The Million Dollar Question

"How is she doing?"

I think I must get asked that at least 25 times per day and I still don't have a good answer! There are so many things to say.

She is opening up to us, smiling often, beginning to play with her siblings, finally starting to look around!  But, of course, two years of neglect have affected her in many ways and that will take time, possibly years.

This journey has been HARD for her - everything she has ever known has been completely changed, she is experiencing a very full, busy, exciting, and loud world all at once.  It is very scary to her! She has no way to communicate with us, she can hardly see what is happening around her, and she is just now learning that she isn't completely on her own. Many times, there is no way we can comfort or help her regardless of how bad we want to or how much we try. She cries A LOT (and Mommy does too!), she bangs her head and bites, she growls, she scratches, she rocks, she seeks out things that hurt, she does NOT like to be held .... she is trying to process all of the new stimulation and all of the changes in the only way that she knows how. But slowly she is opening up, she is relaxing, she is smiling and even laughing! And the other night, she let me hold her while she was eating! It is truly the most amazing journey to be a part of.

Some have asked if having the ability to speak Polish to her would help. Unfortunately it wouldn't, she was never taught to understand or communicate in Polish or, believe me, I would be learning it!

She loves loud noises, lights, bold patterns, bouncing and swinging (the faster the better), her ball pit, and tickling.  She crawls, sits independently, and can pull herself up onto her knees.

We found out that her vision is VERY poor which helps to explain why they thought she didn't like to be touched in the orphanage.  The pediatric ophthalmologist estimates that she can only see about 1/9 of a meter (less than 4.5 inches) in front of her face clearly so anyone (or anything - like a spoon for example) coming toward her would really startle her. We have been working hard to establish routines when we are coming near her so that she knows that we are coming and what we are about to do. We ordered special glasses from Korea to accommodate her very large lenses and her very small nasal bridge, traditional glasses frames here in the states would have caused the lenses to sit right on her eyeballs. They arrived and are currently at the lab getting the lenses put in. These will address the near-sightedness but it will take time to see how her eyes adjust (she also has nystagmus, astigmatism, and strabismus) before we will know how much she is actually able to see. We would appreciate prayer as she adjusts to them and *hopefully* wears them!!

The neurologist ordered a sedated MRI (this is scheduled for 1/12/16) and we discussed many of her behaviors. He estimates that it will take about a year to determine which behaviors are related to being in the orphanage and which ones may have another cause. He suggested some strategies for helping her learn to sleep. She doesn't sleep hardly at all (maybe 4-5 broken hours total per 24 HOURS!) and gave us some advice about her rocking and stimming behaviors.  He also brought up the idea that her development suggests that she could have been sedated in the orphanage, the nuns could have thought they were helping her since every kind of stimulation upsets her so very much and she does so much self-harming. It makes sense and would explain many of her delays.

Since we have started thickening her bottles, Amelia hasn't gotten sick once (other than a runny nose). She was having pneumonia, ear infections, and very high fevers monthly in Poland. The pulmonologist is convinced that it was due to them feeding her thin liquids while she was laying on her back and sleeping. He prescribed treatments for asthma but expects her to improve exponentially as we continue to feed her safely.

Her swallow study did reveal aspiration and poor management of the thin liquids so we are continuing to thicken and feed her in an upright/reclined position to prevent aspiration. It is truly a miracle that she is alive - she, quite literally, could have drowned in her sleep the way that she was being fed :(.

We also visited our favorite general surgeon. Amelia's gall "stones" are GONE!  We found out that they weren't actually stones but "sludge" and it was likely caused from them not feeding her very much. Now that she is getting good nutrition, things are cycling through her system better!  She does have a couple of things in her tummy that we are going to keep an eye on. And I asked about scars that she has on her bottom - they are from tearing due to severe constipation and a couple of them are really big :'(. Poor baby!

We are addressing her constipation and she is now on reflux medicine as well. She spits up quite a bit even on the thicker bottles.

To summarize: Amelia is actually very healthy!!  Nearly all of her medical concerns were a direct result of her life in the orphanage and many of them are already resolved or are resolving.

Claire saw the surgeon at the same time for management of her Hirschsprung's disease. She is doing very well and other than making a couple of tweaks to her diet to better manage her constipation, we don't have to do anything else right now!

We have taken a little break from trying to get Amelia to eat solid foods - it just was causing WAY too many tears and I felt like it was breaking her trust in me more than it was building it. We are focusing on bottle-feeding goals instead. The first one being to get her comfortable eating in a more upright position. It may just be a coincidence but I have seen HUGE progress in our bonding since we stopped attempting solid foods ... it was also consuming hours of our day so that could be part of it too since we can now spend that time playing and bonding doing things that she enjoys!  Beginning in a couple of weeks, she will be starting feeding therapy HERE AT HOME!  We are so excited about this and feel like she will be able to make better progress here where she feels more comfortable.

She is eating 5 bottles per day - each one has one pouch of organic baby food, 3oz of water and 3 scoops of formula [we should buy stock, I know ....]. We also use breast milk once or twice per day instead of water and add 1 scoop of formula for the calories but it isn't recommended to thicken breast milk with purées so we have to be more careful with those bottles. She has gained TWO POUNDS in the month that we have been home so it is working!!!!  She is wearing 12mo clothes now!

Amelia is 20b 10oz (0.33%) and 29.75" (0.13%) - both less than the 1st percentile on the typical growth chart, less than the 3rd percentile is considered "off the chart." Claire is 20lb 0oz (2nd percentile) and 29.5" (6th percentile).  So they're both tiny little things. They are very similar in size (10oz and .25" apart) but Amelia is growing at a much faster rate than Claire so we will see what happens. Amelia is 25 months old now and Claire is 18 months.

Claire is doing so well at PT that she gets to take the months of January and February OFF!  We will still be working on goals at home.  Her current goals are: standing independently, learning to go down the stairs, and walking with a push-toy.

Amelia is also taking a break from both PT and OT but her break is so that we can focus more strongly on her sensory and feeding needs and on bonding!  Her goals are: pulling up to her knees with knees together, sitting upright, crawling faster, and crawling around and over objects.

We have tools to work on all of these things at home and will still be doing "PT" here.  We are excited to see how much progress they both make when we go back the first week of March!!!

Both girls will continue to do speech (feeding for Amelia) therapy.

Next week we see the endocrinologist, GI, and we have speech therapy - taking out OT and PT gives us THREE less appointments each week so that will be really nice for us to have that little break.

As always, thank you for cheering us on.  We appreciate your support and encouragement so very much!!!

"I’m gonna run and not grow weary

I’m gonna walk and not grow faint

Rise up on wings like eagles 

To soar

I know with everything you’re with me

I know you’re working as I wait

Lift me up on wings like eagles

To soar"

-Soar, Meredith Andrews

Update from HOME!

Wow, we have been BUSY!!!!  Thank you for your patience with us while we got settled in and took a little break from updating.

Last you heard from us, Amelia's adoption documents were finally read and we were sending Justin on the train to pick up the final court decision and new birth certificate.

He was able to get them just fine and made it back in time to meet me at the passport office on the same day. Our sweet friend rented a car and came and picked up Anna and Levi so I only had to take Claire and Amelia with me! He got off the train at 2:15, we applied for the passport at 3 (they close at 3:30) and the passport was ready THE NEXT MORNING at 9:30am (it's supposed to take 2-7 days)!  By 10am we were at the embassy doing our visa interview, they told us that Monday afternoon would be the earliest that we could get the visa but we called at 2pm just to check on it and it was already printed!!!!  So by 3pm, we had her visa in our hands and were frantically trying to get a hold of our travel agent to see if there were still available flights home for the next couple of days since it was a holiday weekend. It turned out that the only one with five available seats left was leaving in 15 hours (at 6am)!!!!! We had some issues with our credit cards not working (we had so many unexpected expenses with the hospitalizations) but after a very hectic and stressful 2-ish hours, we finally had our tickets booked (thanks to Mom and Dad for letting us borrow the money) and were starting to pack. If you have never done this document process before or followed a family that has, it usually takes 5-10 days to get all of these steps done so we were quite shocked [and very, very pleased!!!!!] that it went so quickly. We absolutely had some major favor on our side.

The kids did pretty well on the plane. We got lucky and some young guys were in the bassinet row so they traded seats with us and we had TWO bassinets which came in quite handy when Amelia would have moments where she just needed space. I was very worried about her ears since she was still recovering from a ruptured ear drum and very bad ear infections but we put in some drops right before we took off and she seemed to be fine!  We did have quite a bit of crying but what two-year old who is still adjusting to really any stimulation wouldn't cry a lot on an 18-hour traveling day??? It was a little frustrating because they insisted that we buy a plane ticket for Amelia (since she's 2) but once we were on the plane, they wouldn't actually let her sit in it due to "safety reasons" since the buckle wouldn't fit her properly and she doesn't sit stably-enough. So so silly!

Our sweet neighbor picked us up at the airport and we came home to a clean and decorated house, a full fridge and pantry, homemade chocolate chip cookies, balloons, and flowers!!!!  We are so thankful to have such generous friends.

Amelia is doing well here. She seems to be more relaxed [maybe because we are!]. She is beginning to seek out interaction during parts of the day (crawl toward us, reach her arms up to be held, etc.), there are still many more times that she wants to be left alone but it is a HUGE step! She has started to play with toys and to look up occasionally while she is playing and crawling and if she sees something that she wants, she tries to go and get it! She loves to look at lights and bold patterns, especially stripes. If Claire is wearing a shirt that she likes, she will follow her and try to climb on top of her to look at the pattern [Claire does not enjoy this]!

She is eating 5, 6oz bottles per day. We are fortifying them with additional formula to make them 27cal/oz (formula and breastmilk are typically 20) and thickening them in order to try to get in all of the nutrition that she needs and to keep her swallowing safe. This means we are going through a can of formula every three days!! She still won't let us near her with any solid foods so we have been doing a lot of playing in the highchair and with food near her. Playing in the highchair is really good for her because it puts her toys at a higher level and helps her to look up more as well! If we put food in her mouth "just to see," she gags until she spits up, bites, and cries and then doesn't want us near her again. Letting her be in control of what goes in her mouth and when seems to be the best way to help her so we are patiently waiting and offering experiences as much as we can.

She has been to the pediatrician, GI doctor, dietician, ENT, PT, ST, and the cardiologist so far. This week we see PT, OT, speech (for feeding therapy), opthomology and pulmonology.  She is also getting a full abdominal ultrasound this week to check on her gall stones and to make sure everything else looks okay (kidney, bladder, etc.). Next week we see neurology and our general surgeon.

She has been scheduled to get ear tubes on Friday. The ENT is worried that her ear canals may be too small for the smallest tubes but we are going to try.  She has had FOUR ear infections in the eight weeks she has been with us and despite just finishing up another course of antibiotics, he said that her ears are still very full of fluid. Hopefully the tubes will allow the fluid to drain and then we will schedule a hearing test. Claire is getting scheduled for a hearing test as well.

The GI doctor gave us a referral for the general surgeon to review Amelia's gall stones and hernia. She also has a pretty severe diastisis recti (abdominal separation) but we will likely just keep an eye on it for a bit. He ordered a lot of blood work to check Amelia's nutrition and then we met with him and the dietician together to figure out Amelia's plan for eating. She isn't on the growth chart for height or weight but we suspected that. We will go back for weight checks and adjust as necessary. Hopefully we are able to get her gaining and growing like she needs to with just little tweaks!

The cardiologist found an ASD (hole between the atria) and also pulmonary stenosis (this means that there is an obstruction of the blood flow between her heart and her lungs). We don't need to do anything about either one right now, we will just keep an eye on them and she may, at one point in the next couple of years, need surgery.


I have been thinking about something the last couple of days and I wanted to share ....
Amelia IS absolutely doing so so so amazing. The amount of things that she has overcome in such a short time is miraculous actually but it's important to be honest too that it's easier to share the cute photos of her smiling and appearing to look at me [when really it's a rattle that I'm furiously shaking and I took 173 photos to get one that looked like she was sorta looking at me .... ;)].

When I think about sharing the more "real" stories/pictures/videos of Amelia I get protective ... I worry how she might feel when she's older and sees them or if she would want me to share them, I worry about letting my own heart "go there" in remembering where she has been and what she has gone through as I'm sure you can imagine, it is very emotional for me to think about, and I worry what others might say.

But then I'm convicted .... It's so similar to something I do in my own life and with my own story. It's easy to share the good moments, to bury and hide the ones that reveal the vulnerable.

Right before we left for Poland, a dear friend called me out... in a good way! You see, the enemy tries to keep us quiet. He uses shame to keep us from telling others what we have been through but it's sharing those most vulnerable and real moments that God can often use our testimony the most. Shame keeps us feeling isolated. I want Amelia to know what she has overcome and I DO NOT want her to ever be ashamed, it's her testimony, it's her redemption story, how the Creator of heaven and earth saw HER and called a family from the other side of the world to come! How she was broken and He treasured her, how He healed her. How He had patience and continued to love her and wait for her while she bit, screamed, and fought at every turn. He loves us all just the same!

And there's another reason why it's important to be authentic about our journey and what Amelia has gone and is going through: the 153 MILLION orphans still out there. People NEED to know what these children are facing. It's BAD, it's really really bad. BABIES are left alone, they aren't fed, they aren't touched, they die for no other reason than that there wasn't enough time or money or help to meet their basic needs .... CHILDREN are sent to adult institutions where horrible things happen to them and they never, ever come out and it isn't just in third world countries, it's in Eastern Europe and Asia and South America! Yes, it's painful to think about, yes, it's hard to see .... but they NEED us to see. They NEED someone to care.

When we picked Amelia up from the orphanage, she was going a full DAY with not one single wet diaper. She didn't know how to hold a toy or shake a rattle and wasn't able to track objects with her eyes. Everything points to that she had absolutely NO stimulation whatsoever. If you set her on the ground, she would immediately crawl toward a door, wall, or piece of furniture to bang her head repeatedly on it. I would hold her in the carrier as much as I could and if I was in the bathroom or making a meal or something, the big kids would follow her around and pull her back over and over again from the walls. If she wasn't banging her head, she was rocking .... and grunting, and grinding her teeth. If she was upset or overstimulated AT ALL, she would immediately bite her hands [hard!] over and over again. She had NO idea how to communicate with us. She never looked up from the ground, not while sitting, not while crawling. I would lay on my back on the ground and put her on her belly on my chest just to get her to look at me. We had to hold her while she cried every night until she fell asleep because otherwise, she would bang her head in the crib until she fell asleep. In the bathtub, she'd try to put her head under the water to the point that it took two of us to keep her safe. She didn't even know how to EAT unless she was sound asleep. She didn't like any touch or interaction with us at all (except for tickling if she was in the right mood and she likes the sound of the rattle) - this is when we got most of our great pictures.

.....and look at her now <3.

So ..... I promise to be more intentional about sharing the "real" moments and being more honest about the challenges mixed into our unspeakable joy!  For Amelia. For our family. For orphans. and for you. That God may use our story to help others and to further His kingdom!


We wish you many, many blessings!!!  As always, thank you for cheering us on!  We have got to be the luckiest family in the world <3 <3 <3.

"Middle Sister"!!!!!!!

We had to put pillows behind her back to get the seat belt to fit.

These are the bassinets!

The moment right after her passport was stamped, making her
officially a US Citizen!!!!!

Claire is standing so well!!

They all fell asleep on the way home from a long day
at the doctor.

Silly girl <3!

Claire and her new orthotics!  She likes them.

At big sister's Christmas program.

At the cardiologist.

I love this one!! <3

Merry Christmas friends <3.