Happy Holidays

It's been so interesting how so many of the special dates involving Jonas and his adoption have corresponded with holidays. I made a list just to see for myself, so I thought I'd share it here:

2012

• Jonas's Birthdate-swim with dolphins in New Zealand

2014

• St. Patrick's Day-submit our first application to the adoption agency

• Thanksgiving-announce our adoption plans to family

• Jonas's 2nd Birthday-celebrate with him in the orphanage, five days after meeting him

• Christmas Eve and Christmas-celebrate with Jonas in the orphanage

• New Year's Eve-celebrate in Moscow, Russia, the city where Jonas was born

2015

• Aubree's Birthday-book flights for 2nd visit

• Valentine's Day-arrive for 2nd visit, celebrate with Jonas in the orphanage

• Aubree's Late Grandparents/Godparents' Anniversary Date-court date to legally become Jonas's parents

• St. Patrick's Day-take Jonas out of the orphanage forever

• Easter-Jonas gets baptized

Holidays, especially St. Patrick's Day, will always hold a special place in our heart when we think of our little Jonas and how he came to be a part of our family!

Happy Healing

Jonas gets better each day. He definitely still needs to take Tylenol and/or Motrin throughout the day, but his face is a lot less swollen, and his personality is shining through more and more. We know he's feeling pain sometimes, because he whimpers at times, which is something he never did before. And tonight in his bath, he cried out when I washed certain areas too roughly. It was interesting to wash his hair and feel a totally different shaped head. It's strange to look at pictures of what Jonas used to look like and see what he looks like now, though I know we still don't know what the final result will be, especially since there's still a fair amount of swelling around his eyes. He likes to stare an extra long time at pictures of himself lately. I wonder what he thinks of his new look?

Here are some pictures of the fun Jonas has had lately...

He played with his doctor kit, including the silly glasses, on the day he came home from the hospital. He thought it was hilarious when Zack yelled in "pain" when Jonas gave him a shot. I think he was glad to be on the administering instead of receiving end for once!

Jonas went with me to Molly's vet appointment yesterday to get medicine for her ear infection. He started whimpering a bit when the vet came into the room until he realized that this was a doctor for the dog, not him!













Jonas had a good time playing around at Toys 'R Us last night, though I think Zack had a better time than he did in the boy aisles looking at action figurines and motorized cars. I definitely can't let those two go to the store alone!

Our trip to get ice cream afterward was fun too, though Jonas didn't eat much of his cotton candy ice cream with rainbow sprinkles. We know our son's not at 100% yet when he's not finishing his ice cream!

We all went for a hike today at Lair of the Bear, the same place that Zack and I mountain biked on our very first date almost eight years ago. I use the word "hike" loosely, because with a toddler, you don't go very far or very fast!

Jonas got to do some climbing, exploring, and stream crossing, along with throwing sticks and rocks in the water. It was nice to get some fresh air after so many days in the hospital and enjoy some sunshine after the rainy days Denver has had lately. And I think it was good for both Molly and Jonas to run around. Zack starts his new job next Monday, so we're trying to make the most of our last week together and let Jonas have some fun as he heals.

Our Music Man

Jonas loves making music. He likes going in our music room to play the piano or watch Zack play the guitar, a word he can now say. Last night, Zack suggested we take a trip to Toys 'R Us and go out for ice cream. I agreed that Jonas definitely deserved it after making it through surgery! So we got him a few special toys, including this drum set that has lots of fun instruments inside.

This morning, Zack turned on some YouTube videos of professionals playing various instruments, and Jonas played along. It was pretty cute. Here he is trying out the trumpet. Above he's playing along with a drummer, and below, he's watching a xylophone player intently before trying it himself.

We don't know which instrument Jonas will end up playing when he gets older, but I'm sure he'll choose something. Right now, he seems to be leaning toward the drums, but what toddler doesn't love banging on things? Some day we'll all be able to make music together!

Home Sweet Home

We're home! Jonas got to bust out of the hospital at about noon today, less than three days after surgery. That's a much shorter stay than any of us expected! He just took a nice long nap but woke up with a fever of 103 degrees, so we forced him to take his Tylenol and Motrin a bit ago, and now he's down to 102 (101 by the time I finished this blog post). We're all trying to relax on the couch, watching The LEGO Movie.

Jonas was definitely ready to go home. He had a lot of chocolate milk this morning and a little bit of food, took a bath, and ran around the hospital with his big blue helmet and a lot of personality. His eyes are even more swollen today, probably because he slept in his hospital bed instead of my lap. Even though he was elevated, it wasn't the same. But they still never swelled shut! We all got more sleep last night, because the nurses only had to come in every few hours, which was nice. Someone from the neurosurgery team came by to check him out this morning and said he was ready to go. Woohoo! Here he is looking out the window from his sixth floor room.

So now the real healing begins. So far, Jonas doesn't seem to mind wearing his helmet. It's too big for him, but the one that was the right size was only available in pink! The blue ones are back-ordered, so they put some foam pieces in the one he's wearing to make it fit better. He has to wear it any time he's up and walking around. I'm glad, because he's always bonking his head. Here he is having fun destroying the balloon Zack bought for him.

So as it's singing in the movie we're watching, "Everything is awesome!" We're home, surgery went well, and Jonas is on the mend. But after this guy came to Jonas's hospital room this morning, we learned one more thing about our boy. He's not a fan of clowns!

Back in Business

Jonas is having a pretty good day. It sounds like we'll probably go home tomorrow! The nurse and doctor took out one of his IVs and the drain out of his head (not fun moments). He hasn't been hooked up to the other IV all day, though he hasn't eaten all that much. He did drink a decent amount of chocolate milk, so the nurses were happy with that. The swelling has increased, especially around his eyes, but they haven't swollen shut, probably because he slept upright in my lap all night (yep, not much sleep for me again!). His fever has gone down, and although he's still warm, he's doing alright on just Tylenol and Toradol (the IV form of ibuprofen).

This morning, I took him for a ride in the wagon around the hospital. He made an Elmo headband with some volunteers on the first floor and got some Playdough and colored. There was also a dog he got to pet (named Molly!). Even with his swelling, everyone was still talking about how cute he was. I think his little wave and adorable way of saying "bye bye" help with that! This afternoon, Zack took him to the playroom, and I guess he had a good time touching everything. Right now, he's running around the room like his normal crazy self, talking and singing and getting into everything. We're worried about him banging his head, but it's good to see him turning back into himself.

It's still hard to tell what Jonas is going to look like long-term. Even when the swelling goes down, it can take a year or more for some of the lumps and bumps to smooth out because the plates can take that long to absorb into the bone. But he looks pretty good other than his swollen eyes. His plastic surgeon, Dr. French, came into the room today and spent a long time with us talking about how his surgery went and what they did with his skull bones. She even drew some diagrams; it was pretty interesting. She was happy with how Jonas looked and said his swelling is still less than expected.

Hopefully Jonas will get his appetite back and continue to do well so we can all go home tomorrow. I can tell that the more he gets his personality and energy back, the harder it will be to stay cooped up in this room much longer! I can also tell that I'm going to be very happy he'll be wearing the protective helmet, because this energetic kid doesn't even realize he's hurt at all right now. Thanks for checking in on us!

A Hard Day's Night

Jonas is doing pretty well, considering what he's been through. Last night was tough for all of us. He wanted held, and because various things were being done to him throughout the night (blood pressure checks, IV checks, drain emptying, blood count checks, administering medicine, etc.), sleeping wasn't really an option. I held him in the lounge chair, and because Jonas never knew if the people coming in were there to hurt him or not, he started whimpering whenever somebody entered the room. I probably got just over an hour of sleep. He probably only got a few hours more than that.

Today was overall a good day. With Tylenol and Oxycodone, Jonas didn't seem to be in much pain. I think he was hurting this morning before that got in his system. After the medicine kicked in, he sat up for awhile watching cartoons, eating Kix, and playing Zack's ukulele. He slept a fair amount off and on throughout the day, and he still didn't like it when various people came in to check on things, but he smiled some and talked a little. We're starting to see his personality shine through at times. He ate applesauce and ice cream this morning, but then he threw up a banana all over Zack (I got peed on, so we're kind of even!). He drank some chocolate milk and ate part of a tangerine and some watermelon, but otherwise, the Oxycodone seems to make his appetite disappear. Zack went home for a few hours this morning to take care of Molly, and then I was able to take a nap this afternoon before going home for a bit to feed and walk Molly tonight. Otherwise, we're pretty much holding our little guy and trying to keep him happy and comfortable.

Our surgeons came in earlier to see how Jonas was doing. They say his swelling is better than expected right now, but it will probably get worse before it gets better. We're happy that his eyes haven't swollen shut (yet). He was able to have his IV unhooked for most of the day, since he was eating, but it's back in for the night, and he has a bit of a fever tonight. He should be able to get his drain out tomorrow morning, and it sounds like we'll be going home on Sunday or Monday. They dropped off the helmet he'll have to wear, which looks a blue foam hockey helmet!

I can't believe Jonas's surgery was just last night; it feels like we've been at the hospital for a week! It was so weird to drive home tonight and see normal life going on outside of this building. It's strange to think of people going to school and work and everything while our whole lives are here in this one room. It's also really strange to be in a hospital overnight, as any surgery I've had was one where I got to go home that day. I can't imagine being one of the families whose child has to be here for weeks or months. We are lucky that we'll be going home in just a few days.

Here was my view earlier today when I woke up from my nap. Zack was holding Jonas, and they were watching the movie Frozen. Jonas was holding a blue stuffed dog that our friends Paige and Jeff had delivered to his room (thanks guys!), and in the wagon was a huge gift basket full of snacks sent by Zack's new company. Yep, he'll be starting a new job on May 1, working for Colorado University-Denver. He's had ten wonderful years at Accenture (they've been great to us in so many ways), but the opportunity to not have to work out of state every week will be awesome for our family. The fact that CU is sending a gift basket to us before Zack's even started there makes us feel really good about the company he's joining. And the timing of his starting there worked out perfectly with his adoption leave and Jonas's surgery.

Anyway, Jonas is sleeping peacefully now on Zack's lap, but I'll be switching with him soon, so I should go. Hopefully the healing continues to go well. Thanks to everyone for their caring e-mails, messages, posts, texts, calls, prayers, etc. We love how everyone is rooting for Jonas to get well soon!

Midnight Report

Wow-Jonas looks totally different. His forehead is so flat; it makes his whole face look wider. I couldn't believe the change. At first I didn't like it, because I missed my baby, but it's growing on me. Zack thinks he looks beautiful. It's hard to tell what the final result will look like, as he's already started to swell up, but the triangle head is definitely no more! I do miss his pointy eyebrows.

We're all up in our room on the 6th floor now. Jonas is sleeping peacefully at the moment. He's woken up a few times already, usually when the nurses come in to check his blood pressure or something. He was super thirsty and hungry at one point and ate some applesauce and ice cream, so that was a good sign. I got to hold him for a little while, as did Zack (we both got some blood on our shirts!). He's got one IV in his arm giving him fluids and medicine, and a back-up one in his leg. There's also a drain in his head with a bulb at the end to squeeze out excess blood, which looks pretty strange. They'll pull that out in a day or two. The incision over the top of his head is quite large, but his dark hair actually hides it pretty well. It's not as scary-looking as I thought it would be.

We got a glimpse of the Jonas we know when he was awake. He said "Papa," did his adorable gasp when he heard a noise across the room, pointed at some things, and said "hi" in his usual fast and cute way. His throat is definitely raspy from the breathing tube, and he's made hand motions up toward his head and down below, so we know he's feeling something in the areas that were operated on. Poor kid-we just hope he's not feeling much pain.

Our nurse comes in every hour, but we're going to try to get some sleep ourselves here pretty soon. It's been an exhausting day. We're just glad surgery is done and that he's doing well so far. We know the swelling is only going to get worse, and his eyes may be swollen shut tomorrow, but we'll deal with that as it comes. Let the healing begin!

He's Out

Jonas is out of surgery. He lost more blood than expected (400 cc), but he had a transfusion and is supposedly doing well. The surgeons say they are happy with how things turned out, and that they were able to create a significant change in the shape of his head. Because of the bone shaping they had to do and its placement, he currently has some gaps where there is no bone on the top of his head. He'll definitely have to wear a protective helmet for six weeks (maybe longer-they will reevaluate then), and over time, it's hoped that bone growth will cover those gaps. Our biggest fear is that he'll face a second surgery at some point in the future, but we're going to try not to worry about that now. We should get to go back and see him any minute now. It's been a long and exhausting day, but the scariest part is over, and I can't wait to see our little boy!

Right Now

Jonas is in surgery right at this very moment. It's already been a very long day, and we've got a long way to go. The poor kid couldn't eat breakfast this morning or have his usual snack. He kept rubbing his tummy and pointing to the kitchen; it broke my heart. Zack was able to take him and Molly for a walk while I finished packing, so at least he got some fresh air. I put his shamrock shirt on him, and off we went.

We got to Children's Hospital for check-in at 10:45am, and then we were taken to a holding room where various nurses and doctors came in to check on Jonas and talk to us. We had to sign a bunch of forms, answer the same questions over and over (which is fine-they are very thorough here), get his head marked on the spot they'll be fixing, and try to keep a hungry and tired two-year-old entertained for a few hours. It was exhausting, but the hardest part was yet to come.









We put on coverall outfits and hairnets and masks at about 2pm (Jonas is wearing Zack's in the picture), and we got to walk back and be with Jonas while they gave him the anesthesia in the operating room. He was super scared when Zack had to lay him on the table and when they put the mask on him, but he fell asleep rather quickly, and I'm glad he didn't have to get any pokes while he was awake. We kissed him goodbye, I rubbed his pointy little head one more time, and then we had to leave. So hard.





They spent about an hour getting him ready. Yesterday the nurse told me they wash his hair/head for like 45 minutes and use an entire bottle of shampoo! He had two IVs put in, as well as an arterial line for the blood transfusion he'll probably need. One fun fact...we found out his blood type is B+, so that's our theme for the day (be positive!). The urologist already finished his circumcision, and we got a call about 20 minutes ago that they had started on his head about ten minutes before that (so at about 3:30pm), and everything was going fine so far.

So now we're expecting to wait at least another three hours before he's out of surgery and in recovery. We're all set up in a private room in the waiting area (hooray!), since his is a longer procedure. We've got our computers, snacks, pillows, and phones, so we should be all set. I'm definitely looking forward to him being on the other side and seeing what he looks like.

Everyone here at Children's Hospital has been so nice and helpful. The nurses and doctors are extremely friendly and reassuring. And everyone has fallen in love with Jonas. I don't think I'll ever get sick of hearing how cute he is or what a great personality he has, even though I had nothing to do with it! Anyway, that's the update for now. Sounds like all is going as planned; we're just waiting for it to be over now. Goodbye to Jonas's pointy little head!

Our Little Superman

Well, tomorrow is little Jonas's surgery for his metopic synostosis. If you don't know what I'm talking about, you can read about it here. We spent the morning at pre-op appointments, learning about what exactly will be happening tomorrow, and then the poor kid had blood taken again. I don't know what it is about his veins, but it took the nurses several tries to get the blood flowing, and he's already showing bruising tonight from the two pokes they did. You would think that Children's Hospital employees would be used to working on little ones, but they moved that needle around in his arm like he was the hardest case they'd ever had. It happened last time too. He of course cried, but this kid is so sweet that he stopped the minute it was over and even cheerfully said "bye bye" to the lady who drew his blood. He kills me! We ran into his surgeons, Dr. Wilkinson and Dr. French, and we said hello to them. They liked Jonas's red Chuck Taylor shoes!


This evening, we wanted to give Jonas a special and fun experience before putting him through what he has to go through tomorrow, so we took him to Chuck E. Cheese's. It was a BLAST! He ate pizza, played games, and rode rides. His favorite was the little carousel. He waved like a pageant queen as it went around and around; everyone was cracking up at how cute it was. And yes, I put the Superman shirt on him on purpose!

Some rides he just sat in, because he got scared when they started to move, so we didn't have to spend coins on those. Jonas earned a whopping ten tickets with the games he played, so he got a Tootsie Roll, which he was pretty excited about.

We came home and tried to feed Jonas anything and everything he was willing to eat (peanut butter, crackers, a tangerine, goldfish crackers, etc.), because he won't be allowed to eat anything tomorrow. He ran around like a crazy kid for awhile, probably from all the excitement of the night. He put this bag around his neck on his own and danced around!











Now Jonas is asleep, and I'm enjoying catching up on all the kind messages from friends and family around the country, wishing us all good luck tomorrow and letting us know that they're praying for us. My parents even took a special trip down to Notre Dame (a 90 minute drive from their home in Michigan!) to light candles for their grandson at the Grotto, so they'll (the candles-not my parents!) be burning during his surgery.


We know Jonas is in good hands, but we're still dreading tomorrow. While he's in surgery, I plan on writing the long overdue thank-you notes for all the lovely gifts Jonas received before and after we brought him home from Kyrgyzstan. That way I can focus on thankfulness instead of fear (thanks for the idea, Aunt Kathy). And, I'll keep in mind all the fun we had tonight and the huge smile on his face, which no stupid skull surgery can ever take away!

P.S. I'll have access to WiFi at the hospital, so I'll try to keep this blog updated over the next few days while we're there, letting folks know how Jonas is doing, but I won't be posting public pictures of him while he's swollen and healing, as I don't think that's necessary or kind (to him). If you're a parent with a kid with craniosynostosis, and you happen upon this blog in your search for more information, please contact me, and I can share pictures privately with you.

P.P.S. There's an organization called Cranio Care Bears that sends care packages (for free!) to kids around the world who are having the surgery Jonas is undergoing tomorrow. Jonas got his box last week, and it was full of goodies like snacks, toys, hats, a prayer chain, and more. Here's a cute picture of him with all of the awesome items from the package. This kid is ready to tackle tomorrow like the Superman boy he is!

Grin and Bear It

Jonas wore his "Bear Hug" shirt today in honor of going to the zoo for the first time.

At the start of our visit, he was a big fan of all of the animals. He got close to a zebra, giraffes, a tiger, had fun climbing things, saw a sea lion show, etc.

Then Jonas got tired. Or hot? Or hungry? We're not sure, but he passed out on the way home, so we think he was tired (and we tried giving him a snack and taking off his coat with no success). Basically, he didn't want to see any more animals. He waved his hand dismissively at every exhibit, declared "no," and looked away.

It was kind of amusing, because sometimes you could tell that he actually was interested in the animals, and he'd look and start to point, but then he'd remember he was "not interested" and start waving his hand and "crying." He was a little happier when we let him out of the stroller to run around, but we didn't stay much longer after he had had enough. But we did manage to get our picture with the bear to match his shirt!

I bought a year-long membership, so let's hope Jonas likes the zoo a bit better next time, because we'll be back!

Life Lately Again

This is just another picture post to show what we've been up to lately with Jonas. We're trying to pack as much fun in as possible before the dreaded surgery on Thursday.

Jonas and I made some play dough the other day. He liked measuring out the flour and stirring everything together. And he looked super stylish doing it in his warm sweater.

Jonas only played with the play dough for about five minutes before he got bored, even though I pulled out cookie cutters and showed him how it was okay to smash/pound it and everything. Oh well.

Jonas learned to kick a soccer ball at the park this weekend. At first he kept trying to pick it up with his hands, but he eventually got the hang of it. He's definitely right-footed, and he's definitely more interested in running away down the path or toward geese than playing soccer. Note Molly's tail doing a photobomb!

Jonas wanted to chill on the porch swing after riding his bike out front today. He was okay with Molly chilling next to him. Actually he gave her a big hug right after this picture was taken.

Here's Jonas standing on Molly's bed out back, doing his classic "What was that?" pose. He had just heard some other dogs barking down the street, and he wondered where the sound was coming from.

Then he decided to climb over Molly to get off her bed. In case it's not obvious, Jonas is totally digging Molly now. Since he's learned how to say "eye" and "nose," poor Molly gets her eyes poked a lot as he proudly demonstrates his knowledge by pointing them out on her. She handles it well.

This doesn't break any child labor laws, right? Jonas totally loved vacuuming this afternoon. He even got mad when I tried to take the vacuum back from him! He's also a huge fan of throwing clothes into the laundry machine and trash into the garbage can. Hooray for having a little helper!

This picture is from last week when we were at one of Jonas's many doctor appointments. He's seeing all sorts of specialists before his surgery, so he's gotten very used to waiting rooms, screening stickers (that blue apple on him), hospital bracelets, and being examined. And check out that pose he does with his hands! They totally must have taught him that at the orphanage, because anytime he realizes I'm taking a picture of him, that's what he does.

And this is after an hour of waiting for the doctor, when we were both starting to lose our minds (Mommy more than Jonas, probably!). So we took silly selfies and tried to be patient. 

Two more days of fun before surgery day. I've been giving his pointy little head lots of extra rubs and kisses!