An Update on Eden's eyes...

For the past couple months we have been seeing the eye doctor about every 4 weeks to monitor the swelling in Eden's optic nerves. She has been off of the medication for it since April and the swelling has remained in one eye, but it's just been right outside the normal limits so the doc has just been monitoring to make sure nothing was getting worse. It seemed that things were staying stable and that she was doing well without any medication (or the dreaded brain shunt).

The other day we had another appointment and unfortunately the swelling has gotten a little worse. I'm not exactly sure what that means, but I know it's not good. The medication isn't a good long term answer so putting her back on it isn't really a good solution. At this point we are kind of at a loss and so baffled as to what is really going on.

From her first eye exams in the NICU until earlier this year, Eden was being seen by a pediatric ophthalmologist at UNM. Then that doctor moved and there wasn't a replacement for her, so she referred us to this new doctor we have been seeing at Eye Associates. As of this last appointment he basically told us there is nothing else he can do and he isn't sure what to recommend. Awesome.

Fortunately, he said there is a new doctor starting at UNM that has a double fellowship in pediatric ophthalmology and neurology, which based on the issues Eden is having, this sounds like it's exactly what we need. The bad news is that this doctor hasn't started yet and we are now on a waiting list to see him once he does start. Hopefully no damage will be done to Eden's eyes while we wait, and then once we do see this new doctor, hopefully we can get some answers and figure out what the issue is so we can solve it once and for all. We continue to pray...

Here's sweet Eden on our way to the appointment, completely passed out.

And every time she has to get her eyes dilated which she hates, but she does love wearing the cool glasses when we leave.

Cute little Bentley...

Bentley's hair has been so funny. It grows quite a bit on the top, and I've had to trim it a few times now, but all around the sides and back have always grown so patchy. Some parts I've never cut, and then others I have trimmed twice now because they get long. Some day it will all even out. Until then, at least he enjoys his patchy buzz cuts along the sides, and a little trim off the top!

I'm not sure if it's something I've been feeding him, or if it's just hot and sweaty in that diaper, but lately Bentley has been getting some diaper rash that really ticks him off. The best cure? Fresh air! He loves it and it helps a ton. So yes, he is riding this scooter naked. ha ha

On Saturday, Brad got up with Bentley so I could sleep in a bit longer (so sweet!). When I came downstairs, this is what I found. Boys bonding over old school nintendo - pretty cute.

Father's Day and my Birthday combined

Saturday the 15th was my birthday, but it also happened to be the day we were traveling home from Denver. The plan was to leave Denver early, and get home late afternoon. Brad had decorated the house and planned to make a big dinner. Unfortunately, with all the tire drama we had that day, we didn't end up getting home until around 8 or 9 pm so we just decided to celebrate my birthday and Father's day together the next day.

We did come home to a few surprises though. Remember this picture I posted of the kids and the dog at Costco?

He surprised the kids with this as we walked in the door from a very long day.

Bentley has loved snuggling with it, just like he did in the cart that day.

So on Father's Day, I made a big breakfast before Brad had to go to the church for meetings. As his gift I asked Eden a bunch of questions about him and laminated all her funny answers. She also drew a nice picture of her and daddy on the back. It turned out cute.

After church Brad made me the birthday dinner he had planned, and then Eden helped him make Strawberry Shortcakes for dessert. It was so sweet.

Thanks Brad for your thoughtfulness to make my birthday special. I hope you had a nice Father's Day too. I am so grateful my kids have you for their daddy!

Drama coming home from Denver

Eden was discharged from the hospital on Friday afternoon. We spent that day recovering and getting some sleep (since it's pretty much impossible to sleep at the hospital). Saturday morning we loaded the car and headed out around 9:30 AM, anxious to get home. We only made it about 15 miles down the freeway when all of a sudden we heard this crazy weird noise, which I thought was the construction going on around us. It was only seconds later though that I realized that noise was us and that we had a major tire issue going on. Of course, we are at the craziest part of the freeway, and I was on the inside lane, but fortunately I wiggled my way out of traffic and onto a small shoulder. It was not an ideal place to be stuck that's for sure. My mom and I both turned and looked back at the curve behind us and the lanes of cars coming very quickly around us. I couldn't believe the luck. Looking back now we can laugh and joke about it because we survived. At the time, we were both experiencing a lot of nervous giggles. My mom kept watching out the back window - I guess if we were going to get plowed down, she wanted to see it coming. :)

Fortunately I have AAA so we got a call in right away to have someone come save us. It was a hassle because the lady kept asking me all kinds of questions I had no answer to, and we were fearing for our lives when she said it might take up to an hour for someone to get to us. Fortunately he came pretty quickly but then we had to empty out some of our luggage from the back so he could lower the spare tire from the inside. He got us all fixed, we reloaded our suitcases and thanks to the data plan on the iPhone, we followed the directions to the closest Discount Tire.

Right off the bat they could tell our tire wasn't fixable. It had a nice, perfect round hole just big enough to make the tire useless. So then we moved on to buying a new one, but we quickly realized that the tires for this vehicle are like a rare gem which cannot be found. The guy with Discount Tire was awesome, and was bending over backwards to help us. He called every other location and nobody had any in stock, but two stores did have a couple which they had just received for other customers. Those stores called those customers to ask if they could delay a couple days and give us their tire, but both people said no. So then he called Buick and asked them for a tire, and they said no too. So finally, the guy there called the Discount Tire here and arranged a deal for us to basically borrow a different kind of tire to drive home and when the matching one came in, they will swap us out and I'll just pay for the one we need. I'm so grateful for all they did to help us. I think I'll always be a customer of theirs now.

The situation we were in was a crappy one, but the people made it so much easier to handle. Not only was the guy with Discount Tire so nice and helpful, but there was also a customer in the lobby with us that had overheard our situation, and also overhead me talking to my mom about the fact that it also happened to be my birthday, and I think she was feeling sorry for me. They finished up her car and she left, but about 10 minutes later she came back with a gift card for Red Lobster just down the street and said "Happy Birthday and God Bless". It was so nice! So while the guys finished fixing our car with the borrowed tire, my mom and I took the kids down the street for lunch at Red Lobster, all paid for by that nice woman. It was such a good reminder to me to always be mindful of other people, and to help lift spirits in any way I can.

So about 4 hours after our original departure from Tiffany's house, we were finally on our way home. It ended up being a very long day, and I'm still waiting to get the real tire my car needs, but I'm grateful for the lessons I learned, and all the help we received.

Denver Medical Trip, and some fun stuff too!

Last week we made the trip north to Denver to have some follow-up appointments with Eden's medical team there. My mom very graciously offered to go with me and I'm so extremely grateful she did. She was a huge help on the drive to and from, but even more so, she was a lifesaver in helping take care of Bentley while Eden and I were at the hospital. Thanks mom!

Eden has really been looking forward to going to "Jade's house" for quite a while now so I decided to go up a day early so she could have at least one fun day outside of any medical stuff. We went to the Children's museum there which was busy, but the kids had tons of fun. My cousin Allie and her boys were able to meet us there which was so fun to be able to hang out with her, and meet her new little baby.

Eden's favorite thing that day was the tools section. She loved using the screwdriver to put screws into a toilet paper roll. She did several perfectly straight lines of screws before I finally forced her to move along.

Bentley's favorite thing was the ball room. There was a tube that would suck the balls up (kind of like at the drive through of a bank) and then bring them right back to where he was standing. He would just load the balls and watch them go around over and over again. Even when we would go to other exhibits, after a couple minutes he would start wondering off saying, "ball" hoping he would find his way back to his favorite spot.

Bentley was definitely worn out by the time we left there.

We loved the time we had to spend with the Asay family. Eden loves being with them, especially Jade who is so sweet and loving to her. We are so grateful they let us stay with them while we have to be in Denver for our medical appointments. It lightens the burden so much.

So we arrived Monday night, Tuesday was all fun and games, but Wednesday our time at the hospital began. We arrived that morning and she had to get chest x-rays and then do a swallow study.

The x-rays showed she has some plugging in her lungs and the cultures came back positive for some bacteria in there so she is now on an antibiotic, and is also getting a medication through her nebulizer twice a day for 30 days.

The swallow study went awesome! She was so amazing and cooperated so much! At our last swallow study last October she was aspirating liquids (liquids were going into her lungs) so it was a big concern. At this study she showed she has improved so much and is not doing anything with her swallow that is concerning. They felt like we probably won't need to do any more follow up swallow studies so we are so excited about crossing another thing off our future medical to-do list. Yay Eden!

After we finished our swallow study we had a short break for lunch so we went to a nearby fast food place where she was stoked to get an ice cream after she ate. Since my mom had Bentley, it was just Eden and I and it was really fun to have that special time with just her. She is so sweet and fun.

After our lunch we went back to the hospital for a clinic visit with the Aerodigestive team. In the waiting room there was another little girl and her mom, and for the most part, Eden and this girl were just staying away from each other. That was until this other girl noticed Eden had a feeding tube. She quickly lifted her shirt and showed Eden that she had the same feeding tube. They were so cute together after that point. They continued to lift their shirts and laugh, and then they started chasing each other and playing together. It was cute to see that bond that formed quickly just because they noticed they had matching feeding tubes. :)

The next morning we were up bright and early to check in at the hospital at 5:45 AM. Eden was scheduled to be in the operating room where the Pulmonologist would do a scope and look at her lungs, and the ENT would do the bronchoscopy to measure her airway. Dr Prager, the ENT, also removed her tonsils and adenoids.

Upon completion of the procedure I met with both doctors and got some very positive news. Eden's lungs did have some blockages, but the malacia, or softening and collapsing of the lungs was much better and her body was keeping it from closing off completely.

Then Dr. Prager let us know that her airway has grown since the last time he saw her last October. He felt like if she continues to grow and develop as she has in the last 7 months, that we may be able to start the decannulation process next spring! I can't even fathom life without a trach, but now that I'm seeing a possible light at the end of the tunnel, it sure is exciting! We will continue to pray that her airway keeps on growing!

I left the doctors feeling so happy and excited about the progress Eden has made. Then I was off to be with her in post-op which I knew was going to be rough. She was obviously in lots of pain, but she is so amazingly strong and brave.

Before long they wheeled us up to our room where we would stay overnight for observation. It was a long, hard day, but I came prepared with some activities and when the pain medication was fresh in her system she was excited for a change of pace and some entertainment.

I'm so grateful to my mom for keeping Bentley for me so I could focus 100% on helping Eden. I missed him so much, but I know he was having tons of fun based on the pictures she was sending me while I was away. Thanks mom!

Today Eden is still feeling pretty sore, and she cringes most of the time when she is swallowing, but overall she is doing amazing. She's just pretty happy and content even through the pain of swallowing. She is such a great example to me of having a positive attitude despite what's going on. I love her so much. We are so extremely grateful for all the progress she had made. Many prayers have been answered and we are so excited for what's to come in the next year!

Eden's birthday and all the celebrations...

Eden woke up on the morning of her birthday to her room decorated with balloons. By the time I got there to take this picture, she had already thrown most of them to the floor. I'm not sure she was super thrilled, but Bentley sure was!

She started off her morning by opening the birthday cards she received from both sets of grandparents. We are so grateful we have parents who are so loving and anxious to be involved with our kids.

The day ended up being really long for Eden because she had to wait to open presents until daddy got home from work. So during the day, we played with Grandma Malarsie, and then in the afternoon we went to the park. Once daddy came home, we had tacos for dinner (which was the meal she wanted the most). Then she finally got to open her presents.

One of her gifts was a fancy Doctor Kit and she began giving all her other new presents a check-up.

After presents, we made sure to mark her height on our big ruler (which I hadn't even finished making yet), and then we headed off to the frozen yogurt shop to get her birthday treat.

Then on Saturday morning, Eden helped me make a cake and we got everything all ready for her birthday party with my family, and a few close friends, the Mays and the Picketts. It was such a fun day. I'm so grateful for everyone who came to celebrate Eden with us. Here comes a ton of pictures!

The Hardings were running a little late because of Jaxon's baseball game so for a while it was just a bunch of girls everywhere. Once the Hardings came though, their four boys balanced it out a little more. :)

Eden was so cute as she stood back and watched the bigger kids on the slip-n-slide. She thought is was so funny.

Bentley got plowed down on the slip-n-slide at one point and he was not happy about it. The poor guy. Fortunately though, he has he older boy cousins to toughen him up a bit. :)

Later that afternoon Erin was able to come by and she completed what was a perfect day for Eden.

Thank you everyone for celebrating with us! And a huge thanks to Kally and my mom for taking the majority of these pictures while I was busy running around. :) Happy Birthday sweet Eden! We look forward to what this year will bring!