Monday, March 27, 2017

A Thought on Autism

April is Autism Awareness Month, with April 2nd is World Autism Awareness day, which are coming up. When I think of valiant, I think of those struggling with this disorder and their families. Every day we try, fall short, just to try again. Sometimes we have a milestone, a victory if you will. It could be something small like letting us brush their hair without a fight, all the way to a new word, (spoken in context no less), to potty training or a week without meltdowns. 

The valiant are the other children who stand up for those with autism who maybe unable to defend or explain for themselves. These could be classmates, church friends, neighbors, or siblings. Heidi Anne had an experience where a child (knowing that her brother has autism) told her "Your brother's a retard!!" She  replied "No he's not!" then told the teacher. Heidi Anne explained to me, she didn't know what the word retard means, she just knows it isn't a nice word. Now this is a little girl who gets bullied or pushed around by others constantly. But don't insult her baby brother! I couldn't be prouder of her. 

To me a coward shrinks away from the fight. The cowards are the ones that make rude remarks regarding our special children. They are the ones who glare, whisper, or talk behind our backs. A coward chooses to stay in the dark regarding autism and it's fellow disorders. 

The valiant keep going out into public despite the difficulties this can involve, exposing their children to the world. Because the world won't adapt to them. They must learn to navigate this mad environment while we, as parents, can still guide them. You, as a special needs parent, are among the valiant in my book. 

Saturday, March 25, 2017

Let the Insurance Fun Begin

Next week will be BUSY!! 
The 28th we have Rory's Speech Therapy (a real speech therapist) assessment.
The 29th we have Early Intervention 
The 30th we have his first ABA appointment-Maybe

I need a real life besides appointments and errands. Any suggestions? Anyone? Sigh.  

With all these up coming appointments I thought it best to call our insurance provider on Monday to find out what limits and costs we're looking at. For speech therapy he's only allowed 20 sessions per YEAR. It doesn't matter if the session is 30 minutes or an hour, he's only allowed 20. That's roughly 1 session every 2.5 weeks. 

I verified that he's allowed 600 hours of ABA therapy a year. That's only 11.5 hours per week, way below the recommended 15-20 hours per week. I'm hoping they can teach me some skills so I can make up for the lack of actual 1-on-1 session time. 

Want to know the fun part? Our plan only allows for individual deductibles and individual out of pocket max, not a family one. So each person has to hit their own deductible and out of pocket max, which is more costly than the family deductible version. Yeah. 
On Friday his Speech Therapist's office called back with bad news. Speech therapy wasn't covered under our insurance plan unless the need for therapy was due to an injury or illness. That led to me spending over 45 minutes, 1 customer service rep and 2 supervisors researching if autism is considered an "illness" with the insurance provider. According to their findings, as long as the therapist code it under Autism, it should be covered. Should is the key word. I called back his speech therapist and gave them the new information. 

The insurance rep uncovered additional bad news (because they're an insurance company after all). The place where we are planning on getting Rowan's ABA therapy is out of network. Yeah, we're still working on that one. The question now is do we go with our original therapist or do we try to find 1 of the 6 in-network providers? 

Update: I did find the 1 provider with a location around our preferred area. They have a wait list of 6-8 weeks. I went ahead and placed Rowan on it, just to be on the safe side. I'm betting we'll have to go with this new provider, like it or not.
For Early Intervention this week we mostly reviewed Anastasia's new goals for the next 6 months. She meet or surpassed all of her goals but 1 - the tongue thrust issue she has when she eats. Anastasia's new goals are: 

  • Cruising (Walking along furniture for support)
  • Walk at least 5 feet unassisted 
  • Sitting up with no hands to balance herself
  • Eat table food
  • Drink from a real cup -- They brought a special cup to help aid her and Rowan to drink from.
On Friday Heidi Anne had parent teacher conference. She's doing okay in school. She either gets A's or C's, there is no in between with her. I'm trying to get her on a 504 Plan since a recent re-evaluation on her ADHD revealed that she's gotten worse and she now has anxiety issues as well. The hope is; to help alleviate some of the stress of testing, doing verbal tests versus written ones, gentle reminders to turn in her homework. Once we move she'll start therapy to aid Heidi Anne to control her anxiety and rein in her ADHD. 

We had plans to go to Bear River Parkway Trail and park, but then it snowed and rained. Every time we make plans as a family to go to the park, it rains or snows. So the next time there's bad weather, just know, we more then likely had made outdoor plans for that exact moment.  

This weekend I took Heidi Anne to go see my first movie in the theater in nearly 6 years! It was Beauty and the Beast. Yes, I am one of those people who've been anxiously awaiting the arrival of this life action version of a Disney classic. The cartoon version was my first movie theater experience. Needless to say, I love this movie. 

I did learn something, I haven't passed the love of this movie onto Heidi Anne. How do I know? Because just before a musical number started I would accidentally start humming the tune. Towards the middle of the movie Heidi Anne looked at me and asked in awe "Mom, how do you know all these songs?!?" I told her "Ssshhhh, because I'm psychic." To which she gave me a smile and a well deserved eye roll. 

Tuesday, March 21, 2017

Moms & Muffins, Anastasia's New Trick, and Silly Rory

 On Wednesday Heidi Anne's school had a "Mom's and Muffins" event. The kids could bring their Moms, Aunts, Grandmas, ect. A few kids came with their dads, which I thought was sweet. Faculty took photos of everyone, I didn't even think to snap a photo myself. It was so crowded! More crowded than Dad's and Doughnuts. I couldn't find a place for us to sit. Luckily, we found some friends who made room for us to sit by them. It was nice to catch up with them in person instead of just Facebook. 

Anastasia has learned a new trick! She's able to sit up with assistance. Char brought up Rory's old walker toy. Anastasia fell in love with it. She started sitting up to play with it by herself (as long as the walker is supported). Rory and Anastasia had their first feud regarding the toy. Both of them wanted to play with it and neither wanted to share. Eventually, Rory tired of it, leaving Anastasia to have it for herself. 
She showed off her sitting abilities and her traditional crawling skills to her physical therapist. Who said the way she's crawling is perfect! She's also starting to go into a sitting position from a crawling position. Yeah for tiny Anastasia, she's almost on par with her 9-10 month old peers. She was also weighed today and is 17 pounds 3 ounces. 
Rory was in a silly mood this afternoon. He was riding everywhere in his car. It reminded me of how someone is learning to play Mario Kart. He'd go forward at full speed, run into an object, then slowly back up. Just to repeat the process over again. He thought it was hilarious.
Then he switched to playing with the ball. He'd grab the ball, throw it, then chase after it himself. The dog began to go after the ball, thinking someone was playing fetch with her. Slowly, Rory's game turned from chasing the ball to playing tag around the house with the dog. Who kindly went along with it. 
After the dog was worn out, Rory played with the balloons. He'd pull them down to his eye level, then release them. I could get him to say "Bye Bye" to the balloons as they floated back up to the ceiling. Rory was just in an amusing mood and I loved every second of it!

Rory and Anastasia were each given a new sippy cup by the nurse who comes to weigh Anastasia each week. (Bet you can tell which one belongs to whom). It's become their water only cups. Which has led to Rory working on a new word "Water", only it comes out as "wa'er". Unless you spend a lot of time with him you wouldn't know what he's trying to say. But Rowan is trying, that's the important part! 

Friday, March 17, 2017

Rory's 2 Year Check Up

Rory had his 2 year check up on Tuesday. Doing those developmental checklists just seems to rub in my face "Your son has Non-Verbal Autism"! We even asked if we had to fill out the forms, since the doctor already knows that Rory has autism. But the answer was a monotone "Yes." I'm sure the staff is asked constantly if papers really need to be filled out. Sometimes when you already know your child is behind, sigh, you just want to skip that part of the appointment. But we didn't, Char filled out the forms, shaking his head every now and then.
The doctor came in, checked to see how our waiting list for therapies are going. Our honest response was "Slowly"! The doctor suggested she put in some referrals for Rory's lack of speech with an actual speech therapist and occupational therapy for his fine motor skills. She said insurances tend to cover "medical" issues even through they are really mental / Autistic problems. All of this will be in addition to his weekly Early Intervention sessions and his 15-20 hours of weekly ABA therapy. Which will be close to 18-23 hours of therapies every single week!

We started getting him undress to weigh him and see how tall he is. He began to freak out. I told him, "Buddy, this is the easy part!". He weighs 25 pounds (30% percentile) and is 36.5 inches tall (71% percentile). After we had a chat with the doctor and she looked him over, the poor guy got his immunizations. He was strong, we had to hold him down, he still wiggled free just as the nurse injected Rory. So the shot went in at a bit of an angle.  

We had time to kill until my next appointment, so we wandered around an uncrowded store for a bit. Just trying to get Rory used to unfamiliar environments when things are slow to reduce meltdowns. As we were leaving the store Anastasia and Rory became very agitated. One thing I've learned is Grumpy Wegeners'+ Food = Solution to everything. 
We tried experiment number 2. Going inside of a restaurant instead of going through the drive thru. It was Rory's first time at a restaurant in a very long time. (Last time didn't end very well. Can you say "Meltdown"?) He surprised us by being fairly well behaved. Of course we sat way back in a corner far away from everyone and the chaos of the line as much as humanly possible, so that may have helped. Anastasia was very happy after getting 2 bottles while the rest of us ate. 

Next was my doctor's appointment. I thought it was at 1:00, turned out it was at 1:30. We ended up in the waiting room for 45 minutes. The babies got stir crazy! Rory kept saying "Milk" but I believe it meant "Bored" since we gave him milk and he wanted nothing to do with it. I walked him around the waiting room in his stroller. 

Anastasia learned a new trick. She learned to wiggle free of the car seat and crawl on the floor. Anastasia then crawled underneath a table, making it hard for me to grab her. Tricky girl. We decided to divide and conquer. Char took Rory for a little drive while I took Anastasia into the appointment with me. It worked out pretty good. On the way home they finally fell asleep. 

Can I take a moment to say, Daylight Savings changes SUCK!! Especially when your children are little and have a set routine. 

Tuesday, March 14, 2017

Rory's Party and Weekend at Grandma's

Everyone (but Char since he had work) spent the weekend at Grandma's and celebrated Rory's birthday. We got down there on Friday afternoon and the weather was perfect for playing outside with the cousins. Rory discovered a lot of sticks and the sandbox in Grandma's backyard. He had tons of fun exploring the outdoors! Rory discovered the trampoline's magical powers thanks to Cousin H's help. She would gently bounce whenever he came on the tramp.
Grandma brought out Rowan's birthday gift a little early, a ride on car, for him to play with. At first he couldn't propel himself, therefore, someone would have to push Rory. He'd smile so big when anyone would move him around. (The pictures are a little blurred because I was holding Anastasia while taking them outside) 
After we played outside we came in to play some more. The girls played lots of games. One of them was dress up using things from Grandma's around the world travels. Here's Heidi Anne in head-dress from the Middle East. The girls (minus baby Anastasia) played for hours on end. Anastasia crawled around the place. 
Heidi Anne would pause her games to come push Rory around and try to teach him to move the car by himself. She's such a good big sister. Something eventually clicked and he began to move backwards, but slowly learned to go in whichever direction he choose. Later that night we had pizza for dinner and the cousins had to go home. 
Saturday morning was busy! Heidi Anne helped make French toast for breakfast. Where Rory accidentally threw a plate, (which shattered). Later Heidi Anne went to the store with Grandma to get supplies for Rory's party and to pick up a party guest, Cousin G. Since I have a nasty latex allergy, Rory's never really seen balloons before. He got super excited when he found the Mylar balloons in the living room. He excitedly bopped them, held them down then giggled as he watched them float "magically" back towards the ceiling. 

Family began trickling in for the party around Noon. Just in time for the barbecue lunch. There were corn dogs baked in the oven, hot dogs and hamburgers / veggie burgers. It was such nice weather (in the 60's) we were able to eat outside. Since it gets rather cold at night, we weren't bothered by any flies or bees. 
After lunch we came inside to open presents. Rory hasn't gotten the hang of unwrapping gifts. Heidi Anne or myself would assist him. He got a farm puzzle, a dinosaur puzzle, and one that makes sounds of different vehicles like; fire engines, trains, motorcycles, ect. 
He also got a stuffed frog and a book, to share with Anastasia since their birthdays and ages are close together. Oh and a magic color pad, all you need is water in a special marker and the black and white page is filled with colors and pictures. (Sorry there aren't more pictures, I was juggling Anastasia and the camera). 
After presents came cake! Well, cupcakes to be more precise. Which has been our tradition since Heidi Anne's first birthday. Rory just licked the frosting off his cupcake, then grabbed another one before anybody could stop him and licked the frosting off of that, too. He tried for a third but was intercepted. That little boy got chocolate frosting everywhere on his hands and face! 
After cake almost everyone had to get going. Heidi Anne went to go spend the night with Cousin A. Rory spent the rest of the afternoon and early evening playing with Cousin G. Just as the kiddos were finishing up their dinners, Cousin G's parents came to get him. They brought my new niece (from now on Baby Cousin E) with them. She was adorable! I didn't get a chance to hold her because Anastasia wouldn't let me. In fact, Anastasia was super clingy to me this weekend. Maybe next time I see them I'll get to hold Baby Cousin E for a bit (if Anastasia let's me). 

Funny Story: We drove home Sunday after we picked up Heidi Anne from her sleepover with cousin A. The long drive was a more difficult then usual, because I had the balloons blocking my review mirror and the sound puzzle would randomly play sirens! Therefore, I never knew for sure if it was a real emergency vehicle trying to get my attention or just the puzzle. I kept envisioning my self getting an evasion from police charge. Not to mention just how ridiculous it would sound to say "But officer, I thought you were my son's puzzle acting up again, I promise!" 

Sunday, March 12, 2017

Little Milestones

 Anastasia has started to crawl in the traditional way (crawling on hands and knees). Until now she's been getting around via army crawl. She's super fast and loves to get into everything! Sure, Anastasia refuses to eat table foods (she's still on baby food) but she has no problem putting random things in her mouth. Go figure. 
Rory has started a new game. Which is huge! He gets a wipe and pretends to sneeze. Then we say "Bless you." He laughs and repeats the process. I drop everything to say "Bless you" when he plays the game. Because it's him trying to interact with us. Even for a brief moment, it means the world to me.
Sometimes, he'll randomly pretend sneeze and looks at me with expectant eyes. As soon as he does this I respond "Bless you". Then he returns to what he was doing. Almost like he's making sure I'm still there for him. Maybe it's checking to see that I'm paying attention to the smallest detail. Which I try my hardest to do. 

He's started trying to say the words Thank-you, but it comes out more like "Deek-Do". I think it's just his echolalia (repetition of words, randomly spoken), right now. Why? Because he says Deek-Do at chance intervals, no rhyme or reason to it.  
We just got the movie "Moana". Heidi Anne loves it. Rory pauses what he's doing whenever a song is on or if there is Polynesian sounding music playing in the background. He's language therapist believes it's due to the rhythmic patterns of the music. Who knows for sure? All I do know is he gets mesmerized by Moana and we've watched it at least 4 times in less than a 48 hour period. No other movie has entertained both Heidi Anne and Rowan simultaneously. 

Saturday, March 4, 2017

Rory's 2ND Birthday

Rowan can't really open presents, or if he does he fixates on the new toy and the other gifts are left forgotten until he tires of the toy. Knowing this we did an experiment. We put all his unwrapped birthday gifts in a big box. We let him open the box and see all the new toys. He excitedly pulled them out of the box and handed them to us to get out of the packaging. Wait for it to be opened, then still got fixated on the toy. So we had to bring out another present for him ourselves. Might not have been traditional, but it worked out perfectly for him. 

We got him some matchbox cars.
His own toy plane (he loves the one his language therapist brings for him to play with). 
helicopter because he loves to make the propellers spin. 
The plane and helicopter turned out bigger than expected. But that's what you get with online shopping. Better then smaller than expected. 
Here are the girls watching him open presents. 
Anastasia looking with glee at all the new toys that she'll inevitably get to play with. 

We made a chocolate cake for him. Unlike last year, he LOVED the cake. He got so messy. Next week we're going to have a little extended family party with his cousins. It'll be his biggest birthday party yet. 
I don't know what causes autism, (there are theories a plenty), to be honest we may never know. To me, it's like closing the barn door once the horse is out. My only son already has autism. So we adapt. In 2 weeks he starts ABA therapy. We'll travel 2 hours a day, every week day,until we move (in like 3 months), for a 3-4 hour session. Per DAY.
Which I'm honestly excited for. That was my gift for his birthday.

Tuesday, February 21, 2017

Anastasia's First Birthday Week

On Tuesday Grandma and Grandpa came up to watch the kiddos while Char and I went on our first date in over 18 months. We went to a local restaurant for a late lunch / early dinner. Afterwards, we ran to the store. It was the first time in what feels like forever that we went shopping with just the 2 of us. When we got home the Grandparents had to leave to beat the winter storm.  

I also found a location Rory could start his ABA therapy in roughly 4-6 weeks. Which is great on one hand but the downside will be driving down 2-3 times a week. Oh, and having to drag Ana-Rose along, too. 
 Milestone Wednesday! Rory and Anastasia both got up at 5:00 am this morning. (My children don't know how to sleep properly, I swear.) Anyways Rory did 2 amazing things this early morning. 

Normally, in order to have Rory say "Go" someone else has to chant "Ready, Set, ...." and then Rory promptly yells "GO!" This morning Heidi was playing fetch with Rory, (Heidi was the one fetching the ball). When out of nowhere, he yells "GO!" and threw the ball. It was amazing! It's the first time he's said "go" on his own. 
Then he surprised us again by saying "Mom"! I haven't heard him say Mom or Mama since he was 16 months old. That's nearly 8 months! He said 2 words this morning! It's a HUGE accomplishment. 

Today was language therapy for Rory. He's getting more used to the therapist. He doesn't need to sit on my lap anymore, he goes right to her as she comes in. He's so comfortable with her he goes right into her bag of toys and books and starts bring out what he want's to play with. (He's also beginning to think everyone that comes over is here for him). 

Anastasia is making strides as well, her physical therapist is working on getting Anastasia to sit up on her own and to crawl. This translates to more stretches and exercises I need to do with her 4-6 times a day. (To help me remember to do them that frequently I do them when I change her diapers.) Right now her hips are to stiff to support her in a sitting position and the top of her body, from the shoulders up to her neck, are to weak to stay upright for long periods of time. We use a bumbo to also help her strengthen those muscles.  

*UPDATE*-"Mom" is what he says when he has a problem. I discovered this when he brought a toy that was turned off over to dad and Rory said "Mom" as he gave it to dad. Then later Heidi and Rory were playing blocks when they toppled over. He then looked at her and said "Mom" until she stacked the blocks up again.  

Thursday Rory decided that it was No Clothes day. Seriously, I put him in 3 of his favorite outfits, (along with 1 he isn't fond of). Nothing stayed on him for more than 20-30 minutes. I'd put him in clothing, tend to Anastasia, turned back around and he was just in his diaper. Rory's started to cover his ears when Anastasia cries. Which is new. 

Exactly this time last year I went for a routine OB/GYN appointment and ended up staying in the hospital for a week and gave birth to Anastasia. Technically, her birth story starts with that little doctor's visit. 
Friday Rory kept having issues, or he's getting more aware that there are problems. He'd stack some blocks up and they would topple over. Rory would look at the pile of blocks and say "Mom" in a flat tone. Then rebuild, repeating the cycle, with him saying "Mom" each time. 

Or he'd bring me my phone, which is turned off, and states "Mom" because he wants to watch truck Youtube videos and he can't with the phone off. Apparently, when he's not play or doing something "Mom" several times in a row can mean "hungry" but it's still hit or miss with that one.  

Saturday was Anastasia's 1st Birthday! Heidi Anne and I made a  red velvet cake with cream cheese frosting while Rory took a nap. After Daddy and Rory woke up we celebrated Anastasia's 1st Birthday. 
First she opened up her few presents wrapped up in Christmas tissue paper. She got some new clothes and a dolly. She had fun biting at the tissue paper. Rory assisted in speeding up the unwrapping process. 
Then Anastasia had her first bite of cake, she promptly spit it out. Same with the frosting. Rory on the other hand loved all of it. Which makes me glad we choose to do a smash cake next year for her. It seems as though by babies hate cakes on their first birthdays, but can't get enough cake as they get a tad older. 
Today Rory decided he wanted to keep his nightclothes on. So we let him, because this week has been filled with "no clothes" days for Rory. He just happily ate some cake as this picture was taken.  
While we were eating, Anastasia fell asleep. Birthdays are exhausting when you're barely 1! 

Friday, February 10, 2017

On A More Positive Note

 I just wanted to write about my tiny, serious Anastasia. She can army crawl with the best of them. Ana-Rose is lighting fast when she sees something she wants. Those big blue eyes light up and off she goes. 
She is so close to doing a traditional crawl. She gets on all fours, then rocks back and forth. Sometimes, Anastasia will put one hand in front of the other, then topples to the side. She had always been our little fighter, so Anastasia gets right back up and tries again. Normally with a hint of a smile on her face. It's like she doesn't see it as failure but a chance to try again.
Anastasia has overcome numerous obstacles over the last year. From ROP of the eyes, 2 murmurs of the heart, 3 hernias, learning to breath and eat on her own, to sleep without having breathing complications, plus many other challenges. Perhaps, more trials than most people face in a life time she's had to battle for less than 12 months. 
Preemies are amazing little warriors, they just keep fighting to live with such finesse. Maybe it's because a baby doesn't know how to think negatively nor do they focus on the statistics. They just keep pressing on, despite the odds being stacked against them. 
I admit there are times, more often right now on the first year anniversary, when I look at her, I think of how our lives were flipped upside down. All of this has made us; closer as a family, taught us to rejoice in the smallest of milestones, and helped us realize how precious life truly is. I think our NICU journey prepared us for the Autism road we are now traveling down on.
I hope by this time next year she'll no longer be labeled as failure to thrive. Ana-Rose will be walking, if not running, around everywhere we go. I bet Anastasia will continue to be a chatter box, only next year I'll be able to understand her more. I see her being one to encourage her brother to push his boundaries, while continuing to receive unconditional love from her big sister (as long as the girls don't share a room). 

Sunday, February 5, 2017

This Time Last Year

This time last year was a place of uncertainty. Full of unknowns. I was afraid that I would go into labor at any given second. That my baby wouldn't pull through her medical crisis. This time last year is a place I keep going to without even trying. But the sight of Anastasia takes me back there before I know it. 
I look at my tiny, strong, very serious baby girl. 
I think of how many times we came close to loosing her before she was even born. Then about all the times in the NICU where I feared I might not see her again when I left the hospital. 

I hear her babble away from the next room. She is my loudest baby by far. 
I go back to the time when she was intubated and couldn't even let out a proper cry. You could see her trying to cry but no sound would come out for nearly 2 weeks. When she could raise her voice, it was the smallest mewing sound. Not a proper cry at all. 
I watch my Anastasia fall asleep for a quick nap. 
I think of all the times the monitors went off, showing she was having apena or bradycardia spells in her sleep. I remember she came home with those monitors. How annoying but comforting they were simultaneously

I feed her lunch, which is messy, and full of smiles from both of us.
I remember how she was feed by IVs and a NG tube for weeks. Her milk was measured by the millitliters (MLS) and with medical precision then slowly feed over an hour through her NG tube. Later she was bottle feed but each MLS was accounted for. I remember months later we began to measure her food in ounces and what a huge deal that was! 
I cuddle my little one, Anastasia tries to squirm away, she really wants to play on the floor and be mobile again. 
 I'm transported to the first time I touched her fingers right after the c-section. How I wanted to stay right there beside her forever. But I could only remain for a few minutes because I, too, needed medical attention. I recall getting to help with her "cares". For many days all I could do was just touch her tiny hand or foot. Holding her for the first time took weeks. Then came the skin to skin cuddles. Oh, I would just sit in a little corner, holding my preemie Anastasia, content as could be and wishing time would stand still. 
I think of the actual date of her birth.
It's not only her birthday but my late Granddad's birthday, as well. (Oh, can't forget Aunt Marylou's birthday, too.). I miss him and my Granny so very much. Honestly, what are the chances Anastasia would be born 3 months early? And on his birthday? Since she shared Granddad's birthday, I wanted her to share Granny's name. That's where her middle name Sonia came from. Although they never meet Anastasia, I like to think she has a special connection to them.  

Anastasia gets weighed once a week. She's currently 16 pounds 4 ounces and 27.5 inches long.
I see my tiny girl, 2 pounds 5 ounces and only 13 inches long. Heidi Anne has baby dolls that are taller (and maybe even weigh more). I remember calling nightly to get an update on how many grams she had gained that day. Yes, the updates were in grams. 

I chat with a friend via text or Grandma comes to visit. 
This time last year family rallied around us to help tend to Rory or watch Heidi Anne. Strangers, who became my friends, came with meals since I couldn't cook dinner. Or they would care for Rory while I had yet another doctor appointment in Ogden.  

I see her toothy grin. 
This time last year wasn't all bad. We made new friends, drew closer to old ones and family members helped in our hour of need. Anastasia had many crosses to bare, but she overcame each and every challenge. For 3 months the hospital was her home, where nearly every nurse greeted me warmly. I knew she couldn't be home but was reassured that the nurses genuinely cared about my tiny girl. Once she could be held I asked them to hold her as much as they desired since I wasn't able to be there as often as I wanted to be.