Saturday, January 28, 2012

The Lake

We spent an evening at the lake last night. Wendy enjoyed playing the part of Alice on the outdoor stage.

Love her teeth. Some of them are getting a bit loose!

This tiny window did remind me of the small door in Alice in Wonderland--the one Alice longs to be small enough to enter!

"How I long to be small enough to walk right through this door and into that garden!"

Linc NEVER lets me snap his pic, but he's so gawrsh darn cute!

New Reality Show---American Child Hoggers.

The "Chicken 'Do" is making a comeback, y'all, due to popular demand!

Thursday, January 26, 2012

Funny Bits of Joy

"Everyone, let's hear it for Little Miss Wendy!"

What does the average family in America, or, in Texas?, do for stress-relief? Well, I have no idea. What do we do? Easy! Los Cucos for karaoke! Only Wendy and I sing, but lemme tell 'ya. We are regulars. Along with Melanie, Johnny and Stevie. Krystn, the gal running the show, we're on a texting basis now, ha ha. She's a sweetheart with a little boy of her own and a fantastic sense of humor. The fajitas for one are enough for our whole family, the margarita specials are awesome, and we never fail to enjoy ourselves. When Wendy's songs commence, Krystn announces, "That was Little Miss Wendy, singing Animal Crackers a capella (sp?), and she did say, 'a capella.'" And everyone claps. Aww...

Today, at noon, was the open house for Wendy's class' dinorama show time! Pooh Bear had to make it into hers. Whoop!

The other night.

Yes, in Linc's crib.

It's the same chair, in the same room, probably at the same time, y'all. Just love it.

Last night, as Wendy was in with her ballet class, I took Linc with me to the ladies' room. I noticed they keep a small, padded toilet-topper for potty-training kids. Yeah, the thought of it is kinda gross, but forget about that part for a moment, 'kay? I thought, "what the haystack," and I placed it on top. "Linc," I said as I looked down into his big blue eyes, "do you want to go tee-tee on the toilet?" "O-day" he said with a smirk. I then pulled down his lil' sweatpants, untaped his diaper, and plopped him up there. Wow, the boy smiled widely. I "adjusted" everything, and then stood in front of him and watched. His facial expression was one of concentration. Then! TINKLING INTO THE TOILET!!!!!!!!!!!!! I couldn't believe it! I wasn't even gonna START trying for a few more months. Last night, after eating dinner, before his bath, he DID IT AGAIN at home on Wendy's old Pooh Bear padded seat! WOWSERS! Haven't tried today yet. Don't want to hassle him too much.

AND! Wendy has a "sorta" loose tooth! She's VERY excited about it. It's on the bottom on her left side. It does move there in its little place, soooo. Now, Wendy knows the Tooth Fairy will be me. Long story. She has been told not to tell other kids though. (Basically, she nailed us by challenging the existence of God in light of "other characters in her head that just don't seem real, and what if we're having everyone else lie to her about God?" I hated to rob her of the Tooth Fairy before she's even lost her first tooth, but we don't want to mess with her mind, you know? So...James told her it's the parents, and then I chimed in with a sing-song voice, "And I have waited MY WHOLE LIFE to be a tooth fairy!!!" She hasn't asked about Santa yet. Funny side note--she DID tell one girl in her class, Kylynn, so I approached her mother to apologize, but Kylynn's family doesn't do all that fantasy stuff anyway in order to avoid God-confusion, so YAY!

Now, here is the latest re. Wendy's health. This is the copied e-mail I sent out, titled "Wendy's Diagnosis," which really is kind of a not-yet-diagnosis, sort of a pre-diagnosis still, as much as I hate the prolonged uncertainties...

They printed the report from Wendy's Ipro, and her reaction to glucose is not normal as her postprandial excursions jump too high, however, not (yet) to the point where she meets the criteria for Type 1 Diabetes. She is expected to meet the criteria for the diagnosis in one year's time. This is "early onset Type 1 Diabetes," and was caught unusually early. Most cases are dx'd when the child is already in ketoacidosis. We scheduled follow-up lab work to look for any other causes, another glucose test, another Ipro test (in a few months), and appointment with endo. Right now I am about to contact a diabetes research and trial organization. We will see if certain things like the injection of antigens or a vaccination called GAD65 can improve her future in some way. It cannot hurt her to try at this point since she pretty much is guaranteed to be insulin-dependent within months to a year. Also, I'm going to begin giving her Vitamin D and another supplement, to see if I can prolong this honeymoon period. ****Type 1 Diabetes is often mistaken for Type 2, but it is an entirely different disease. Type 1 is caused by genetics (in Wendy's case, most likely a new mutation) and an unknown environmental trigger, like a virus or toxin. Vaccines are not suspected ---with identical twins with the same DNA and same vaccine history, only one develops the disease, typically. Viruses of a common nature are more likely the insult--they are anywhere -- and trigger the unfortunate, but unavoidable, reaction in prone individuals. And there is some possibility having to do with cow's milk, but the connection is not clear or certain. (We've switched to alternative milk now.) Type 1 means the immune system destroys the beta cells of the pancreas. Type 2 is insulin-resistance due to medications, a sedentary lifestyle, and age and obesity play a role in some cases. Once Wendy is on her pump, she can eat normally (healthy diet with occasional party cake, or whatever, is fine) as long as we program her pump according to the carb-count. It can be well-managed, however, things like the impact from duration/intensity of her exercise, illness, stress, etc, will be impossible to match perfectly. The goal will be to keep her blood glucose as close to normal as possible, resulting in good A1C reports (measure overall blood glucose from past 3 months). We will test her blood sugar 3 days/week, 4 times each testing day, for now. Forgive me, everyone, if it takes me a while to fully believe and embrace this probability. It is so very rare! Type 1 makes up 5% of all diabetics, and children make up an even smaller percentage of that 5%, so I'm not likely to find another little girl with Type 1 to befriend my Wendy. And of course, I feel helpless to stop a process already underway, yet sooo early. I'm her mom and am naturally protective of my kids' health, so my knowledge of this, and impotence, is just torturous. That's my drive, but all I can do is wait for it to come. Ugh. Horrible. And the thing is, I still have a small sliver of hope because kids w/type 1 are rarely, if ever, identified prior to their qualification for the diagnosis. We were told we COULD begin low-dose insulin now, however, with her lows, I worry about the overload and its dangers, and the nurse agreed that it is better to wait as her spikes, and lows, right now, cannot cause harm. So, I guess we'll be getting her a James Avery bracelet that says "diabetic" this year sometime, and wow, life will be a challenge, but at least her life can be saved. In an earlier era, Wendy would definitely die. They told us how far treatment has come, and how one can live to be old, if they manage it well. Before the use of insulin, kids were put on a starvation diet, which prolonged their life MAYBE 5 years, but the children were so weak and miserable surviving on so little. With a pump, we can remove it for up to an hour for swimming. She'll wear it with her ballet leotard, though. I do worry about her social life, her future ability to get life insurance, for goodness' sake, etc, but no person is exempt from some sort of challenge in life, and I guess this is Wendy's--if not one of a few. I grieve the loss of the life I thought she'd have, from a health standpoint, the unburdened life, but I just have to get over it. I have to be strong and positive for everyone, Wendy most of all.

So, that's what I wrote, but since researching like a mad-woman, I've read various "normal" ranges, and I'm just not sure. I tend to think that as Wendy is intensely emotional, there could be some anomaly present in her that is a psychologically-driven change in her, physiologically. Why not? Eh? I see that obviously, there are red flags, but she's just not typical thus far, so there is room for hope.

Saturday, January 21, 2012

Life Lately

Well, Type 1 Diabetes is back on the table, sadly.
A friend who agreed Wendy's situation was puzzling, helped to get us in with the endocrinologist's office. Last Tuesday, they attached an Ipro to her backside, and this monitors her blood glucose continuously for one week. We are to feed her a variety of foods, and treats, especially the things she used to enjoy--like Pediasure and grapes (both of which we'd stopped as they contain mucho sugar). This test should reveal a great deal. And then we'll just go from there.
It feels surreal, especially when they gave her a pink camo insulin purse, an "I am diabetic" rubber bracelet, and a Mickey Mouse book featuring a diabetic monkey.
Wendy has gotten used to her four-a-day finger pokes. We have to test before each meal and at bedtime. All the values have been normal, however, they had pointed out to me that even her fasting bg, while normal, was paired with an insulin level that was just "bottoming out." She could be honeymooning, which means that her beta cells still function to some extent, but will soon be destroyed. We face only a 25% chance that this is a false alarm. Please pray that it is.
It's hard for me to believe that her body is failing, that in an era past, she would have died from this in a year's time, because to me, she is so beautiful and healthy-looking. I took these shots the other day.
I love her so much more than I ever loved myself, and I wish that I could make this stop and restore her immune system some way. I'll never feel the same way about the word, "honeymoon," as its new meaning isn't one of a happy new beginning, but rather means the end of normal, unaided health for my daughter.
I know I sound gloomy, but the reality is simply "not good news." Okay, so it's stinks, and the trials that lay before us are significant, however, God is in control. He loves us, and He has His purpose in this. I believed that when we first feared she was in ketoacidosis, and yes, we had a sort of reprieve, perhaps false hope, as the endo's office stated, but God's will is never outside of perfection, and I will believe, and will teach Wendy to believe, that this is to be part of her testimony in Christ.

Before we got the Ipro, I met with a diabetes educator, who suggested we return to Spoons, get the same frozen yogurt she had had before that first discovered spike, and see what happens. It never shot up over 140--and that was testing before she took her first bite, 15 minutes after she began, 1 hour after she finished and 2 hours after she finished.

Before resuming her "old diet," Wendy enjoyed making her own pizzas using whole grain crusts!

A much-needed date, not long ago.

Siblings enjoying their afternoon.

At a friend's little girl's birthday party.

Linc was enjoying these spicy pig skins!

What a funny kid!

The girls-------

One of the gals brought her new baby, oh so sweet.

The other night, at Los Cucos!

Linc loving his puppy.

And of course, Wendy loving her Pooh Bear.

Dancing at Los Cucos!

Sunday, January 08, 2012 goodness.

Wendy was BEGGING me for another peanut butter cup (sugar-free), and I was denying her, and then a few minutes later, she emerges from her room and asks in the most polite voice, "Mommy, um, may I please have just one more peanut butter cup to share with my friend in the mirror?"

Linc's Well Child Appointment

Linc's Big 2-Year-Old Boy! doctor visit was Friday morning, and he did very well! He did not even cry when getting his blood sugar checked or anything! He just frowned.
He is in about the 88th percentile, height-wise. Dr. H said nurse must've stretched him just a bit last visit because he's not as long as he was before! Ha ha.
Head is still a mega-head at 51.5 cm.
Wt-29 lbs, 12.8 oz.
Doing well!

Thursday, January 05, 2012

A Very Happy New Year

Well, we just got the miracle of our lives (my lifetime, at least!) So many of our friends and family prayed mightily for Wendy, along with us. Our pastor and the elders lay their hands on her and prayed for her, too, while we waited over a week for lab results.
Yesterday's follow-up appointment with her doctor was blessed. The lack of antibodies means it's not likely type 1 diabetes, and the fact that her cumulative blood sugar was 5.5, so not over the "6" mark, means it's not likely maturity onset diabetes of the young either. As well as I understand it, she had two hyperglycemic episodes that were confirmed with tests, however, as her blood sugar has remained normal since then, this is just going to continue to be a wait and see thing, and all that's necessary is her low-sugar, healthy diet and exercise. Now, her weekly finger pokes are two times, down from four.
Originally, this was most certainly type 1 diabetes, having gone unnoticed for who knows how long, and we were terrified, ready to begin education and insulin. God was our only hope for a miracle. I was more desperate than I've ever been in my 33 years of life.
What can I say now? God intervened and this is A MIRACLE!

We got the kids a trampoline, and set it up inside our dining room, so that they can get exercise when the weather outside is too harsh. This, so that we can help keep her blood sugar level normal.

Linc, looking like a DUDE watching TV!

Don't you love this face?!

The other day, I interviewed Wendy "as if you are a grown-up," I said. It went like this:

So, Wendy, do you work? --- Yes, at the utility.

What do you do there? --- I work on the computer.

Where did you go to college? --- A & M

What did you study? --- Books.

About what? --- Science.

So, are you married? --- Yes. His name is John.

Oh, so what do you like to do for fun? --- Hang out with my husband.

Oh, where do you two like to go? --- The coffee shop mainly.

Do you have pets? --- A cat, a dog and an inchworm. His name is Hermy. He lives in a cage in our "pet room."

So, what does John want from you for Christmas? --- A TV in our bedroom so we can watch it in bed.

Oh! And what do YOU want from him? --- a cleaner thing, you know, like a mop.