Easter!

Easter was so much fun this year. I love that as Eden gets older, the holidays get to be more and more fun! A day early, the Easter Bunny actually came and dropped off this little suprise for Eden... (I heard he got a really good deal on Craigslist, whoo hoo!)





Then Easter morning he left her these other fun things...

Unfortunately she is terrified of the pirate bear who sings and moves around so we have to keep it put away. She won't even play in the same room with the darn thing :)

That morning we were able to attend my brother's ward and be with them when he blessed Sophie. He did such an incredible job on her blessing and we were all so happy for their family. And of course, Sophie looked absolutely adorable!


The rest of the day was spent down at my parents house where we had a delicious BBQ and celebrated with all the usual Easter traditions. Unfortunately Eden missed out on dying eggs because she was napping, but I was able to help Kadence which I'm sure was much less messy than trying to help Eden!




Cute little baby Carson...


Then we did the Easter egg hunt for the kids and Eden was totally into it! She got so excited every time she saw another egg so she would run to it, throw it in her basket, and then start searching the grass for more. She ended up with quite a lot of eggs! Somehow we even convinced her to actually eat a little of the candy. She seemed to latch on to the malted eggs and wanted to keep eating those. Unfortunately though, she was so intrigued by the eggs and candy that out of about 20 pictures I tried, she would not look at the camera and smile.... little stinker.





I am just so grateful for the Easter holiday and the reminder it is to us of our Savior and the miracle of His resurrection. I feel so blessed to have the family that I do and I love being able to celebrate with them!

Denver/Airway updates

I'm currently in Denver, sitting beside Eden's hospital bed as she sleeps off the anesthesia of today's bronchoscopy. The fight for a normal, functioning airway continues!

Since her last bronch two weeks ago, Dr. Prager said her airway looked about the same as far as the size goes (which is good news because at least it hasn't continued to close tighter), but there is now some pretty intense red bumps and irritation in the new airway around the graft. He isn't exactly sure what may be causing that irritation, but has a couple new things for us to work on before her next bronch in about two more weeks. We will continue to give her Prevacid and Ciprodex which is a steroid put directly into her trach, but now he has also prescribed a new steroid that she will be on for 14 days. Also, he recommended that we start doing the speaker valve over her trach as much as possible to force her to use the new airway. Hopefully with the medication and the increased air flow in her airway, it will reduce the intense irritation going on in there. Aside from that though, he went ahead and dilated the airway again and is anxious to see her back again in two weeks.

At this point there is no serious talk of getting the trach out. Dr P. said even if the airway looked perfect at this point, we still would have to give it a little time to make sure the new airway is going to grow as it should. So we have to work on getting it healed, then give it time to grow, then we may start the decannulation talks. Oh and we can't forget that her oxygen issues also have to be pretty stable and somewhat resolved too. So we shall see what time will bring!

On a side note, I'm just trying to really enjoy my new life here in Denver, and trying to not dwell on how annoying it is to keep traveling back and forth. This won't be ending any time soon so it does me no good to continue to complain I guess! I'm just so extremely grateful I have my parents (most especially my mom) who helps me with the drives, and my sister and her family for giving us a place to stay while we are here. I can't imagine how awful this would be if I didn't have the family support that I have. Thanks family.... we love you!!

Green Smoothie

I have always been known to have quite a sweet tooth, and everyone knows how much I enjoy candy. However, when I married Brad I realized I didn't have as high of a sugar threshhold as I thought. My hubby Brad, he can eat some serious sugar! Not only does he love anything sugar, he doesn't really enjoy enough veggies to balance it out. So I had to document this moment of life:

Brad drank one, big, huge green smoothie! It had lots of fruit and yogurt to make it taste really good, but it had lots of veggies too which gave it the nice, rich green color. His response, "does this have ANY sugar at all? Ugh..." But he drank it all and said it was pretty good. Success!

Now if only I could get this little girl to drink some too -

She's had a bite here and there, but hopefully with some persistence on my part she will start having more.

Something like this is usually the reaction I get when I try to feed her something:


ha ha... someday she will enjoy eating...

Home from Denver and 2 new babies!

Eden's last bronch in Denver was on the 15th and we came home on the 16th. I am so very grateful to my sister Tiffany and her family for giving us a place to stay while we are out there. We had quite a bit of down time during the week between appointments so Eden got to have tons of playtime with her cousins which she loved!

With the constant chaos of appointments both home and in Denver, I feel like Eden doesn't get a lot of time to be a normal kid, and to play with other kids, so I'm glad she got the extra socialization. It was especially fun to watch her and Wren play. Because they are only a few months apart, they are so cute when they play together and even battle for the same toys. I think these two will be good buddies as they grow older.

The bronch went well. The doc said that her airway is definitely trying to close up again, which he isn't surprised about, but obviously isn't happy about either. He said he would grade it a "B" which isn't ideal, but also isn't horrible. He said considering where her airway started from, that it is doing "ok". He dialated her airway again using a balloon type instrument which stretched it open again. The plan now is to see her again in two weeks to repeat the dialation to hopefully force the airway to stay open and heal as it should. We will keep our fingers crossed that it doesn't constrict too much which could possibly require another surgery.

I am so happy to be home (for many reasons) but most especially right now to see the two new additions to our family. Sophie (Michael and Jesse's baby) was born on April 6th, and Carson (Kally and Dallen's baby) was born on April 15th. I couldn't wait to get down to my parents on Sunday to see these two beautiful new faces, fresh from Heaven! :)





Being around these sweet little babies stirs up all kinds of weird emotions for me. I realize now everytime I'm around a newborn that I still have quite a bit of emotional baggage that I still haven't gotten over since Eden was born. Overall though, I just feel so much happiness for my siblings and their families. I'm grateful beyond words that they were blessed with these perfect, healthy, beautiful babies. Congrats Michael, Jesse, Kally and Dallen!

Being home from Denver has also allowed us more time to spend with family, and more time for Eden to get to know uncle Michael. She is usually pretty shy around him, and doesn't ever want him to hold her, but he continues to do fun things with/for her and he is finally breaking into her circle of trust! :)

She was a little nervous that he was holding her, but he was showing her a fun puppet show video on his phone which she thought was worth it I guess.

And who can't help but love a grown man who would be willing to ride in the wagon with her? :)


And finally, this picture is totally random, but I thought it was cute and didn't want to forget to post it. She definitely doesn't get this flexibility from me!

A Little, Tiny, Scratchy Laugh

Eden's voice is what I've been longing to hear for 22 months now. It's very quietly, and slowly starting to come! Let me start from the beginning which is when the stint came out of her airway two weeks ago tomorrow.

We started doing speaker valve trials once the stint came out, and we were hoping to hear her voice loud and clear. Unfortunately, that hasn't been the case, but as we have continued on with the trials the past couple weeks, we are starting to hear more and more of a little voice coming through. It's hard to explain exactly how she sounds, but it's basically just a really hoarse, scratchy breathing with an occasional quiet sound of her voice. We try to get her to make sounds, like "ma ma" or "da da" or "ahhh" but she has been so used to just breathing loudly through her trach, that she mostly just exhales loudly in the rhythm of the things we say to her.

As my sister and I were talking about this the other day, she said she thought maybe if she laughed it would force the vocal cords to vibrate and we might hear some sound. So we put on the speaker valve and started tickling her, and sure enough, there it was through the scratchiness..... a little, tiny sweet laugh. Of course, as I knew it would, it made me all emotional and I just felt so much happiness! I have never had the opportunity to hear her voice, and have missed the "experience" of hearing my child babble, cry, squeal, and most especially, laugh. I really just had to marvel in the moment and I was flooded with thoughts like, "wow, this awful surgery a few weeks ago really is fixing her" and "the nightmare is behind us and we have such amazing, positive things to come." I feel so blessed and happy with where we are today.

She had a bronch here in Denver last Thursday and her doctor is happy with what he saw which also makes me happy. He said it looked like the front of the graft was sinking in a little so he tried to dilate it and it sunk right back in. He thinks it may be some swelling and that as that heals he will be able to tell what the graft is doing. He also cut out some granulation tissue to clear her airway out a bit too. Overall, he thought it was looking great which led to the next big step which was down sizing Eden's trach. She went in with a Ped 4.0 and came out with a Ped 3.5 which has a smaller diameter so she is breathing a little more through her new airway. It is a huge step and testament to the fact that everything is going well with her airway. I just can't believe it and am so excited.

So because her bronch was on Thursday, we planned to come home on Saturday, but the doctor said he wanted to see Eden again this Friday the 15th so we just decided to stay. Though I long to be home, it's just way to hard to travel back and forth so for only a week it was way more worth it to just chill out here for the time being. I'm just so very grateful for my sister and her family and their willingness to let me stay here, eat their food, use their car, and everything else they are doing for us! Thank you Asay family.

So we will continue to do our speaker valve trials. It seems like every time we try she can tolerate it a little longer each time. I'm so excited too that as time passes, hopefully her vocal cords will continue to heal and we will hear more and more of her sweet little voice.

22 months!

Eden is now 22 months old, I can't believe it. At her check up at the pediatrician yesterday she was 19 lb 8 oz and 31 inches long. She puts on weight very slowly, and has been in the same size of 12 month clothes for a really long time, but she is definitely getting taller and I can tell because all her shirts are starting to get too short! It appears as though she is going to be one tall, skinny girl!

Today Eden and I are heading back to Denver for her first bronchoscopy since the stint was removed. The appointment is tomorrow morning and hopefully we will be out of the hospital by the afternoon sometime. Unfortunately Brad has to stay home to work this time and will actually leave on a business trip while we are in Denver so we will just miss each other as we come home and he leaves. It's crazy times in the Justice household, but we hold out hope that soon things will calm down and we will start getting bored with all our new found free time. :)

Good news, since the stint came out Eden has been asking to eat (which is a first), I'm usually the one trying to convice her that eating is a good thing. Bad news, all she wants to eat is goldfish crackers. I'm not exaggerating. If I try to give her anything but goldfish crackers she throws a huge fit, all the while she is signing "cracker" over and over again. She also pounds on the pantry door all day long if I don't respond fast enough and give her the crackers she wants. It's good she has a desire to eat something, but it's been impossible to try to get her to eat anything else.

To complicate matters even more, she has also been having issues aspirating while eating, which means some of her food is going into her trachea and maybe into her lungs. This can lead to some major illnesses, so I'm not sure I should even be allowing her to eat at all. So for the last 22 months I've been begging and sometimes forcing her to eat, now she is asking for it and the speech therapist thinks I should tell her no? What a dilemma. This is definitely something I will be asking the doctor about tomorrow. I know the plan is to get her airway stuff all resolved, and then hit the feeding clinic pretty hard to teach her all about eating. I'm just not sure what to do in the meantime when she begs for goldfish crackers. Sheesh.... this girl and all her craziness!

Look out Denver, here we come again!!

Something else....

Eden has been really healthy, and has been doing so good since the stint removal. However, there's one new problem...



Really? Her hair is falling out?

At this point we don't know exactly why this is happening, but the pediatric dermotologist has a theory that it may be alopecia aerata. My research suggests that Eden may have already been genetically predisposed to this, and something triggered it like the stress and heavy medications from her surgery a couple weeks ago. Apparently it is a autoimmune problem, and if Eden does have alopecia aerata, it means her immune system is attacking and killing the hair follicles.

Unfortunately there isn't a lot we can do to help stop this except we will start applying a topical steroid to her scalp to help reduce the fall-out and increase the chance of regrowth. The stuff I read online says there is a 50/50 chance that the hair will regrow, but then the percentage is even worse for people who get it at such a young age. We will pray for regrowth....

.....my faith is tested once again.