When a Bleed isn't a Bleed

Wow! So much has happened since I last blogged but I want to get this story out to you.

Last month we celebrated our daughter turning 17! She rarely asks for anything but this year she asked to go to SkyZone (an indoor trampoline park) with some of her friends; so we said SURE! We also told our other kids they could invite a friend and we could make it a family affair. 

For those of you who follow me you already know I have a three daughters (yes...we added another...more on that later) with Type 1 diabetes and our son has hemophilia, a bleeding disorder. So the fact that we were going to a trampoline park hosts a whole set of different issues with both chronic conditions. For the Type 1 diabetics we have to worry about low blood sugars from increased activity. For our hemophiliac we have to worry about possible injury and bleeds. But...chronic illnesses be damned...we had a birthday to celebrate and we can't live in a bubble! 

We buy tickets for all the kids to jump for an hour and my hubby and I decided why not?! And we jumped for 30 minutes; we had a blast and also realized that we are old and can get hurt too but see my bubble comment above! 

How Jackson passes the time waiting for to be called back to his room at the HTC

The kids were in the last few minutes of their hour of jumping when our son came out and let us know he had a back bleed (he is lucky he is able to tell when he has a bleed before any sign appears). Darn it! We headed out; since we were done anyway and went home to infuse his blood clotting factor medicine. We iced him up and let him sleep in the King's Throne aka the recliner for the evening. The next morning he said it still hurt so we infused again; as it was his regular infusion day. Monday we called our local Hematology Treatment Center (HTC) and let them know that he was still in pain which was weird as he usually bounces back quite quickly upon administering his infusions. They decided he needed to be seen by the hematologist.

We head into the HTC and he is given an exam and gave us an adjusted infusion schedule. They decided he needed daily infusions and they would re-evaluate on Wednesday if he wasn't feeling any better. Wednesday comes and he isn't feeling any better. We head in and he is given another exam and a MRI. The Doctors are concerned he has a bleed along his spinal cord. This was his first MRI and he did a great job! He was able to watch a movie while the scan was being done so it wasn't too bad. 

The results were interesting. There was NO bleed. The diagnosis?

A herniated L4 disc...which is extremely rare in children. Not only that but the way in which it was herniated didn't allow for surgery or physical therapy; just rest. The best guess from the Doctors was the injury occurred when our son went for a trampoline slam dunk and twisted his back in conjunction with the bounce of the trampoline and how his body elongated and then compressed. He was told to not even think about the trampoline park for at least a month! 

We are now about a month out from the herniated disc and he is fully recovered! He has rested as best as a 9 year old can. Would we change anything? No. This didn't happen because of hemophilia...it was a fluke thing...it could've happened to any of our kids...chronic illness or not. We choose to live our lives and have fun. We can deal with high and low blood sugars, bleeds and now herniated discs. 

Celebrating Friendship

Today I woke up to a post on Facebook from a very special friend. You know those posts on Facebook that say "Today you are celebrating xx years of friendship with insert name of person here"? 

My special friend is my diabetes mentor, Lora. While Facebook says today is our 8th year of friendship, this June we will celebrate 12 years of actual friendship. Back in 2005 when our then 4 year old daughter was diagnosed with Type 1 diabetes our family was in a state of shock. I was given a stack of papers from a social worker at our local Children's hospital with instructions to read them and fill out if necessary. In my desire to do and learn as much as I could, I did. 

One of those papers was a flier advertising a mentor program. Perfect! Someone who could talk me through this crazy new life of ours. I filled out the paperwork and within a week or two my phone rings. It was another mom, Lora, who also had a daughter the same age as mine who had Type 1 diabetes too. 

I know we must have talked for a while (we both are talkers!). But there are a few things that still stick out in my mind as to what she shared. 

1. A1C results = do NOT sweat

2. Cheetos 

3. Local support group

For those of you in the non-diabetes world an A1C is a test result that measures the average blood sugar over the past three months. AKA: the parent report card. Many parents have great anxiety over this number. Because of Lora, I do not. I didn't even understand what an A1C was 12 years ago when I first talked to her but I remember her telling me not to stress out about it. It is a number. A snapshot. It's information that will help your endocrinologist determine insulin adjustments. It is NOT a report card on how well you take care of your child with diabetes. As a parent you do the best you can in stepping in as a pseudo pancreas! I didn't even know what a pancreas was until diabetes! However, I am so thankful for her words. She set the tone of how I handle this information and in turn how I serve as a mentor to others. 

 

Cheetos. Yes, Cheetos. Let me explain. For those with diabetes we must count carbohydrates in order to determine how much insulin to give for food. You can do this several ways. You can measure with a food scale or measuring cups. You can purchase single serve food or you can hand count your food item. If you decided to hand count your food item imagine counting out 21 Cheetos. Have you seen Cheetos?! They come in all different lengths and sizes. What constitutes 21 Cheetos?! OMG! And if you get to the crumbs at the bottom of a Cheetos bag...what to do!?! I didn't truly understand what Lora was talking about until I bought a bag of Cheetos and decided snack bags were the way to go. Seriously...you'll never look at Cheetos the same way again! 

I was lucky enough that Lora happened to organize a monthly support group for kids and their families dealing with diabetes. She came up with the content, speakers and locations each month and it was life changing. Walking into the group the first time was intimidating. They were talking about things that I didn't understand but throughout the months and years of meetings they were a source of knowledge for when our daughter was ready to try something new in her diabetes care. 

Over the years Lora and I worked on many committees together and have watched our girls grow up. Then in 2012 when our then almost 18 year old daughter was diagnosed there she was again, calling to check on me.  While I don't get to see her or talk to her as much as I would like we are able to pick up where we left off. 

Lora, thank you for your encouragement, support and understanding all these years. Your friendship means the world to me and my family. I hope that each of you who read this post have that someone you can remember back to and thank for their support.

A New Year's Declaration

I'm not big on New Year's Resolutions. I figure if there is something I need or want to change then I'll just go ahead and do it. I don't need a new year to start something new. What I do like to do is a New Year's Declaration or Theme, if you will. I think about the opportunities that might present themselves to us in the year to come and declare it. For example; in 2012 I declared it "The Year of Travel". We had several opportunities to travel both separately and as a family to different conferences for each chronic illness and even vacationed for the first time as a family of 5 which included a straight drive from Ohio to Florida and one big suitcase full of diabetes and hemophilia supplies (never mind that we haven't taken a vacation since)!

For 2017 we have declared it "The Year of Prayer". We will have significant changes this year. Joe will be losing his job at a company he has worked nearly 20 years at this coming Spring. Our eldest will be marrying her High School sweetheart this fall and beginning a new chapter in her life while we both learn how to transition from little girl to a married grown up daughter. Our middle daughter will be driving, exerting her independence and trying to learn responsibility even more as she manages her diabetes while driving, gasp...a stick shift!! My non-profit job is never guaranteed as I see budget cuts, more demands on procuring funds and hiring freezes...it's an uncertain time. And who knows what curves our chronic illnesses will throw our way. While some of these things can and will be scary (for the record: we are SUPER EXCITED about the wedding!! We love or future son-in-law!) I am excited to see what journey these changes will bring. All of the above is beyond our control. We know whats happening and we can't change it but what we can do is pray.

We can pray for peace and guidance.

We can worry less.

Don't misunderstand...We are not a do nothing and hope for the best type of family. We are active prayers. This means that we will be actively searching for opportunities. Our eyes and ears will be open for ALL possibilities.  We will pound pavement. We will use our connections. We will pray.

We are friends will all walks of life. Believers and non believers. But no matter if you are the praying type or the send good vibes type we will gladly accept any prayers or positive thoughts you are willing to share.

What I love to do...

One of the things I have always loved to do is write. Even when I was younger I would keep journals. I was a writer for our community paper in junior high and would share album reviews in the paper at college. As life moves along and I became busy with marriage, kids and chronic illness I didn't even think about writing. But as I found myself at home dealing with a newborn in 2008 with a bleeding disorder I found some solace in reading others blogs. 

I found my voice. 

I began writing for the Blue Heel Society and sharing my perspective and thoughts about diabetes (collectively with 3 fabulous people in the diabetes community). I was also able to share my story when our eldest was diagnosed. I then began writing for Captain Jackson's Hemophilia Adventures and sharing my perspective and thoughts about bleeding disorders. I found great stress relief in pounding on my keyboard. My mind was full of random thoughts and feelings that needed to get out and writing helped me do that. I also wanted to make sure that others in both communities never felt alone. But, life happens. The kids got older. I started working day shifts. I just didn't have time to write. 

I missed it. 

Mindlessly scrolling through Facebook the other day I saw a calendar that Jerry Seinfeld used to help motivate him to write daily. I LOVED it. I thought it would be a great challenge for me. Kinda the "put it on the calendar like an appointment and you're more apt to do it" philosophy. So in the final hours of 1-1-17 I'm submitting my first blog entry of the year. Here's to a successful writing year! 

Thankful.

It only seems fitting that I post about being thankful as Thanksgiving is just a few days away. I am thankful for many things and shockingly I'm thankful for diabetes and hemophilia. I know...it sounds crazy but let me clarify. I would hand both away in a heartbeat but since I can't I choose to be thankful for the closeness and opportunities it has given our family.

I'm thankful for a spouse who is my teammate. We tackle challenges together. We build each other up and encourage one another. Showing a united front helps our kids see that we strong and ready for whatever comes our way.We are by no means the Cleaver family but we have a closeness that goes beyond. We rally and support each other when one is down or struggling. We cheer each other when milestones or accomplishments are achieved. We fight for us. We are passionate in what we do; no matter the cause.

I'm thankful that my kids are aware of their health and how they feel. The girls know when blood sugars aren't in range and Jackson knows when he is having a bleed. Being able to act quickly in both cases is key to either chronic illness.

I'm thankful for the amazing places we have been able to attend from conferences, to advocating in DC and even ring in the opening bell for NASDAQ (will blog about that on another post). We have met some incredibly inspiring people, families and a community of like minded people. To be able to find someone who goes through the same things your kids go through or can understand why you look like death warmed over after a rough night of blood sugar checks or why you are angry when insurance doesn't want to cover medicine or dictates what they want you to use.

They've been there.

They've done that.

It's easy to wallow in the "why us" and sometimes I do but I choose to accept what's been given to us and make the most of it. So if you are reading this chances are we are family. No, not family by blood necessarily but family by community and for you I am thankful. May your Thanksgiving be in range and bleed free!

Introductions

Hi! Many of you know us already. We are the Loving family. We are a family of 5. Our daughters have Type 1 diabetes and our son has severe hemophilia. I'm not new to blogging. Some of you have read my blog entries from the Blue Heel Society or Captain Jackson's Hemophilia Adventure. I've now decided to work on just one blog where I can talk about both chronic conditions in one forum. Some posts may be about diabetes, some about bleeding disorders and in some cases, both. No matter how you look at it we are living, dealing and thriving daily despite the hand we've been dealt. These are our stories...the Loving CHRONICles.

the Loving family at NYC!