Fa La La La La...........La La La La.
What have we been doing these past few weeks??? Why.... decking the halls, eating some figgy pudding (yum), being jolly (tis' the season), etc. etc. I love December, even though it may seem a little chaotic at times. I love all of the Christmas festivities, recitals, food, folks, and fun. I especially love how we have a little Christmas devotional every night and try to focus more on the Savior.

A December list
-piano recital for Kaden
-decorate the house
-watch Christmas program with the First Presidency and play games with Darrin, Donae, & Lynn
- made gingerbread house (thank you Costco)
-R.S. progressive dinner
-Went to see a performance at the Hale theater, "The Christmas Carol"
-Ward Party
-Party with friends
-host a visiting teaching brunch (thanks Larisa for the great idea) My menu- quiche (again, thank you Costco) crepes with berries and yummy filling (homeade), fruit salad, pumpkin muffins, bacon and orange juice. I had the three girls I visit teach and my visiting teachers over.
-Christmas carol at the care center (with yw). Kaden will be doing this with scouts this week.
-Visit temple lights and watch Luke 2 (with yw)
- lots of Christmas shopping
-write (boring) Christmas letter. Maybe I'll get creative one year.
-made peanut butter- kiss cookies- yummy
- wrap presents

to come this week
-Hailey's kindergarten Winter Wonderland program
- YW Christmas party- I will host part of it
- finish Christmas shopping
-make treats for friends/neighbors
-drive around and look at lights
-try to figure out how to pack up "Christmas" to take to California

Some pictures of all the festivities.

If you enlarge this you can see a piece of orange candy stuck in Hailey's teeth. Kaden seemed to think that for every piece that went on the house, one went in his mouth. I am guessing that it will be picked at all week. It's not even good candy.

We had to let all three have a turn putting on the star.

The Mesa Temple. It is quite beautiful, and they have a performance every night. I think the youth like to do this every year partially because there are a ton of other youth there.

I get a picture of the kids in front of the tree every year.

I think Kaden is trying to hide his teeth. He read one of my comments about his funny teeth at the time. They have since grown in. Poor kid's going to have a complex.

This little girl was being a stinker. She was "done" sitting in front of the tree.

This was a lucky shot.

The Care center. This was so sweet. This gentleman, named Jack, had a tear in his eye as we sang. He started to sing along. His sweet helper said it was the first time he has sung in three years, since his wife died. I think it really touched the girls.



And this, just because I love these pajamas (from Jill), they are so soft and cuddly and perfect for Ella's chunkiness. And also to show that Ella likes to push her shopping cart. Do you love my bad grammar?


What's this?? Did it snow in Arizona?

It snowed bubbles. Hailey was having the time of her life!

The "snow" was at this performance of "A Christmas Carol". This play was excellent! It kind of reminded me of a Music Circus type place. Thayne was given 15 tickets at work (worth $20 each). So, we had Neil and Heather; us; Rich and Crystal; and our friends, the Flemings, come. (Darrin and Donae saw it the week before). We might have to make this a family tradition. (Heather if you want this cute picture, just right click and save it to your pictures).

We'll see some of you on Saturday-- we are very excited.

Our 2007 Christmas card. (Mom, this is for you).

I couldn't resist

I did this for my kids the other night, and I know they are going to want to see this again, so here it is. They think it is hilarious.

http://www.elfyourself.com/?id=1287952202

Who can solve the mystery of the missing bloodwork?

Right when I was about to leave Tuesday morning, to re-do Ella's bloodwork, the doctor office called and said, "Don't come, we think we found it. We think it may have gone to a different lab. I'm going to look for it and call you back." I'm still waiting for the call. Notice the word "think". Did you find it or not? Why is it so hard to find? Maybe I'm not familiar with the policy and procedures of this place, but this seems a little unorganized to me. Now, even if I do get some results, do I trust them to be accurate? Anyways, guess who I'll be calling in a few minutes. I hate being a nag (Thayne may beg to differ).

Ok- enough of my whining. This is old now, but Thanksgiving was great! It was fun to have Ross and Angela, and Rich and Crystal. The dinner was yummy. I tried some new recipes this year, I think they were pretty good (if I do say so myself). We pretty much chilled out and watched a movie. It was nice and relaxing, just what I needed.

Saturday, the guys watched the BYU football game and the girls (and Kaden) went to lunch and the movies. We saw "Enchanted". I thought it was really cute... Hailey was in heaven.




Ok- in the midst of me blogging, I called Phx Children's and just got a call back. They did get the test results, but gave them to the doctor to review. They said she will be calling me (on her own time of course). Doesn't that usually mean they found something?? I'm actually expecting them to.

Here we go AGAIN!

GRRRRRRR! I called Ella's neurologist office today (for the fourth time), wondering where the non genetic test results were from four weeks ago. It seems they are lost, or perhaps never even turned in. I think I am going to have to walk Ella's blood to the lab for them- they can't seem to get it right! Well, we are off AGAIN tomorrow.

And the good news... the genetic testing came back negative! She does not have prader willis, or fragile x. I pretty much already knew this, but it's nice to say it officially.

We have a diagnosis...

Well, after two years we finally have a diagnosis for Ella. As you may have read in the last post, I went to a different opthamologist on Monday. I was expecting him to finally confirm that Ella was night blind or had ocular albinism..... but this was not the case............after a few minutes of looking into her eyes with a special machine, we have a totally different diagnosis. Ella has Optic Nerve Hypoplasia (ONH). Basically, her optic nerve is smaller then usual. We are very blessed that Ella has pretty good vision, because many children are blind.

Interestingly, this ONH condition is also related to problems with the pituitary gland (the master gland of the body). The optic nerve and the pituitary are in the same part of the brain.

Here is a better definition of ONH.

A person with Optic Nerve Hypoplasia (ONH) has small eye nerves (optic nerves) from the eye to the brain. Some people with Optic Nerve Hypoplasia also have an abnormal brain and a poorly functioning pituitary gland. This page explains the problems that can occur in children with Optic Nerve Hypoplasia. Your child may have none, any or all of these problems in a mild or more serious form. Depending on the person's problem sometimes the disease is called Optic nerve Hypoplasia (ONH), Septo-Optic Dysplasia, or De Morsier's Syndrome

Here are some of things associated with the pituitary that may have a problem:

-Thyroid

-growth hormone

-ADH- controls water in body which can cause diabetes insipidus (totally different from diabetes mellitus)

-sex hormones (testosterone, estrogen, progesterone)

cortisol and adrenal glands

hyperglycemia

After hearing all this you can probably guess that I have shed a few tears over it. However, I am extremely grateful to finally have a diagnosis that makes more sense. I am also very grateful that most of the pituitary stuff can be taken care of with medicine, although it will probably be for life. As you can see from the above red highlight, people with ONH may have none, any or all of these problems. Their vision and brain function also vary. Some are very smart, some have brain damage. It is so individual. It appears that Ella does not have brain damage. After reading many definitions and personal stories of children with onh, it also seems that strabismus, tactile issues, and gross motor delay are related.

Now, I am waiting anxiously for her blood work to come back. Long story, but I'm a little annoyed that I don't have the results already. It's been three weeks since I did the non genetic testing.

I just wanted to say that we feel so blessed to have Ella in our family, she is a joy and we are very hopeful that she will be able to live a good life. We are very glad to finally have some answers. If anyone wants to read more go to magicfoundation.org and click on optic nerve hypoplasia.

Also, interesting side note- Meri's daughter Meredith also has ONH.

BTW- Thanksgiving was great, I'll post some Thanksgiving pics later.

Counting my blessings part two

Although I had to drive in this today, I am thankful that I don't have to drive in this everyday. (actual phx pic)

I am thankful that I could use this... and cruise pass that.

This is where I was going, which I am extremely thankful for.



And after another successful blood draw, I stopped into Ella's opthamologist (on the same campus) because I heard her doctor has moved and started his own practice. However, I've been wanting to see his coworker, Dr. Cassidy, pediatric opthamologist, who was voted this:


Best Doctors in America 2007-2008 . He also makes the Phx top doctor list every year.

Ella is due for an eye exam. This doctor is booked till February, but happened to have an opening next Monday morning on my side of town..... woo hoo.... blessings, blessings, blessings.

I am thankful that this was on my way home... but no samples today, darn.

I am thankful for this forecast.
Wed Thur

52/79 F 48/77 F

And for these people coming to Thanksgiving dinner. Hopefully my turkey will defrost. (sorry bad lighting, or maybe just bad camera).

Counting my blessings............ today I am thankful for clouds! It is overcast and I absolutely love it. May sound strange to some, but when you live in a state that is sunny every single day of the entire year ....clouds make you happy. And to top it off it even drizzled a little rain, right as a friend was dropping her daughter off at my house. You should've seen our excitement.

I was also able to go eat a fabulous (em, em) turkey school lunch with Kaden. (Thayne went earlier to eat with Hailey. It's funny how school cafeterias all have the same distinct, somewhat disgusting smell. Like trash and sweaty kids. It brought back memories.) Kaden gets so excited over these things. I told him this morning that Dad or I would be there. So when I was three minutes late, I could see the concerned look as he scanned the cafeteria for me. He later said, "I was just about to start crying and then you showed up." It's nice to feel loved... or maybe it was just that I had his lunch......no, it was me. :) He is so proud of his mom being there and loves to show off his baby sister. I think he just loves all of the attention he gets from the girls by having Ella there. It seems half his class has a crush on him.....probably because he eggs it on. I see the girls look at him and vie for his attention. One girl gave him her oreos, another said, "Kaden doesn't like these cookies I brought, but he likes it when I bring him different ones". Ok- so maybe he just wants their attention so they will bring him junk. Little stinker.

Callings

Thayne was released after three years (two different bishops), from his calling as Executive Secretary on Sunday. One of the members of our high council came to release him. The Bishop got up after and said "I don't normally do this, but I feel inspired to say a few things." He then gave a nice tribute to Thayne and asked him to come up and bear his testimony. The rest of the day Thayne kept getting 'Congratulations' on your release. Umm.... 'thanks'. It's kind of funny how people say congratulations on your calling, like it's something you aspire for. (I'm sure I've said it before). Maybe it's more appropriate on your release--- he he.
I'm glad Thayne had the opportunity to have some neat experiences and work with some awesome guys, however, it is going to be soo nice to have him home before and after church on Sundays! I finally don't have to get the kids ready by myself -- Yahoo! They are going to call him to teach gospel principles and work with the missionaries (which he has already been doing anyways). Shh, don't tell anyone, it's not official. :)

Our newest niece

Welcome to the world baby Bailey!

Congratulations to Darrin and Donae! Bailey was born yesterday, Saturday November 10th. She weighed 7lbs10oz. She is adorable as you can see :)

Hailey and Bailey....... too cute.

Little Miracles

We have witnessed a miracle this week. I think I've mentioned before that it is nearly impossible to find a vein in Ella's arm. We have been through a surgery, a mri, and a series of blood tests with absolute no luck of getting a vein poked in her arm. The IV has ended up in her foot and neck. The last series of blood being drawn ended with Hailey and Ella in tears and me holding the tears back. It was forty minutes of poking in both arms and feet... with no luck.

Now to this week. After putting it off for too long, I finally made it back to Phoenix children's to get her blood redrawn (is that a word??). We prayed and asked some friends and family who knew about it to pray too. Thayne was able take a long lunch break and come with me. He gave her a blessing... I know sounds a little dramatic for getting your blood drawn, but it was needed.

We warned the phlebotomist that Ella is a hard stick and told her about the past. She put the tourniquet on (at least that's what it looked like, it was so tight on Ella's chunky little arm), and felt for a vein. She said she felt a very deep one and had her partner come check too. Now for the stick..... Thayne and I held our breath while she stuck..... she hit the vein right on and whipped out three vials of blood in less than a minute. It was a pretty deep vein, her needle was all of the way in Ella's arm-- it is amazing that she didn't blow the vein.

Thayne and I were laughing we were so happy. I think the lady was pretty confident about her sticking abilities...which maybe she is a good sticker......but we know it was more then that.

FYI- I have to go back on Tuesday and get three more vials of blood (the genetic testing could only be done on certain days of the week). She can use some more prayers :)

Kaden's baptism in his own words

I [Kaden] felt very special on my baptism day . The people who came were grandpaD , grandmaD , aunt Donae , uncle Darrin , aunt Heather , uncle Neil, cousin Crystal, cousin Aubree , Andrew ,and Aaron. The friends that came were Faith , and Jared. I had a warm feeling inside when I went into the font . I had a smile on my face the whole day. It was the best day of my life.

We had a make your own hoagie lunch with lots of yummy side dishes. Thank you to everyone for your nice gifts and cards. It made Kaden feel very special. Thanks to grandma and grandpa D for coming out to visit us. We loved having you here.

Happy Halloween!

Introducing.... ninja boy.

Butterfly ballerina (or fairy with antennas???)

and little princess (with a princess pout).

We went cheap on the costumes this year. Ella is wearing one of Hailey's old dress ups and Hailey's (as you know) was from a Target clearance. It turned out cute though.

Trick or Treating with the neighbors.

Trunk or Treat last Saturday.

Arizona is a great place to go trick or treating. The weather is so nice now (actually it's still a little warm this year, we could've worn shorts). We rarely even knock on a door because people get out their lawn chairs and hang out on their driveways. It's like a big block party. People really deck their homes out too. Some go a little overboard,with coffins, tombstones, blood and guts etc. I prefer the happy little pumpkin look.

Ok- have I ever mentioned that my son is a picky eater (he he). Well, he seems to be getting worse. This picture below is of all the candy that he doesn't like... I know psycho child. Actually, I'm glad he's picky about this for his sakes, but not for mine. I might have to have Thayne bring it to work.

Here is what he does like. We didn't even go to that many houses. I think people just give away handfuls of candy.

More pics from our trip

Here are a few more pictures of our trip. You may wonder why I always have a bunch of pictures of Hailey and not Kaden--- it's because Kaden is usually "too busy" for pictures. He's going to think Hailey was my favorite. I usually try to get a bunch of Ella too, but she is still a hard target, and most of her pictures turn out with her head turned or something. Anyways, this blog won't let me post anymore pics, but I may post a few above this blog.

Kaden and Hailey had fun boogie boarding. Thayne would throw Hailey into the wave and off she would go.

Our awesome sand castle.

This is at Duke gardens.


The famous Duke chapel.

The museum in Durham, NC. This museum was fantastic. The kids loved it and the adults did too.

This ones for Grandma :)



This butterfly house was awesome.