Tuesday, December 21, 2010

Really? Benign what?

After Emma had crazy episodes on both Labor Day night and Thanksgiving night, our pediatrician decided it would be best to get an eeg. A SLEEP DEPRIVED eeg.  That means we had  to get her up at 2am and keep her up until her appointment at 2:30pm and then just expect her to automatically fall asleep right when they told her too. Well, she didn't. It took forever to get all of the little nodes attached to her head (although he was quite proficient at it and used kid friendly terms like "cereal bowls" and then he filled them with "peanut butter and jelly". So that was helpful.) And then it took even longer to get her to stop whining/crying and to fall asleep. Then, she only got to stay asleep for about 5 minutes (long enough for them to determine that she was indeed "abnormal" - Thanks, doc! That was helpful!) And then they woke her up and we went home scared and confused only knowing that she was "abnormal" and would need to be "medicated for her own safety". Then, after the tech promised he'd have the results to our pediatrician's office the next Monday, we finally got it a week and a half after we were supposed to get them. And we got a diagnosis of benign occipital epilepsy
Here is a description, just in case you wanted one...
Early-onset benign epilepsy of childhood with occipital seizures is a distinct form of occipital epilepsy—seizures that originate in the brain area responsible for vision. The peak age of onset for the early form is between ages 3 and 5. The late form (Gastaut type) has a peak onset between ages 7 and 9.

Seizures are infrequent with two-thirds of seizures occurring at night, usually shortly after the child falls asleep. The episodes typically last less than 10 minutes, with vomiting and gazing toward one side, and often evolving to rhythmic muscle contractions on one or both sides of the body. Episodes occur with or without impairment of consciousness. They are occasionally triggered or aggravated by turning off lights, going from lighted areas to dark ones, or from dark areas to light ones.

Some children may experience headache and visual symptoms—colored shapes, flashes of light—in associated with the seizure. The condition is sometimes confused with migraines, as these headaches are common either before, during or after the seizures.

The prognosis for early-onset childhood benign occipital epilepsy is excellent with most children outgrowing the condition after several years.

Children with this form of epilepsy have a genetic predisposition. The syndrome represents about 3 percent of childhood epilepsy, with a somewhat higher incidence in girls than in boys.

So that is relatively good news, in that she will grow out of it and that it is benign. Our next step is to get an MRI, which we hope to do before the end of the year to rule out something worse that I really don't want to think about. So I'm not. ;)
Here she was pretending to sleep. If only she would have really gone to sleep so easily. ;)
 She did ok once she figured out that it really didn't hurt getting the "cereal bowls" glued to her head with "peanut butter and jelly". (Before we tried to make her sleep!)
 This was after she had slept for 5 minutes and then he removed all of the "cereal bowls". We were literally combing glue out of her hair for a week!
So, we will keep you posted on the MRI and we are definitely praying for a FAR less eventful 2011!!!








A little pre-Christmas fun...

Last Friday was Emma's last day of school for 2010 and the day of her Christmas party! Yay! She had been counting down the days.
 She and her friend Diana. :) Diana is so generous. She is always giving her (and me) little plastic jewels or marbles. :) She's a sweetie!
 Emma's teacher, Mrs. Fulghum, had lots of little goodies for them. Emma just said to write "I love Mrs. Fulghum."
Friday night was our annual trip to the Lights of the Ozarks (Fayetteville Square) with the Luningham family. Here, they are checking out the baby pony. :)
 We may have to take out a second mortgage on our house if they have come up with anything else to sell or ride there next year. Because they have to do it all. :) First, was riding the ponies.

 Next, was Cinderella's carriage.
 Of course they needed inflatable Santas. (And, by the way, I was really grossed out thinking about who blew it up originally when I had to re-blow it up.  YUCK! and unfortunately I didn't think about it until mid-blow!)
 This was the only one where all 4 were actually looking at the camera.
 Ella and Emma 2010. BEST FRIENDS FOREVER!
 Evans Fam
 Then on Saturday, we took off to Branson. On the way there, we started seeing a few eagles. So we slowed down and when we came around the corner, we saw this tree! It was full and there were 3 or 4 more trees full! It was really amazing! My mom would have really had the BIG ONE if she saw them (she drove all the way there the next day and there weren't any!) It was really exciting!
 I didn't even get pictures of Silver Dollar City or the Dixie Stampede. But they were fun too. It was really an accomplishment at SDC because we went with NO stroller (we did last time too, but we had lots of family to help) but this time we were on our own and it was great! It didn't even seem like we needed one. It was also fun because we did lots of things that we don't usually do like ride the train. We didn't even go near the frogs! I guess it is a sign that they are growing up! ;) I wasn't even too sad about it.

Sunday night was yet another Christmas tradition... Our annual reading of The Night Before Christmas at the Reynolds house. The cousins had so much fun as usual. Chas did Emma's hair so cute! And we had our new "go to" dessert, SF pudding. YUM! ;)


Monday night, my Uncle John got married to Michelle! Yay! We got to see all the Karnes cousins and that was fun.

 Tonight, we had a neighborhood 'Happy Birthday, Jesus' Party. We had cheese "north stars", animal cracker camels, donkeys and sheep; we read several nativity stories and did some cute crafts.
 Aiden and his "twin" Matthew. They are a month apart and I swear you can't tell them apart from the back.
 Happy Birthday, Jesus!!
 Coloring ornaments.
 Some of them singing Happy Birthday to Jesus!
Looking forward to lots more fun activites over Christmas break! :)

Thursday, December 16, 2010

We LOVE the DOC!

Well our UPS man and the mailman have been super busy delivering us lots of love from the DOC! Aiden was so excited to get this package today!
 Thanks, Super Nate and Houston family! We love this shirt and hope to have one that is half this cute for our race!
 Emma insisted that the ornapods go on her tree because they said Emma on the back! ;) I am totally stealing them tonight to put on our big tree!
 We got our shirts from Sweet Pea last week! I LOVE THEM! They are so cute!
 Then of course, there are the PJ's for the Cure that I won from Meri!  (Emma was really having fun on her Polar Express field trip, she just wasn't in a picture taking mood!)
Thank you all so much! We love everything! But most of all we love all the support that we get from all of you everyday! Thanks a million and Merry Christmas! ;)

Thursday, December 9, 2010

Aiden's 4th Birthday Extravaganza!!

Happy 4th Birthday, Aiden James!! We love you and you have been our super hero this year and always!
Oooooo... the claw... (23g carbs each!)
Pizza Planet (29g carbs per slice or 20ish if you eat it Aiden style - minus the crust and the top 1/3 of the slice)
One happy birthday boy!
Pre party blood sugar = 88. Score! He wanted to hide in the closet. ;)
I got to hold baby Yunice!
How excited was this boy to eat a cupcake? VERY!
This is a trick picture. He didn't actually blow out the candle. He immediately got shy and hid behind the curtain right after this. So I blew it out and no secrets here... I wished for a cure!
I am pretty sure it was the best 23carbs he has had since August 18.
He was so excited to get his own Elf on the Shelf from Nana! Welcome to the family, Buzz!
Swimming was a key to the party. We really wanted to make sure we had LOTS of physical activity to balance out those cupcakes! And it worked! Ending blood sugar of 102! Yay!!
We also had a balloon release to include Nana, Aunt Mary, Kyle, Hannah Grace, and Randy in our party. We miss them so much! So hopefully they were partying in Heaven right along with us. :)

On Aiden's birthday, he opened his presents from us and Emma. Daddy was super excited to get him a "Gas Powered Remote Control Truck" and you have to say it all together like that! HA! But Aiden loves it and it fit right in with him wanting EVERYTHING "mote tentrol" (i.e. remote control). He is obsessed!

Emma was very specific about what she wanted to get him. She picked out a Fossil wallet with Razorbacks all over it. This boy loves dollars so it was prefect! What a good sissy!
Then we headed to Chuck E. Cheese and celebrated some more. I have NO idea the number of carbs on this cake and that turned out being a big ol' fail. BG = 345!
But we had fun and got it right down with some Humalog so it was all good! :) Overall, it was a good birthday!

Backstory:


We knew that August 18, 2010 was a big day for our family. It was the LAST day before Emma started Kindergarten! I was off work and we had a full day of fun planned to celebrate our last day of freedom! Little did we know that our 3 and a half year old litte boy, Aiden, would be diagnosed with Type 1 diabetes that afternoon and we would spend the next week in the hospital getting his blood sugars leveled out, learning how to check those blood sugars, give shots of insulin, and properly count carbohydrates; we learned words that we had never heard before like ketoacidocis and endocrinologist; and we cried after having to poke our baby boy with numerous tiny needles. It was overwhelming to say the very least. But I have to say, that the stress and anxiety that we felt that first week, was nothing compared to the stress of going home and dealing with the trial and error of learning to take care of him on a daily basis. Compounding that, was a "poor me" and grieving period that I have now learned affects many parents of newly diagnosed T1 kids. I was not only grieving the loss of our son's working pancreas, but also the loss of our "normal" life including the baking and party planning that the kids and I love so much!

Over the previous months, baking had become my connection to my Nana, who we lost unexpectedly earlier in the year. Now I was losing her all over again. But through a network of other D-Moms and D-Dads, we quickly learned that many of the stereo types out there about Diabetes are just that - stereo types. We would still be able to bake and enjoy our parties!

Some of the facts that have been most important to us are that:

Aiden didn't get diabetes because he ate too much sugar. He experienced an autoimmune attack on his pancreas which killed off all the insulin-producing cells in his body. This was important to me because, I'm not gonna' lie, Aiden is a sweet tooth and he comes by it quite honestly. I had a lot of guilt that I caused him to have diabetes because I allowed him to eat so many Reese's Peanut Butter Cups! It was really a relief that it wasn't my fault. That said, our family diet underwent an overhaul. However, it wasn't drastic changes. The changes we made were things that we should have been doing anyway. We try to make sure to eat a balanced diet that includes lots of protein, dairy, vegetables, some fruit, and a lot less sweets.

Although we cut back on the excessive amount of sweets that we did eat, children with type 1 diabetes can eat sugar—we just count the amount of carbs and give the proper amount of insulin to cover it. Of course, too much sugar isn’t good for anyone—with or without diabetes.

There are three things affect Aiden's blood sugar: insulin, diet and exercise. This is one of the first things that we learned in the hospital. And we think about it frequently. It really is a balancing act. And it was a key factor in planning his 4th birthday party.

Planning birthday parties has always been huge deal to me and my family. I learned from my Mom and my Nana to celebrate big and celebrate often! This year was no different except that I knew the exact amount of carbs in everything we had and I worked hard find things that wouldn't be too high in carbs so we could partake in those all-important birthday cupcakes. We were even able to find a sugar-free cup cake mix to that helped too. (Let me take this opportunity to mention that sugar-free does not always equal carb-free, so we had to watch that, but the sugar-free cupcakes were less carbs than the regular variety.)

We started with the theme and it had to be Toy Story! Then we had to find the location. It was very important to us to find a location that would have a pool or some other activity that would permit a generous amount of exercise to help keep his blood sugar in range. The Courtyard Marriott in Fayetteville was more than accommodating for all of our needs! Next, we had to plan the food. Aiden is currently a big fan of pizza. One slice of thin crust cheese pizza was 29 grams of carbs and within the amount of carbs that we like for him to have for a meal. Toy Story apples and carrots rounded out the meal. We used sugar free mixes for our punch, so there were no carbs in the drinks.

So the milestone of his first birthday with Diabetes is behind us! For that we are thankful, but we learned that it wasn't all that different than his birthday parties before, except that he only ate 2 cupcakes (and not at the same time!), we had to give him some insulin before the party, and we had to test his blood sugar a few times. His pre-party blood sugar was 88 mg/dL and his post-party blood sugar was 102 mg/dL. Both numbers were within the normal range! Yay! We would call that a successful birthday party with or without diabetes!!