Loving life again

Its been a long while since I've posted anything in Williams blog.... Life has been like a roller coaster...

Its not about me so I'll keep that to myself.
Things that have changed for William...
He's now in first grade and loves his new teacher and friends in his class.
He has a new stepdad and loves to wrestle and do "boy" stuff  with him.
He has more puppies and cats as friends and pets to love and cuddle with.

His sugar is still a little crazy but is maintained well. His last
A1c was 7.1
His Celiac still remains one of the largest challenges because he cant eat regular donuts.

We are happy happy happy, and enjoying life everyday.

Love you forever,
Momma

How Ironic life can be...

Williams Puppy Dog Lucky Boy, now 8months old and 91 lbs :)

We got him in November of 2012 for Williams 5th birthday and 2yr diabetes anniversary and Celiac Diagnosis... thought we'd do something fun... didn't realize how IRONIC life can be.....

we picked a dog that is now on a GLUTEN FREE DIET.... lol....and acts like William = head strong and willfull :)  How sweet life can be....

William is doing great and is super excited he is now "old enough" to go to his big school.... they just evaluated him for school readiness, and now thats all he can talk about. We can't wait till this fall...(I wish time would slow down a little bit, as the time seems to be flying by).

Diabetes wise.... his sugar is all over the place but we are managing and getting back in range...


Celiac wise...... Doing OK.. Sucks not being able to order anything off the fast food menus, but also makes us eat home more and slightly better choices....

Losing his first tooth was "not cool".... He didn't like the thought of falling asleep with his tooth under his pillow... It was ok when he woke up with money instead... He can be cute....

Lost his first tooth :)

Winter Blahs.....

Mom really hates Celiac and Diabetes! William is a go with the flow kind of guy and taking it better than the rest of us... He doesn't even seem to mind having to take cold lunches to daycare (yet). He loves still being able to eat ice cream :) 

Wills BG numbers are getting better/ more stable but according to the endocrinologist a little to low. His most current A1c is only 6.8 which by the way is better than his grandmas :)  His target range is about 8 so they (doctors) want us to bring his average up a little bit.

Mom took Will sledding the other day at our favorite spot. He had a BLAST! He love being able to go down the big kid sledding hill and hit the "bumps". (mom not so much). His diabetes took over though and we had to leave after an hour and half because he was low (50's) and after several pieces of candy and it wouldn't come up, mom said enough....   Sledding is hard work ya know!

Happy Winter (or not) as we are getting enough snow this past month to make up for the whole winter....

Its Official- Celiac Disease too :( Had his scope this morning and visual results as possitive for Celiac, labs to confirm next week :( HERE WE GO AGAIN>>>>> Helon Devos Childrens hospital did a GREAT job with William, they got his IV in without 4 of us having to hold him down. (it only took 2) LOVE him, the Celiac is very depressing for me and dad today.. Lots of changes regarding food coming....

3 mo check

DR visit update. A1C= 6.9! Fantastic Diabetes care! Dad takes most of the credit as mom has been very busy with school and doesn't hear the 2am alarm clock go off to check BG. He has consistent dusk phenomenom where his BG climbs rapidly as soon as he goes to sleep. wierd... We are looking forward to his long term outcome, and his 2am checks are exhausting, but worth it because hopefully he will be able to keep his eyes, feet, and kidneys long term (80's)... He is really looking forward to his 5th Bday... Love HIM :) We participated with our first Step out and Walk to cure diabetes campaign. Will had lots of fun, especially the first JCI one where he got to pet lots of dogs....

Daddy, I REALLY REALLY WANT A DOGGY!

Will and dad at Ford Field Detroit Mi watching Big Sister win State Marching Band Competition... Proud of sissy and her friends...

LOVED trick or Treating. He was Optimus Prime. Didn't like the mask though....

September 2012

So in the past month, William has been to see the Gastroenterologist (sp?) to confirm his labs as being Celiac. Celiac disease in case anyone hasn't heard is when his body can't break down gluton, which includes his favorite bread, donuts, pizza etc... He is going in for outpatient upper GI scope on Dec. 4... Diabetes will make that an interesting day...

His Blood Sugar numbers were doing really good until just recently.... now they are crazy again... around the clock unpredictable...

Will is loving school (preschool, daycare).  He goes 3 days a week while mommy is at work/ or school.

He just went to his first friends birthday party at CrazyBounce.  He had LOTS of fun.

He now asks when his birthday is every day because he wants to be 5....

He is still FULL of energy and is lots of fun....

summer...

Good summer A1c at 7.5. up a little from last  visit but this is not a surprise because of his illness and antibiotics.

He was tested for allergies and other autoimmune diseases and looks like he might have celiac disease too... poor little man. We have to go see another specialists for his opinion... The kid is only 4, can't he have a little break ? :(

Despite Diabetes, we are having a lot of summer fun. Swimming (lots), camping (yes, doing site changes in rustic campground really sucks!), and lots of smores (YUM).  His favorite, of course, are the smores..... :)

I love my little man.

another round of antibiotics.... ugg...

well, second round of antibiotics didn't work either, poor kid. He is pretty miserable (nose wise). Starting third round of antibiotics, with new Dr's office and an order for allergy testing.... To get the source and hopefully end this rediculous cycle...

Its been VERY hot here... we are not used to having weeks and weeks of 90's and little clouds and even less rain...

We hit the park via bike ride this morning and by 1030 am it was already in the upper 80's... whew....Will got to ride in the cart while momma did all the work though so he didn't really mind at all :)

We are hybernating in the AC most of the days when it gets really hot. Heat is hard on a diabetics body... especially when they are only 4.

Momma thinks the beach will be a good distraction for him later though.... (I can only take so much of the Wii ) :)

LOVIN' summer time....

First round of antibiotics didn't work. Back on second round of antibiotics again... Poor kid...

His BG numbers always look really good when he is on antibiotics though...

He had lots of fun playing with his cousins at Grandpa and Grandmas house this past weekend. We spent two nights there while having a yard sale.....

We are LOVING summer time....

Sick again....

Back on antibiotics... another sinus infection (just like his mamma).  Darn genetics.....

He's doing pretty well, little cranky and tired. Burned some ketones yesterday because of the high BG from sickness, but better now.

We are loving the sunshine.  He can travel around the block on his little 12" bike (mostly without complaint). 1.5 miles is pretty good when not feeling well too.

I love my little man... can't believe that his is almost 4.5 yrs old.

spring fever....

Hey all.. Will is doing great! His A1c is at a record low of 7.3 : We got a fantastic diabetes report from the ped. Endo..Makes us feel like all the lost sleep is worth it for his long term health. His BG has been stable for the most part with mainly under 300's for highs.. and a lot less super lows. He is still working on his dad on getting a dog, but we both know that we'd be the ones picking up the dog doo so he will have to keep working.... He went for his first motorcycle ride with daddy this past month. LOVED it! He is tired of being 4, he keeps telling us he wants to be 3 again, or 5. We think its because of daycare. He moved up the 4's room this past january and he's not liking it as much as the 3's room. :( The Dr's office actually got to take his blood pressure this time around. to bad it didn't read right the first time because there was no way they doing it again... getting there. William is starting to write his own name and is showing interest in learning to read. "what do these letters say?" We are ridding the bike around the block a lot, and he's already burned through his back tire... time for a bigger bike anyways....

back on the rollar coaster ride....

We are well into the year and no, I haven't been very good at posting to his blog. We as a family have been extremely busy.... With very little sleep to go around and a very long to do list, the blog is last on the list.....

We are having a hard time regulating his BG. We are having high highs, which makes him go super low.... our new all time low is 29.... Very bad news...

He seems extremely sensitive to carbs and insulin and the ratio changes every time we change insulin vials... Its hard to keep up.

We've giving the CGM system a break for a while because it can be so inaccurate, but then again we are having super lows. so I don't know what is worse....

Living with Diabetes really sucks, but we are thankful for the modern medicine.

Daddy hasn't been home much because of First Robotics, and momma is trying to keep up with the house and homework.... We are all looking forward to summer...

Good A1c !

Woot Woot! 7.7 A1c !
we got another Excellent Patient Care for Will's quarterly diabetes check up :).
The doctor and nurse educator was impressed at our ability to stay on top of things and said that his life expectations without Diabetes complications are looking good especially if we continue his great care....

After all the Sleepless nights, its nice to get a pat on the back once in awhile (even if it is only every three months):)

Jan '12

So, it's now January of 2012. Will turned 4 in December and he is growing like crazy. We had fun sledding the other day with the years first heavy snow fall. He had so much fun, I had to keep feeding him food to keep his sugar above 90. He didn't care, he only cared about the girls he was winning the races with down the hill.

We've been really struggling with daycare and the quality of his diabetes care. It's gonna be a lifelong battle atleast until he is old enough for self care. I can't wait until he is old enough to carry a cell phone and I can call and check on him whenver I feel worried. Ok, so he probably wouldn't like that so much.

Will has been having several "lows" and we are not sure why. He is growing, but sometimes this rollar coaster can be a little much....

We sure do love our little man though.....

One Year Anniversary :(

Today is our one year anniversary. The day before Thanksgiving dinner we spent ALL day at the endocrines office in GR for intense training on how to care for, and keep our child alive. We left in a dizzy haze wondering what the heck happened. The crash course contained counting carbs, checking Ketones, types of insulin, giving shots (when where and how), and a checklist of when to call the doctor or go to the hospital.

We started that day with a fasting glucose of 257 and an A1C at 11.2.
Today we are doing better with the BG control but we are still VERY tired! We have graduated from shots to using infusion sets and the pump. Love the Pump! The CGM system is flawed but does help up maintain the BG. This past week the wonderful (stupid) CGM set the pump a chimmin' all night long. :) Mom can not hear the wonderful (stupid) CGM pump at night while sleeping so dad who very much can hear the thing go off every 15 minutes doesn't get much sleep. Even when the thing doesn't go off we "think" we hear it and therefore no sleep... Our little prince however snores through everything :)

Yes, it is still a wonderful rollarcoaster ride with diabetes. As we would do anything for our kids, I'm getting to old for the all nighters and no sleep on a regular basis. My body wouldn't know what to do with actual sleep.

We are thankful for modern medicine and praying for a cure for type 1 diabetes on this one year anniversary and every day.

Been awhile...

So its been a month since our last post. We have been dealing with a lot. He just finished his second round of antibiotics for a sinus infection that doesn't want to go away. And of-course, I have one too. We've had many nights of checking at 2am. He seems to have the night phenomenom which he climbs rapidly when he first falls asleep.

When he first was diagnosed he did everything in opposites. They said he would drop after exercise. He actually climbed rapidly. Now on the other hand he did a switcheroo. He now rapidly drops. It is amazing when you think you get things figured out they switch again.

We are approaching his one year anniversary. Man, where did the year go? This anniversary is kind of sad that we have to celebrate it, but glad for modern medicines in which makes celebrating possible.

Long week!

Its been a long week! He's been sick with a cold. We decided to restart the sensor and its going better. Little more accurate than the last one which tells me that maybe the last sensor wasn't in properly since it came out so easily.
We had two bad sites in a row this week which put him into ketoacidosis. Almost had to make a hospital trip. We went back to injections and checking his BG every hour all night long (no sleep for mama). We went through four site changes in two days because he also pulled one off. Silly boy, doesn't he know that hurts?

That didn't last very long....

Will was playing "hockey" and pulled out his CGM sensor. It only lasted 2days. :( each sensor= $30.00
silly boy, doesn't he know those are expensive?
We weren't really impressed because of the huge margin of error. He went really low 56 and his CGM was reading 100??? what's with that? But we did like being woke up at night when he went really Hi.
We are going to try again soon.

Started CGMS

We started his CGMS yesterday. They have very LARGE needle but we used the numbing cream and it made it a little easier. It was kinda nice to be woken up at 4am for HI limits and alarms. Helps me sleep a little easier to know alarms will sound if he goes hi or low... The CGMS have a very wide margin for error (20-30%) so not reliable for dosing but handy at night and for graphing trends.

We enjoyed some Art prize yesterday too. First time that he was soooo very tired he fell asleep in my arms while eating lunch. Very cute!