Sunday, November 2, 2014

Having a Child with Type 1 Diabetes

On Good Friday morning in 2010, my oldest child who had been vomitting on and off for weeks, was yelling in pain and on the floor saying his chest hurt, that it was burning. I had previously taken him to our pediatrician at the time who examined him saying he thought he was just getting over a stomach bug but if it got serious we might consider taking him to the ER. I knew in my mother's gut, something was not right though. My husband was home that day, and after a frantic discussion and a call to the local Urgent Care facility getting a recommendation we go straight to Le Bonheur, my husband ran upstairs, scooped him up, and took him to the car to go there. He called me about an hour later and told me he had been diagnosed with Diabetes Type 1. I was in a state of disbelief for several minutes. He reassured me that it could have been so much worse and that the nurse there when seeing my son all the way across the room coming in knew immediately what it was. Our son was in the right place. 

When I arrived, they were trying to bring his blood sugar down and he was not allowed to drink water temporarily. I can't remember the exact number but his blood sugar was so high they were unable to read it (normal range is 80-120). He felt so thirsty and was constantly asking for water. He was also a little delirious and did not fully understand the situation. He kept asking for "kroger water" which we later understood he was referring to the huge filtered water jugs he would see at the front of the store. This boy was thirsty! (We later joked about the "kroger water" conversation, when we were able to laugh again) As a mother, it was one of the most diffficult times I have been through, telling him he could not have water when he was asking desperately for it. Then it occured to me, it's Good Friday. One of the many sufferings of Jesus on the cross was unquenchable thirst. I realized that the Lord had allowed us to have a small taste of his passion right there in the hospital room. 

We spent the next several days being educated about his disease. We came to realize he had been showing some warning signs before he had reached ketoacidosis which is where he was when we took him to Le Bonheur. The "burning in his chest" he was feeling was from acid building up from ketoacidosis. We also learned that Diabetes Type 1 (his diagnosis) was different than Diabetes Type 2. 
"Type 1 diabetes 
Type 1 diabetes was formerly called "juvenile diabetes" or "insulin-dependent diabetes," because 70 percent of diagnoses occur before a person reaches the age of 30. However, it can be diagnosed at any age. Only 5 percent to 10 percent of those diagnosed with diabetes have this type. With type 1 diabetes, the pancreas produces little to no insulin.  
If you have type 1 diabetes, you'll always need to take insulin, either through injections or through an insulin pump. Insulin, nutrition and activity (exercise) need to be kept in balance. 
It's also key that you test your blood sugar level, generally four times a day or more, to avoid extremely high or low blood sugar. 
Type 2 diabetes
This type of diabetes was previously called "adult onset diabetes." But according to the Centers for Disease Control and Prevention, type 2 diabetes has been reported among U.S. children and adolescents with increasing frequency over the past 20 years. Ninety percent of those with diabetes have type 2 diabetes. And approximately 80 percent of people with type 2 diabetes are overweight. With type 2 diabetes, your body either resists the effects of insulin or doesn't produce enough insulin to maintain a normal blood sugar level. 
Symptoms of type 2 diabetes, which are generally the same as symptoms of type 1, may come on gradually or not be noticed at all. 
A healthy diet and exercise may not be enough to lower your blood sugar level to a satisfactory range. Oral or injectable medication may be needed to control your blood sugar level." (mayoclinic.org)
The third type is Gestation Diabetes which occurs during pregnancy. I have not had this in any of my pregnancies thankfully.
 Some of the warning signs he was showing were constant thirst, nausea and vomitting (in the last few weeks), frequent urination at all times of the day, and he had in the past 6 months or so been growing alot thinner. This is a picture of him age 10, right before he was diagnosed:
Looks pretty normal right? Except he was never a skinny nor overweight child. Just healthy. I can remember looking at him when he took his shirt off before bed and thinking "He looks emaciated!" His bones were protruding. But I dismissed it as a growing season, and to him being an active boy. This is a picture of him a few years earlier:
His face looks a little less like a skeleton in comparison to the above. This was actually December 2007. 

What was happening as a result of his hyperglycemia (high blood sugar) is the following:
  • Frequent urination: The kidneys respond to high levels of glucose in the bloodstream by flushing out the extra glucose in urine. A child with diabetes who has hyperglycemia may need to pee more often and in larger volumes.
  • Extreme thirst: Kids with hyperglycemia who lose a lot of fluid from urinating often will become very thirsty and may drink a lot in an attempt to prevent dehydration.
  • Weight loss despite increased appetite: Without enough insulin to help the body use glucose, the body breaks down muscle and stored fat in an attempt to provide fuel to hungry cells.
  • Fatigue: Because the body can't use glucose for energy properly, kids with hyperglycemia may be unusually tired
(kidshealth.org on hyperglycemia)

After we became educated on what was causing his disease then we learned how to deal with it. We learned the art of counting carbs, and calculating proper amounts of insulin. I had already been making stuff from scratch because of food sensitivities, now I had to calculate carbs for everything I made, and figure out what a "serving" would be for him. We learned different doses for 2 types of insulin, one for long acting (overall coverage throughout the day) and quick acting for when he was unusally high or eating carbs. We learned how to give him shots. We learned what to do when his blood sugar was below normal, and what to do when he was above normal. We learned about emergency glucagon shots in case he was so low he passed out. After about 6 months we learned about using an insulin pump, and in a sense had to learn everything all over in a new way. We had to set aside normal daily life, schoolwork for this adjustment.

The emotional side of it was daunting. For the first few years at least I would say, it brought tremendous stress on our family life and our marriage. Suddenly my husband and I were summoned as our son's daily nurse/doctor overnight. Neither of us had any past experience of this kind. We lived with the fear of him not waking up in the morning every night. I was reminded of our anxiety as new parents with him, our firstborn, and sneaking in to his bedroom and leaning over just to hear him still breathing. We had to put his diabetic needs before many things, including his siblings sometimes. They had to learn to accept and adjust as well and dealt with the stress in their own way. We cried, freaked out, lost our " cool", and dealt with this newfound stress in many different ways. 

We had to watch our little boy, who already had challenges because of ADD and food sensitivities, become even less, normal. When his friends were running to play, he was testing his blood sugar and taking insulin, or waiting on a low blood sugar to come up (as you cannot be active until it does). He was woken up in the middle of the night for testing and insulin doses. His diet had to change even more, trying to maintain better blood sugar levels. We found over time and experience, that dairy products and higher carb foods with sugar were not good choices for him. Eventually we switched to a completely sugar free diet.  


But in trials are buried treasures, and lessons taught that otherwise go unlearned. I saw my husband be a true hero in my eyes several times and it made me love him all the more. When he was in intensive care in the beginnning, my husband stayed with him all night sitting in a chair checking on him, being there for him, though the staff assured him he would be fine. I remember the conversation so vividly. I said "you are going to be so exhausted!" He simply said "I'm not leaving my son." When my son gets sick especially with a fever, and when his blood sugar is high because of illness, he usually vomits. Vomitting can be a scary thing when you are diabetic because it becomes even more challenging to control blood sugars and often you can end up in the ER. On several occassions when my son got sick my husband slept with him in the same room 24 hrs a day until he recovered, vigilant with testing him, making sure he was getting fluids, testing keytones. We learned to forgive each other and allow each other to make mistakes. Like the time I accidently gave him the wrong type of insulin in the beginning with the other dose, causing him to drop dramatically and have to eat large amounts of carb heavy food and eventually a glucagon shot to bring it back to normal. We have had many late nights, and all nighters, trying to keep him alive, but I have often laid there at night looking at him sleeping peacefully after his blood sugar finally got to normal feeling such a supreme sense of peace and satisfaction myself, and confidence that we were all in God's hands.

A few years later our close friends' son was also diagnosed. My son was able to take theirs "under his wing" so to speak and reach out to him, diabetic brother to diabetic brother. We were able to help them get adjusted some and answer questions. It has brought home to my son and all of us even more that what you put in your mouth matters and affects your health for good or bad. 

Each new phase in his life adds a new element of challenge. He is currently a teenager and wants to be "normal" more than ever. He wants to eat without taking insulin, eat what others are eating, and go on with his daily life like everyone else. But until there is a cure, he won't be able to be like everyone else. We struggle with the desire to help him become independent as eventually he will not be living with us, and of course the desire to keep him healthy and alive. It is a daily challenge to make sure we are not asking too much, or too little, and constantly second guessing ourselves. 

I believe all things happen for a reason, and that trials are given to us to form us, to give us character, to help us grow in compassion for others and reach out to them when we would otherwise not care. My son may feel weak sometimes and different, but in the long run this trial will make him stronger, will soften his heart for the sufferings of others. I have already seen him capable of things most young boys don't even have to think about. He has been giving himself shots since age 11 or 12? and knows much about his disease. He dealt with the trauma really so much better than his parents. His attitude astounded me. Every challenge life has thrown him, he has remained an upbeat, relatively positive individual. I am also so grateful for the medical community that has helped us through this countless times, the doctors and nurses that have been on the phone with us in the middle of the night or all through the day. May God bless them richly! God has also blessed us through a dear friend we have known since college but who was diagnosed as an adult after we lost touch for a time. We have since reconnected and she has become yet another source of consolation for us and him, making him feel he is not alone, buying a pump skin for him to make him feel special (see below pictures for explanation of "pump skin"), answering my crazy texts about diabetes sometimes, because I still don't know everything there is to know about it, and never will. Here is a picture of him the Christmas after his diagnosis, healthy rosy cheeks, thanks be to God:

And a few years ago, while changing his site with his pump:

And a current picture of him, excited to put a new "skin" on his pump (a way of personalizing it) His skin of choice this time, from his favorite show "Ben Ten" :



If you or someone you know has been given this diagnosis, be patient with yourself or them, and believe that you will get through it in time, and be stronger for it in the end. Please share the above mentioned symptoms with anyone you suspect may have a child or themselves may have any or all of them, you could save their life.  God bless you!

Thursday, October 2, 2014

The School Nightmare

Hi Friends it has been a while since my last post. Wow, almost a year. Well, it seems like a good time of year for this post so read on. We decided to put our oldest child in school this year. He is not a morning person, nor am I. He requires a great deal of pulling and dragging  nudging to get him moving in the morning. My husband and I take turns with this process. This morning was my turn. However before I woke up, I had the following dream: I oversleep, which means my son is still asleep. I get up in a panic. As we are getting ready I realize he needs a coat because apparently winter has come early. I go to pull out his coat and the inside is coated with sticky food. Ew! I also realize that he is supposed to have "cake" today. I quickly whip up a cake the size of my car. It is gluten, sugar, dairy, and yeast free of course. I look at it before we get in the car and somehow there are bike tracks running through the middle of it (since it is that big). Oh well. Somehow, one of my son's teachers is magically there in the morning to help us get going, but she asks that in return I get her class started when I arrive as she will be late. We open the car door and much to my horror the 2 younger children of a friend of mine are still in the car from the other day when I picked them up from school. The youngest is crying. I decide to take them to another good friend's house (because in real life her house is like a refuge) which in my dream is 2 doors down. Perfect! When I arrive there they are making homemade beer with their own brewery. Everyone is having a taste. This is where I leave my other friend's little girls. As I finally get underway to take my son to school I remember about the teacher's request and sigh, because I am certain that somewhere at school is an unattended classroom full of students. and it is my fault. And I thought I was done with school nightmares. Hope you enjoyed! I did when I realized it was a dream!  

Friday, November 15, 2013

7 Quick Takes Friday


It's been forever since I've done a "Quicktakes", and it seems to be the only thing I have time for in the blogging life these days, so here are 7 mini would-have-been-blogs :). 
1.
Princess continues to amaze me as she gets older each year. She constantly comes up with games and activities to entertain her little brothers, all on her own. Before All Hallow's Eve, I found her planning a "Halloween party" for them. 
She made those herself!
Decorations

3.
I try to do all I can to set up the Little Guy for success with school. But he has so many challenges, sometimes it's just hard for him, no matter what. The other day he looked at me and said matter-of-factly, "Mom, sometimes school for me is like fighting for survival." Broke my heart! Thanks be to God he makes all things work for the good (Romans 8:28). It will make him a compassionate man some day for others who struggle with handicaps. 

4
My husband as I have mentioned before, brings laughter to our home. In the middle of dinner he will often play unexpected songs over the speaker. This one is a particular dinner music favorite. And no, we don't have chickens.

5.
We went to the Children's Museum today. There is an exhibit called "Grossology" all about, you guessed it, everything gross to do with your body. For real?! I have 3 boys. Exhibit. Not. Necessary.  And this is the stuff nightmares are made of....
A talking Faucet, but instead of water dripping, yep, you guessed it. 
This was Little Guy's favorite. The burp machine. Are we surprised?

6.
A picture of our life. We take up the whole dental office. What you don't see is the Little Guy sneaking around the corner to an unoccuppied chair, borrowing one of their tools, I think the sucker upper, just for kicks. 

7.
You know how a picture's worth a thousand words?
I give you, the Queen.
Today she runs our houshold, tomorrow, the world. or maybe a convent. Who knows. 

Happy, what's left of it, Friday! Look at some other quicktakes at Conversion Diary.




Sunday, August 25, 2013

Making "Sense" Out of Church (with Sensory Processing Disorder)

One of the many experiences I have had to learn to help the Little Guy cope with his SPD, is when we go to mass on Sunday. We have 5 children, and our 2 youngest are energetic little boys. So, my husband and I tag team. He gets Angel Boy who is currently 4, and I get the Little Guy. We have a routine, he and I. He sits in my lap, and either grabs my hands and puts them over his ears (I am guessing the sensory experience of being there may be too much for him at times) or he will literally grab my hands and make them slap his ears over and over again. Can you imagine what onlookers must be thinking? Sometimes I want to say out loud, "He likes it, really he does!" That is the hard part about SPD. He looks like an ordinary kid. But he is NO ordinary kid. Another thing we do is, he will pull my mouth towards his ear, and I am to understand this means, kissy time. He LOVES having his ear kissed. I do this over and over and it is very calming for him. Another thing he used to do, was to very unexpectedly lift my shirt to kiss my stomach. Typically this would be while we are standing, very close to the front, during a very solemn moment. Yea, I had to put a stop to that particular activity. It breaks my heart sometimes, to know that there is this constant storm brewing inside his little system. I know it is scary to him, and the worst part of it is, he can't always communicate what he is feeling. So I have to guess a lot. It is getting easier though, to read the signs. I read in an article the other day, that when such a child "acts out" by physically hurting a sibling or an object, or taking big risks, it is a cry for help. So when I went upstairs the other day after hearing some crashing noises, to find a very elaborate stair-step created, up to the top of the bookshelf, and the obvious crash pad situated right below, I chose not to freak. I calmly talked to him about it, and said "I know you need to crash into things, but jumping off the top of the bookshelf is not an option for you, jumping off the chair into the bean bag (it's huge) maybe, but not the bookshelf, ok?". You know what? He hasn't done it since. He needed to know that I understand what he is feeling, and that I respect him. Everything happens for a reason. I know God has a purpose for this little cross he has, and it will be for good. And when I think of all this in mass, and I look and see for a moment, he is gazing up at the cross, and he is perfectly still, I know that if anything will calm the storm inside him, Jesus will. Some day, he will know it.

  

Friday, May 17, 2013

7 Quick Takes Friday


1.
The Little Guy and his older brother cracked themselves up doing this. stuffing the Little Guy's shirt with couch pillows and watching him fall over both pretending he had a big belly. Boys, how little it takes to entertain. 

2.
Here's the other part of it. Older brother invented a game called "catapult" where he pushes Little Guy off with his feet into the couch. 
Everyone gets in on it. Something inside tells me it might be a little risky, but this is good for his sensory issues! :)
3.
Can we say, stinkin' cute?
If we can't, here's another...
and another...
Those are upside down, in case you were wondering. Kind of futuristic looking though, don't ya think?

4.
Meanwhile Barbie gets a spa treatment. 

5.
And Spot's getting potty trained...

6.
As I said, it takes so little....

7.
But then some boys grow up to be absolutely amazing men. LOVE our new Papa!

So there you have it folks, the most lame, most random, disconnected quicktakes, ever. Hope you enjoyed. Check out some others at Conversion Diary.

Sunday, March 17, 2013

Homeschooling with Sensory Processing Disorder

I have had the privilege of being able to watch some talented OTs work with my 6 yr. old son, and have learned alot from them about how to help him adjust to his surroundings and maximize his potential during school seatwork time. I wanted to share what we do with him (I say we, b/c when you homeschool, everyone's involved) on a daily basis. I would not do all of the following in one day, I took these pictures over a period of several school days.

There are different types of SPD, and you can learn more about it in the blog I wrote here. Between the 2 OTs my son has worked with they both discovered he required a great deal of heavy work and stimulation to be "grounded" in order to sit down and focus on a task, especially one that requires coordination and dexterity. Here are some of the things we do.

Tug-of-war with a towel

Climbing up and down the stairs on all fours

Pushing furniture from one side of the room to the other

Swinging

Swinging with an added sibling for weight. :) Don't worry, this part only lasted a moment.

"Wheel barrow" walking

Oh how I love this shot. "sandwiching". Can't you tell how much he is enjoying it? (on the bottom) And don't you love how I am the only one posing for the picture?

 The after "sandwiching" shot
Another sandwiching shot, without me (phew!) He's in the red shirt

As for seatwork, there are 2 things I wanted to share. 

When my son's current OT started working with him this year, we could not figure out a good grip for him to get a proper grasp on the pencil when writing. Because of his challenges, he was very shaky, unable to control his lines. Then she recommended this grip. In my layman terms, she said it might be better because the pencil was lined up with his middle finger, which allowed a direct connection to his neuro-receptors. I think I explained it roughly the way she did : /. All I know is, it worked like a charm!



Here's one activity to improve dexterity with fingers, easy to put together. Just a box and some clothespins. I numbered them and asked him to put them on and take them off one at a time in order.

You might ask, why go to all this trouble? What good will it do? Does it really make a difference?

Last year, this time, he was barely able to make shapes. Maybe a deformed circle. Not much more than that. And then the other day, he drew his first stickman in his math book.
 Is that not the cutest stickman you have ever SEEN?! I think he is wearing boxing gloves. Not a big deal for an ordinary six yr. old. But for him, a momentous occassion. 

  

Friday, March 15, 2013

7 Quick Takes Friday


Guess what we did today?
1.
A little of this....

2.
and this....

3.
and this....

4.
and this...
5.
a lot of this...

6.
But not alot of this...

7.
or this...

For more quick takes visit Jennifer at Conversion Diary.
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