"What is that thing?"

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

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

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

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

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

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

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

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

She didn't really need to know details.

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

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

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

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

Sigh.

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

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

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

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

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

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

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

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

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

Maybe.



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

4 Years with D

I cannot believe it has been 4 years.

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

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


That is almost his whole life.


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


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

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

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


I was kind of surprised.


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


His perspective is what helps me get through.


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


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



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


*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...

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)...

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!

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...

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.*