Here Again

Well, I had (have) a new year's resolution to write on my blog at least once a month. ...... I am only 3 months behind! :)
 A catch up post is futile and most anyone who reads this either talks to me or receives our Christmas card. So let's move forward, shall we? 
We are doing pretty well. Two weeks ago we had a fast trip to Idaho for my Grandma Elison's funeral. Although the mental presence of the grandmother I've loved has been gone for a few years, it is still sad to say the physical goodbye. Grandma loved to learn and she loved to share what she learned. She talked to us about nature and geography, Native Americans and books. I, along with my siblings and cousins, remember one summer when she held a etiquette/manners dinner for all of us. (I'm curious if we had hit a button and she just couldn't take our poor manners anymore.) Just one more thing to teach us. While my family lived in Chile and I was at BYU I had many opportunities to visit Grandma's house. I loved how peaceful it always was. Some of my best memories are sitting at her kitchen counter talking to her while she did the dishes. I loved those talks. I never doubted she loved me.

Her Alzheimer's was triggered by a terrible car accident in 2003. After the accident the disease progressed quickly. Thirteen years later, her death became a blessing after Alzheimer's robbed her of the last 10 years. But 77 is too young for a grandma to die. (Her dad, who passed away only 5 years ago, lived to 100!) Her funeral was a sad occasion but it was nice to see all my cousins and aunts and uncles. We haven't all been together for a long time. Funerals always get me thinking about my own death. Morbid, I know. With this one I concluded that if I can ask Heavenly Father for my death "time table" it would be that I will die when it doesn't cause a huge disruption to people's lives (like when we have small children), before I become a burden to my spouse and children, and when I've made enough of a difference in my family and friend's lives that I would be missed.
Currently, I'm trying to figure out how to best help my Aubrey. Aubrey was medically diagnosed with Autism last Fall. It doesn't bother me that she has been diagnosed with Autism (I've know deep down this was the case for quite a while), but I am bothered that I want to help her but feel so helpless. I feel like we make so little progress. Two steps forward, 4 steps back. She'll be reevaluated at the end of April for placement in an early childhood autism program through the school district. The likelihood is that she will be in school all day, 5 days a week. When I was first told that I bawled. She'll only be 3! I wasn't anticipating "losing" my baby that fast. But I also want to do what is best for her and what will help her make the most progress and reach her fullest potential. I'm glad I had a year in a autism preschool class (just as an aide); it's come in handy. But I still feel so clueless. What are the right therapies for her? How do I help her reach her fullest potential? How do I help her acknowledge people? Will she ever talk? Will she ever say "Mommy" or "I love you"? I don't know. I do know that I love her imeasurably. And that this is so hard. Thankfully, the medications she is on have controlled all her seizures and she hasn't had any since December 10th! Such a blessing!! (Of course I wonder if the seizure medication interferes with her learning/processing/speaking.... One thing at a time...) Ah, the things you never expected to deal with in life... It's amazing how Heavenly Father makes us strong enough for the task at hand. Or at least the next step. 

It is late but I have my first blog of the year! Woohoo! :) Being Easter Sunday I feel impressed to add my simple testimony of my Savior. Because He lives happiness and heaven are possible. Goodbyes are not forever. Because He lives there is hope. Hope that I can change and be better. Hope that with His help I have the strength to bear and learn from my trials. My Savior knows my name. He knows my struggles, my heartaches, my desires, and my joy. In Him, I have an unfailing and perfect Friend.I know that my Redeemer, Jesus Christ, lives!

In the Quiet

 I'm sitting here at the top of the stairs, outside of Aubrey's room, in my silent house. I'm almost halfway through my nighttime shift of Aubrey-watching. Jeremy will be up at 2:00 to let me get some sleep. Aubrey is currently having an EEG - at home. How great is that? We just have to watch her to make sure she doesn't strangle herself during the night.
 So the last two weeks there hadn't been much improvement. 10-25 seizures EVERY day. Then miraculously, yesterday there were none. ZERO. And today there were ZERO. Truly a miracle. And I can barely describe the difference. Yesterday I got her to laugh by blowing on her tummy. Is there a more beautiful sound than a baby laughing?? Today when I took her to the park she made eye contact with me almost the entire time she was in the swing! It was awesome. And for the first time, she reached up to grab my hand so I would walk with her somewhere. It melted my heart. I love this girl. This is the little girl who is trapped in a locked room of epilepsy. When the seizures are gone she gets to come out and shine. These two days have been BEAUTIFUL.
 The tricky part - what changed? The only thing that was different is one of the medications was finally tapered off. So... an ANTI-seizure medication was, in fact, causing the seizures??? And what timing, huh? Just as we get her a third EEG to "map" where the seizures are happening (seizures that have been going on many times, everyday, for three months), they stop. I don't want her to have any more seizures. But it would be great if this EEG could be beneficial to her treatment.
It's like having your car stop making "that noise" as soon as you take it to the mechanic. Ah!
We will see what comes of this.
 But I am trusting Heavenly Father is aware of her and of us and this timing is for the best. It will all work out. Just wish I could see how. :)
 I am so thankful for loving family and friends to help us. Even in the midst of this struggle, we are blessed beyond measure.

Too Much

 Okay, so this has probably been my longest (worst) stretch for not posting. (One picture saying I'd write more doesn't count.) I don't know why I neglected writing between last October and March. Just too lazy, I guess. Since March, well, there's been a lot going on... to say the least. So here's a not-so-short summary of our "stuff."
 Quick background for Aubrey: I've been concerned about some of her developmental milestones for a while. Around 6 months I just had a feeling that something was just not quite right, but I couldn't really articulate what it was. These concerns continued to grow and culminated when she went into Nursery at church at 18 months. She didn't interact with people very much, didn't take an interest in other kids or animals, didn't play, and she only said 3 words. Not knowing what else to do or really where to start, I looked into an early intervention program and got her set up to work with a speech therapist. She started the therapy in March (with 3 or 4 words) and by July had 40-45 words! It was great progress.
 Now back to April. My brother had just graduated from BYU and he, another brother and my parents had stopped by after graduation that Friday night. Saturday morning, April 26th, Aubrey was really out of sorts and extremely grumpy. Extended family left, I had to take her to some stake baptisms with me, and then I came home and put her down for a nap. She slept for FIVE hours!! Yes, it was an excessive nap but I just attributed her grumpiness to a lack of sleep, for which she was obviously making up for. I was about to run an errand but I thought I should probably go get her out of bed or she'd never go to sleep that night. I took her out and she still was groggy and not happy.
 I took her downstairs and held her and tried giving her a drink. As she drank (just after) it looked like she was gagging/choking on the water so I started to pat her back... but her lips were blue, her head was limp, and her whole body convulsing. She was having a seizure!! I started screaming for Jeremy (who was right in front of me) and told the girls to pray! pray! and I called 911. I was completely freaking out. It probably lasted 20-30 seconds and then she was just limp. Completely limp. No response. No moving. Nothing.
 The firemen and EMTs arrived and checked her out and said they thought it was a febral seizure, one related to having a fever (even though she hadn't had one) and that those are not uncommon in young children. But they also said she still needed to go to the hospital; did we want her to go in the ambulance or take her ourselves. We said we'd take her. They left, we were packing everyone up to get into the car, and she had another one. Her eyes rolled back, it looked like she couldn't breathe. Jeremy called 911 back (they had barely left our neighborhood), and I call a neighbor to take Isis and Elise. EMTs came back and said we didn't have a choice, they were taking her in the ambulance, and put in an IV. I rode with her to Summerlin. While in the ER she had another seizure. This time they gave her anti-seizure medicine and it also knocked her out. She had a CAT scan and lumbar puncture (spinal tap) and took blood. We were admitted and spent a restless night waiting for morning when more tests could be done. Sunday morning they sedated her and did an EEG and MRI. She woke up MAD! The rest of the time was a blur. Word spread quickly. My mom turned right around after getting home and came back to stay with the girls. I received an outpouring of kind texts from church members.
 All tests came back normal- no infections, no lesions. So that was good. But it also left us with no answers to why she had the seizures or if she would have any more. We stayed in the hospital until Monday afternoon for "observation." I was torn between not wanting to put her on anti-seizure medicine (since no one knew if she would have more) and also not wanting her to have any more. We were discharged Monday at 4:00pm with a prescription for an "emergency" seizure medicine in case she did have any more. We dropped off the prescription on the way home. I was going to give Aubrey a bath to clean out the EEG goop in her hair but she almost jumped out of her skin when I tried to put her in. So, I sat and rocked quietly with her instead and talked to my mom. We hadn't even been in there for 10 minutes when Aubrey had yet another seizure. This time, though still upsetting, instead of reacting I just acted and immediately laid her on her side and talked to her. 911 again. Another seizure in the ambulance. Another when she got back to the hospital and while putting in the IV.... We hadn't even been gone long enough for them to clean out the room we were in, so we went right back to the same place. We weren't discharged until Wednesday night.
 We left this time with a diagnosis of epilepsy, anti-seizure medicine, and a lot of questions. There is no known cause as to why she started having the seizures. Epilepsy is typically defined as having 2 seizures (within a month) that were not caused by any known medical condition. Aubrey had 6 in 48 hours. It was rough. When we saw her pediatrician 2 days later, she said that seizures often cause the person to lose somethings (speech, skills, etc) but those should return within 2 weeks. And by day 4 out of the hospital, Aubrey was mostly back to her very happy, calm self. The medicine seemed to be doing its job.
 Then May 13th happened. It was a few minutes before we were going to pick Isis up from school. Elise was helping me put dishes in the dishwasher and Aubrey was playing with a musical table she loves. I put a dish in, heard a thump, and said, "That sounded like it hurt." Then I looked up to see Aubrey on the floor jerking. This time it was just me, alone. I was crying, not knowing why she had another one even on medication, if I should go get Isis, what I was supposed to do. I decided to get Isis, and that turned out to be the best choice. We picked her up, walked over to the park right next to the school, and in 10 minutes she had another seizure. I unhesitatingly administered the emergency medicine, talked calmly to her while I had a friend call Jeremy. And then I freaked out again. It was like I couldn't think clearly to make a decision. My dear friend Amy offered to drive Aubrey and I to the hospital, and another kind lady at the park, whom I'd talked to for the last few weeks, offered to take the girls to her house. And that's how that it happened.
To sum up this whole episode, Aubrey had 10 seizures in 17 hours and we were in the hospital for another 3 days. She left with 2 additional types of medicine. One of the medications left her looking like she was "drunk." She was a 2 year old in a 6 month old's body - she couldn't walk anymore and for 2 days couldn't even sit up on her own. That medication was quickly reduced but wasn't completely gone for another 9 weeks.
 After coming home from the hospital this time, I woke up multiple times multiple nights, sometimes leaping out of bed, because I thought Aubrey, or the girls, or even Jeremy were having a seizure. I never wanted Aubrey out of my sight. Every sound she made, made my heart stop for a moment. Living worried and scared was exhausting and stressful. Some journal entries from those weeks:
"I want so desperately to do exactly what's right for Aubrey. I hate that what's preventing her seizures is also making her not the Aubrey she was a month ago. She has lost coordination, is very unsteady and unbalanced when walking, no longer runs, is very irritable, she babbles less, it's harder for her to fall asleep, her smiles and laughs are rare. I just want my happy Aubrey back. I want her to be healthy again. I want to take care of her in the way that's best for her. I am overwhelmed and sad and discouraged and tired and lost over all of this. I feel helpless and useless and unable to give my sweet baby what she needs. I can't fix it."
"I feel like I'm being an ineffective mom to Isis and Elise because my thought are consumed iwth watching Aubrey and what do I do for her, and that I can't do the right thing for her because I don't know what that right thing is. I just feel numb and blank."
 It was a hard, hard month. The good news is, the medicine was effective and she is only taking 2 of the 3 she started with. She did have one more "episode" of 5 seizures on July 10th, but that appeared to be because she was taken off one medication.
 I have an overflowing feeling of gratitude for those who helped us during that insane time. We were the recipients of such genuine concern and love and help. "Thank you" is so completely inadequate. I wish I had the words to express how profoundly grateful I am for all those who helped and kept Aubrey and our family in your prayers.
 And as of today? Well, these last few weeks Aubrey has been having what looks like to me "mini seizures" and we're working on figuring out what in the world is going on. All those 40 words she had in July? Gone. She will finish lines to songs, but all spontaneous speech is gone. Last Monday I took her to be tested for autism. This is something I already had a feeling about back in March. She scored "mild to moderate concern." Not very helpful.... but now she'll have a behavior specialist come work with her as well as her speech therapist.
 My feelings? Ha. Where do I even begin? The autism part - I'm sad. (That's an understatement.) She is not severely autistic. I've seen and worked with those kids. But life is just going to be a different kind of hard for her. I want her to have friends and be enjoyed by other people... and that may be one of her biggest challenges. I'm sad that she won't have that same sisterly relationship and playing that Isis and Elise share. I'm sad her big sisters want to play and interact with her and she rarely acknowledges they are there. I'm torn with telling others Aubrey has autism because I don't want anyone to look at her differently or condescendingly or to treat her any differently than they would any other beautiful 2 year old girl. But I also want there to be compassion and understanding that she is always just going to do things in her own Aubrey way. She is different and there's a reason she acts the way she does. I don't want people thinking there is something wrong with her. So where does that leave me? During the week I almost convince myself that she's okay and that we've made a lot of progress and really she'll be just fine. But then I go to church and see all the other kids her age (and now some of the younger ones) doing the things she should be doing... It's all I can do every Sunday not to bawl my eyes out. As for the epilepsy, I just wish we could get some answers and get that under real control because I don't think we are going to  make much progress developmentally if she keeps having seizures. It's one more thing hard thing for her. I am hoping she will grow out of it because that is a possibility.
 I'm tormented between feelings of being grateful we live in a time when there is medicine and therapies to help her, but why does this have to be her lot?, and I am so grateful my challenges are not the trials other people face, but why don't I feel that grateful all the time?, because for me, right now, this is hard and sad and heartbreaking. Someday we may be able to look back and see the reasons, see the blessings that resulted from this trial. But today is not that day. Today I am just a mom who cries because there's nothing I can do to help my baby.

Starting Over

I am so far behind it is futile to attempt a "catch up" post. Therefore I will start from now.... almost. It is really late and I'm tired. But to get back in the swing of things here is a picture from our vacation last week with my family in California. There will definitely be more to follow. :)

The Tooth Necklace

Once upon a time there was a little girl named Rachel. In 1st grade she learned that if you lost your tooth at school you got to go to the nurse and get a tooth necklace. One day Rachel had a VERY loose tooth - at school! Although loose teeth were one of her least favorite things, she toughened up, went into the green tiled bathroom with florescent lights, looked in the mirror to pump herself up, and pulled out that tooth. She excitedly went to tell her teacher she had just lost a tooth and needed to go to the nurse.

"Ms Williams I..."

"Not right now."

"... But I just lost my tooth!"

"Go sit down and be quiet!!"

Dejectedly she went back to her seat. Little Rachel never got that tooth necklace.

The End.

Or is it?

A little while ago we received a book from my mom called "Fancy Nancy and the Too Loose Tooth." It was a similar story to the one above but with a nicer teacher and a happier ending. (We love Fancy Nancy books at our house.) In the book Nancy is determined to not loose her tooth at home because of her longing for a tooth necklace.

It was a fun comparison when Isis got a really loose tooth and wanted it to fall out at school and tried to be careful with it at home. So imagine our delight when 2 weeks ago it fell out just after she arrived at school. And joy of joys, she got to put it in a tooth necklace!!! Isis was quite proud to be wearing it all day long.

I may have been more excited about it than she was. (Ha! Take THAT Ms. Williams! If I can't have a tooth necklace, my daughter sure will!!) :)

(No childhood trauma there.....)

Lots more pictures

I DO NOT know how we have (had) this many shoes in our house. Sheer insanity. I was seriously going crazy since the cutie in this picture loves to wear a different pair of shoes every 10 minutes. I lined them up just to see what we had, pick the keepers, and give away the rest!

 Elise was simply amazed there was a little toilet at the store.

As a side note, as of late Elise somehow needs to use the bathroom in EVERY public place we go.

It makes for LONG errands.

 What is big sister eating?

 Cookie dough? Don't mind if I do.

 Big sister loves me.

 Now that Isis is gone all day at school, we do "Elise School" at home.

If I let her, Elise would make volcanoes every day.

 Interesting but bad tasting... :)

 Elise does a really good job writing her name and letters.

 These are traced but still shows good fine motor skills.

 Aubrey LOVES!!! the swings at the park! LOVES them.

 I was impressed with Isis' "signature."

 This is how Aubrey felt when she had an iTouch in each hand and I wouldn't let her have my phone too.

 This is what my girls were doing while I talked to someone at our local nursery.

They have a deer family, fairies and fairy lawn furniture. :)

 

 My helpers

 How baby looks after "helping" Mommy in the yard.

 On the same day. We didn't get any cleaner at dinner. :)

 A leisurely ride through the nursery.

 Cheering on Grandpa at the St. George Marathon.

 My dad finished his 2nd marathon 10 minutes faster than his 1st one at 5 hours 24 minutes! Go Daddy!

I have no desire to ever run a marathon, so I'm all the more impressed by those who do. :)

 We walked around the St. George Temple while Grandpa cooled down. :)

FIRST GRADE!

I do not know how this beautiful girl grew up so fast but here she is already in 1st grade.

She was super excited to start school.

 I love my girl!

The year has started off well. She likes her teacher Miss Peters and is doing well. I just can't believe she's this big!

Rain!!!

The day before school started we got a FANTASTIC rain storm. I know it may not be a big deal for a lot of people, but when you live in the desert this is HUGE. We live it up when it pours. And because it is such an uncommon thing you notice that water definitely has a smell. And it is WONDERFUL... one of my favorites. 

 Yep, that's our street.

 It even ended with a double rainbow. How perfect is that?

Picture Purge

Here I am again, dreadfully behind. SO... here's how our summer ended. :)

Our pantry seems to be a great hang out spot. Hang out locations tend to get messy...

 and require a baby sister to help "clean" up

 I can never get my pound cake to come out of the pan completely clean... but this one did! 

Which meant it had to be documented. :)

 I also had to have proof that at least once in the last 4 months my kitchen counter was completely clean!

 Lots of swimming. We probably could still be swimming but no pools are open.

Pity.

 The girls posted this sign on their door:

"No Grown Ups Only 3 Year Olds"

 We've had issues with someone cutting open the emergency fire gate by our house and I wanted to catch the culprits. So we set up "spy" cameras and some trusty spies.

 Isis viewing our surveillance video.

 Sisterly fun.

 I took the girls on a "camping trip."

We went fishing and cooked our catches over a fire.

 We "slept" in a tent and told ghost stories.

Elise's ghost story: "Once there was a princess named Sparkles. She walked in the woods. The a wicked witch and a ghost captured her in the wicked witch's house with chains and buckles. And the wicked witch killed her with blood."

Surprised, I asked, "A prince didn't come save her?"

She solemnly and sympathetically shook her head. "And the prince come and the ghost kill him with the prince's sword."

Where did this girl come from?? 

 S'more's of course.

 And we went on a bear hunt. Which apparently scared Elise; yes, the same Elise who told me the aforementioned gruesome story.

 My good friend Sean and his wife and kids stop by for a quick visit as they were driving through.

This is one of the big perks about living in Las Vegas.

(Isis took a pretty good picture, right?)

 Our neighbors, who we are getting to know better, brought us an ice cream basket to start off our school year. How cute and sweet is that?

 I found Isis asleep at the foot of our bed one night around 3:00am when I got up with Aubrey.

I have NO idea when she came in. :)