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Tuesday, February 1, 2011

Our Diagnosis Story

I have decided to join the blogging world again, but decided to discontinue the old blog and start over with a new blog, new face, and new focus. While the old blog focused on sharing the latest news about our kids and their activities, this will have a new focus, as our family has a "new normal. We are focused on a cure for diabetes, finding more information on how to best care for our little man, and how to be a "normal" family despite the challenges of trying to be an artificial pancreas for our son.

So to give you a good recap of how we got to this place I figure I should share our diagnosis story. As most of you know, Parker has struggled with gross motor skills, temperature regulation (he is my sweaty boy, even in the dead of winter), and low muscle tone throughout his childhood. These symptoms (and extreme nagging and persistence on our parts to find a cause) led to the diagnosis of a Chiari I malformation and syringomyelia on December 16, 2009. Following a routine MRI we discovered that almost 75% of Parker's spinal cord was compressed by a central tumor filled with CSF (cerebrospinal fluid) due to increased pressure on his cord by a narrowing at the base of his skull. So after a very tense Christmas holiday, full of worry and waiting, we had surgery on January 23, 2010 to decompress the hole at the base of Parker's skull, remove a portion of his C1 vertebrae, and relieve the pressure on Parker's spinal cord. Thanks to the God-given gifts of a wonderful surgeon with skilled hands and fervent prayers of many, Parker recovered beautifully and had a clean MRI this August.









We thought we had been through the worst of his struggles for sure, because what could be worse than brain/spinal cord surgery on a three year old? We would soon discover the answer.

On December 17, 2010 Jared and I flew to Florida for the wedding of his sister Maegan. While we were gone my sister mentioned that Parker had struggled with some bed-wetting.  I simply thought his routine had been disrupted or maybe she had forgotten to make him go to the bathroom before bed. He wet the bed again on Monday night so I made sure that he went to the bathroom Tuesday evening but he woke at 10:00, again at 2:30 and still wet the bed around 5:00 in the morning. I laid awake all night thinking in back to grad school and trying to think of all the causes of excessive urination... my mind kept going back to Type I diabetes. First thing in the morning on December 22, 2010 I told my Jared that I thought Parker had Type I diabetes.  Normally he would have said I was being crazy or looking at the internet too much but after our spinal cord problems he learned that my gut instincts were pretty accurate with Parker. We made an appointment with our sweet pediatrician for that afternoon and I asked Jared's mom to keep a log of how much he drank and urinated that day. After I shared our symptoms with Dr. Terry, she took a quick urine test and looked panicked and tearful as she asked whether we had family in town that could help with Avery because I would be in the hospital for several days with Parker. She confirmed my fears that Parker was diabetic and sent us straight to the Legacy Children's ER. I have learned that when your pediatrician cries when she shares news, it's because she knows how much your life is about to change. I am so thankful for the kind and compassionate women/mothers that we have had as Parker's pediatricians. They have made it easier to receive bad news.

As I drove Parker to the ER I was taken back to how I felt exactly one year before when we received the news that he would need spinal cord surgery and it felt like a million years ago. Suddenly, we were faced with a life-long challenge that would never be in our rearview mirror. 

Jared had to receive the bad news on the phone again, like the year before when I called during our terrible MRI. He quickly met us at the ER along with my dad and uncle who was in town for Christmas. At the Legacy ER they quickly reported how high his blood sugar was (it's a blur but I think it was about 411), that he had large ketones in his urine, indicating that he had been breaking down fat for energy, and was dehydrated. My first thought was, how can he be dehydrated when we have been giving him so much water? His body was using all the water to flush out the excess glucose in his blood stream. If we had limited his water intake to prevent bed-wetting we would have made him very ill, they reported. We had done a great job by giving him lots of water to help him keep from going into diabetic ketoacidosis (a life threatening condition).  Before we ever saw the doctor Parker needed lab draws and an IV. I cannot quite describe the trauma that getting labs drawn and having IV's placed has been for sweet Parker. I just know that it was so hard to watch that my uncle and dad had to turn and leave at one point to hide their own tears. It's heartbreaking to hear your son say, "I want to go home!" at the top of his lungs over and over again. He knew he was missing a Christmas party with friends at our house and he couldn't understand why he needed to be in the hospital when he felt fine.  After the labs were in we met with another very compassionate doctor who explained that we did indeed have Type I diabetes and would need to be transferred downtown to Children's Medical Center Dallas for "training" a.k.a "survival skills" before we could take Parker home.

Parker got to ride in an ambulance to CMC Dallas and greeted every nurse on the floor upon his arrival. He acted as though he owned the joint since he had been here before and remembered the lay of the land. He was not so pleased when he realized that every time someone came in his room he would need a finger stick and shot.  The first night was a little rough because he was exhausted and just didn't want to be messed with but on day two he met Nurse Ashley! This was a love affair that would go on for the next several days. She was the sweetest nurse and so good at explaining every step to Parker so he wouldn't be as afraid. She was also very compassionate with Jared and I as we cried, asked questions, freaked out about having to do this everyday, etc. Then, it was time for the diabetes educator, Aquilla to teach us how to care for Parker. We had two hours of head swimming information and practice on one another. Then we had another education class with the dietician to learn how to count carbs and plan Parker's meals. By the end of these classes we just went to the cafeteria and cried. It was overwhelming, exhausting, mind-numbing, frightening stuff to know that Parker's life was now resting in our hands. He could not live without injections four times a day and finger sticks at least 4-6 times a day. We slept a little then repeated the process the next day with a review of information and tests of our skills. Luckily, Parker was a champ at shots and finger sticks by day two. I can't imagine how hard this would have been with any other kid. Parker is so sweet, he rolls with the punches and learns to adjust so quickly. The doctor told us that it may not be so sweet once we went home and he learned that Diabetes would come home with him and not stay in the hospital. But, Dr. White underestimated our little man. He has never thrown a fit about a shot or finger stick to this day.  

It was great to get to leave the nasty, dirty hospital room and go to our nice warm comfortable beds on Christmas Eve. But we had no idea how hard it would be coming home to the bustle of the holidays. Parker's sugars sky rocketed because he got too excited, we panicked and needed to call the on-call doctors twice that weekend but they calmly reinforced what we had already learned. The holidays were not as joyful for Jared and I this year as we were grieving and felt like we were watching the world have fun while our hearts were breaking. The bright spot in all of it was watching the joy on Parker and Avery's faces. They moved on, they didn't care that we brought Diabetes home with us, they were just happy to be kids and carefree.


We didn't take pictures of his hospital stay other than him playing in the child life room. But here's a few from Christmas....you can tell he isn't too heartbroken.




We aren't grieving any more, we have moved past that phase. Now, I get a bit mad at times, but I will explain that in another blog post :) We are blessed beyond measure, grateful to God for his awesome power in revealing Parker's needs to us, and sustaining us daily.

17 comments:

  1. Sweet Heather - I am so sorry for Parker's diagnosis but so blessed to get to know you and your beautiful family. It was wonderful talking with you yesterday and I look forward to getting out families together soon. I am here for you anytime day or night - please never hesitate to call me. I'm always up! :)

    My heart aches with yours right now --- please be confident that you will not travel this journey alone.

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  2. Heather, thank you for sharing Parker's story. You are not alone on this journey, you are part of the DOC family now. I know, a family you never wanted to join. But we are glad you are here and that you are blogging and sharing your journey. Welcome.

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  3. Hello! Found you via Laura. :) Welcome to the DOC! My 4 year old son was just diagnosed last September, and we have been warmly welcomed by the DOC. I can relate to A LOT of what you have gone through with your son...on one of my first posts, I describe how we thought our son's issues were finally done (he was born with a cleft lip and then at 9 months old had to have a cataract removed and wears a contact lens), and then bam....T1D.

    Looking forward to getting to know you better! www.mylifeasapancreas.blogspot.com

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  4. Hi Heather! I also found you via Laura. :) I have 4 yr old boy/girl twins. My son was diagnosed with Type 1 Diabetes in November 2008 at 27 months old.
    Thank you for sharing your story. I look forward to getting to know you and your family better!! :)
    You can read more about us at www.sugarkidsblog.com

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  5. Hi Heather! Your diagnosis story is so familiar. I have a 9 year old daughter who was diagnosed 2 years ago. I hope that joining the Diabetes Online Community helps you through this tough time. We're all here for you.

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  6. Hi Heather,
    Got your comment on my blog. Thanks. In response to your honeymoon question, no, my gal wasn't much of a honeymooned. She pretty much was diagnosed in January 2009 and honeymooned for a few months, then it was done. So, I'm not the best person to ask about that. Good question for others in the DOC as I know many kids have honeymooned for years.
    As for the Novolog/Humalog question, in that post, if you click on the article link within the blog, it will take you to the article itself. John Walsh talks about it, as well as others. They are two different kinds of insulin. Novolog being a faster acting insulin than Humalog. Let me know if can't find the article on my blog st and I will send you a link to it. Feel free to email me off-blog at StarrAshton@yahoo.com. I see you have met lots of other DIC members!!!

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  7. Hi Heather,

    I found your blog through Laura. I remember our diagnosis day almost 2 years ago. It seems just like yesterday. I remember feeling a lot of the same things you did and my heart aches for you knowing what you are going through.

    My daughter was diagnosed in April 2009 just after her 3rd birthday. She was in the honeymoon stage for about 6 months. Prolonged a little by starting on an insulin pump just 5 months after she was diagnosed. I wouldn't recommend getting the pump that fast for most but it was right for us. A lot of information overload. The magnitude of the disease really didn't hit me until she started on the pump. Then really hit around the 1 year mark. It was like I hit a brick wall. That is when I started my blog. I was so blessed by the DOC and I know you will be too! It has helped me through some pretty rough patches in the past year.

    Ironically, when I started my blog, the song you have on your blog, Beautiful by Fransesca Battistelli; was the same song I put on my blog when I started it. (well, changed the focus to diabetes. Anyways, I am rambling. You can read about our diagnosis story and our lives with diabetes at www.sweet2thesoul.blogspot.com

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  8. Hi Heather,

    Welcome to the DOC...the best place in the world for the club that no one wants to join. You will meet some of the most amazing people in your life through your computer screen. I am so thankful for all of them, as they have kept me sane in knowing I am not alone in living my life as my son Joe's pancreas!

    LOVE TO YOU and WELCOME GIRL!!!

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  9. Hi Heather! Laura introduced me to your blog. So happy to have you join the D-Bloggin Mamas! I cried as I read your son's diagnosis story. My daughter will celebrate her 2 year Diaversary next week and it hit very close to home for me. Look forward to reading more and getting to know you!
    If you'd like to read about our T1 journey, I blog at www.boxofchocolatesblog.com

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  10. Thanks for sharing this Heather. I've been getting small updates from Mary on Parker every once in a while. I'm so sorry you're having to go through this struggle, but as you know, God is good ALL the time! He has great plans for Parker! I'll be praying...

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  11. Hi Heather,
    I'm so sorry to hear about your son. My son was just diagnosed right before yours, Nov. 2010. He was then diagnosed with celiac disease in Dec. 2010. We have been through so many changes, but the one thing that stays consistent is the Lord's love for us. He is right there every step of the way guiding us and blanketing us with his comfort. Continue to look to the Lord and everything will be just fine.

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  12. Hi! Welcome to the Diabetes Online Community aka The DOC! I realize this is a community you never thought you'd join, but I promise that the people you encounter will encourage, inspire, and motivate your journey ahead.

    I'm Wendy....my oldest daughter (now 7) was dx with T1D in 2005, at the age of 24 months and celiac in 2008, at the age of 5.

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  13. Welcome to The Diabetes Community! There are SO MANY wonderful Mommas and daddy s with helpful information here to help and give you HUGS!!! I remember our diagnosis day like it was yesterday ~What a HARD HARD time!
    I am Dana~ Our youngest son Blake was diagnosed with type 1 D over the FORTH of July 18 months ago when he was 6! HE still has a wonderful since of humor that keeps us CRACKING UP!
    On his First day back to school starting First Grade~ I was helping in class and Blake wanted to explain to his class about Diabetes! HE got up~ Momma in the back of the room with a tissue. HE Says~ "Hi~ I am Blake~ I have Type 1 diabetes~ i get at least 5 shots a day and shows him all of his diabetes stuff~ BUT it does not mean I am going to DIE and it does not mean I have diarrhea!" We LOVE our little Diabetes DUDE!!! We take the good with the bad and ENJOY every day~ just in a little different way!

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  14. I found my way here through Laura. Welcome to the DOC! I'm a newbie myself with my son being diagnosed June 2010. Sounds like you've been trough a lot with your little guy. I've found wonderful support in the DOC. They've helped me to focus more on the positive and less on the negative. I look forward to reading more of your blog and getting to know you!

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  15. Hi! I too, found your blog via Laura. I just wanted to welcome you to the DOC and thank you for sharing your story. I know how hard and painful it can be to relive the day of diagnosis.

    I'm Connie and I have two daughters, Miss E, diagnosed with type 1 diabetes when she was 2 years old. And Lil Miss C, diagnosed 11 months later when she was just 18 months old. I started blogging after the second dx and it has been a huge blessing, I'm so thankful for the connections that I have made in the DOC.

    I am looking forward to getting to know more about you and your family through your blog. I'm telling you, the DOC is a wonderful place and it is filled with some pretty amazing people!

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  16. Hi! I so related to what you said about T1D not being something you get through and over to look back on in the rearview mirror. Wow.

    My daughter Ellie was just dx'd in Sept. of 2010 so I am among the too many newbies of the DOC. But this is certainly a great group! Just not one you wish and hope to be a part of ;)

    I look forward to your stories and questions and rants and successes! Thanks for stopping by to say Hi over at www.three30three.blogspot.com

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  17. Welcome! I look forward to reading your blog! ((hugs)) from all of us to you and yours!

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