ears seem to be healing great. The GI doc happened to look in there while we visited her and she said they looked good. We go back the the ENT on the 1st of November for a check up. I will update after that appointment. Thank you all for the prayers for healthy ears.



4) 5 Years Ago/ Trip to Vegas

Thank you all for the well wishes on our 5 year anniversary. It is so surreal to know we have been married for 5 years. It seems like yesterday! We had an interesting time in Vegas. A post will be coming when I can find the time. We enjoyed casino hopping and playing the penny slots. I know, I know, we are BIG spenders. :-)



5) Endoscopy has been scheduled

And has now been re-scheduled, and MOVED UP. The Princess was/is getting more and more miserable since re-starting gluten just over 1 week ago. She has had to re-start her acid reflux meds and is NOT sleeping well, worse than before. I called on Thursday and BEGGED for them to move her up to a sooner date. I guess I sounded pathetic enough on the phone because the doc is getting her in THIS Tuesday the 19th.

She is scheduled for a 1pm endoscopy. I will arrive with her there around 11am. My parents will be out of town, so I am VERY THANKFUL for Wendy right now. She has offered to keep The Superhero for the day while I take care of The Princess and her biopsy. Rod could take off work, but since he is still in training at the new job, I did not want him to have to take time off for this.

So, we will have answers SOON. I will most likely just put The Princess back on the GF diet after her endoscopy while we wait for the results. I feel it really did help her feel better and I think we will end up there anyway. A friend of mine shared her friend's blog link, and through there I found a link with more info on EE.

EE is something the GI doc will be biopsying for through this Endoscopy. And The Princess has EVERY symptom on the list. So, even if celiac is negative (which was my first thought with all of this), I still feel there is SOMETHING going on with her and wheat. I have always noticed something and am really hoping for answers now.

I will update after Tuesday to let you all know how everything went. I am not sure how long before we get the official results, I am hoping to know before the weekend. We will see.



6) GIVEAWAY

Don't forget to enter my blog GIVEAWAY. I mean, really, who doesn't want to win FREE stuff!

What exactly is it that you do? (3 years ago TODAY)

I feel like someone from the movie Office Space! I get this question A LOT!
3 years ago TODAY I was hired for the BEST job I could have asked for! I remember thinking "You mean, I can work full time, AND stay home with The Superhero ?"

As you may, or may not know, I am a teacher. I taught 5th grade for 2 years, 7th/8th for part of 1 year and have been working for an online charter school for almost 3 years. After The Superhero was born I had the HARDEST time going back to work as a teacher in a 7th/8th grade math class. My students had destroyed my classroom and most of my belongings. I had a terrible substitute teacher. And it was just WAY too hard to be away from The Superhero.

I remembered an ad I had seen for Arizona Virtual Academy (AZVA) in a magazine I had gotten when The Superhero was born. AZVA is an online K-12 Charter school.

As soon as I knew I was not going to stay at my brick and mortar teaching job (less than 2 weeks after my maternity leave ended), I sent in my resume and other required paperwork and HOPED I would get a call. At the time, they were not hiring. I ended up accepting and starting to train for a Curriculum Specialist position at a local Tutor Time Childcare.

I got a call to do a phone interview for AZVA while I was in training at Tutor Time. I scheduled it and interviewed a few days later. I got the "you're hired" phone call the same day and quite Tutor Time immediately! I officially started with AZVA on March 14, 2007. And I can't say enough how much I LOVE my job!

Since I always get asked what exactly I "do" as a virtual teacher, I thought I would blog about it. :)

Here is a list of some of the things I do on a daily/weekly/monthly basis.

1) I am currently a homeroom teacher for grades 7 and 8.

2) I have approximately 65 students in my class. This fluctuates with enrollment and withdrawals.

3) I have a phone conference with most of my families at least once per month.

4) I teach a math class online once per week for 1 hour. This year I have a Math 5 class. I usually create a power point presentation to cover the required weekly state standards.

5) I read and respond to many emails and Kmails. (Kmail is our in house email system to communicate with parents and students)

6) I grade/ give feedback for monthly work samples. Students must send in one math and one writing sample per month. I read and send formal (email) feedback on each one, each month.

7) I add events to the school calendar for any event taking place that affects the whole school, just K8, or just High School.

8) I attend a couple of events in my area, such as park days or hot cocoa nights.

9) I monitor each student's progress and attendance as needed. I try to do this AT LEAST weekly for each student, some students require more monitoring that others.

10) I attend a weekly staff call. These can be 1 hour or more. We have professional development online a couple of times per month, and those are usually 3 hours or so.

11) I write progress action plans and monitor them for struggling students/families. I currently have about 20 students on action plans. I monitor their progress at least twice per week and send them an email updating them on their progress.

12) I administer the state testing (AIMS) once per year. This is a 1-2 week task that keeps me out of the home from about 7am-5pm. This is usually done at a local hotel or church. We have testing location all over the state and I am lucky enough to get assigned close to home so I don't have to be too far away from the kids (ie:The Superhero) in case I am needed for an emergency.

13) I participate in IEP and 504 meetings for my students. I have many special education students in my class and have to participate on their calls when they come up. I would say this is about 2-3 per month.

14) I attend a few in person meetings per school year. The number of meetings can vary. This was cut back this year due to budget reasons. We still have some in person meetings, but not monthly as in years past.

15) I mentor a couple newer teachers from AZVA as well as other schools within K12. (K12 is the parent company)

16) I return phone calls of parents who call and leave me messages.

17) I work over the summer. We get 4 weeks of vacation and will be working the rest of it to prepare for next school year. I honestly don't mind working through the summer. I still get some time off and I get to work from home. (I LOVE working from home!)

18) I set my own schedule. Sure, I might work nights and weekends sometimes. BUT I can schedule doctor appointments when I need to. I can take the kids in when they are sick without having to take off work (at least not all the time). As long as I get my work done and put in enough hours for the week, I can do these things when I need to. This flexibility makes working nights and weekends (occasionally) worth it!

Well, as I am typing this out, it does not seem like a lot. All of those 16 things above, plus whatever I am leaving out, keep me VERY busy. I am sure I put in 40 or more hours each week. Some weeks require a little more, while some might be a little less.

All of this PLUS having 2 kids home with me and a house to take care of.

And as another job (I say it is like a second job, I get paid separately to do this) I also do the marketing for the area of town I live in. Lately this has me doing up to 10 marketing sessions per month. I set them up in the evenings and a few on the weekends. They are 1 hour sessions where I am scheduled to meet with families looking to join our school at local coffee shops, Starbucks, Paradise Bakeries, etc.

So, there you have it. It is hard to say what a "typical" day might look like because every day is so different from the one before or from what the next one will be.

I will say though that I LOVE my job.

I LOVE getting to be home with my kids.

I LOVE working with the families while they are educating their kids.

I LOVE telling people about my job.

I am VERY fortunate to have received the magazine with the ad about AZVA and am even more fortunate to have been hired 3 years ago.

I am truly BLESSED!

Found the Pictures to go with my post from yesterday

(WARNING: Graphic Pictures below)

If you read this post yesterday, I wanted to share the pictures my dad found. The quality is not great, but they are as good as they are going to get right now.

They are VERY graphic pictures, please do not view if you do not wish to be a little grossed out! Or, have fun viewing if you like that sort of thing!

You may notice car seats in the back seat. I used to babysit A LOT and had my own set of car seats. Thank God no kids were with me at this time!

And you can tell in the last picture, I must have been in a lot of pain!

10 Years Ago Today

It was a Friday. I was just 18 years old. I was working at a local child care center in the 1 year old room part time while going to college. A lot of the kids went home early, as they did on a lot of Friday's and I was able to leave early while another teacher stayed behind with the rest of our kids.

I remember having to go to the bathroom, but I had decided to wait until I got home. It was only a 10 minute drive. It was Friday and I was actually getting to leave early! So I left and was on my way home. I was driving at the speed limit, or even slightly below the speed limit. I remember looking to ahead a bit to my right and seeing a car starting to come out from a side street and thinking "Oh my God, she is going to hit me!" There was NOTHING I could do. I tried to speed up a little to get past her before she actually hit my car, but I was not able to.

At the time I was driving a 93 (or 94) Chevy S-10 Blazer (small SUV). She hit the passenger rear side of the car in just the right (or wrong) spot. I don't remember much other than a lot of spinning, going upside down, and thinking "just stop!". My SUV FINALLY came to a stop (upside down) and I remember thinking "I have to get out of here!". I was hanging upside down strapped into the car with my seat belt. I vaguely remember seeing/hearing witnesses running up to me/my car to see if I was ok.

I undid my seat belt at that moment and the next thing I remember was being in the ambulance on the way to John C. Lincoln (not the closest hospital) because they needed a Trauma 1 Unit. I remember them asking me a lot of questions. I vaguely remember answering them. I vaguely remember having my clothes cut off of me.

The next thing I remember is being at the hospital. I don't remember arriving at the hospital, just that I was there all of a sudden. I remember them asking me who to call. I gave them what I remembered to be my dad's cell phone number. Then I kept wondering if it was even the right number. I think I lost consciousness a few more times because I remember being in the cat scan room but I don't remember going in there. I don't remember coming out of there.

I remember them telling me that my parents were on their way. I got some x-rays done on my arm and hand. I had a HUGE gash on my right wrist and some scrapes on my left hand. I think I had some scrapes on my face as well. When my family finally got there (which seemed like an eternity for me!) I was getting the x-rays done, so they were not allowed in right away.

After a little bit of time at the ER, I was released and allowed to go home. I wore paper scrubs since my clothes were cut off of me. I FINALLY got to use the potty, I still remember having to go REALLY bad. (funny the things you remember).

In the weeks following the accident, I had a skin graft on my right arm to cover/repair the major gash. The tissue inside my arm died off and there was just a gaping hole in my right arm. Other than that and some minor scarring on my left hand, I came out pretty good! Thank God it was not worse than it was. And thank God I was wearing my seat belt!

I can't believe it has been ten years! I have pictures somewhere of the car and of my arm, I could not find them when I wrote this post, but my dad did find some later that night. I posted them here.

(and I am sure my mom can comment on her reaction when they SAW my car, upside down, as they were on the way to the hospital, and they had no idea what condition I was in at the time!)

Celebrating One Year

The day started as any normal weekday. I took my shower, checked my email/facebook/etc, waited for my kids to wake up. The Superhero came out of his room as he normally does, ran over to me for me to hold him, and then laid there on me for a quick snuggle before running off to watch cartoons. Only today I think I just wanted to hold on to him a little longer. Snuggling with him reminded me of where we were just one year earlier. July 10, 2008 was the day my baby was diagnosed with Type One Diabetes.

I spent a lot of time thinking about how I wanted to handle this first anniversary. After much thinking and encouragement from other parents of children with diabetes we decided to celebrate his life by doing something special. We spent the morning as we normally do, well sort of. I cut his hair, he needed the trim. :) He had a shower, he thought that was pretty cool since he usually had baths. We ate the normal lunch, PB&J, mandarin oranges, and milk. He took his nap.

Then after his nap, I had his daddy take the afternoon off of work. We had decided to take him to see his first BIG movie in the theater. We wanted to see the movie “Up”. We got all ready.

The Princess' bottle…check,

The Princess' baby food for dinner…check,

The Princess' diapers, etc for the bag…check,

The Superhero's snacks…check, Superhero diapers…check,

The Superhero's juice, just in case…check,

The Superhero's diabetes supplies…check.

Ok, off we go.

We dropped The Princess off with my parents. I did not figure she would do well with the movie. Then we headed off to see “Up”. We got our tickets (and we excited that The Superhero was still free :) ). We bought The Superhero the kids pack with popcorn, fruit snacks, and a diet coke, all a treat for him. We found our seats. Checked his finger. Let him enjoy his popcorn and diet coke. Then the movie began. He sat still for a while, well, until his diet coke ran out. Then he wanted to sit in my lap, then in his seat, then in my lap, then in his seat, then in my lap, then he just wanted to stand. Luckily we had the first row at the theater so no one was in front of us. He ended up standing/squirming for the rest of the movie and made it all the way to the end before getting noisy.

After the movie we took him out to dinner at Red Robin. I let him pick what he wanted to eat off of the picture menu. He chose a corn dog and mandarin oranges. (What is it with this kid and his oranges?). He was checked again, and had a higher BG than we expected. Bolus. Milk arrives and cheese sticks. We let him try them, which of course he has to dip in sauce like Daddy. He proceeds to eat very little of his food by the time it came since he had snacked so much at the movies.

When we came home we fought mildly low blood sugar (at least too low to go to bed with insulin on board). We finally got him up to 137 around 9pm, after he was asleep.

All in all, it was a great day. He was actually well behaved and did not go in time out at all. He enjoyed getting to see a BIG movie. He enjoyed his dinner, at least what he ate of it. The thing I enjoyed most was getting to spend time with just The Superhero (and Rod) on the anniversary of the day his life was saved. I am not sure if we will include The Princess next year or not, we will have to play it by ear, but I enjoyed having just one kid for a short time.

And The Princess REALLY enjoyed her time with her NaNa and Pompa. I was told that Pompa could not get any work done with all the giggles and cuteness going on down stairs. I am glad she enjoyed her time too.

It has been one crazy and long year. Now hoping for many more, happy, healthy years with my little boy!

Getting BG checked at movies, 89, eat popcorn "free" and recheck soon.

Enjoying his popcorn and diet coke before the movie started.