"MOM, I CAN'T WIN THE EMPIRE WITH YOU CHECKING ME"

Weekend mornings are hockey mornings in the Maher home this year. Joe has really shown an interest in this sport. He has practices every Saturday and Sunday morning with the "Blue Crew." These practices have been a huge challenge in the blood sugar management department. Not only is it a very physical sport, but they rotate practice times...so sometimes Joe eats breakfast before he goes to practice and sometimes he does not (Have I mentioned how diabetes control thrives on "routine"?)...anyways, with insulin on board from breakfast, he tends to go low even with many grams of carbohydrates for "free" (this means no insulin coverage) right before he plays. Yesterday, I gave him a really low dose of insulin to cover his carbs for breakfast and he ran in the 300s and 400s during practice and after. So, when we got home I gave him insulin (only 1/2 the dose recommended) to try to get his blood sugar (a 420) down. He was playing Lego Star Wars on the X-Box...typical weekend morning stuff in our home. I go to check his number a couple of hours after the bolus and he is using both hands on the X-Box controller...he emphatically states "Mom I can't win the Empire with you checking me." Ha ha...does it get any better than this...really? "Of course, Joe "win the Empire" ..."just do it in a few minutes-OK?" A couple of minutes later, Empire won and all, Joe did his blood sugar check and he was a beautiful 183.

Empire Conqueror, NHL Hockey Player...whatever the goal..."Go For It Joe!"...we'll be by your side supporting you and cheering you on.

BIRTHDAY PARTYS

Up at 4am...I was making myself some coffee and I looked on the counter and there was an invitation Joe had just received to a friend's birthday party...my mind went back over all the birthday parties I have attended with Joe over the years...wondering when will he be going to his first birthday party without me, his portable pancreas, in tow...

Lucky for Joe, he is a fairly likable character...and he seems to be invited to quite a few parties...this is great for him...but more like a nightmare for me...haha. Not only do I get to deal with the aftermath of high or low blood sugars following the onslaught of pizza, cake, ice cream, candy, etc that these parties serve, but I get to experience the whole "party"...with 4 year olds, 5 year olds, 6 year olds...usually boys! One party had ten 5 year old boys in an 800 square foot house...where there were enough toy guns to arm each young boy...it does not take much imagination to picture the chaos.

The funny thing is...I don't think this is too far off anymore...Joe going to a birthday party on his own. I am pondering the possibility. He is able to check his own blood sugar, he uses his pump to give himself insulin and he can read nutrition labels and is starting to carb count other foods as well. Kinda sad to think that I will be missing out on his friends birthday celebrations in the near future...

UGLY LOWS

OK, so in the previous post "LOWS", I talked about a normal "low". I didn't share about the times (just a couple), that I have had to shove glucose tabs into my son's mouth and then "clamp" his mouth shut with my hands so that he would chew these tablets or let them disintegrate...so that his body could absorb the sugar and his blood sugar could rise. This happened once when he was 3 years old and once when he was 4. His blood sugar was low (in the 40s) and he was fighting me every step of the way to treat these lows...I decided it was best to shove the sugar tablets into his mouth rather than to have him go unconscious and have to give him a shot of Glucagon. They weren't pretty...and if I remember correctly my mother-in-law was present for one of these times...one of them I remember him trying to hide from me under the kitchen table and I am laying under the table prying his mouth open...his teeth were clenched tight...I was trying to get his mouth to open just enough to slide the tablet in...and then holding his mouth closed so that he would not spit the tablet right out. It was not a good experience...it was one of many times I felt cursed by this disease.

Lows are the most immediate danger with type 1 diabetes. Insulin is a tricky medication. You need just enough so that your body can use the sugars from your food for energy, but not too much or your body can have a serious reaction called hypoglycemia or a "low." Lows can be caused by either too much insulin, too much activity, illness, stress, etc. They are dangerous because they can lead to unconsciousness, seizure, and death if not treated. The brain cells can only use sugar for energy...this can be a big problem if one is low, because their brain is not functioning at capacity...so, while low, the person may not even know how to help themselves treat the low.

It has only been 3 years, at times it seems like a lifetime...of sleepless nights, of lack of control, of fear of what the future will bring, of despair...blogging tonight has taken me to places I'd like to forget, but it is important for me to remember where we have been and where we are going...

LOWS

I cannot even begin to share how many times in the last 3 years I have had to check Joe's number to determine if he is low...or if he is just being a pre-schooler having a tantrum...heck or a 5 or 6 year old having a melt-down. Sometimes he is low and sometimes he is a normal child displaying normal behavior patterns.

I vividly remember an incident in February 2006 (Joe was 3 at the time), we were playing on the playground at Bridget's elementary school and it was time to go. Well, Joe didn't want to go...I did what any proud parent would do, I gave him the "transitional warning"..."Joe in 5 minutes it will be time to go." Well the 5 minutes were up and it was time to go...Joe screamed and cried and pulled the "limp noodle" on me. Any parent of a stubborn toddler/preschooler is well-versed in this maneuver...the child literally becomes a floppy blob on the ground. Oh and did I mention we had on full snow gear?...we had a recent storm...the snow banks were 2 and 3 feet high. So there is Joe pulling the "limp noodle" and me and Bridget. I am trying to scoop his blobby carcass up off the ground and carry him to the car...and he is still screaming...we come around to the front of the school where a bunch of parents have congregated and are staring at us...very embarrassing...not one of my stellar parenting moments. After what seemed an eternity of lugging...I finally get him to the car. Now as I put him into the car seat...he transitions into a stiff board. It took me a good minute to force him to bend at the waist and to defend against his fists to buckle him...and then I yelled at him "YOU BETTER HOPE YOUR LOW BUDDY!" I checked his blood sugar and it was a respectable 117. Lucky for him, I was able to cool down on the drive home...and it was a simple time-out situation and then peace ensued.

Unfortunately, this is how it should go, before you give a consequence for bad behavior...you must think "is he low?" The only energy source brain cells can use is sugar...if your blood sugar goes low you become irritable, tearful, angry, sleepy, hungry, shaky, pale, clammy etc. The symptoms can be subtle. The above example said...there are many times I have yelled at Joe and given him consequences...without checking his blood sugar...to only find out after the fact that he was indeed low...it is so difficult to always be "on"...usually I am trying to entertain a few kids, make dinner, etc...and blow-off the obvious. Luckily, 3 years into this, I don't beat myself up quite as much or as vigorously as I used to...

ADIE ("Like the Number 80")

Seriously, does it get better than having a "best bud?"...I don't think so, especially in the eyes of a 6 year old boy...and that is just what Adie is, Joe's best bud. He comes over at least 2 times a week after school and he and Joe (and often Bridget) play Lego's, reenact Star Wars, ice skate, play soccer, rake leaves, play video games, etc. These two bring out great qualities in each other...Adie brings out Joe's empathetic side. I love watching Joe care for a friend so deeply... and I think Joe encourages Adie to try new things...both boys have heart...and this makes me love them all the more. They giggle when they push Bridget's buttons enough to get a rise out of her. They are your typical bratty little brothers...but when push comes to shove, Bridget fiercely protects them on the playground and vice-versa. The three of them are thick as thieves.

Few people know this, but I used to dread play dates...what if the other children are hungry...and it isn't quite a good time for Joe to eat. I could offer everyone cheese and meat (carb-free foods), but that doesn't always go over well with young kids in this carb-laden, processed-food flooded world. Joe didn't usually mind...if another child stated they were hungry and I fed them a snack, but it bothered me. Fortunately, Joe is usually pretty easy going with his food and the schedule...don't get me wrong...the kid is not deprived in any way. He has carbs (I just try to feed him a consistent amount at the same time daily and he has treats in moderation). The one thing Diabetes likes is consistency...that generally means meals around the same time daily, with roughly the same amount of carbs at the same time daily...with roughly the same activity schedule daily. So I am finding my stride in juggling play dates and best buds and diabetes and making it work...like all things it requires BALANCE...and our lives have been enriched by Joe's best bud Adie...

FIRST GRADE

First Grade is a tough grade...at least it seems to be for the Maher kids. I remember Bridget spending that year in timeout...it was an emotional roller-coaster ride with her at the helm for that year. So I was prepared for some challenging times with Joe.

Yes, the first few months of First Grade had been less than smooth let's say. He wasn't showing the proper amount of respect to adults in his life and he was having issues with listening the "first time" to directions. So I did what any type A, Virgo, control freak mother would. I made sticker charts...2 of them. One chart was for "Listening the First Time" - 10 stickers = 1 pack of sugar-free gum...and a "Respect Chart" - 5 stickers = 1 book order from the Scholastic Book Order forms that the school sends home. Well...this positive reinforcement stuff is great...for a kid like Bridget (this would be all I need to whip her into shape)...but for Joe...No. I also had to resort to taking away privileges...like watching TV and playing video games on the weekend...I almost had to resolve to corporal punishment...:o). Luckily I can report that his behavior is much improved...and we are now down to mostly a reward system...that I don't even need to use that often b/c he knows the behavior is expected all the time.

All this being said...this was a big year for me letting go a little and recognizing that some of the control I have been exerting in the diabetes department needed to ease so that my boy could grow up not only with decent A1Cs (this is the measurement that is done every 3 months to make sure his diabetes is in good control)...but I needed to make sure he was happy and felt in control of his own life. I added snack cart as a choice from school....this wasn't a choice last year...he was allowed to choose 1 hot lunch from school a week in kindergarten...this year I added that he could either have 1 hot lunch a week OR 1 snack cart a week (he could choose 1 plain milk with 1 item from the cart...and I keep my fingers crossed that the 1 item is NOT the Honey Bun). The snack cart is tough b/c the kids are allowed like 2 drinks (a juice and a milk) and 2 food items...a child could easily come away with 80-100grams of carbohydrate from that cart...this is why I was so against it. Joe has only chosen snack cart 4 times this year and he is great about only walking away with his plain milk and a cereal bowl. The first time he chose snack cart, I was called into school b/c he was refusing the snack I had packed him from home...I arrived at school and I saw many of his peers skipping away from the cafeteria with little brown paper bags in hand...swinging to and fro laden with their snack choices for the day...It hit me ... he just wanted to do what his friends were doing.

My heart was heavy that day...I know silly over such a small thing as the snack cart...it was good for me...it was the day that I decided to loosen up a bit...and I regained a little of the old me and Joe gotta stretch his first grade spirit a little bit...and feel more in control.

OH THAT MUST BE SO NICE THAT HE IS ON THE PUMP

"It must be so nice that he is on the pump." I have heard this comment so many times...and it is nice...that Joe is on the pump, but not for the reasons that many people believe. There is a lot of mis-information about diabetes in general...and about the insulin pump. Many people think that the pump does all the work for you...nothing can be further from the truth...

The insulin pump is connected to the user 24/7. It uses short acting insulin that is pumped into the user 24hrs a day at pre-set rates (this is your basal) and then you need to program the pump to deliver insulin (a bolus) every time you eat carbohydrates (which requires you to measure or weigh your food...every time you eat) and whenever the user's blood sugar is high. Because there is only short acting insulin being used...several checks need to be done throughout the day to check that the dosages are adequate...a typical day looks like this:

Keep in mind this is everyday...always...there are no breaks

7am - Blood Sugar check, Weigh Cereal, measure milk, add up carbs...and then program the numbers into the pump

9am - Blood Sugar check, read nutrition label on a snack cracker pack...and then program the numbers into the pump

11am - Blood Sugar check, bread carbs, measure out jelly using a tablespoon, peanut butter and measure milk...add up carbs...and then program the numbers into the pump

2pm - Blood Sugar check (if the number is over 200...program the pump to deliver more insulin)

5pm - Blood Sugar check, measure soup, measure milk, add up carbs...and then program numbers into the pump

7pm - Blood Sugar check (if the number is over 200...program the pump to deliver more insulin)

9pm - Blood Sugar check

11pm - Blood Sugar check

3 am - Blood Sugar check

This is a schedule assuming all is going as planned...it doesn't take into account activity (anyone who knows Joe...knows this is where we struggle the most...this boy throws his heart into all he does), illness, growth, holidays, vacations, etc...anything and everything can throw off the blood sugar numbers...especially when you are dealing with a young child with type 1.

All the above being said...I would pay any amount for this marvelous device. It allows you to work in 0.05 unit increments of insulin...whereas injections only allow you to work in 0.5 unit increments. This makes a world of difference when dosing a young child or someone who is sensitive to insulin...WE LOVE OUR PUMP!

BRIDGET

OK...just went to sit down with Dave - who is moaning for a thermometer...b/c I guess he is sick (he has a flair for drama when he is under the weather)...anyways, I was thinking about my attempt at this blogging thing so far...and couldn't shake the guilt of not mentioning Bridget...or writing something about this amazing human being.

She gets the shaft...a lot: in the food department: "sorry Bridget...no seconds on pasta, bread, cereal, etc" (she knows it is b/c Joe cannot necessarily have seconds...and sometimes Joe will catch-on and say it is OK if she has seconds...and sometimes...I don't know if he is paying attention or not, but no response from him...so she goes without). I have worked on this aspect of our life over the past year or so...realizing this is not a healthy food relationship for Bridget, nor is it a good sibling control issue that I had inadvertently caused. It was just so dang difficult to manage a 3 year-old/4 year-old/ 5 year-old's carb intake...and then to have a sibling to eat just whatever she wanted. For the most part, Bridget handles herself with grace and rarely complains. I am however,trying to change this situation that I have created.

She is truly Joe's biggest fan...for a year or so, she would put on shows (dances and songs) to entertain Joe to keep his mind off his insulin set change. Every other day Joe has a new needle stuck into his buttocks for insulin delivery from his pump. At times he complains that it is very painful, he has screamed, he has cried. So, we ice the site prior to inserting the needle and Bridget would dance and sing...at times the songs and dances were extremely inappropriate (potty talk etc), but they got the job done. Now he and Bridget watch part of a show or play Lego Star Wars on the X-Box to keep his mind off the task at hand. She is a hero...she never misses an opportunity to help distract him. I feel I am always trying to make-up to her my inadequacies for figuring this thing out and maintaining some sort of balance within the family. Again, she is truly amazing...my heart swells with pride and my eyes overflow with tears when thinking of her.

"HOCKEY JOE"

"Hockey Joe"...this is what Joe's friend Sam calls him. I love it!

Joe started ice skating when he was 4 years old. I remember taking him to an Itty Bitty Public Skate...he skated with a crate. He loved going and picking up the toys that the teacher would spin and subsequently fling all over the rink...little rubber duckies, cars, etc. His blood sugar would usually run low (when using a crate)...so I would have to boost him up with a glucose tablet or give him a little less insulin with his snack to attempt to keep his blood sugar in range.

Then he started skating lessons ... NO CRATE ... well, Joe was not a big fan of this as a 4 year old and I remember his blood sugar would be sky high after ice skating without a crate...I only figured all this out after weeks of studying his numbers and activity levels...ARGHHH.

Now, Joe plays ice hockey on the Essex Sting "Blue Crew"...it is a House Mite Team. He has improved so much this year...between Saturday and Sunday am practices and skating for hours on our rink in the backyard. Dave and I are in awe at his passion for hockey and his ability to endure...lows and highs while skating and playing. He was out skating this am and he just didn't look quite right...and he was complaining about an itch on his left thigh...then his pants just didn't feel right...etc. I should have known....I should have known...even though I had just checked his blood sugar and it was 130 and I fed him half a granola bar (free)...it is 3 years with this crappy disease and I still miss stuff...he finally came over and complained of being low...we checked...sure enough, poor guy was 55. He ROCKS, even at a 55, he was cruising on his beloved crossovers.

FLAX BREAD

I have used this bread recipe on and off since Joe's diagnosis. I weigh the bread and then multiply the weight (in grams) by the carb factor (0.436) to come up with the carb count. This bread seems to work well with his blood sugar numbers.

Here is the recipe:

1 1/3 cup H2O
2 T Butter
3 T Honey
1 1/2 cup bread flour
1 1/3 cup whole wheat flour
1/2 cup flax seed (ground)
1 1/2 t salt
2 1/2 t yeast

Add ingredients to bread machine...dry ingredients and then wet...use the rapid bake setting...(if using the basic setting, use only 1 t of yeast).

CARB FACTOR 0.436

HOSPITAL

September 2006

Dave describes this experience the BEST..."It was like drinking water from a firehose." This is how he explains the education that must take place in an 8-12 hour period for families to be able to take their newly diagnosed type 1 child home safely. This is how it must be...there is so much information to cover and if you don't do it this way...you could be in the hospital for days to absorb this crucial information:

1: What is a glucometer?
2: What is control solution?
3: What is a test strip?
4: How do you calibrate the glucometer?
5: How to test your child's blood sugar?
6: How do you operate a lancing device?
7: How do you change the needle of the lancing device?
8: What is a normal blood sugar level?
9: How do you treat a low blood sugar?
10: What is a fast acting carbohydrate?
11: What is Glucagon?
12: What is Insulin?
13: How do I give a shot?
14: How to meal plan?
15: How to read a nutrition label?
16: What are ketones?

This is just a scratch on the surface...nevermind that you have a 3 year-old that you need to do all of the above to...and his sibling to explain all of the above to...and that you need to somehow take all this information you just received and educate the school your child is attending and hope they are willing to help out. I am extremely fortunate that I am a nurse and was familiar with many of these topics, but I must say...even as an ICU nurse, I had NO idea what my family's life would be like once we returned home...

DIAGNOSIS

September 19, 2006

This is the day...that life as I knew it....changed. Prior to 2:30pm this very day...I had two healthy children. Bridget (our daughter) had just started kindergarten and Joe (our son) had just started attending pre-school 3 mornings a week. Prior to this we had always had one or both children at home. Dave (my husband) and I had been working on opposite schedules in order to care for the kids .... Dave had worked days Monday through Friday and I was working weekend nights (12 hour shifts in the Surgical and Pediatric ICU as a Registered Nurse).

I had a cold and I was "enjoying" my first "sick day" without children...when it is too quiet, I start to think...on this day I was thinking about something my husband had mentioned to me a couple of weeks prior..."Joe seems to be thirsty all the time...have you noticed?" I had noticed, but didn't want to be an over-reactive ICU nurse mom...and so blew it off. Although, I had started to notice, in addition to increased thirst... our son's diapers were extremely heavy...he was gulping down bath water (I know gross) every night...and then drinking two more cups full of water prior to bedtime.

So, the nurse in me added up the water I could account for in his daily consumption and it ended up being over 48 ounces. I called the Pediatricians office and ran this by the triage nurse...she stated "that is a lot for a 3 year old...we will want to see him today." We scheduled an appointment for 4:30pm and then she called me back stating they wanted to see him earlier (this scared me...I still thought I may be over-reacting and it was just my imagination). So I went to pick-up Joe from school and his teacher reported that they had found Joe in the bathroom splashing water from the faucet into his mouth...I vividly remember the hair standing-up on the back of my neck...I realized something was terribly wrong (this was not just my imagination)....

When we arrived to the pediatrician's office...they dipped his urine. The doctor was in the exam room with us...still asking basic questions....I then asked, he is alright? Right? The urine checked out OK? The doctor responded, "I am sorry, Reyna...his urine has sugar and ketones...I have a call into the endocrinologist at the hospital." We were then told that we needed to have Joe admitted to the hospital...young children need close monitoring when they are newly diagnosed with type 1 and have ketones.