Wednesday, September 28, 2011

Going Home

Today has gone so incredibly well and they decided we can go home! Ava stood for the first time earlier and is even walking now. At first she was a little wobbly, but she is getting the hang of it. Dr Campbell wants us to come back in 4 months because she is growing so much, so I guess we will be back soon. CHOP is beginning to feel like our second home in a strange kind of way. We are so relieved it's gone so well, and now she just has to heal. Here are some pictures from the day.

Tuesday, September 27, 2011


Well, everything went very well today. I have to thank Heavenly Father and all those who prayed for Ava and kept her in your thoughts. Dr. Campbell is a great surgeon and CHOP is a great hospital, but I have to say I felt something today that compels me to give thanks to Heavenly Father for orchestrating all these things to work out and to all of the people who helped draw down the power of Heaven on Ava's behalf. There are always so many risks and difficulties involved with surgery and I don't understand how it all works, why sometimes things work out better than others, but I can't deny the feeling I had today that Ava has been blessed and so have we.

Here are some pictures from the day. Ava had her post surgery moments of being groggy and a little wincing from time to time, but it's pretty amazing, she hasn't seemed to experience much pain and everything has gone so smoothly I can hardly believe it. I would have to say this is the best it's ever gone post-op. Dr. Campbell said it all went smoothly also. If we are lucky, Ava might go home tomorrow. Most of these pictures were taken early in the day when she wasn't feeling as well, but tonight she was crawling around her crib and making her stuffed animals dance.

The big day-Surgery # 10

Today is Ava's expansion/partial replacement of right VEPTR surgery. I can't say it's getting easier at this point to let Ava go into surgery. It always pulls at our hearts to let our sweet Ava go into surgery. Ava is a little angel. She gets upset and screams and cries when she is afraid of something a nurse has to do, but I can't even say what a good sport she is about mostly everything. It makes me tear up just writing about it. This morning as we drove to the surgery, it was around 5:30 am and definitely too early for Ava to be awake, but she was just humming and talking sweetly in her car seat as she looked out the window. I couldn't help but feel we were riding in the car with an angel. She is getting older and i think she has more stress about the surgeries than ever before, but she really is so patient and forgiving. Of course I'm her mom and definitely biased, but we just love this little girl!

I don't think I mentioned it yet, but Dr. Campbell had said at her last surgery in June that we could wait 6 months until her next surgery. At her follow up appointment early this September however, he took a look at her x-rays and said, "this girl is growing like a weed!" He said she needed surgery soon, and here we are, back in a little less than 4 months for another one. I am so glad she is growing well. We do have the G-tube to thank a lot for that. A lot of these kids struggle to gain weight because of burning so many calories from breathing so fast and other issues, and although it is my great desire to be rid of the G-tube, for now it's really helping our little girl. Today Dr Campbell is expanding the Veptr's in her back and replacing a part of her right one which will cause her to be a little more sore than a typical expansion. They started the actual surgery at 9:00 and a nurse came in just now at 10:00 to tell us they are finishing up! That was super fast! We will keep updating as time permits.

Saturday, August 27, 2011


Two years old! I can't believe it! We were planning to go to a petting zoo this morning for Ava's Birthday, but with it being rainy and not knowing exactly when mean old hurricane Irene was coming, it all put a damper on our plans. Grandma and Grandpa Smith are also away right now in Alaska so we weren't planning on having the full Birthday celebration with cake and everything until they get back anyway. It just felt a little funny; being such a great day to celebrate such a great girl and not having more going on. I felt bad that I hadn't planned better, but at the last minute we decided to buy a little cake mix and have cupcakes and dinner with the Brownings. It was nice. Ava was happy to play with her cousins and I think she felt like it was a special day even though we didn't do a lot. She did get some great gifts from Grandparents and was VERY happy about that(thank you Grandparents)! Elijah and Ivy made a cute sign for Ava to see when she came upstairs and that made it feel more special and official! I guess I just had more of an expectation of what this birthday should mean or be because last year Ava had just had her cleft palate repair and had to wear no-no's on her arms. I imagined all these perfect scenarios of how it was going to be, things I would make, and how it would make up for last year, and in the end it wasn't like any of those I imagined, but Ava was happy. I think I'm learning that it really doesn't take much and things don't need to be perfect; in fact they really shouldn't be. Adults get these funny ideas in their heads of what it means to be happy, and then kids remind you how it really is. I have so much to say about Ava, how well she is doing, how much she has come alive in the last while and how she is such a bright star in our lives. Morgan and I couldn't feel luckier to be the parents of Ava. I will write more this next week as well as post a slideshow of Ava's first 2 years. Here are a few pictures from the fun evening we had with Ava and the Brownings.

We went in on this kitchen with my parents and Ava absolutely loves it! I do too and don't mind it being in our family room because it's so cute. We probably won't leave it in the middle of the room but it's very pleasant and just the perfect size for Ava.

Goodnight little frog!

Thursday, June 2, 2011


Ava sleeps peacefully now. Surgery went well yesterday, but it was a little harder on Ava than last time because Dr Campbell had to replace part of the rod and it makes her a little more sore than just a regular expansion. This morning she is still pretty out of it and not her normal self quite yet, but she shows small signs every once and a while that she will come around soon. Dr Campbell said he stretched her out quite a bit and showed us the x ray which looks better than before. Morgan and I tried sharing one of the small chairs to sleep on last night and couldn't ever get comfortable so we are a bit groggy today, but other than that we are happy Ava is okay.

Wednesday, June 1, 2011

Back to Philadelphia-Surgery # 9

We're back to Philadelphia for Ava's 2nd expansion surgery. Things are going very well. Ava is still in surgery now but every so often they give us updates to let us know how it's going, and so far so good. Ava has been doing very well lately and even began walking a couple weeks ago! We couldn't be happier with her progress and will keep updating!

Monday, April 18, 2011

Something new

Good things do happen. Morgan got a job! We found out in March and it's taken me this long to write about it. Its for a Landscape Architecture firm in Columbia/Clarksville Maryland. We couldn't believe it worked out. It was one of the jobs he was most interested in and it happens to be pretty close to my parents house in Maryland. We move next week! Its so soon and not quite real to me yet. We will say goodbye to Logan which will be sad in some ways, but we are glad to be moving on. It will be weird leaving Utah behind for good. We are so used to coming back all the time. It's this world thats always there.  It's a place that feels very protected from the rest of the world, very innocent and safe and has a character you won't find anywhere else. I will miss that, and family and friends that are still here. We are excited to go back east to be near my family and all the loveliness of Maryland too though.  Oh Life!

Wednesday, February 23, 2011

So far so good

Surgery went very well yesterday. Dr. Campbell expanded both rods and bent one of them to help straighten her back a little more. He seems very pleased with Ava's progress and it is quite possible that we could go home today, if not tomorrow. Ava is still a little out of it and uncomfortable, but every now and then she shines through it all.

Tuesday, February 22, 2011

Surgery # 8

My mind is kind of blank right now as we wait for Ava's surgery to be over. Whenever Ava is in surgery, this kind of happens to me. I don't really feel worried, I actually feel glad that she is finally here and we are getting it done with, but this whole experience can be pretty draining. She wasn't too happy when we got here and they had to draw blood. I didn't realize how strong she has gotten until they tried to take her blood and she fought like crazy. My least favorite part was when morgan, me, and the nurse had to hold her down, but eventually they got it. After they left, she fell asleep and woke up in a much better mood. We took a little video of the sweet pea before they took her away.

Untitled from Morgan Handley on Vimeo.

Saturday, February 12, 2011

Cruising and crawling

Ava has been doing great. Since the beginning of January, she began walking around the room (while holding on to things) and a few weeks ago she even started crawling! We never thought she would crawl because of her back, but she decided one day that she wanted to give it a try and just took off. Everyday she makes her rounds; from the chair to the couch to the bookshelf to the desk to the fridge and down the wall to the bathroom where she always tries to get to the toilet, but that is where she is stopped by me, mean mom. These last 4 months without any surgeries has felt like we have been on vacation, but soon it must end. We fly out east for her first expansion surgery this next week. It seems it is about time for her VEPTR to be expanded because she hasn't been able to keep her food down as well lately. This is Morgan's final semester and we have a lot to think about. We are looking for jobs (especially ones with good benefits), trying to sell our house, we have Ava's surgery, Alyssa is getting married in April (very exciting), and it seems like there are a lot of other details that I won't bother to mention, but it is craziness!

She is really good at getting all the magnets off but not back on

Playing hide and seek