My life with The Superhero and The Princess: April 2011

Thursday, April 28, 2011

Another Princess update

We went in and completed the IVIG treatment yesterday. The Princess did great. They took 2 tries to get the IV in and she was good to go. They gave her benedryl to make her drowsy while we sat there for the 3 hour treatment. She slept through about 2 1/2 hours of it. She was feeling great afterward and we were sent home by 2pm.

Then we hoped and prayed for NO side effects. IE: headache, nausea, vomiting, fever.

We were in the clear...until 4:30am. The Princess woke up and threw up all over my bed. Then an hour later, she threw up again. And again. We cleaned her up and I called the hematologist on call. He said to try to give her tylenol and benedryl (pain and to help her sleep?). She proceded to throw those up after about 10 minutes.

It was then that we made the decision to take her in to the clinic. It was about 6am at this point and the clinic doesn't open until 8am. I knew with traffic it would take about 1 hour to get there, so we packed up and left around 7. Right after she and I left, she threw up in the car.

Then as soon as I pulled in the parking lot, she did it again.

Once we went inside they took us back and spent about 45 minutes, and 2 tries, to get another IV started. Due to the low platelets, and all the pokes this week, the "real estate" on her arms was left to slim pickings. Fortunately, she was feeling SO yucky that she didn't fight too bad. She sat on my lap and watched Dora on the Child Life Specialist's Ipad (BEST IDEA EVER!)

Before hooking her up to the IV, they took some blood to check her platelets. They were UP to 54,000! Only 2000 on Tuesday, this was the BEST news all day! The IVIG appeared to work well for her. We were just unfortunate enough to have most of the side effects that were a possibility.

Once we were taken back to the infusion area, they hooked her up to some saline. She was getting VERY dehydrated. They also gave her Zofran for the nausea and Morphine for the head pain. Apparently the headache is THAT bad. The headache was contributing to her vomiting. Then she started BURNING UP. She had a mild fever at home, but this spiked up to 104 degrees. They gave her tylenol. It wasn't budging. Then they gave her some Motrin.

Finally, after about an hour, she started sweating. She was getting re-hydrated. And the fever was finally breaking!

Then a few minutes later, like night and day, she perked up. She wanted to watch a movie. She wanted a snack. She even used the potty! She had stopped peeing since yesterday, due to dehydration.

They wrote us prescriptions for anti-nausea meds and pain meds. We also have to keep up with the fever using motrin/tylenol. And we were on our way!

These side effects should last about 48 hours. Then we can hopefully go back to "normal". At least until we see her platelets go back down in a few weeks.

I am hoping and praying that this might be the only treatment she needs. If not, we will have to make a decision if we want to do IVIG again, or try another type of treatment.

I can't wait for her little body to heal from all the nasty bruises!

We were home now and she is not feeling great. She is keeping food down and is drinking. She is complaining that her head hurts. I have given her the pain meds and will give her motrin and zofran soon.

Please keep praying for her. I want my girl back!

She fell asleep before they came in to do the IV today. Not looking good. :-(

After the fever came down and she was feeling better. Watching The Little Mermaid. :-)

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

Tuesday, April 26, 2011

Quick update on The Princess

We met with the hematologist today and her platelets were down to 2000 when they ran her blood work today.

We are choosing to treat her with the IVIG infusion. We are scheduled to go in tomorrow at 9am and will be there all day. This treatment will hopefully last 2-4 weeks. It has an 80% success rate of helping raise the platelet count. After it "wears" off, we can choose to wait, or to do another treatment.

There are some side effects that could happen as well. You can read more about the infusion HERE

I will update as I can tomorrow. I am completely wiped out and emotionally drained. Please pray that this treatments helps raise her platelets to a safer level and that she does not have any side effects.

Monday, April 25, 2011

Blood work update...

Just got the call...ITP it is. She will consult with a hematologist tomorrow to make sure we do the right steroid dose. We will start steroids tomorrow and she will be on them for 2-6 weeks (roughly).

And she said to be very careful with her activity for the next several days since her platelet count is SO low (6000).

I will know more tomorrow after she talks to the specialist.

Waiting is HARD to do...

First I would like to say, Hello blogging friends. Sorry I have been MIA. Things have been CRAZY around here, several posts for another time.

As I sit here in tears, I felt the need to get this out, and ask you all for thoughts and prayers.

Over the weekend I noticed bruises on The Princess. She has kind of always (since she could walk) had them on her shins/knees. She is clumsy and it was just "her". These bruises this time seem different. They are ALL over her legs, front and back, including her thighs. All over her arms. And all over her back. I had this gut feeling all weekend telling me to take her to the pediatrician.

This morning I called and made the appointment for the afternoon. I fed the kids lunch a little early and put them down for naps. The Princess was supposed to be in her room napping, only a while after I tucked her in she was crying, a lot. I went to check on her and her face was all bruised up. She said she hurt herself on a book. Sigh.

After seeing her face I am thankful I had already made the appointment to take her in to the pediatrician. I got the kids up and dressed and we headed to the doc. Once the doctor came in, she looked at the bruises and told me it looked like ITP (I had no idea what that was). The only thing I asked is how it would be treated, she said with steroids. She also said they also look for leukemia, though she said The Princess didn't look sick enough for that to be it (PRAYING she is right).

She ordered blood work and sent us on our way. She told us she would hear back today/tonight and she would give me a call.

I then dragged two tired, cranky, misbehaving children to the lab. They would NOT sit still and I was losing my patience fast. After several minutes we were called back. The Superhero cried for The Princess, who cried too. He was so concerned that they were hurting her. She was crying for me to "stop them!" Seriously, not fun.

Now we wait. I keep looking at my Princess and just want to cry when I see her little bruised body.

Her legs.

Her arm...(and YES, that blue spot is a NEW bruise)

And her bruised face.

Please PRAY we find answers and she can be treated and outgrow/get over this! I will update when I know more.

Saturday, April 9, 2011

HAWMC Day 9 - I still cry

Today's Topic: Health Activist Choice. Today’s blog post can be about anything you like. Free write! Whether you want to take inspiration from one of your community members or HAWMCers or just recap your April so far – anything and everything is fair game today. Length, topic, style – all up to you!

Last week Laura posted about why she still cries. And today I was recording a video about The Superhero's diagnosis and started thinking about this myself.

I still cry.

It has been almost 3 years (7/10/08:D day) and I still cry.

Every time I think about that aweful week leading up to his diagnosis, I cry.

Every time I think about my baby being poked SO many times to get his THREE IV's in while in the PICU, I cry.

Every time I think about his tiny fingers being poked every hour in the PICU, I cry.

Every time I think about him laying there in his hospital crib, I cry.

Every time I think about the first shot I had to give my 18 month old, I cry.

Every time I think about the first low we dealt with, I cry.

Every time I think about waking up my sleeping toddler to give him a juice, I cry.

Every time I think about chasing after my toddler to give him a shot, I cry.

Every time I think about changing pump sites as my son cries "No, mommy, no!", I cry.

Every time I think about changing CGM sites as The Superhero cries "NO! That hurts!", I cry.

I HATE having to hurt my son on a daily basis. So I cry.

Don't get me wrong, I am not sitting around crying all the time. Sometimes these cries are more silent than others. But, Diabetes HURTS and I think it is OK to cry over something that has taken over our lives and changed it from the course we were heading down.

The thing that gets me through the tears is seeing his smiling face. He is still a happy little boy, despite all the pain and pokes.

Friday, April 8, 2011

Children's Museum of Phoenix- The Response

Last weekend I posted a letter I wrote to the Children's Museum of Phoenix after an incident that had occurred while I was there with The Superhero and The Princess.

I did actually send the letter via email to the President/CEO of the company. And before I even came home from the museum, my husband had already posted on their Facebook page, posted on Twitter, and left voice-mail for a few people at the museum.

The Director of Education tried to get a hold of rod a couple of times this week, but he was really busy and did not get back to her. So on Thursday (yesterday) when I had not received a response from my email, I called and left a message for the CEO myself. She called me back a while later and was very nice on the phone. She assured me they were taking this seriously and wanted to make sure they learned from this experience. She stated that there were a few staff members with Diabetes and they would make sure they learned.

I explained to her that I do not expect them to all know everything about the disease, but more about customer service. I told her I would have appreciated hearing "Oh, I am sorry to hear that, can I help you with anything?" Or "Thanks for clarifying, please make sure you throw away your trash."

She agreed and let me know that the gentleman who spoke to me did ask her what he could have done differently.

She also mentioned that when the docent came over he thought it was odd because I had said my son had Diabetes and yet my daughter was sitting there holding her snack too. I explained to her that yes, my son does have Diabetes and he was the one who was low. But, also that when he goes low, The Princess thinks she needs something too. And rather than dealing with a low and a temper tantrum I chose to pick my battles and give her the same snack and juice I was giving to The Superhero. She agreed that this made sense. :-)

Anyway, it went well and I truly believe they will make an effort to learn from this.

Then, later last night I received an email from the Director of Education for the museum. I will paste it exactly as was sent to me below.

Dear Ms. Ripley,

Please know that many of the managers, directors, and CEO have investigated your unfortunate situation, and know that we always follow up on any visitor concerns. This is an unfortunate situation and will be rectified. I would also like to talk to you as some point as well to hear your input and suggestions. Please know we are a new institution, who values all visitors and staff with all abilities. In addition, I oversee the floor staff, interns, and volunteers. Please know I am highly sensitive especially to the issue at hand. There is no excuse in regards to the lack of understanding and unfortunate insensitivity you and your children experienced. Please know that I called your husband twice, leaving my email address as well for follow up.

Please know on our end we have morning huddled every day, provide information internally to all staff with our eblast, and have had many trainings throughout the year. I will provide a general FAQ sheet for our staff regarding juvenile diabetes from the ADA and any other suggestions would be much appreciated.

On a personally note, I have been a diabetic, and unfortunately inherit the from my father, and my paternal grandfather. I also have other varied abilities, so it is crucial that our staff is educated in unstinting ones essential needs, such as your sons. I do have a very large department who are here on various days. Please know a memo will also go out to staff in understanding and sensitivity to children and adults with varied needs and abilities.

Once again, I am apologetic this occurred and know that we are listening.

Best-

Rosina Guardino, M.Ed.

Education Director

And with that, I will plan to visit the museum again soon, and I will do my best to avoid the lows.

HAWMC Day 8 - A Poem of Questions

Today's topic: Write a poem where every line is a health question. Today’s prompt is to write a 5-10 poem where every line is a question. The questions could be ones you have, ones you’ve heard, or ones that are rhetorical. You can make it a Found Poem and use questions you’ve been asked before. Or you can make up new ones.

As I stated before, I am NOT an English teacher. Poetry is NOT my strong suit. But, here goes anyway...

Diabetes

What did you do to cause your son to have this disease?
How to you manage to live a life with Diabetes with such ease?

Is it hard to keep track of everything The Superhero chooses to eat?
Why do you always look so beat?
Do you ever admit defeat?

How does Diabetes affect your day to day lives?
When The Superhero has a low at night, how do you get him to rise?

Are there days when you still feel blue?
Did you know you could have to deal with Diabetes someday too?

Thursday, April 7, 2011

HAWMC Day 7 - A voicemail to Diabetes

Today's topic: Leave your health a text or voicemail. Time to check in with your health! You call, ready to talk, but it turns out that your health isn’t exactly responsive and is probably screening your call. No matter – leave your health a voicemail. What does your health’s voicemail message sound like? And what are you going to tell your health today?

"Hello Diabetes, This is Tracy Ripley, mom and pseudo-pancreas to The Superhero. I was hoping to reach you today to thank you. I know, I know, this is not the kind of call you usually receive. As much as I despise you, I also am grateful for you in some ways. I feel I am more in tune with my kids as their mommy than I would be without you in our lives. You have helped connect me to the most wonderful support network of other people who live with you day in and day out. I consider all of these people my family. Without you, it is likely I would never have come into contact with any of them. So, Diabetes, Thanks again for being in our lives. Sorry I missed you this time around, maybe next time I call you won't be so hesitant to answer the phone. Although, next time, I might not be so happy with you."

Wednesday, April 6, 2011

HAWMC Day 6 - Why do I blog?

Today's Topic:
I write about [my] health because….
Internet and social-media-skeptics always ask me the judgmental “why.” “But why would I blog?” “Why would I have a Twitter?” But what they are really asking is – ‘what’s the point of all of it?’ Well, friends, is there one? Why do we do what we do?

I have thought about this one A LOT. I have had a post started on this topic for a LONG time. I started a post about this a long time ago and just couldn't get out the right words. Since this IS the topic for today, I will do my best to get this out coherently.

Why do I blog...
1) To educate. Simple. I feel it is VERY important to do my part to educate others about Diabetes to raise awareness. I am tired of misconceptions and misunderstanding and feel I need to do what I can to spread information about this disease.

2) To feel connected. As a mommy of small kids, who works from home, and rarely sees other adults, I blog to feel connected to other people. Not just any other people, but people living parallel lives to my own. Sure, they may not all work from home. They may not all have 2 kids. They may have some differences from my house. But, the people I enjoy connecting with have Diabetes in their lives too. They get it. They understand what we go through day in and day out and it means the world to me to connect with every single one of them.

3) To learn. I enjoy learning not only through writing my posts, but also through reading other blogger's posts. There is always something new to learn.

4) For myself. Blogging is a way for me to get my thoughts, feelings, and full emotions out. And getting comments on each post makes me feel less alone. So, yep, I am a little selfish. I do it because of ME.

And those are the main reasons I blog. How about you?

Tuesday, April 5, 2011

HAWMC Day 5 - Life for a Child Campaign

Today's topic: Health Haiku. A haiku is a “miniature Japanese poem consisting of 17 syllables – five syllables in first line, seven in second, and five in the last. No rhyme or meter scheme is employed when writing haiku. The aim of the haiku is to create something greater than the sum of the parts.”

I would like to remind my readers that I am a math teacher, NOT an English teacher. Anyway, here goes...

No child should die due

to lack of insulin. Have

you saved a life yet?

I wrote this haiku in honor of the Life for a Child Campaign.

My friend, Wendy, over at Candy Hearts Blog has been putting together a much needed campaign to raise money to provide insulin to children in need around the world. I am hoping to do some things in the coming weeks, months, and even years to continue raising awareness and money for the Life for a Child Campaign. Because NO child should die due to lack of insulin.

It is estimated that there are 100,000 children with diabetes around the world who are in need of assistance to access insulin.

Without insulin, these children will die within 1 week.

Over the past several weeks I have been feeling drawn to this cause. I feel I am being led to help Wendy raise money to help these children.

Here is how Wendy says YOU can help...

1) Support these vendors! Think of them when you're making an online purchase, whether it's for yourself or a gift for someone else. Remember, your support will save a child's life!

2) Spread the word! PLEASE share via Facebook, Twitter, Blogs, chat forums, emails, and any other venue you can think of. Feel free to grab the button as a tool to help with that!

3) Please pray that this effort will, somehow, reach each and every child in need. I realize that sounds like an impossible task, but I believe in a big God who can do amazing things.

4) If you are an artisan who would like to participate, feel free to create your blue circle merchandise and contact Wendy today. There's always room for more love in her Candy Heart! (candyheartsblog@gmail.com)

5) In addition to making an investment in the Candy Hearts Collection, you can also make a direct donation. Donations are accepted on behalf of Life For A Child through HOPE Worldwide. (For more information about this partnership, click HERE.) The donation button below will link you to a page where you can make the contribution amount of your choosing in support of Life For A Child . All contributions are U.S. tax deductible. For information about tax deductibility in other countries, click HERE.

So, have you saved the life of a child today?

Monday, April 4, 2011

Just one more thing...

Sometimes I wonder how many "just one more" things I can handle.

We already deal with Diabetes. The finger pokes, carb counting, insulin providing, sleepless nights, etc that Diabetes entails with The Superhero.

We also already deal with Asthma. The inhalers, maintenance meds, more sleepless nights and breathing issues.

And now, just one more thing...

I took The Princess to see a pulmonologist in March. We were told in January about The Princess' asthma from her pediatrician and she was put on meds through the nebulizer. The round the clock treatments for weeks were getting to me, so I decided to see a specialist.

At our appointment The Princess was put on 2 different inhalers. Along with that, a swallow study was ordered, since The Princess coughs A LOT and often ends up gagging/choking when drinking liquids or eating her food. This test would help us see where the liquid was going when The Princess was drinking. A routine type of test. It would be weeks before this testing could be done. And we would just proceed treating the asthma at this time.

This new regime seemed to be working for about a week. Then The Princess started coughing a lot more. We went back to the specialist and added another inhaler and Singulair. Since these new changes she has gotten MUCH better. Now we are only doing the maintenance inhaler and the Singulair. A TON BETTER.

And then today we finally had the swallow test. I went in thinking it was no big deal and she would do great. She had no problems swallowing, right?

Boy was I wrong! She drank drink after drink of barium (she called it ice cream). And apparently when she is swallowing liquids some of the liquid goes toward her air ways before entering her tummy. The muscles that make the liquid go to the tummy aren't strong enough to do their job. This could be the cause of her coughing. This could be the cause for a lot of things that The Princess has had going on for a long time. And if we did nothing she could develop pneumonia more often and possibly cause long term damage to her airways/lungs.

So, what do we do to treat it? Thicken ALL liquid intake. She can no longer just drink water. She must have thickened water. She can no longer just drink milk. She must drink thickened milk She can no longer just eat a popsicle. We would have to make our own thickened popsicles. No more juicy fruits, suckers, ice cream, etc. We now have to add a thickening gel or baby cereal to her liquids.

Can you say thirst quenching? Yuck! Fortunately, she was still drinking the "water" ok. And I bought her some chocolate powder to make a thick chocolate milk for her. Or thick Apple juice.

I feel like I went in thinking it would be nothing and came out of a whirlwind with yet ANOTHER diagnosis and maintenance plan. And the whole way home all I could do was think "I can't wait to get home and google this to see what else I should know!" (thinking of Joanne the whole time!)

This is something she could potentially outgrow. We will re-test in 3-5 months to see if there is any improvement.

Just one more thing. Right? :-(

HAWMC Day 4

Today's topic: Ludicrous headline or cure.

I was once told by a parent of one of my students that ALL I needed to do was feed my son cinnamon toast for breakfast every day. Then he could go off insulin and have stable blood sugars all the time

Now, for my readers, I feel I MUST post that there is NO cure for T1 Diabetes. If there WAS a cure, our kids would NOT need to be poked with needles day in and day out.

Sunday, April 3, 2011

HAWMC Day 3

Today’s prompt is simple: write a health question and answer it. Your question can be a real, genuine one about your condition or you can make it a strange, humorous, or satirical health question. Once you’ve asked the question – answer it however you want to.

My Question: What caused your 4 year old to get Diabetes? He MUST have eaten A LOT of sugar! That is why I am not feeding ANY sugar to MY kid.

Funny/Sarcastic Answer: Yep, he definitely got it because I fed him A TON of sugar. He had cereal covered in sugar every morning, candy for snacks, ice cream for lunch, more candy for snacks, and pasta covered in syrup for dinner. Every day. That is exactly why he was diagnosed at the age of 18 months. I also made sure to only let him drink sugared soda and juice each day. It all caught up to him and he was just bound to get it. Oh, and I bottle fed him as a baby. He was born on a Thursday, that contributed to the diagnosis as well. I had an epidural and he was circumcised. as a baby. So, as long as you don't do ANY of those things, you have nothing to worry about!

REAL Answer: T1 Diabetes is an Autoimmune disease and there are currently NO known causes. It has been said that some people are born with the antibodies for the disease and then there is an environmental trigger that makes the body stop producing insulin. This trigger can be different for every person with T1 Diabetes and it can be triggered at any age. T1 Diabetes is NOT caused from eating too much sugar.

March 2011 Blogger Basal - - - Lessons Learned

I was honestly hoping to do something a little more fun with the Blogger Basal for March, but the truth is March was a SUPER busy month for me and I just did not have as much time as I would have liked to put this together.

So instead I have focused on what we have all learned. That's the teacher in me. We are all learning all the time. So, now we can learn some lessons from each other. (lessons learned as I perceive them from reading through the posts myself)

And a side note before I begin, going with the "Lessons Learned" theme, I had Carrie Underwood's song in my head the WHOLE time. Enjoy this too. Listen to the words. They work well for this post.

In no particular order, here are the posts for the Blogger Basal for the month of March 2011. Enjoy!

Bridget learned to follow her gut and test her T1 child at an unusual test time in the middle of the night and it was a good thing she did!

Michelle learned about the incredible bond between her two daughters, one with type one diabetes and one who pretended she did for a day. Amazing story of two beautiful little girls.

Donna learned why she grieves over Diabetes. Even after 2 years managing the disease, the grief still hits sometimes.

Nicole learned that Type 1 diabetes is like a great big unanswered question and just when you think you have it all figured out the damn equation is changed!

Reyna has helped us learn that it will all be ok. We do what we do because we have to. And we do it out of the love for our children.

Misty learned how important an AMAZING school nurse can be and she takes the time to share about her awesome school nurse.

Wendy learned what a BIG CANDY HEART one little boy has! We all love you, Rasmus!

Heidi helped us learn about what her family did to celebrate the life of her T1 child, including several guest blog posts and a big party at the end! I totally want to steal the party idea!

Denise learned how much fun art + Diabetes meet ups can be!

Amy learned that diabetes does NOT define her son, it is NOT who he is, it is NOT EVEN NEAR what he is all about. She was reminded; he is a crazy-happy-full-of-energy-six-year-old boy who has diabetes, NOT a T1er trying to be a little boy!

Roselady learned to take a lesson from her T1 son! Cutting back on sweets is not so easy, until you see your small child doing it day in and day out. Hard lesson to learn.

Hallie helped all of us learn the importance of being honest with our non-D friends because in reality, it is not them, it is us. What a great letter written to our friends not dealing with Diabetes daily.

Meri learned that her boys are just awesome. And I have to agree, they truly are awesome.

Laura learned that 1 year can go by SO fast. Super Nate has now been Podding for 1 year and Laura would never look back!

Kris learned that her T1 Child thinks about and worries about Diabetes too. It is a hard thing to realize that our kids are growing up and our worry will become their worry too.

Ashley learned that diabetes has a way of making every day moments get tense really quickly. And it’s the possibility of the things that are not thought about that can scare the life out of us!

Lora learned that having ~~dreams~~ nightmares about Diabetes sucks. Why can’t we just dream about Unicorns and Rainbows?

Jen is learning find a way out of getting so worked up in the middle of the chaos. Hoping someday to be able to embrace it and not let it get in the way so much. A hard lesson for sure.

Heidi learned to find the sense of humor in her boys’ antics. And I have to say I had a good laugh too.

Holly learned to find some Happy amongst the reality. Beautiful picture of your T1 kiddo.

Heather learned that actions speak louder than words. She posts a nice thank you to her non-D friends.

Shamae helps us learn the importance of being prepared for emergencies when type one diabetes is in our life. A very informative post for all to read.

Hailey learned a lot at the JDRF Government Day in Washington D.C. and enjoyed meeting some fellow bloggers from the DOC.

I learned that not all days go as planned and sometimes you have to just go with the flow.

And THAT, my friends, is the March Blogger Basal.

Please send your April posts to at Kris from My Sugar Bugs at mysugarbugs@gmail.com.

Saturday, April 2, 2011

HAWMC Day 2

Today's prompt: Word of the Day Post! Go to dictionary.com and write a post inspired by their WOTD – or grab a dictionary (or any book) from your book shelf, open to a page and write about that word. Can you link the word to your condition somehow?

Dictionary.com WOTD is...

unctuous

\ UNGK-choo-us \ , adjective;

1.Of the nature or quality of an unguent or ointment; fatty; oily; greasy.

2.Having a smooth, greasy feel, as certain minerals.

3.Insincerely or excessively suave or ingratiating in manner or speech; marked by a false or smug earnestness or agreeableness.

I am choosing to use definition number one. Thinking fatty, oily, greasy. I can definitely apply this to Type One Diabetes.

People with Type One Diabetes (or any people, Diabetic or not, really) should consume a limited amount of unctuous foods. Foods containing fat and oil tend to slow down the absorption of the food eaten and in turn cause the blood sugar to rise slower and then spike hours after consumption.

Examples of foods that can cause this blood sugar spike are PIZZA and ICE CREAM. Those are two foods where WE see a problem with blood sugar.

Unctuous.

Dear Children's Museum of Phoenix,

Dear Children’s Museum of Phoenix,

I would like to take a minute to share my experiences with your museum. A couple of months ago I took my 2 and 4 year old to your museum for the first time. The three of us had such a great time, so when we went back with friends a few weeks later we chose to buy an annual membership. I knew this was a place I could bring the kids, out of the heat, to have a great time year round. Our first two experiences were amazing. The kids had a blast and loved every minute of our time there.

When this weekend was approaching and I was figuring out what I wanted to do with the kids, the children’s museum was the first place that came to mind. I wish I could say our experience today was as good as the last two times. Unfortunately, it was a terrible experience. You see, my 4-year-old son has Type One Diabetes. This means his body does not make insulin on its own and I must balance his food, insulin, activity levels, etc to make sure his blood sugar stays as stable as possible. This requires a lot of hard work on my part. And even with all the work I put into managing this disease we still have times when his blood sugar goes too high or too low.

Today at the museum, my son ended up having a low blood sugar. Low blood sugar can cause a person with Diabetes to pass out, have a seizure, or even cause death. It is important for the person to be treated immediately. This is what I did when in the museum today. I was sitting on the third floor with both of my children. My son told me he felt really low, really really low. So I checked his blood sugar and he was right. He was very low at that moment. I sat on the couch with him and gave him some fruit snacks and applesauce to eat. While I was waiting for his blood sugar to come back up to a normal range a docent came over to me and told me that we were not allowed to have food in the museum unless we were in the 2^nd floor café. I explained to him how I understood but that my son had Diabetes and a low blood sugar, which needed to be taken care of immediately. He told me I should have taken my son down to the 2^nd floor to treat the low and give him the snack. I then explained how my son could have passed out on the way if I had done that with him. I was then told something to the effect of “Well, you should plan that out better…” As if the low blood sugar was something I had planned. I have to say I am very disappointed and upset about this situation. I feel as though we were singled out because another parent complained. I feel as though after I cleaned up our garbage we were being watched by the museum staff and were unable to really enjoy the rest of our time there. I ended up taking the kids home earlier than I had planned because I was so upset.

At this time I am unsure if I even want to return to the museum with my children. I truly think the experiences provided are great for my small children to grow and learn, but I do not want to feel discriminated against if I need to treat my son with some fruit snacks or a juice. I feel your museum staff should be educated about disabilities, which may affect your patrons. Some disabilities, such as Diabetes, are invisible, but are certainly life threatening and need to be attended to constantly.

Please let me know what action you plan to take to ensure this situation is not repeated when we, or another family with a type one diabetic child visits your museum.

Sincerely,

Tracy Ripley

Member of The Children’s Museum of Phoenix

ETA: I did actually send this in an email to the CEO. I posted about the response HERE.

Friday, April 1, 2011

HAWMC? and an Acrostic poem by Yours Truly...

Ok, ok, another acronym of daily blog posts for a month. And yep, I have signed up. I figure, it will coincide with the April NaBloPoMo that I already signed up for.

So what is HAWMC? Apparently, April is Health Activist Writer's Month. Since I am an activist for T1 Diabetes, I decided to take on this challenge.

Today's topic is to write an Acrostic poem for the health condition that affects my life, or to use the word HEALTH. I have decided to create a poem for TYPE ONE DIABETES. So, here goes...

Too many people are being diagnosed with T1 Diabetes. 40 new people get that dx every.single.day.Too many people.
Yo yo. Sometimes The Superhero's blood sugar has a yo yo effect. Up and down. Up and down.Yo yo.
Painful.Tears are involved. This disease is painful. All the poking. All the highs. All the lows. Painful.
Exhausting. Sleep? What's that? We are up checking BG at all hours of the day and night. And it is exhausting for the T1 person himself too. He has to deal with the poking, highs, and lows. Exhausting.

Obscure. Diabetes is hard to perceive. Not clear. Vague. Uncertain. (definition found here). Obscure.
Needles. Lots of needles. Lancets to poke tiny fingers. Shots to administer insulin. Needles to insert pump sites. Needles to insert CGM sites.
Easy? No way! Diabetes is in NO way easy. It is a 24/7 disease that we do our best to manage day in and day out. Easy? No way!

Diabetes. T1 Diabetes is an Autoimmune disease with no known cause. It was not caused from eating too much sugar. It is important for EVERYONE to learn the signs of T1. Knowing the signs could save a life. Seriously. Diabetes.
Independence. People with T1 Diabetes strive for independence, but sometimes still require the assistance of others. It is important to know how to help a person with Diabetes having a hypoglycemic episode. Independence.
Amazing. Parents of children with Diabetes and those with diabetes themselves are pretty amazing people. We all deal with the ins and outs of this disease day in and day out. Amazing.
Brave. Children (and adults) with T1 Diabetes are incredibly BRAVE. They deal with all the pokes and prods constantly. I for one know that *I* would not do as well as I have seen The Superhero do. He is incredibly brave. Brave.
Expensive. Insulin. Needles.Pump sites. Cartridges. CGM sites. Alcohol swabs. Etc. Enough said? Expensive.
Time. Two parts to this concept of Diabetes and "time". The actual "time" it takes to change sites, check fingers, administer insulin, count carbs, etc. And the "time" it takes to grieve over Diabetes. To come to terms with this disease. It is time consuming. Time.
Exercise. Good and bad. Exercise is known to DROP blood sugar in someone with Diabetes. This can be good. And this can be bad. It all depends on where the starting BG is and how the person handles it. Exercise.
Support. People in the DOC (Diabetes Online Community) provide the BEST support to one another. It is also important for those of us dealing with this disease to have support from our family and friends who don't deal with this daily. Support.

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