Ava's 1 Year Cranioversary

On 2/13/14 (yes almost two months ago), we celebrated Ava's 1 year Cranioversary (one year post op). If you read this blog you know that during that time all three of us were under the weather with sinus infections. But since then we've all gone back to being healthy and we've made our annual trip up to the St. Louis Children's Hospital for doctor's visits. This will be a trip we make once a year until Ava is in her teen's.

So we packed our bags and took off. We stayed with St. Louis friends Brian and Jennifer the evening before our visits, and enjoyed some adorable toddler play time. :)

Ava and Wyatt

This year's visit also included a CT Scan to take a good, in-depth look at that little skull to see how it looked and what the surgically placed plates were doing. I was very nervous about this part since A) it was supposed to be sedated and B) that's a lot of radiation (Ava's last CT scan was in October of 2012). So we arrived bright and early, with a thirsty baby, and were luckily told that since she didn't need contrast in the scan and was pretty calm that morning that we could try the scan unsedated. We were also relieved to hear that we only need this CT scan once every 5 years. Yay! Little Miss did great, with just a few tears that never spilled out when they wrapped her up swaddle style and scooted her under the scanner. Wynston and I were able to be right there by her side, comforting and reassuring her, while a nurse distracted her with some Mickey Mouse on an ipad. A quick scan and a juice box later and we were on our way out the hospital doors, easy peasy.

We made a morning trip over to Trader Joe's, then headed east to visit Wynston's sister in Illinois. We got to see her adorable baby bump, logged a LOT of good playtime with their dog Copper, played at an awesome park in their town, took Ava through her first carwash (hilarious faces on her part), enjoyed some delicious burgers and steak at Mike Shannon's and had a good night's rest.

Ava loves her some Copper.

Sigh...heart melts.

The expressions on her face during the car wash. So funny.

The park had swings with harnesses similar to roller coasters. Ava was a bit too small for these though.

Our final day up in St. Louis was a LONG one. Longer than expected. They call this visit a clinical assessment, and often refer to it as a team assessment. We didn't get much information about what to expect so I assumed the doctor's we'd be seeing would all be together...you know...in a team environment! Wrong! We saw each and every one individually. First plastics (Dr. Patel, Ava's Craniofacial Surgeon), then Audiology, then Dental, then Nursing, and finally Speech Pathology. For some reason this year we skipped ENT, even though they were on the list (and I'd filed for the PPO Waiver...but I won't even get into that side of things...grrr). We arrived that morning around 8:30 and left close to 2. With a sleepy, overstimulated baby, we were definitely ready to leave. But the good news is each doctor seemed pleased with Ava's progress and current state. We really weren't concerned at all, but it's always good to have a professional agree. Her plates should be dissolving now (that begins 12-18 months post surgery). All in all, a good visit, but one I am glad we don't have to do for another year.

Patiently waiting with other kids in the Craniofacial Institute.

Ava made this sweet friend while waiting to see Audiology.

Once again, I'd like to thank everyone who has sent prayers Ava's way during this last year. Without those prayers and the support we've been given, we couldn't have made it through this journey so smoothly. Life is just so darn NORMAL right now. 12-14 months ago, I could never have imagined that we would slip back into a good routine so quickly and that Ava would recover so well. We are truly blessed. <3

Fragile Blessings

Today, I've got a torn heart. Over the weekend I visited with a friend of a friend whose daughter has recently had an unexpected brain tumor found and removed. They were also sent to the St. Louis Children's Hospital, where the amazingly talented staff were able to treat and heal their daughter. Her only indication of the tumor was sudden, unstoppable vomiting (from increasing pressure on her brain). The tumor turned out to be about the size of an apple. In a little 10 year old's brain! So scary. Luckily, she is now in good shape, still as beautiful and charming as ever. What a scare for that sweet family.
I also read on Facebook this morning that a family I distantly know, has lost their little boy. They knew his life here on our Earth would be short lived, and this family truly appreciated and lived out each day to it's fullest. I cannot imagine the pain these young parents are experiencing right now.
Hearing about these things brings me back to just a few short months ago, when I was grief stricken with Ava's Craniosynostosis diagnosis and upcoming surgery. It's hard to believe that it was this time last year when we were in the early stages of trying to understand Ava's condition. Her recovery has been so thorough and rapid, it's just amazing to see where she is now. Unless you know what to look for, it's pretty much impossible to tell she had major cranial surgery this year. She's so beautiful, happy, exuberant. We are truly blessed to have had the medical treatment she needed, and the healthy future that lies ahead for her.
I guess in closing, and to try to bring these thoughts back on track, if you don't do so already, take some time today to say that prayer of thanks. A prayer for comfort for any families you know that are in need or pain. Give those little ones just one more hug and kiss. Tell someone you love them. Life is so complex, yet so fragile. Be thankful today.

A Breath of Fresh Air...well maybe not in my car :)

(Sorry, no pictures today guys. We've been so busy with work and party planning that I just don't have many new pictures to post.)

Last Sunday we traveled back to the St. Louis area for more doctor's appointments for Little Miss. We weren't too far into our drive when we figured out Ava had a stomach bug. This was our first encounter of puking in the car. Not fun. But luckily short lived as well. We stayed with Wynston's sister Leah and brother-in-law AJ, like we always do up there, and they have a new puppy!! He was so much fun. They also grilled for us, and AJ's sister and her family. They have the cutest little boy and a baby girl who was born 6 days after Ava. It was a really fun evening. If I can get my hands on some pictures, I'll share. It was adorable with a puppy and 3 little ones running around. :)
The next new challenge Wynston and I faced was getting the car seat cover back on after laundering it. We got it done, but it took a while!
That Monday morning I worked while Wynston and Leah played with Ava and Copper, the puppy. Then we took off for the Children's Hospital. We started with a visit to Ava's plastic surgeon, who thinks Little Miss is progressing as expected and that she looks great (I have to agree). We did ask about a new sharp little bump on her forehead, but he assured us it's just another screw holding a plate down. That kid and the work her doctor's have done just amazes me. All the plates and screws that were inserted during surgery will be dissolved 12-18 months post surgery, but for now if you try, you can certainly feel them. Creepy, but amazing knowing they are in there doing their job.
After our visit to the plastic surgeon, we continued on to Ava's eye doctor. To be honest, Wynston and I had been dreading this visit. Our first visit to the eye doctor resulted in news that her Cranio was causing astigmatism in one of Ava's eyes, and we had to practice patch therapy over her good eye for one hour a day before surgery. Patch therapy on a strong willed little cutie is not always fun. But we returned to let them peek at what changes Ava's eyes had undergone during and since surgery. The doctor was amazed! He said that Ava's eye had gone from almost a football shape inside back to a round basketball shape. He gave us the all clear on no patch therapy, no glasses, no surgery! We were so incredibly relieved.
So...while the drives are long and this one was especially not fun, we try to always make the most of our visits to St. Louis by getting family time in. And the good news from two of Ava's doctors was just what we needed to hear. At this point, we'll return to the eye doctor in six months. This is the longest stretch of time between visits since Ava's diagnosis last October, and it feels like a breath of fresh air!

Happy Girls!

Good things, good things, good things!!

A - Wynston is HOME! He recently went to Maine for a work trip. He was gone 6 days. Every day we talked about daddy, looked at his picture and called him.
He got home last night and was so excited to see Ava. He couldn't believe how much she'd changed in a week. She's not old enough to show a ton of enthusiasm in a situation like this, but she could NOT take her eyes off of him. Once she settled into the fact that he was back she wallered and wallered and wallered all over Wynston. They were in their own little heaven. In fact, they played so hard that Ava fell asleep for a little bit in her high chair during dinner.

                      

B - It's birthday week! I've mentioned it before and I'm excited! We have some very fun plans in the pipeline.

C - We recently found out our "return to St. Louis" schedule for the next year. I'd been dreading finding out how many follow up appointments we'd need. I had heard "several" but wasn't sure what that meant. Turns out that means the 3 week post op follow up which we've completed, another one in late April, and then one at 1 year post op!! I am so excited. It felt like we were living one trip to another. The next trip in late April is on a Monday. So I'm trying to plan on coming up that weekend and doing some fun things with our good friends Brian and Jen. They have a cutie named Wyatt, and he's 5 months old. Oh how Ava and Wyatt will have fun in the future. I hope we take them camping each summer, which is a tradition with us. If anyone knows of fun, cheap things to do in St. Louis, in springtime, with babies, please let me know!!

D - Our first float trip of the summer is on the books. I took zero (yes ZERO) floats last year. Not a fishing float, not a friends float, not even a me and Wynston hitting the river for the day. That is just something that hasn't happened since I started dating Wynston way back in high school. The 2011 summer was packed full of floats. As in 6 float trips. We knew we'd soon start working on building a family and moving into a new home, so we crammed in as many as we could. It was quite a fun summer.

This was on my 28th birthday. It was a fun day.

Wynston had AMAZING hair that summer. I miss his long hair.

 Wow, these pictures make me long for warm sunny days and a pre-baby body. Now that Wynston is home from Maine we are really excited to get back into eating healthy and working out regularly. :)

Ava's Surgery

Get ready, this may be an emotional rollercoaster ride. At least it is for me. It's not well written, switches from past to present tense and back, but I just can't seem to find a way to make this seamless.

The hard part is now behind us. Thank the Lord. As the Cranio community calls it, we are "on the other side". I think the only way to get through knowing your baby will be having major surgery, is to focus on the positive, lean on loved ones, have faith and get informed.

Ava's surgery so quickly arrived after the holidays were over. It was so nice to be distracted from what was looming over our heads for a short period of time, surrounded by family, friends, and holiday cheer. Once that had passed, I found myself emerged in research and planning. Packing lists were started, discussions with other parents of Cranio kids were had. I was feeling a strange mixture of anxiety and restlessness. Was what we had ahead scary? Yes. But it was the right thing to do to ensure Ava has a healthy future. Plus, I always knew she'd be handed over to experts; caring, experienced, talented people who knew exactly what they were doing.

I just wanted it to be over.

That's where we are today. Ava's surgery was two weeks ago today. We've been home from the hospital for 11 days now. Other than some swelling and an incision, Little Miss is exactly who she was before. Only now she's my rockstar super baby. She handled this situation beautifully.

I'm so glad that this has all happened while Ava is young and won't remember the pain and the healing. I'm so glad she won't remember being walked away from her parents by strangers, through a set of double doors. I don’t think Wynston and I could have hugged tighter just then. THAT is a moment that I'll never forget. It's one of "those" moments in your life. A snapshot that is forever tattooed onto my soul. But several hours later, I experienced another one of those moments, another shapshot. And that one was with me and Wynston standing by her bed in recovery, as she laid there bandaged and pale. She held up one little pointer finger at me. Her “one”. I reached down, and touched my finger to hers, and knew we were all going to be okay.

So, here's the breakdown of our 4 day visit to the St. Louis Children's Hospital...a place where miracles are happening every day.

Tuesday, 2/12/13 - We work till 3 pm, pack up the car, gather family, drop off the dogs with my brother and his family, and head to St. Louis. I think I've packed enough to furnish a small summer cabin. Haha. I'm a typical overpacker. But we were going to be 3 1/2 hours from home and I wanted to have everything we would need. We arrive that evening at Wynston's sister's house and spend the nighttime hours playing with Ava, me eating my feelings via 2 bowls of dinner, and bathing Ava. I sleep intermittently. Maybe a total of 3 or 4 hours.

Wednesday, 2/13/13 - It's the day. The one I've been marking off and counting down to on our laundry room calendar. I wake at 4:30, a good 30 minutes before I need to. We all get ready, and our 3 car brigade heads to the hospital. We have a 7 am check-in time. We arrive at Same Day Surgery and find we have a private waiting area ready with our name on it. We quickly get called back to Pre-Op. Wynston and I take our Little Miss back, and do the pre-op thing. Ava is playing in her cute little gown in the hospital crib, when she loses her balances and sits down hard. Her tiny two bottom teeth bite her tongue. This is a moment I've been waiting for, and of course, it happens today. Ava is fine, we spend a while meeting with doctors, saying goodbye to grandparents and playing in the playroom next door. There are so many other parents there with their little ones running around playing. Most of us have the same tight, "not gonna be afraid" looks on our faces. We are just reveling in the fun the kids are having. Soon it is time for Ava to head to surgery. See above for that moment. We hugged, kissed, and fought back tears. Wynston hugged me tight as they walked away, holding me together in more ways than one.

We get calls every 1 1/2 hours with updates. Doctors come out to chat a couple times with more updates. Wynston's sisters join us. We play online, read, eat chocolate, nap and watch one family after another get to leave with a fixed up little one. Soon none of the families that began the day with us are left. New families have arrived, most of them have left as well. At 3:30 in the afternoon, we finally get the word that Ava is in Recovery and ready to see Mom and Dad. Wynston and I hold hands on our way back there. Ava looks so peaceful as she lay there resting. She was pale and bandaged, but she was awake and very obviously recognizing us. We were given an envelope of her hair; it was what they had to cut before surgery.They let us have it to save as her first haircut. *tear*
That evening we were moved up to the Pediatric Intensive Care Unit (PICU).

Surprisingly, we were allowed 4 guests at a time in her room. So we all took turns that evening visiting with her. Soon Ava took her first bottle and drank the whole thing. We had wonderful nurses. I sent Wynston to his sister's that evening for some rest. He was so drained, and would need his energy. I was running on some sort of "mommy energy high"...the same thing that hits when you are in the hospital with your baby after you deliver them. We fought some nausea that evening, and the night nurse and I kept her in good hands until Ava finally got to rest.

Pre-Op. Wearing beautiful jammies sent to us by Cranio Care Bears.

Thursday, 2/14/13 - Happy First Valentine's Day Little Miss. Her little Valentine's Day bib I had made for her is snapped on and she is given cuddly stuffed animals to celebrate. We stayed in PICU until that afternoon. As we waited on a regular room on the 12th floor, I was so happy to watch one tube after another get removed. We learned this day that our doctors perform their rounds very early in the mornings. :) Each day of our stay we see the Neuro team and the Plastics team. These guys, along with most of our nurses, all look so young. Probably my age or not much older.

But they are all so compassionate...they look Ava and her charts over with such care and expertise. They answer all my questions, even if it is 5:30 am and I probably make very little sense. Ava's prayer chain was placed on each crib she stayed in.

My Little Valentine. Bib made by a local talented lady.

I go find the Ronald McDonald suite on the 5th Floor. It is a family getaway. It has computers and tv's for distraction and entertainment, a kitchen full of goodies, laundry stocked with supplies, and nice spacious showers available. I look around, hand wash Ava's fox she sleeps with, and head back. The nice lady that was volunteering in the McDonald suite soon arrives at our PICU room, with a rolling cart of goodies. All gifts to choose from, provided by the Ambassadors. I still need to figure out what that is. I find black eye masks, take one and thank them for their thoughtfulness. This eye mask and some ear plugs we'd brought were my saving grace when it came time to nap.

By early evening we are settled into our own room way up on the 12th floor.

We are roommate-less, so there's room to spread out and relax. Ava is down to two IV's (one in each foot), so she has more freedom to spread out as well. Family visits; Wynston and I are able to retreat to the cafeteria for some food. We have been gifted by many of our friends with care packages full of treats and goodies, which are being enjoyed, but we found that taking a half hour or so a day to go down and clear our heads really helps.

Plus Wynston’s sister and her husband join us each night and when that brother-in-law is around, you never know where the conversation will turn.

The entertainment was nice.

As nighttime approaches, Ava's eyes begin to swell shut. We knew this would happen, and that it would be the worst of our stay. We had been warned by doctors, nurses and other parents. Family is there to witness her frustration. She struggles with fussiness for about 30 minutes before we get her to sleep. It was very hard. Once we get her calm and resting, and family leaves to go rest themselves, I find myself leaning on her crib and actually crying for the first time since we watched her get walked to surgery. I'm crying out of frustration. Wynston hears and asks what's wrong. All I can tell him is how unfair it is for Ava to go through this, and how much I hate that for her. She's just an innocent child. I know the nurse will be coming shortly with another round of medicine, so I pull it together and am thankful Ava is resting.

One thing that is soo hard in the hospital is those rounds of medications.

Each round of medicine is followed by a flush; so you'll do a 15 minute IV drip, followed by a flush, followed by a 30 minute IV drip, followed by another flush. It feels like the hours pass only by the beep of the monitors. Then vitals need to be collected every 4 hours. Plus pain medicine as needed. It seems like the only time during the night when you can get uninterrupted sleep is from 4 am on. We are lucky we don't have a roommate that night so that Wynston and I can each have a chair to sleep in. They unfold into long beds. But the chairs are next to the windows, out of the way of IV cords and monitors. The windows let in a lot of that cold February air.

Friday, 2/15/13 - At 5:30 am the Plastics team arrives in our room. I wake to the sound of them visiting with Wynston over by Ava's crib. Though the doctors seemed surprised that Ava's eyes are swollen shut, they are telling us that she looks good, Dr. Patel will be by shortly to remove her bandage and drain, and that we should be able to be released tomorrow morning. I was shocked. We were prepared to stay until Sunday or Monday. Ava still had her bandage on for goodness sake! By 7:30 am, when Dr. Patel arrived, Ava's eyes  were opening back up. Wynston and I watched anxiously as he removed her bandage. I'm honestly not sure what I expected. Her head looked so good! I mean, baby girl had an incision from one ear to the other, but I think that they did a good job of not cutting too much of her hair off before the surgery. Ava's swelling seemed pretty minimal, thanks to the steroids she was receiving to help keep that in check. Her eyes never blacked, just bruised to a lavender shade. Dr. Patel had obviously been told that I very nervously received the discharge news. He told us that we could leave the next day, but that there was no rush and we could stay till we felt comfortable. Family arrived to see Little Miss without her bandage.

Ava's incision.

Eyes mostly swollen, crazy hair, but still enjoying some gifts sent Ava's way.

We just couldn't get over how good she looked. As her eyes continued to open, she returned to her old self. Soon it was all we could do to keep her happy in that little crib. I wonder how many laps of the 12th floor we all made with her. Friday we received a roommate. An 11 year old boy, with nice parents. Having a roommate wasn't as hard as I expected. We just tried to stay quiet so he could rest. Ava had one IV removed from her foot that day, and accidentally removed the other herself. She wasn't done with her IV meds yet though, so we had to have that one put back in. Ava and I were resting together in a chair when the IV team arrived. Everyone else was out resting in the waiting room. My mom arrived in our room about halfway through. Let's just say it was hard. Local anesthesia was not provided because it would cause her veins to shrink. Luckily it didn't take too long.

That night our family left to rest at Wynston's sister’s, we watched Lion King, and Wynston and I shared one of those strange chair beds. It was crowded, but our little family was all together and we'd made the decision to head home the next day after all. Over the course of that Friday I found myself feeling so confident in Ava's incision and activity level. I knew we could safely head home.

Our Little Miss tucked in tight with her fox.

Saturday, 2/16/13 - On Saturday's the Neuro and Plastics teams don't arrive quite so early. I think we saw them all after 7:30 am, which was a first.

We happily told them we felt good about leaving that day after all. Ava's incision still looked great, her swelling was progressing. We even got her some yogurt and applesauce that day since she was quickly growing tired of a liquid diet. I asked the nurse to give Ava a bath before we left, and closely watched as she carefully washed Ava's hair. The doctors all assured me that Ava's outside stitches were just "superficial"; that there was a whole other layer of "strength stitches" underneath. We could pretty much do no harm to her precious little head. We started getting things together, gathering balloons, flowers and stuffed animals all so thoughtfully sent to Ava. We were out of there by 1 pm.

I was VERY nervous about the long car ride home and how Ava would tolerate that. We stopped in Rolla to eat a late lunch at Steak n Shake and filled Ava's prescriptions.

Ava slept pretty much the whole way to Rolla, and the whole way home after lunch.

A happy girl at lunch on the way home. Still swollen.

Like I've said before, she's a champ. We made a quick stop to see Poppy and my brother and his family, get Lily (our dog) and headed on home, where Grandpa Randy was also anxiously waiting to see Ava. Both of our dad's had to return home a day or two after Ava's surgery. They were both planning on returning to St. Louis over the weekend, but I guess that Ava just wanted to come see them instead. Must be why she did so well and got released early. That girl's got some amazing grandparents. :) That first evening home, we found Ava back on the floor, crawling around like nothing had happened. Ava and I slept in the front room that night.

And that's it.

There's more to the story, but some parts we'll keep to ourselves. Special memories and such. Ava has done so well at home. She's cruising around the living room, crawling all over the place, back to eating solids, growing like a weed, probably starting to cut some top teeth. She returned to her own crib her second night home. We even went out and purchased her a bigger, convertible car seat. I'm really hoping this one is extra comfortable because we have many more trips back to St. Louis ahead of us.

At this point, two weeks after surgery, Ava's swelling looks great. I think it got worse before it got better. Maybe from coming off the steroids, and not really being able to have her sleep elevated each night (we try, but gravity usually wins that battle). Ava's sleep pattern has been off since we returned home, but we expected that and it seems to be improving daily.

She also had her eyes swell back shut for a few hours one morning. But today she looks and acts great. Her stitches look to be healing correctly and should be dissolving soon.

Babies are amazing. Very resilient.

Land of the Lost

I've been wracking my brain lately over what and how to write up my blog post on our surgery experience. I'm torn.

We tend to be private, and keep details pretty contained to a tight inner circle until we are ready to share, if that ever happens. But I'm truly afraid if I don't write it down, I'll forget. And I don't want to forget. I also want some other scared, angry, confused mommy (or daddy) like me to find our story and find some helpful information. To deal with a difficult situation, I research, research and research...and sometimes cry in the bathroom, haha. But I mainly try to prepare myself via knowledge. So if I can give someone some insight into what to expect, then it'll all be okay. I'm working on finding the happy medium of "not too much, not too little". Maybe I'll find that place soon.

I've gone back to work this week, so maybe today, tomorrow or sometime this weekend I can sit down with a glass of wine and a snoozing baby and turn the jumbled mess of memories and emotions in my mind into something beautiful that I can look back on and appreciate. Maybe. Last night, I told Wynston I'm just ready for life to feel normal again. And I asked him when that day would come. We're not sure yet.

So, I didn't come here today to bring everyone down on a wintery Friday morning. I really just came to stop in, say sorry for the post delays, and that I'm working on it. And to add some Funnies to the page to celebrate Friday. Here you go.

Home Sweet Home

And we're back. We are home several days early because Ava has done so well. When we were first told we could return home as early as Saturday, 2/16/13 I was NOT ready for that news. Ava's bandage wasn't even off yet. Plus it was 5:45 am and I had just woken up to the doctors coming into our room with the news.  Anyway, things changed, and we decided leaving that Saturday was best for everyone. We are home, starting to settle back in, and life is starting to resemble normalcy for us again. Said normalcy is still a ways away, but we get closer each day.

I'll be back soon with a recap of this leg of the journey. I'm not sure that you all are interested, but I need it to sort through these foggy memories, document Ava's journey, and maybe give other parents of a "Cranio kid" preparing for surgery some insight into what to expect.

I can't end this post without another big "thank you" to everyone who has thought of, prayed for, sent gifts to or helped care for Ava over the past few days and weeks. The prayers and well wishes kept God looking over Ava and kept Wynston and I strong during this time. The gifts were so thoughtful; some useful and nutritious and some entertaining or comforting. Last but not least, we couldn't have made it through the past week without the help we received caring for our Little Miss. Whether that help was someone watching our pets or house while we were away, someone sitting in her room during the middle of the night or during the evening so Wynston and I could go grab a bite to eat in the cafeteria, someone bringing in a warm cup of coffee to power me through, someone providing a meal so we wouldn't have to leave her room, or someone making sure we had a clean bed and warm shower to escape to for a few hours or someone giving me a hug or a pat on the back during a hard time. We are so blessed.

Ava's Headband AND The Many Faces of Ava

Loooook!! I got out my digital camera and charged it!! Better pictures finally. Some of these are digital camera pics, some are cell phone pics.

There are two wonderful organizations that have sent Ava care items for her upcoming surgery and recovery. The first is the Cranio Angel Network. They make little pirate hats for boys to wear post surgery and headbands for the girls to wear post surgery. The idea is to help camoflauge the healing incision and keep little fingers off! The other organization is Cranio Care Bears. They sent Ava a care package stuffed (seriously, I couldn't get it all back in) full of toys, hospital items like ibuprofen, lotion, tissues, mints, granola bars, a set of zipper pjs and a warm hat, and my favorite, a prayer chain. Each link on this chain is fabric, with a hand written affirmation or prayer on it. Simply amazing. We'll be hanging this over Ava's bed in the hospital.

We've also been gifted with so many thoughtful and generous care items and cards for Ava over the past few days. People are amazing. It's easy to become convinced that the world is no longer full of decent people if all you do is read Yahoo and watch the evening news. But when you look around, I hope that all of you find that your world is as full as ours is of awesome people with big ol hearts. It's a good thing to know. :)

In Need of Distractions

Ava's surgery is 16 days away. And if you know me, you know that my lists are already started....my packing list, Ava's packing list, nonperishable food that isn't gag-worthy, etc etc. One list I need to work on is a "distraction" list. Her surgery will last several hours. The nurses will be calling frequently with updates (I think once an hour) but I'm sure we still need some time wasters.

Got any ideas?

• Anyone have a great book you'd like to lend? (we have a Kindle too, if you have a loanable ebook!)
• Anyone watched a good DVD lately?
• Maybe bring some felt, fabric, ribbon and thread and make some bows or flowers for Little Miss? She'll probably wear those nice large knit headbands for a while to help keep baby fingers off her healing incision (once it's can be covered).
• Anyone need me to file their taxes? I'm sure I could figure it out in 4-6 hours!! (kidding, obviously)

Doctor Visits

Last week we completed the last of our pre-surgery doctor visits to St. Louis. Since Ava's CT scan, we've met with five different doctors, over three different visits...one in October, one in November and one in January. It's been pretty crazy, but after surgery Ava's follow-ups will be in a "team" setting, which means several doctors will be with us all at once. This will make our trips immensely easier and make it easier for all of them to work together, since they each specialize in different areas. Anything we can do to cut down on gas bills and time spent in the car is okay with me! Good thing this last time we had both of our mom's with us to help entertain Ava during the long drive.

This was our first trip to meet the Craniofacial team. We were so unsure of what lay ahead. Ava looks so small here to me, and her hair has grown so much since October.

Playing with a fun toy at the doctor office last week.

Waving!

I just realized Wynston wore the same shirt to see the last doctor as he did on our first visit!

Ava loved that little bead maze so much that Grandma Janie got Ava one of her own!