Lydia's Check up

L and I went to Birmingham last Monday for a 'betes check up. We got a good report and she is weighing in at 40 lbs! That's a big gain, since the 26 pounds at her diagnosis.

Her blood work this Summer identified high TSH levels, so they started her on a daily thyroid med.  The thyroid issue is  another autoimmune disease (like diabetes).  Luckily, she is a champ swallowing that pill and a half, she is currently taking each morning. 

Our prayer is for no more autoimmune diseases to follow, and there is definitely a laundry list of them.

7.2 A1C, it continues to go down. Holla!

 



Her tummy seems much better too! We will take that!

L, you are one amazing five year old!

It's been 2 years....

and whew, we have come a LOOOOONG way! Remember this Diabetes 101

The memories have started flowing.

We sat in those diabetes classes like they were speaking a different language. We were scared to death. It is all here... Information Overload 

Now, it's just part of our lives. We don't like it, but it is, what it is. Some days are far worse than others and that helpless feeling is overwhelming.   Other days are just routine with finger pricks, carb counting and bolusing. Everyday we worry.

And we are tired. Like extremely tired.

Our sweet girl is depending on us to keep her healthy. I can honestly say we are doing our best.

We are still hoping and praying for a cure.  (TEAM LYDIA- March 3, 2013-Walk for a cure)

We are so very, very thankful for insulin. It is amazing and keeps our angel alive.

So today, we are are celebrating that diabetes is part of our lives, rather than something that ruined or destroyed it.

Betes Check Up

Lydia and I loaded up and headed North this morning for a routine 'betes check-up. We got a really good report card too!

Thomas the Turtle made the trip and met Dr. Ashraf

Weighing in at a big ol' 37 lbs

Lydia- Future Betes Doctor with a 7.4 A1c on June 12, 2012

Now, you may wonder what in the world this picture is below. Lydia was asleep and I was sitting at the light, on Taylor Road and 231 S. I glanced over to my left and hello Marathon station. Every single time we pass that store, I think about our sweet Lydia, sitting in the back of the ambulance with Will, en route to Children's Hospital, as I followed close behind. (they made a pit stop there)

This afternoon, when I glanced over at the store it made me realize just how far we have come, since that emotional drive to Birmingham. Whew, we have come a long way. Each day is a new day with diabetes and it doesn't sleep or go on vacation, but we feel like we can make it work. And we do make it work.

 So.... Marathon Store, here's to pumping for one full year, a good report card today and an awesome, little girl that will continue to make it work, when this Mama is too old to hear the 2 am alarm.

 

We were both thrilled to get back to Dothan this afternoon.

And I was really happy when I received a text from Courtney that said she would deliver us dinner.  (It was delicious. Thank you, Sissy!!) Then,  Bea-Bea invited the girls over for a sleepover WITHOUT Daddy and Frances!

Don't ask.... Spooky, I know! :)

Today was long, but good.

 
Night Y'all. Say your prayers.

Latest on Lydia

Hey Friends and Fam!

Just wanted to let all of you know that we will not be going to Birmingham for Lydia's appointment tomorrow. They do not have all of the tests results back in, so we pushed her appointment back two more weeks.

We did learn yesterday from one of her tests that she has moderate pancreatic insufficiency. She has been taking the prescribed digestive enzymes since her original appointment and they really seem to be helping.

Our prayer is, it is all Type 1 related, but mostly that she will continue to gain weight and be healthy.



What is pancreatic insufficiency?

Pancreatic insufficiency is the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption. It typically occurs as a result of progressive pancreatic damage that may be caused by recurrent acute pancreatitis or by chronic pancreatitis due to a variety of conditions. In children, it is most frequently associated with cystic fibrosis (CF) or Shwachman-Diamond Syndrome (SDS). SDS is the second most common cause of inherited pancreatic insufficiency after CF. All those with SDS have some degree of pancreatic insufficiency beginning in infancy. Pancreatic insufficiency can also be associated with type 1 or autoimmune diabetes. It is less frequently but sometimes associated with pancreatic cancer.

Pancreatic insufficiency usually presents with symptoms of malabsorption, malnutrition, vitamin deficiencies, and weight loss (or an inability to gain weight in children) and is often associated with steatorrhea (loose, fatty, foul-smelling stools). Diabetes may also be present in adults with pancreatic insufficiency.

We are being patient with the results, yet ready for our appointment on May 23rd.

Thanks for loving and caring for our sweet girl!

XOXO,

Kristee

Tummy Time!

Tomorrow am, Lydia and I are heading to Montgomery to see a Pediatric Gastrologist. She had a routine 'betes check-up in Birmingham a couple of weeks ago. The visit was pretty good, except she had lost a couple of pounds since her last visit in October. Dr. Ashraf had some concern about the weight loss, plus Lydia's ongoing stomach issues.

I told Lydia today that we were going to the stomach doctor tomorrow and she asked me if they were going to cut her stomach open?  I assured her that they would not!

Anyway, we would appreciate a prayer or two for our smart girl.   We do hope to get some answers that might help with her tummy issues and pray that it is nothing.

Updates to Follow.

Love and Hugs!
kd

Betes in 2012

Lydia woke up high the other morning. I went ahead and gave her a shot. I hate highs. I got my flashlight and looked through the tiny window on her pod. It didn't look good, so I took the pod off and found this. This is a picture of her stomach.

I cannot even count the number of times that I have heard that the insulin pump will make our lives so much easier.

Convenient yes, easier no.

The pump doesn't handle it all for us. We are completely in charge of her insulin delivery and I would be lying if I said we always know what we are doing. Some meals and snacks are "swags"! (scientific wild a** guesses) Example: 17 carbs on a package doesn't necessarily require insulin to cover 17 carbs. Sometimes it requires more, some times less.

I'll say this, Lydia will be on top of her game sooner rather than later.

She reminds us that we need to check her blood sugar before meals and snacks.

Every morning when coffee maker beeps while shutting off, she asks if her pod is expired. (she thinks it is her pod beeping)

She asks every morning if it has been three days because she knows on day three that we have to change sites.

She says, "I'm shaky!" when she is low.

She is constantly asking how many carbs are in her foods. "How many carbs are in this apple?"

She also likes to ask, "Mama, am I high or am I low?" ha!

Her little mind is thinking about her diabetes often.

And yes, she can eat this.....

My goal in 2012 is to have her checking her own blood sugar and reading the numbers on the screen to us and her teachers.

Anyone recommend a good lancing device that would be easier than others for her little hands to use?

Will's post on September 21, 2010

When I think of September 21, 2010, there are a few words that come immediately to my mind. Fear, Anxiety, Anger, Desperation, Helplessness. Our little girl just shy of her third birthday had been battling her body right before our eyes. It had gone unnoticed for the most part, her irritable whining was attributed to lingering cold symptoms, her seemingly slender build we deduced was from her getting  taller, and  excessive trips to the potty were dismissed because she was just learning and we thought she was showing off. Then we witnessed an excessive thirst. Lydia was just tall enough to reach the water dispenser in the refrigerator door. Four to Five times a night, immediately after being tucked in and lights out she would come bounding down the hall with a thirst that could not be put out. We assumed, like most parents would have, it was a play for attention, but that was before a quick search on WEB MD.

Extreme thirst is a symptom of High Blood Sugar related to Diabetes. It all made sense, the symptoms seemed textbook, and anyway Diabetes is not such a big deal, right? The one thing  I was sure of was that it would only take a simple test to confirm or deny what I already knew deep down in my gut. We took Lydia to our Pediatrician and explained our observations and asked her to rule out Diabetes. Lydia was not happy with the finger pricks, that she would all too soon accept as routine. I remember the first result was inconclusive and it seemed as if the nurse was confused. I began to think,  "How can this be?". Kristee and I wanted an up or down answer. The nurse came back in and took another sample, this time with a different meter. The first one was not capable of reading extraordinary blood sugars. The Doctor came in and told us, "You have a very sick girl."  and confirmed her Blood Sugar as eight times the normal count for a little girl with a fully functioning pancreas. For me there was a mixture of anxiety and relief. Anxiety in, "What do we do now?" and Relief in an absolute diagnosis with a course of action. Kristee and I shared a few tears but were becoming bound together around Lydia.

Over the course of the next few days, Kristee and I were wracked with emotions, sleepless nights, short fuses and in the middle of that immersing ourselves in Diabetes Education. When I reflect on this anniversary, it is not a celebration but a time of Thanksgiving. I am thankful for the wisdom of the Medical Professionals, the unwavering support of family and friends, but especially for Lydia's courage and spirit. Our family has grown closer. Kristee and I have drawn closer together than I thought possible  before Diabetes. Even Dantzler is quick to defend Lydia and practices "Pretend Diabetes Management".   It is truly a family affair. It makes me ask, "Is Diabetes the diagnosis? Or the prescription?".  Just a thought. 

It has been ONE year!

Wow, it has been a full year since the big "betes" diagnosis.  It turned our world upside down and some days it still does.


Has it gotten any easier? Yes

Are there days we can't beat it and no matter what equation or carb ratio we use, we just cannot get her numbers right? Yes

Could we not make it without these? No, "circle snacks" treat many lows around here.



She will eat them during her sleep... Can you say, AWESOME?!


Do we worry 24/7 and check her 10 to 12 times per day? Yes and will continue to do so, especially after the sad news I read yesterday about a 14 year old with diabetes.

Are we tired? Yes, super tired.

But, our sweet Lydia's life was saved last September 21st and we are forever thankful for that! She was sick and now she is  better.

We have the tools to manage this disease and we are giving it our all.

We would hand it back over in a heartbeat, if we could, but we would also pick it over some others, for sure!

So, we are celebrating today! Here's to you, Lydia and all your extra sugar!

And Dantz gets to join the celebration because as Lydia says, "Dantz is a pretend diabetic"

Holla!

I have been pretty okay with Lydia going to preschool two days a week. (pretty okay meaning I have a nervous feeling in my tummy the entire three hours that she is there) I think some people think I'm a control freak (I can be) but I worry about her because she is just so young and doesn't always communicate how she is feeling. She has told us from time to time that she is shaky, or that her tummy is cold (those both mean that she is low), but not on a consistent basis.

Well, her teacher called about the time I was getting there to get Dantzler. She told me that Lydia said she was shaky and that they gave her some smarties. I rushed to get Lydia first, but I was SO happy and thrilled that she told her teacher. This is HUGE people!

Yes, she was low, as in 51 low, but she knew it and told it. This mama can handle that! (especially when we get it back up in range)

This cartoon below is hysterical. Seriously, if it were only that easy.... ha!



It's En Route!

This is the Omnipod and it's officially en route to us.  I got word today from the company that they finally got all the information they need  from Lydia's doctor/nurses and Will's insurance company. We have been dotting a lot of i's and crossing a lot of t's these past few weeks, so I was beyond thrilled to get the call today. An answer to SO many prayers and a big thanks to all of you!!


This device just blows my mind.  It got our vote mainly because it is tubeless and there's no risk of tubes getting twisted while sleeping or getting pulled out of the skin from playing, sleeping, etc. Another great factor is the "pricey" part not being on her body, but in our hands. The wireless remote is on the left above and it will control it all. We will use it to check her blood sugar (still by pricking her finger) and to input the doses that she needs at meals and throughout the day.  (those doses will take the place of SHOTS. hallelujah!) The pod is the egg shaped device that Lydia will wear on her body. It has a needle that will insert into her skin and the insulin will flow from the "egg" into her body. My baby's pancreas will be the "egg". joking, sort of.

This bad boy will arrive by the end of the week. We will have to schedule another trip or two to Birmingham before we are officially up and running with it. Will keep you posted on our new journey.

Team Lydia

March 5, 2011 at 8am

Westgate Park, Dothan

Mark your calendars. More info to come!

http://www2.jdrf.org/site/TR/Walk/Chapter-Alabama4000?team_id=11749&pg=team&fr_id=1246