Hello friends and family! Whew! Time has flown by and it's hard to believe that fall is here. Our family has been busy with lots of good-for-us activities, one of which has been getting our sweet Lily adjusted to full-day kindergarten! SOOO many thanks go to the staff at Wasatch Elementary, especially our MUCH loved Principle, Suzanne Bolar - I just couldn't say enough good about her. She's always been wonderful but the past month she's taken wonderful to a whole new level.
Lots of changes are taking place. Kurt and I have decided to put our home up for sale. With many reasons behind the decision, the primary reasons come down to my feeling like our current house is just TOO BIG - too much house to take care of, as well as a desire to get out of the city. And then there are the medical bills.....ugh.
More information will follow, but for now, if you know anyone who is looking for a GREAT house on a street community straight out of the 50's, give them my contact info.
The main reason for this post is to spread the word that we will be holding a "Yard, aka, Moving, aka fundraiser Sale' this Saturday - October 3rd. While our general philosophy is to give away our surplus items, at this point we have such a stack of medical bills that we're going to give this sale our best shot and Trust God to provide.
**We are also trying to get Lily on an insulin pump. However, they cost about $8000.00 !! Our insurance will cover 80% after the deductible. Stay tuned for information about where donations can be accepted. Every cent helps!
Today we went to the Family Link BBQ that was put on by the Salt Lake City, UT chapter of the American Diabetes Association for families that have children with Type 1 Diabetes. We've been looking forward to it for over a month and it was worth the wait!!
A group of youth from the Kaysville Stake organized activities for the kids and the adults were encouraged to be, well, social :)! I was excited for the chance to meet other families that lived nearby who were dealing with what we face every day. We met a few families that live in Kaysville, but the biggest surprise was in finding two old friends and meeting their little girls who are also Type 1.
Josh and Melissa Lee's little girl has been diagnosed for 2 years but is Lily's age and also entering Kindergarten in a couple of weeks. Melissa and I worked together for a local orthodontist during the time that her husband was serving a mission and Kurt and I were dating, engaged and then married! Actually, I think I replaced her as she left to marry her "trwo wuv". :) Anyhow, their children are darling and I arranged a meeting near the end of the picnic for her daughter and Lily. I was hoping that if Lily saw an insulin pump on another girl like her she would be more excited at the thought of getting one. Ahhhh.....no. I was thrilled to hear about how much easier a pump can be for everyone involved, and I was thankful to Melissa for her advice and encouragement in that department. Hopefully we'll be able to focus on that area of Lily's care as we get into school and things settle down for the academic year.
Just as Lily and I were finishing with Melissa and her princess, someone else stopped me because I "looked familiar", it was Breann Stone! (spelling?) Married, of course. Her Dad, Brad Stone and my Dad grew up best friends and were groomsmen at each others' weddings. B's darling 3 year old was diagnosed just 1 1/2 weeks before Lily was (March 31st Lily). It was so fun to see each other and catch up on the whereabouts of each other's families. And the best part was hearing that they would be at the next activity - so we would see each other again.
I am as nervous as a beaver in the springtime as I think about getting Lily into Kindergarten. Juvenile Diabetes falls under the American Disabilities Act of 1973 and so we will be meeting with her Principle and other school staff to make a 504 plan for Lily's care. It's overwhelming to realize that several people at the school will need to receive extensive training to be ready to care for Lily. When I spoke to her Principle in the spring, just before school got out and right after her diagnosis I learned that there weren't any other students there with Type 1. Stress!! Guilt!! Awww, pshaw, I can stuff that guilty feeling easier than the stressful one.
Days like today are the days that God sends to remind us that there is always hope. The sun will always be above the clouds, keeping the earth alive and spinning. Though the rains will fall, there will always be something sent to warm our hearts, even during the storm. For our family Juvenile Diabetes is a rainfall that we had not seen coming on the weather channel. I'm grateful today that we were shown several more families that are choosing to don rain boots, rain coats and umbrella's to embark on a puddle-splashing adventure. :)
Sunday is the first day of the week according to the calendar. But according to the Bible, Sunday is the Sabbath Day, the Seventh day of the Creation, the day that God set aside to rest. And the day that HE gave us to worship him. Rest from OUR labors, honor him through our service to Him.
Today I woke up at 4 am. I've been having strange, flash-back kind of dreams from real events in my life and they leave me awake and disturbed and unable to get back to sleep. It's been happening a lot lately.
For years, while my children were newborns, I would be up in the middle of the night with them, and I loved it. That was the only time of the day that was free from phone calls, other children's demands, work needing to be done and places to go. It was my blessing time. The time that I could hold my sweet baby and just revel in the spirit that little person had brought into our home.
I believe that EVERY child born into this earth is born carrying the kind of love and spirit from our Father in Heaven that each of us longs to feel on a daily basis. The trouble comes when we try to find the kind of quiet that is required to really feel that Heavenly Hug that will carry us a few more step-stones on the pathway of life.
With all of the distractions in the world it is all too easy to allow our lives to become either too complacent, too complicated, or both.
Our Heavenly Father misses us. He is a jealous God, it says so in the Bible. He doesn't like to be left out of our lives and he will send us little reminders to call home - just like, I imagine, I will when my kids head off for college. One of my reminders has come in the form of insomnia, which is fine and all, but seriously.....I miss having one of those new ones to hold. So if any of my friends reading this need a break from their newborn that happens to fall at, say 3am...call me. I'm serious. Dead serious. I'll be right over and happy as a toddler in the cookie jar.
May the Lord's blessings fall upon your house this week, and may you find the time to feel a little homesick. I promise that if you notice that feeling, he'll send you a hug. I promise.
Since Kurt and I had already "figured out" the bed wetting incidents and "solved" that problem (haha, NOT really), and since Lily's hunger seemed to be just another childhood growth spurt, I would have to say that this next symptom was - for me - the BIGGEST red flag. Of course, it was over several days of observation before I saw the red.....does that make any sense? Oh well, let me explain.
Skin and Bones....post 3 hrs of IV fluids + insulin
Around the time that Lily was eating so much I started to notice that she was looking thinner. Unfortunately, this observation just solidified my 'growth spurt' theory. You know how it goes....most babies have cute little chubby cheeks, and thighs, and fingers.....and then all of the sudden they start to grow. Out and UP, out and UP. And really, in this case, my Mom was the first to notice. The Sunday before Lily's diagnosis we were at my Mom and Dad's house for dinner. At some point in the evening my Mom commented, "Wow! Lily sure has thinned out quickly!" I gave her observation about 10 nano-seconds of thought, adding it to my library of observations of the Kids' behavior from the evening, and moving right along.....! It must have been that night that the hunger and her "thinning out" first started looking like more than just a growth spurt. With each day that came and went, Kurt would come home from work and at some point in the evening I would ask him "Does something seem off with Lily?" or "Look at Lily, does she look thinner to you?" It's not his fault that he didn't notice anything wrong, and that his answer to my questions was "no". The thing about Type 1 Diabetes is that the onset is sudden, and when Dad is only home for a couple of hours during the kids awake time, it would be easy to miss.
There were 2 or 3 times during these last few days before her diagnosis that Lily was unusually cranky, quiet, and lazy. At first I didn't think anything of it, but by Sunday night, and then with each day after that, I stopped asking her to do extra work. Sigh! In FACT, that Monday (March 28, 2011) during the day, just after lunch, I asked her to run down to the basement and grab Luke's blanket for nap time. "Ugh! M-O,O-M! Why do I have to be your servant?" (lol!) I gave her my, now common reply, "because you grew up! I've told you since you were a baby to stop growing up and since none of you have listened, you are now going to be my servants! :) " Well, she went downstairs to get his blanket, and right when she got up to our main floor I said, "okay! Let's go upstairs for stories!" She said, "Noooo! Up MORE stairs? I'm too tired, it's too far.!!"
It was at this point that I KNEW something was wrong. I just didn't know what it was. Anytime I asked Lily if she was feeling okay, she was just annoyed and responded with a quick, "MOM! I'm FINE!! Nothing's wrong, O-Kay?"
Moving from the ER to the 3rd floor....
Looking back now I understand what was going on during these question and answer sessions. First and most importantly, she's FOUR. Developmentally speaking, she's at the age where she's just learning to recognize her physical symptoms and then be able to put it into words. Secondly, Lily has had a pretty good case of 'third child syndrome' for a while now, and one part of that syndrome is an adamant refusal to be left - out - of - ANYTHING. Period. Most kids have to be really, really sick to willingly stay inside during playtime. Tack on the blessing of being the 3rd of 4 children and you might as well have an ox in the mire (mud-pit), an ant stuck in honey, or better yet - super-glue stuck on your fingers. You get the point, right? So, for several days she would push herself in order to participate in what was going on around the house and/or neighborhood. By Sunday she had stopped participating in the fun, but still wouldn't admit that there was anything wrong. By Tuesday morning she wasn't saying what was wrong, though I'm pretty sure that if she put her head up long enough and took her thumb out of her mouth far enough, she still may not have been able to tell me.
Our brave Lily w/ Nurse Natalie
Every day that went past made me realize more and more that there was something really wrong. She was getting thinner by the hour, she had circles under her eyes, she was sucking her thumb more all of the sudden, and carrying her blankie everywhere....and then I could count her ribs and just a few clicks forward I was counting the bumps that made her spine. On Wednesday, the 30th of March she had already spent 2 days officially 'sick' though with what I had no idea. That day she had gotten thin to the point that she weighed noticeably less when I carried her - everywhere, btw - and she didn't want to straddle, or wrap her legs around our waists when we carried her. She felt like she was going to break!
For almost 2 weeks I had watched our precious girl with a
nagging feeling that something was wrong.
Part four of our story is the best part of the story,
the part of our story where a very bad dream
is magically turned into the most beautiful miracle of our lives.
My eyes would pop out of my head as I turned to look at my husband,
who's eyes would then pop out of HIS head!
"Have a drink of water honey, you are probably thirsty ." Then,
"Honey, did you know it takes your body 20 minutes to know that it's full?"
Of course, NOW I know why she was so hungry. But during the middle of March all I could think was "How on EARTH are we going to be able to afford to FEED these kids (we have four total) at the rate they are eating?" Laughing Out Loud now, but the Sunday before Lily's Dr's appt and subsequent diagnosis I had drawn some (deeply profound ;) analogy during the Sunday School lesson about how God knows how much or how little we need and how he'll take care of us. Lol! I commented on how many times Kurt and I had exclaimed to each other during the previous weeks about how MUCH FOOD our little munchkins are eating.
"Eat Slower kids!"
"Make sure you start with a nice glass of water!"
"No grazing guys!" (that one's been around for a long time)
"Remember, if you get DoWn from the table, that means you are finished eating, so make sure you're full! Because you can't get down to play and then come back later for more."
Unusual hunger is another one of the symptoms of Type 1 diabetes. The trick is in figuring, or realizing that a child's hunger may be something MORE than a looming growth spurt. In fact, while Lily HAD been eating quite a bit a mealtimes, AND grazing so much that it had become an issue, the thought that her hunger was linked to Type 1 diabetes never even crossed my mind! Lily has an older sister who is 9 and an older brother who is 7 and as all parents know, kids eating patterns ebb and flow.....like the moon (soooo poetic huh? ;) But seriously, they do! Sometimes they'll eat next to nothing for several days - and that may be due to a growth spurt or perhaps due to a mild cold....any number of things.
The day that Lily was diagnosed was Thursday, March 31, 2011. Her doctors appointment was at 5:30 pm and we were looking forward to going to my Grandma's 80th birthday party which was at 6 pm. (A very COOL 80 year old btw - she texts her grand kids :) When I tucked Lily into bed for her nap, she told me she was going to sleep for a l-o-n-g time so she would have fun at Grandma Rini's birthday party. When the PA came in and told us to head straight for Primary Children's MC ER Lily burst into tears! Not because she was going to the hospital, but because she'd just heard that we wouldn't be going to the party!!
Of course, we had to drop her 3 siblings off to my parents, who were at the Birthday party. So we took that chance to give Grandma her gift, have my Dad and Kurt give her a blessing, and get her something to eat. At this point in our story, the knowledge that I had about Lily's disease was quite limited, and some of what I knew was just plain wrong. When it came to eating, I was thinking that whatever Lily ate on the way to the hospital would be her "Last Meal".
"She had diabetes, that means no more sugar!" But boy was she hungry! She ate a huge hamburger, and a mini cheesecake, then since she asked for Mom's cheesecake, I gave that one to her too. "Poor girl, she'll never have another cheesecake..."
In the end, I was wrong about all of it. Her hunger wasn't just a growth spurt - And - those little cheesecakes were not the last treats she would eat. I would come to realize over the next 10 days that most of what I knew about diabetes centered around the most recent research concerning Type 2 Diabetes. Type 2 Diabetes has been around for decades.
However, the differences in Type 1 and Type 2 - and did you know there is a Type 1.5 ? - are huge. The reason we are hearing so much about Type 2 is because the number of adults and children who suffer from this variation of Diabetes has reached epidemic proportions. Also, there is a lot that can be done to prevent Type 2 onset. "Prevention is the best medicine", or so they say. And why not!
When it comes to Type 1 Diabetes though, for now, we don't have the *causes, *preventions, and *cure. The greatest hope for a cure lies in the research that has been done on Stem Cells, and more specifically, Embryonic Stem Cells. The obvious debate on both political and moral platforms has stalled progress on finding THE CURE. No worries though, stalled progress does not equal stalled HOPE. What we DO know about Type 1 is that there seems to be a strong genetic factor. And the best news is simply that we know WHAT is going on, and we know HOW to both Monitor and Manage a child's blood glucose levels.
So, to wrap up.... Lily was hungry. Really, really hungry. She would eat, and be SO full, but then come back for more. Her body was lacking the insulin needed to grab the sugar out of her blood & feed the rest of her body. So her body sent signals to her brain, and to her tummy, that it needed MORE.
I found this video a couple of days ago. With all of the learning, concentrating, organizing, watching, monitoring and nursing that I've participated in during the past two weeks, I haven't found, or taken the time to cry. There were a few moments in the hospital that the tears tried to edge their way out, but I was afraid that if I started, I wouldn't be able to stop! It's been much better for me to be able to put my efforts into everything that is required from day to day - but when I found this video, I lost it. I'm grateful that I found it during nap time so Lily or Luke didn't have to see me cry. The hesitation before each shot, and poke - the pale face and limp little body, the brave little girl who told me yesterday during EVERY single needle jab that she "doesn't WANT to have diabetes!" Not with a whine. Just a tender, child-like statement that carried with it all of the humility, meekness and willingness to submit to the trials of this life that our Savior exemplified during His life. She's my hero. And I'm one lucky Mom.
One of the most common questions that we have been asked during the past few days is, "How did she get sick so suddenly", and "How did you know something was wrong?" Yesterday I started texting the answer to this question to a friend but stopped halfway through, telling her that I would finish the answer on my blog. It was much to long for a text, plus, this way, I could answer the golden question once.
*********
A quick 'google' search could easily take you to a dozen medical websites with pretty much the same list of symptoms. Beginning with the most commonly recognized and prominent traits - Excessive thirst and increased urination.
This symptom showed up in Lily around 2 weeks before we finally took her into the doctor, but to say that our first thought was diabetes would be FaR, fAr from the truth! (unfortunately:( ) But, like most parents, any symptom or problem is usually addressed through the process of elimination. In Lily's case, around the time of March 24th Lily began asking for more and more water. We had a conversation about gulping, which just seems funny, looking back at it. She was gulping her water and I taught her about swallowing air and how that could give her a tummy ache. Also, we discussed Princess Manners, and gulping water or slurping soup certainly didn't fit the bill!
Over the next several days Lily had 3 or 4 instances where she wet the bed. This was surprising to all of us since she had never had an accident and had been potty trained for years! When I asked Lily what happened she said she didn't know, "Mommy, my body didn't even TELL me to go potty, but I woke up and my bed was wet :( ". As parents, we looked at these incidents and saw two possible causes. First, she was obviously drinking too much water at bedtime. "Sigh! these kids... " we thought, "will they NEVER stop finding excuses to get out of bed?!!!" Second, the toilet right next to the kids rooms was out of order. I wondered if the journey down the hallway and into Mom and Dad's room was a bit intimidating for a four year old.
To solve these two problems we first drew a limit to how much water she could take to her nightstand - ONE 16 oz. cup should be plenty for anyone, we said. (Of course, NOW, I feel horribly guilty for restricting her water. I could almost cry!) Secondly we put a nightlight in the hallway, made sure the books from bedtime reading were picked up off the floor, and left a light on in our bathroom so that she could easily see the pathway. Ugh! Guilt!!! But, at the time, the problem seemed obvious and our solutions worked. No more accidents, though she asked for water immediately after she woke up and all throughout the day.
Hindsight is 20/20. Looking back it seems so clear! But two+ weeks ago this tell-tale symptom of Type 1 Diabetes seemed to have both obvious origins and easy solutions. If Lily had been an only child, these night-time wetting occurences, as well as the onset of the symptoms would have surely stood out - maybe even being alarming. However, Lily is one of FOUR kids - which makes for a very busy household. Her younger brother was diagnosed with food allergies to milk, peanuts, and eggs six months ago also. Needless to say, it took some time for her symptoms to become well defined pieces of her diagnostic puzzle.
Part 1 ? I know, I know! Why on earth can't I find the time to type out an entire book about the past three weeks? Or maybe the question is why would it even take a book? Lol! Well, I'm a writer, a reader, and a talker - so put those three things together via blog and what you get is my thoughts written out for you (and in the future, Lily) to read! More time? Well, for now - I have about 5 minutes to hop in the shower before Lily's next blood check and lunch. Thinking I should seize the moment, sniff, sniff.... ;)
Happy 4th Birthday 6/9/10
Blankie # 2 via Grandma Susan's Magic Blankie Machine!
**A few minutes ago Lily and Luke were getting ready to go out front and play in the sunshine with their Daddy. I asked Lily how she was feeling, and she said "Fine....but I still have diabetes huh Mom?" I smiled and said "yes honey, you will always have diabetes, for the rest of your life." to which she said "Unless we find the cure! Mommy, maybe if I eat 100 bananas that will work for the cure! What do you think?!!!!!" I think.......BRING IT!!!! Oh yeah! We will find a cure, you betcha!!
