Monday, April 21, 2014

Forever Changed

On April 10th, our lives changed forever as MJ was diagnosed with type 1 diabetes.


We were on spring break and having a wonderful time…we went to the aquarium on Monday and the zoo on Tuesday and he was acting perfectly normal.  On Wednesday when I got home from work Lisa (our nanny) mentioned that MJ was very thirsty all day and drinking a lot of water.  That night he woke up twice with an urgent need to urinate- very unusual for him.  He was whiny Thursday morning when I was leaving for work, begging me not to leave.  I assured him I would be home in a few hours and they had plans to go to the park and meet daddy for lunch.  When I got home Lisa reported that he was urinating a lot and very thirsty all day.  It was then that I heard the alarms sounding in my head -- these are classic early signs of diabetes. 


If you recall, Catelin was hospitalized in September for idiopathic ketotic HYPOglycemia (the complete opposite of diabetes) so I happen to have an Accu Check machine at home.  I raced up the stairs and pulled it out of our medical supply kit.  Please God, let his blood sugar be normal.  Please, please, please. My heart raced and my hands shook as I tried to calmly prick his finger.  And then the meter (which reads up to a blood sugar of 500, anything higher than that just reads “hi”) popped up with the reading I feared the most – “HI.”

Panic started to settle in.  No, God.  Please, NO! I washed his hands and checked it again.  It read “HI” immediately.  Maybe it’s not working properly; we haven’t used it in months.  Let me check my blood sugar. I checked mine, it read 100.  NO!!!!!! Still in denial, I tested MJ two more times …“HI.”.  I called Steve – honey, we have to take MJ to the ER right now.  His blood sugar is critically high.  I was sobbing, Steve was trying to keep me calm- he would be home in a few minutes.


MJ didn’t understand why we had to go to the hospital.  “I’m not sick, mommy.  Look at me, I’m playing.”   On the way to the ER I tried to think of any other possibilities but the truth was there was only one: our most precious child has type 1 diabetes.  The ER staff was incredible and whisked us back to the room quickly.  They drew blood and confirmed my fear – yes, he has new onset type 1 diabetes.  There is no family history of it on either side… Shock.  Disbelief.  Sadness.  The ER doctor said some comforting words including that we caught it very early- he was not in DKA (diabetic ketoacidosis) and the rest of his labs look great.  We just needed to get him on insulin. 

The next two days were a whirlwind of insulin shots, finger pricks, tears, diabetes education classes, more tears, nutrition classes, and more.  MJ told me on Friday that he needed to get out of the hospital so he could stop getting all of these shots.  My heart broke – I’m so sorry baby but even when we get home you are going to need those shots.  “Forever??!” He asked.  Yes, honey.  Forever.  “Even when I’m a grown up??”  Yes, even when you are a grown up.  And then more tears, more heart break.


I listened as the diabetic educators talked about him going back to school- how we would need a plan for checking his blood sugars before meals and physical activity.  Who will be administering the insulin at school?  Who will be monitoring him?  Everyone involved in his care has to know how to take care of him.  They need to know the signs of both hypo and hyperglycemia (low and high blood sugars).  If he has to go on a field trip, someone trained must go with him.  I kept thinking but he is FIVE!  He should be able to drink juice and eat cupcakes and go on field trips without having to worry about carb counting and insulin shots!  Frustration.  Anger.  More tears.  Why MJ?  Why now?



We were discharged from the hospital late Saturday afternoon and had to learn to quickly adjust to our “new normal.”  I will say this about MJ – he is AMAZING in every way.  Just amazing.  I can’t imagine being 5 and adjusting to a life where you have to watch every single thing you eat or drink.  He has embraced it with such a positive attitude.  We went on our usual Waffle House outing on Sunday morning where he announced, “I have diabetes and have to watch my carbs!”  So, sugar free syrup and unsweet tea with Splenda were added to our new menu.


He is doing great with the finger pricks- they really don’t bother him any more.  And the insulin injections are also getting much easier.  He loves to have an audience and show how brave he is.  We were over at my brother-in-law’s house on Sunday evening and he asked everyone if they wanted to watch him get a shot.  And they were all very impressed with how well he did. 

I made a diabetes kit for school and Steve and I met with his principal, vice principal, teachers and school nurses that Monday.  They were incredibly supportive – so much so that he was able to go back to school the following day.  I went over during lunch and taught them how to use his Novolog flex pens and count the carbs in his lunch to adjust his insulin.

Steve has been my rock; to say this has been overwhelming would be a gross understatement.  I saw incredible sadness in Steve’s eyes the other night, and as if he was reading my mind he said “I think I am taking this harder than I did when we found out Catelin needed surgery.”  This time it is different – as awful as that time was with Catelin, we knew that once she got through the surgery she would be ok.  But this?  Well, type 1 diabetes is forever.  His life – our lives - are forever changed. 


I know this – the world is a better place because MJ is in it.  So, we will deal with our new reality and keep that light shining because this boy … well, he is really someone special.

Tuesday, April 8, 2014

Time for Your Check Up

Catelin had post-op appointments with both of her surgeons a couple of weeks ago. 


She is doing amazing – no one can believe what she has been through when they look at her.  I hear “you would never know” often, which makes me happy.  Every day when I do her hair I stare at that scar – sometimes I find myself almost lost in it, remembering that terrible time in our lives …and yet being so thankful that she is here, safe and sound. 


I tell Catelin she is “so pretty” all of the time.  Not because I want her to develop an ego but because I want her to know that she is beautiful both inside and out.  And that scar – which her hair hides almost perfectly – is a part of her.  I pray that when she is older it will remind her how tough she is, how she can overcome any challenge and still have that precious smile on her face.  And while that scar makes me want to cry, it also reminds me to hug each of my children and tell them how “pretty” and wonderful they are every day.


Anyway, her check-ups went great.  The neurosurgeon doesn’t think he will have to operate on her again (I pray that holds true), but we will continue to follow up with him annually.  The craniofacial surgeon also thinks she looks great.  The plates will dissolve by the end of the year so we will know more what she will look like at that time.  If he does have to operate again it will be a relatively “minor” surgery (I guess anything is minor compared to her other surgery) which will not happen for another 1.5-2 years. 


In the meantime, this almost 2 year old girl is keeping us on our toes and showing off her adorable dimples every day!