California Farewell Tour - part 1 of many

As I have mentioned before, after 37 years in the same home in Fountain Valley California, Brad's parents are moving to a far away land called Tennessee :). Before they moved we had to make one last trip out to visit them, one which Brad so appropriately named the "farewell tour." We were able to visit California for about 5 days and I got a ton of pictures so I will have to post in stages before the whole trip is summarized.

Unlike any trip with Eden that we have made in the past, we actually went by plane! It was quite a bit of work leading up to the travel, but it all went smoothly and I'm so glad we were able to fly rather than having to make the 12 hour drive each way.

In the weeks leading up to the trip, I got all the medical paperwork we needed signed and sent to the airline. I also had to get Apria (our medical supply company) to have the CA branch deliver some equipment and supplies out to Brad's parents the day before we arrived because it would have been impossible to fly with everything Eden needed. I had to mail a seperate box of supplies out ahead of us because it was stuff that wouldn't be delivered and that we couldn't take on the plane. Then I had to get a portable oxygen concentrator the day before leaving so Eden could get her oxygen on the plane. In order to fly we relied so much on everything going smoothly with Apria,and we have had TONS of problems with them following through in the past so we were worried it wasn't going to work out, but it did and I'm so grateful!

Our flight out of Albuquerque was supposed to depart at 9:15am on a plane that was coming in from Texas, but because of fog there the plane we were taking out to CA didn't arrive into Albuquerque until around 11:30 so we didn't actually depart to CA until around noon. Eden was so good at the airport though and made tons of friends with all the folks who were also waiting for the plane. By the time we got on the plane though she was totally exhausted. Right after taking this picture, and before even taking off, Eden was falling asleep sitting up so I held her and she was completely out before we even took off. It made for a pretty easy flight!


Because it was the "farewell tour" it was important for Brad to take Eden and I to the places where he spent so much time growing up. We had so many fun adventures exploring his old stomping ground! The following pictures are from Brad's elementary school and the park near his house where he spent lots of time.





This room behind them was Brad's old kindergarten classroom. I was amazed that he could point out all his elementary classrooms and even what all his teachers names were. I hardly remember elementary school at all much less all my teachers names and where each classroom was!!


Several of the exterior walls of the school are this textured tile and Brad said as a little boy every time he walked by those walls he would run his finger across it so he showed Eden how to do it and by the second or third wall she was reaching out and doing it herself. It was cute.




I just had to throw this in here because I think it is so cute how Eden holds on this way when we got on stroller rides. I love those cute little hands!


We also went and walked around his old middle school. Again, he remembered all his classes and the teachers. :) Eden didn't care where we were, she was just absolutely LOVING being outdoors going on so many walks!




Stay tuned for more CA posts! There are many more pictures and adventures to come!

Love

I just love these two goofballs....

crazy hair, squinty eyes and all!!

Beautiful weather!

This week has been such beautiful and warm weather. Combine that with the fact that Eden didn't have any medical appointments this week (TOTALLY SHOCKING and this NEVER HAPPENS) and it made for the perfect week! We went to the zoo twice, went to the park, and spent a day down at my mom's playing with cousins. Awwwww.... it makes me long for the days when we can reduce these appointments we have so we can have more fun each week like we did this week!

At the zoo with Kally and her boys we got to watch them feed the polar bears which is always really entertaining.


Cute little Lincoln with his mouth full of goldfish crackers.


Jaxon took this picture of us. Not bad for a five year old!


I love this picture Kally got of Eden, even though she wouldn't crack a smile.



By far the two cutest caged animals at the zoo that day!


Thanks Kally and boys for a fun day at the zoo!

Valentine's Day

I must brag for a moment because I have the sweetest Valentine in my life! Like most guys, Brad thinks Valentine's day is somewhat silly, but that doesn't stop him from always doing something sweet and romantic for me.

When Eden and I woke up and came downstairs in the morning, we were suprised by Brad's decorating and some cute gifts for each of us. Eden got an adorable little purse and some stickers and candy. I got a new case for my IPad and some yummy treats.



Then later in the day I had a delicious delivery come to the house...

I LOVE chocolate covered strawberries and had a hard time waiting until he got home from work before I dug in!

When he got home he discovered his gifts from Eden and I which was a nice bench for our closet so he doesn't have to sit on the floor when he puts his shoes on each morning, a fun new boardgame to add to our growing collection, and some treats.

Then that evening Eden had this sweet little gift left for her on our porch from her secret admirers who we later confirmed was some of Brad's seminary students. Teenagers really can be so thoughtful sometimes. :)


I am just so grateful for my Valentine and his thoughtfulness! He definitely takes care of his girls... :) Love you Brad!

Denver Aquarium

This is a catch up post and actually happened last month and I just didn't get around to posting about it. When my mom, Eden and I went to Denver to meet with the neurosurgeons (before she got the brain shunt) we went to the Denver aquarium with Tiff and her kids. I got a bunch of cute pictures that I didn't want to forget to blog, so just rewind a few weeks and then we'll be back on track!

I absolutely LOVE this picture of Eden even though it is a little blurry. She was so excited the first time I set her down in front of the big fish tank. I'm so glad I was able to capture her excitement.




Eden loved to just stand at the tanks and point at the fish as they swam by.




Cute little Asay kids! We have sure missed them since they moved to Denver!


Definitley one of the highlights at this aquarium is the mermaid show. Yup, that's right... real, live mermaids that put on about a 30 minute show in one of the huge tanks. It was pretty entertaining!


After the show is over the mermaids come out to take pictures so of course we couldn't pass that up. It's not everyday a girl gets her picture taken with some mermaids!


I don't think Eden was loving the feeling of being inside the shark's mouth.


Thanks Asay family for taking us to your aquarium. We look forward to seeing you guys again in just a couple weeks!

20 months old!

On the 5th Eden turned 20 months old. I just can't believe how fast the time goes! She is just a little over 19 lbs and is still wearing 12 month clothes, but is starting to fit a little better into 18 month clothes. I love her skinny little legs and the way it looks when she walks. She is so feisty these days and definitely lets you know when she does or does not want something. She signs quite a few words now, and when she doesn't know how to sign something she just moves her hands around crazy like she does know - it's pretty adorable.

She is also going through a super shy and super clingy phase which I hear is pretty typical for kids her age, but I hope she outgrows it very soon! She absolutely LOVES the show Yo Gabba Gabba, which in my opinion is very unfortunate because I find it to be quite annoying. It is a great distraction tool though while I'm trying to clean her trach and change the dressings so we watch it every morning during trach care. Yipee!

She is such a good sleeper and since her shunt surgery she has gone back to consistently taking two naps a day. She'll also sleep a good 11 to 12 hours through the night as well. Unfortunately I can't say the same for myself because even through she usually sleeps through it, I'm still up a least a few times a night for suctioning or oxygen issues or something. Fun times.

She is also very into climbing lately but is not very coordinated at all when it comes to balancing on whatever it is she is climbing. It's definitely not a good combination so I have to keep my eye on her when she finds something she thinks she needs to climb.

She now has 12 teeth, including 4 molars! Unfortunately she is not putting them to use very much since the shunt surgery. She has basically refused to eat pretty much everything since the surgery so we took a major step back when it comes to that area. Fortunately because of the G-tube I know she is getting the nutrition she needs, but I'm so disappointed because we had made so much progress with eating prior to the surgery. I'm not too motivated to put much effort into it again at this point either because I know that after her airway surgery coming up things will completely change again.

On a good note though, it continues to amaze me how quickly her body heals and recovers. She got the staples out of her head and tummy last Friday and the scars have continued to heal so nicely. I've also figured out a comb over look with her hair which seems to hide the bald side at least a little bit, so for now we are going with it and most people don't seem to notice too much.

At her eye appointment last week we also learned that the swelling of her optic nerves is going down. It takes a few weeks for it to go away completely, but there is definitely improvement so the opthamologist says we are out of the danger zone as far as long term damage to her optic nerves so we are happy about that. We will go back in on March 2nd to check them again.

March 3rd we will be back in the neurosurgeon's office to check the shunt functioning and make sure everything looks good there. They may or may not decide to do a CT scan at that point.

March 3rd we are heading back to Denver where she will be getting a bronch on the 4th and then if all looks good then she will get her airway reconstruction surgery on the 10th. I'm anxious to get it over with and REALLY hope and pray it's the last major surgery Eden will need.

So I think that's all the Eden updates for now. I'll finish the post with some pictures I never got around to posting. You'll notice these are prior to shunt surgery because her hair is normal and cute in these. :)

This was her holiday dress so these are from quite a while ago. They were just too cute not to post though.





She played with this U-shaped pillow for a long time in her bed before finally falling asleep right on top of it.


With the recent freezing weather, this big coat has come in handy, but it is so puffy she can't put her arms down and she hardly fits in her carseat. She gets pretty frustrated with it fairly quickly so it usually doesn't stay on long.


It's never to early to start with chores, right? She is a great helper when it comes to dusting and laundry.




We love you Eden... happy 20 months!!

Each day gets a little better

Today Eden is only getting tylenol for pain and she seems to be doing pretty good. She is still very calm and needs lots of blankie/mommy snuggling time, but overall she has been showing that she is starting to feel much better. We have been up playing with toys and reading books quite a bit, and I'm starting to see a lot more smiles again.

No matter how much pain or discomfort she is having though, a wagon ride is always such a joyous occasion for her. We have been spending quite a bit of time outside getting some fresh air.


This is the face I get now every time I tell her to smile for the camera...


Eden "smiling" with one of the many rocks we collected along our walk. By the time we get home she has quite a collection in the bottom of her wagon.



Thanks to everyone who left their opinion on what I should do with her hair. I go back and forth with it so that means I'm in no position to do anything with it anytime soon! :) It makes me so sad to think about shaving it all off, but I just don't know yet how to make it look decent with what we've got. So in the meantime we will just go with some cute hats until I make a final decision.

Wednesday I'll be taking Eden back in to the eye doctor to see if the swelling has gone down in her optic nerves. Hopefully we will leave there with some good news and her eyes will be ok. Then Friday we will be back at the neurosurgery clinic to get the staples removed from her head and stomach.

We are also looking at getting the airway surgery back on the schedule. Most likely it's going to be some time in early March, but I'm waiting for a call back from the ENT scheduler before we will know for sure.

And then, for something fun that has absolutely nothing to do with the medical part of our lives, we are also hoping to take a trip out to California sometime really soon before Brad's parents move to Tennessee. The timing of everything makes it so tough, but we are trying really hard to figure out how to fit it in there somewhere. I'm not looking forward to the drive, but am really excited to be out there again. So it's going to continue to be busy for us, but I guess that's how we roll!