21 Months Old!

Fall is in the air. I cannot believe how fast time is going by! Elaina turned 21 months old on the 11th. She is doing SO well! The last couple months have been crazy busy. Ben and I finally moved closer to Elaina. We're just a few minutes away now, and I LOVE IT!!! It has been SO wonderful to be able to spend more time with both of my kids. Ben started 1st grade this fall, and he's loving it. He turned 7 on the 21st of September, and is now missing his 2 front teeth. Since he's in school all day, and we live so close, I've been able to have some visits with Elaina in the afternoons, pick Ben up from school and take him to South Davis to have a visit as well. There are also days that I go visit with Elaina while Ben is at school and then can have some quality 1 on 1 time with him as well. Ben is adjusting to homework and the move. It was hard on him to leave friends and his comfort zone, but he's resilient and seems to be adjusting well.

Elaina is just getting so big! She's decided that she wants to be mobile. She spends her days rolling around in her crib or a playpen by the nurses station. She can roll all the way over, from front to back and back to front. Once on her tummy, she'll push up on her arms to check out her surroundings. The nurses have told me that they've caught her on her hands and knees rocking back and forth, attempting to get ready to crawl, but as soon as she realizes that she's being watched, she stops doing it. I've never been there to catch her in the act, but I will keep trying! One of these days I'm bound to walk in and see her in action. I've taken to walking in with my camera in hand so that I can capture those kind of moments. And moments like this:


A lot of Elaina's energy is also going to teething! She's now working on 10 teeth! Seems like they all decided to come through at the same time! She's cutting 3 on the top, 3 on the bottom and 4 molars, one in each corner. Poor baby! But she's chewing on everything in sight and still smiles all the time.

I tried to get a picture of the teeth, but got this cutie smile instead. :)

She's thinking about rolling over.....

Ben's first day of school. The timing of our move was not the best. Ben started first grade at his old school in Orem, and then we ended up moving 2 weeks later. I debated keeping him out and having him just start once we moved, but decided that he would miss so much review in those 2 weeks that it would make it harder on him in the long run. He's a trooper, and did really well with the transition. It's always hard to be the "new kid", but he's starting to make friends and seems to enjoy the new school.

We were able to get one last weekend in with the family at the lake. I think Ben could live in the sand and water! He's fearless, and that scares me! Bear Lake stays shallow for quite a way out, and there were a couple of times that he really freaked me out because he went so far away. I had to haul him back to shore and threaten loss of water privileges if he didn't stay close. All in all, I think he had a wonderful time and we loved being able to spend time with family as well!

One of the advantages of living closer to Elaina is being able to participate more in her daily activities. Ben and I were fortunate to be visiting one night when it was bath time! Since I didn't have to worry about an hour drive home, we were able to stay and help with her bath. They put her on a gurney and basically shower her with a hand held shower.

She loves bathtime! She tries to eat the washcloths and splashes in the water!

All clean and pretty after the bath, she's showing us her tricks. If they put her pulse ox probe on her right foot, she pulls it off. For some reason, she'll leave it alone if it's on her left foot, but her right foot is the one she puts in her mouth, so she pulls until the probe comes off. Then she eats it. Of course it alarms, so the nurses come in and tell her she's a stinker for pulling at her probe and making it alarm, but she flashes a smile or two and since she's so cute she gets away with it!

Elaina continues to make so many improvements in her development. She's making up for lost time! She LOVES to be upright. She has fun in her saucer, she loves to sit in it and play with the toys. But she loves, loves, loves to sit in her Bumbo seat in her crib and watch Little Mermaid. The nurses will put her in the seat for a couple of hours at a time. Her back and neck muscles are getting so much stronger. For the longest time, it was difficult for her to hold up her head, even when she was upright. Her head would lean forward, with her chin on her chest. Sitting in the Bumbo has really helped that. She's got much better neck control and is sitting taller every day.

This picture was taken about 5 weeks ago. Notice how she's upright, but leaning forward a little bit?

This was taken a couple of days ago. She's much more upright and is holding her head up better.

Such a happy girl! She's even started laughing out loud! Not every time, but if she's in the right mood and feeling ticklish, she will give a giggle or two! She loves to play pat-a-cake, she loves to read books, she loves to play with her finger puppets. She likes to watch her movies! She's such the couch potato! Nemo is still a favorite, but I think that Little Mermaid is a close 2nd, if not tied for favorite movie. It's funny, if other movies are on she'll still play and interact and fall asleep if she's tired. BUT, if Nemo or Mermaid are on? NO WAY! She gets grumpy if you try to play or sing or take her attention away from "her" movie. It's cute. Kinda. Unless Mommy wants to play.......

And her newest accomplishment? See for yourself:

That's right!!! Sitting up, un-assisted! She lasts anywhere from 1 to 5 minutes. It was hard to get this picture, because she kept trying to grab the camera and it would make her fall over. She's so proud of herself (and she should be!) whenever she does it. Too cute!

Elaina has a cardiology appointment at the beginning of November. They are going to do an Echo this time, so I'm a little nervous. She seems to be doing great. Her sats are high, she ranges from 82-93%. I have noticed that her fingers and toes go blue on occasion, but she pinks back up within a few minutes. Its usually when she first wakes up from napping, so I don't know if that's anything to be concerned about or not. I'll talk to her Cardiologist about it, just for my peace of mind.

Well, thanks for taking the time to check in on us! Most of my boxes are finally unpacked, I have a few to sort through in my closet and some pictures to hang, but then we'll be all moved in. I'm hoping to be in a better routine soon, so hopefully I'll be able to post more often. Not having to drive so far really has it's advantages.

Hugs!
Hollie, Ben and Elaina

The one with all the pictures...aka the long overdue post

What have we been up to, you might wonder? Why haven't I posted for so long? Settle in, this is a long overdue catch-up post!

WELL, for starters, I was having some issues with my lovely computer. The fan went out, and so it decided it didn't like to stay on for long periods of time. Not fun. So, I got a new computer. I wanted to update, but then life got busy! Good busy. Not like last summer. Oh my. Last summer was a living nightmare. We've been having lots of fun and excitement this summer. Elaina is one happy little girl!

We love to play with her and tickle her until she laughs!

I took Ben to ride on Thomas the Tank Engine. I've taken him every year since he was 3. He loves, loves, loves going! There are all kinds of fun activities, trains to play with, stories being read, a petting zoo, and loads of other activities. Not to mention a Gift Shop that will leave your wallet empty.

Riding on Thomas

Ben and Thomas!

Then, of course, we've been spending lots of time with our Elaina-bug. Now that school is out for the summer, I can take Ben with me as often as I like. I don't have to worry about finding a baby-sitter or rushing back to pick him up. It's good for all of us!

Ben and Elaina. She's not so sure about being out of Mommy's arms.

Elaina loves to play in her highchair. They also let her play in one of those saucer things, but I've never been there when they have her in it, so no pics of that yet. Her head control is getting much better. She's able to sit with assistance now for 2 -3 hours at a time.

We went to our Cardiology appointment. It was good. In the words of our Cardiologist, everything looked "Okay". Elaina's saturations have been very good. She's still on a liter of oxygen and will remain on that much for now. She has times that she will "high sat" at 90 or so, but he said that was good for her brain to get a little extra oxygen. She usually sats between 82-87%, which is very good all things considered. He said that he doesn't need to see her for another 6 months! Great news! He made a few changes in some of her meds, took away 2 of her diuretics, and said that once all these changes have taken effect I can make arrangements for her to come home! Yay! He also said that he would like me to think about taking her back to Cath Lab to find out exactly what her heart function is looking like. That won't be until next spring or so, BUT he said that depending on the pressures, etc. that he might consider talking Transplant! WooHoo! I'm not putting all my hopes on this one, but if you remember right, last fall I was told that there were no more surgical options available for her, and now he said that she may be eligible for a transplant! He told me to focus now on her quality of life and not worry about the quantity. He seemed pretty pleased overall with how she was doing. Go Turtle-bug! She sure showed them! :)

All hooked up to the EKG machine.

Back at South Davis after her Cardiology appointment.

So, Ben and I have continued to smother her with love and kisses!


THEN, I got a call from the Recreation therapist at South Davis. She was organizing a trip to the Hogle Zoo for several of the children, and wondered if Ben and I would like to take Elaina with them! Duh. I jumped at the opportunity to do something out of the hospital with both of my kiddos. In all reality, this was Elaina's very first outing. Lifeflights and trips to the doctor/hospital don't really count as outings in my book!

She wasn't so sure of the sun at first....

In fact, she was pretty unhappy with the whole situation.

And she was tired from having to get ready so early. (She's like her Mommy, NOT a morning person!)

Once we started walking, she fell asleep. It felt so, normal, to be pushing a sleeping baby in a stroller.

She only napped for about 30 minutes.

She HAD to hold on to her pacifier.

Ben loved being there with his sister, too!

Happy girl in the shade!

We stopped for lunch. Ben and I brought a 'picnic' from home. Elaina is helping the nurse give her a bolus feeding through her g-tube.

She's been fed, now it's time for a diaper change! lol :)

Saying goodbye at the end of the day. The group from South Davis was only able to spend about 4 hours at the Zoo. Ben and I stayed behind once they left so that we could ride the train and carousel. There were also a few exhibits that we couldn't go in, because they were not accessible for strollers/wheelchairs. It was so sweet, Ben did not want Elaina to leave. He cried and cried once she was put back into the SDCH van. It was so sad to him that she had to go back to the hospital and didn't get to stay and play with us. What a good big brother he is!

Then Ben and I got to go to one of our favorite places on earth, Bear Lake! Just about the whole family was there, except my brother who is working in Alaska this summer. We had so much fun! It was raining and cold most of the time, so we didn't get to swim or go down to the water, but we played lots of games and watched movies.

The sun came out the day we left! Figures!

That's my happy guy!

My cute niece Kate rode with us to the lake and on the way home. On the way back we decided to stop in and visit Elaina-bug. She sure loves her cousin Kate!

Kate, Ben and Elaina

Ben and I have been able to visit 2-3 times a week. Making sure to give Elaina lots of hugs and kisses!

She finally let me get a picture of her two bottom teeth! She's also got 2 on the top, but they're coming in slowly and hard to see in pictures. She's got a great bite! She likes to grab my hand and chomp on my fingers. I love letting babies teethe on my fingers.... :)

She's very good at pulling off all her leads and wires.

She loves to be tickled! She's starting to laugh out loud now. Too cute! Her vocal cords have been damaged from all the intubations, so her voice is extremely soft. So sweet to hear her try to 'talk' and laugh now!

She's learning to pose for the camera....

..... and likes to make faces!

Elaina did so well at the Zoo, that we got permission to take her out any time we like. I get unlimited day 'passes' with her and my insurance will cover 10 overnight stays. I'm going to save the overnights for our transition home! My family (on my Dad's side) has a wonderful 4th of July/summer tradition. Each year we go to a fish hatchery in North Ogden, and catch trout. We then go up the canyon and a have a fish fry, with homemade root beer and then go tubing down the river. It is a super fun tradition that has been going on for over 60 years. Well, I wasn't sure that I wanted to take Elaina up the canyon, since cell phone reception is not so good up there, and if something happened, emergency service wouldn't get there very quickly. But the majority of my family had never been able to meet her since she's been in the hospital most of her life. So I decided to take her fishing. Intermountain Healing Hearts, the support group that I belong to was was having their annual summer picnic at Primary Children's that same afternoon, so I figured I could take Elaina to both activites! I picked her up at 8:30 in the morning, and didn't take her back until 8:30 that evening. We had a wonderful day! It was so nice to be able to go out and do "normal" family activities!

Elaina loved being outside. She sat in the shade and clapped when the wind would blow the leaves in the trees! She saw her first duck fly overhead and her eyes got huge as it swooped in for a landing!

Ben fishing with my mom, my brother-in-law Craig and my niece Kate.

Ben and Kate.

She was such a happy girl!

Back at South Davis, after a long day out with Mom and Ben. She still looks happy! She only slept for about an hour or so all day. She didn't want to miss a thing. The next day, however, was spent catching up. The nurses told me that we must have worn her out, because she slept most of that day!

She continues to just be a happy girl! She's got the sweetest disposition! She's had a rash on her chin, and we've tried a couple different lotions and ointments to clear it up, but that's the extent of her problems right now! Unbelieveable! A year ago, I was making the hardest decisions of my life, and now I have this:

and this:

On July 11th, Ben and I went to South Davis to celebrate another milestone for our sweet Elaina.

She is 18 months old!

We took her for a walk to celebrate.

South Davis has a small playground for the residents, so that's where we headed. Turns out, it's just swings, so it didn't really work out well for Ben, but we had fun getting some fresh air for an hour.

Outside and loving it!

Back inside, we stopped at the aquarium in the lobby. Elaina wasn't very sure about it until she saw a "Nemo" swim by. She still loves watching Nemo and has added Little Mermaid to her list of favorite movies.

Getting ready for bed with one of her favorite CNA's. She had another fun and busy day with Ben and Mom!

We sure love all the wonderful nurses and CNA's at South Davis! They take such good care of my little Elaina-bug!

So, that's a little bit of what we've been up to. Ben and I have both had some illness and loads of doctors appointments, but I'll save that for another post. I'm hoping to find a place in Bountiful in the next few weeks. As soon as we're settled into our new place, Elaina will be able to come home! I hope that we can have a smooth transition. Life just keeps throwing curve balls.....

Anyway, thanks for checking in on us! I know that I'm living a miracle and a blessing in my life. My children are so precious to me. Thank you for all your prayers, support and encouragement. We wouldn't be here without them! Have a great day!

Hugs,
Hollie, Ben and Elaina