Monday, November 28, 2016


We walked through our front door with Amelia in our arms ONE YEAR ago today!  And what an adventure the last year has been :).

Sometimes in the business of life and the overwhelmingness of therapy and appointments, it is difficult to remember just how much change this year has brought for our little girl so we thought that we would take a moment to reflect on just how far Amelia has come!

First, she requires as much or more attention as about 5 infants combined (yes, really!) and she does NOT sleep well and that can all get very overwhelming in the day-to-day ... We have found that taking time to reflect on her long-term progress is really important because, in the middle of it all and with how much time and energy we spend working on Amelia's therapies and goals, progress can feel very slow-going.

In order to support her development the best that we could, we had to "go back" to all of the developmental stages that Amelia missed due to her neglect .... beginning with responding to EVERY cry immediately (which is pretty much non-stop for a rarely-sleeping, two year old who is terrified of everything AND angry at the world), just like you would a newborn, in order to encourage communication, to develop a bond, and to help her to finally feel safe. You'll have to trust me that holding and rocking a 20lb, 2 year old like a newborn who is terrified of touch and faces and trying to bond with them and teach them that they are safe while they simultaneously act like they are being tortured and try to claw your face off is exhausting work!!!  And at the same time, we were attempting to tackle her health, her surgeries, her eating, and her self-harming behaviors ..... It has been quite the wild adventure AND the most rewarding journey of our lives.  LOOK HOW FAR SHE HAS COME <3!!:

One year ago, Amelia rarely ever lifted her head up from the ground.  Her favorite thing to do was bang her head on the wall, the sliding glass door, the furniture, her toys ...... all while staring at her shadow. Now she loves to look around and explore.  She crawls and bear walks.  She climbs the stairs and the furniture, she pulls to stand, and she walks along furniture and behind push toys.

One year ago, Amelia's nervous system was too overwhelmed to even look at toys. She turned all toys upside down and put her mouth to the speaker so that all she saw was white and she could feel the vibration with her lips.  Needless to say, electronic toys had about a 2-3 day lifespan in our house before all of the drool in the speaker ruined them.  Amelia still loves noise and vibration but she also loves to look at her toys!  She loves the lights and the colors, she especially loves blue and the contrast in things that are both black and white.

One year ago, Amelia self-harmed and cried inconsolably and what seemed like never-endingly anytime something upset her (which was basically everything,!). She was terrified of touch and faces. She didn't understand that she could communicate in any way and didn't even expect (or desire) a response to her crying. Amelia now makes the sounds "baba" "mama" and "dada." She raises her arms when she wants to be picked up and even bear walks over and pulls herself up to a stand while holding onto our legs if we don't get the message right away ;). She LOVES to be held. She expects a response when she cries and sometimes cries just to be held. She doesn't often make eye contact but she loves to look at our faces now, especially our mouths.  She gives "kisses" because she likes the tickles on her lips. She laughs.

Amelia is no longer inconsolable when she cries. When she is upset, a cuddle with Mom or Dad does the trick and, within minutes, she can be happy again. She has started to understand peek-a-boo and, one day last week, I even caught her trying to "chase" her siblings around the living room!

Amelia isn't starting school this year, she just really needs more time at home but we plan to enroll Claire and her together next fall.

One year ago, Amelia was TERRIFIED of food. Just seeing a spoon made her self-harm and cry.

Amelia now "eats" a product called Nourish in her bottle AND on a spoon.  It is the ONLY thing that she eats but it contains everything that she needs and works okay for now.  She does nibble on crackers but she likes to crunch on them and then spit them out without swallowing.  She doesn't even like candy or ice cream and she only touched her birthday cake long enough to throw it as far as she could ;).

Since arriving home, Amelia has had four surgeries.  First, she had ear tubes placed, she still has some hearing loss in her right ear but otherwise, there are no concerns with her hearing. Next, she had her adenoids out which made a HUGE difference in how often she was getting sick. In April, she had a feeding tube placed. This really helped us to build trust again with feeding because we didn't have to force anything and were able to let her eat at her own pace. We can supplement her nutrition through the feeding tube while she sleeps overnight. Finally, she had her tonsils out. Within the next year or so, she will also be having heart surgery to repair two heart defects.

Amelia is pretty healthy now! Having her tonsils/adenoids out and switching to only the thickened food made a HUGE difference for her.  And since starting her new food, she is no longer taking any medication.  She takes four supplements that we mix into her bottles and that's all!!!  Truly amazing.

When she arrived home, her vision was -10 and she had pretty bad nystagmus and strabismus. With visual stimulation and glasses, her prescription is now -5 and her nystagmus and strabismus have improved!

Age: 2
Height: 29.75" (0.06%)
Weight: 19.00lb (0.66%)
Head Circ: 17.3" (1.0%)
Clothing Size: 6-9mo
Shoe Size: 2

Age: 3
Height: 31.75" (0.02%)
Weight: 23.4lb (2.24%)
Head Circ: 17.9" (1.73%)
Clothing Size: 18-24mo
Shoe Size: 4

But most of all ..... our scared, angry girl is HAPPY!  Truly, truly happy <3.  And her smile is just amazing!!!!

We are SO thankful to everyone for supporting us and praying for us during the last year. We couldn't imagine a better village for our Amelia.  Our hope for her in the coming year is that she is able to develop relationships with her family and, hopefully even make some friends! And that she would continue to make improvements with communication and eating. We hope to be able to get out of the house more!  And we cannot wait for her Polish siblings to be home for good :). Amelia's younger siblings are pretty afraid of her (she bites / scratches), especially Claire, but the teens give her so much love and attention, it truly is therapy for her and so special to watch!!!

Thank you for cheering us on!!!!!

Thursday, August 4, 2016

Two [and Two and a Half] Year Update!

Claire turned TWO in June!  We have had a busy summer but I wanted to take some time to update everyone who has supported us with prayer and encouragement so faithfully.

First .... Pictures!!!

Claire is 32.25" (9.08%) and 24lb 5oz (12.0%)
Amelia is 31.5" (0.05%) and 23lb 9oz (4.41%)

Claire is WALKING!  It's wobbly but she's doing it. She is working on walking more steadily.
Amelia is bear walking, standing up straight, and walking along furniture! She is working on climbing and squatting now.

Claire signs more, eat, and milk. She says mom, dad, and up. She is working on following simple directions, drinking from a cup, and verbs: kiss, hug, kick, sleep.  She is also working on the signs: open, close, and help.
Amelia is taking small tastes of crackers, pirate's booty, and applesauce. She is working on exploring food on her tray, coming to her name, tolerating playing around other kids, and increased tolerance of food in her mouth (applesauce and crackers).  She also found her VOICE this month (!!!) ... before this, we have only heard her grunt and growl.

Claire's 2-year check up is coming up this month
Amelia is being monitored and will have her ASD closed when she is bigger.

Claire struggles with O2 levels and respiratory issues when she has a virus.  She was hospitalized at the end of June for this but recovered well.
Amelia has pulmonary stenosis and asthma but we have had no recent issues.

Claire is going to trial being off of reflux meds. We are starting a digestive enzyme and probiotic. She is also starting a new multi-vitamin that is specifically formulated for kids with Ds. She is on miralax to help with constipation and we monitor her bowel movements carefully and she also  takes DHA/omega-3.
Amelia is going to trial a safer reflux med twice/day and start a digestive enzyme and probiotic. She is also starting the multi-vitamin and DHA/omega-3. Amelia really struggles with bowel movements... she takes miralax and gets water through a feeding pump overnight [and we have tried many other things that haven't worked]. We are trying coconut oil in her bottles now as well as switching to a new formula. Amelia has been losing weight steadily over the last couple of months.  To hopefully help with both her weight gain and her bowel movements, we are trying a prescription formula that she can drink orally or we can put it in her g-tube.  We are hoping that she will drink it so that it doesn't set back any of our feeding therapy progress!  This new formula will also be a BIG blessing as her current formula (infant formula) is EXPENSIVE when it is the sole form of nutrition for an almost 3-year-old!! The new one is formulated specifically for tube-fed children (not babies) and will be a better fit for her nutritional needs.

Claire is doing great, we are just treating her for constipation.
Amelia has now had TEN silver-nitrate treatments for her granulation tissue and has been using twice/day steroid cream almost constantly since April but otherwise, she is doing well. She had her feeding tube replaced yesterday.

Claire's is perfect! She will continue to be checked every 6 months due to the high-incidence of issues with vision for kids with Ds.
Amelia's full prescription is -10 and she has nystagmus, strabismus, and astigmatism. Her current glasses are -5 (giving her the vision of what a -5 person would be able to see without glasses -- this is not taking her other vision issues into account) to help her to slowly adjust to wearing the glasses and to the change in her vision. We will work up to the full prescription as she can tolerate it. She IS wearing her glasses fairly regularly now!

Claire has ear tubes. She will have her hearing tested every six months because she continues to struggle with fluid-related hearing loss.
Amelia also has ear tubes. She has mild, permanent hearing loss in her right ear and her hearing in her left ear is good.

Both Claire and Amelia have an appointment next Friday for surgery follow-up (adenoids / ear tubes) and they will continue to be monitored for sleep apnea and probable tonsil removal as soon as they are big enough.

Claire's right kidney has scarring and is small due to a bad kidney infection when she was three months old (right before heart surgery). We just keep an eye on it but she is doing well.
Amelia isn't followed by urology.

I think that's everything!  The girls really are doing well.  They are FINALLY starting to interact with each other a little bit which is so fun to see!  They haven't wanted anything to do with each other for such a long time.  Amelia made HUGE strides this summer with our kids from Poland.  All of the extra attention was therapy for her, she is looking around, standing upright, and has chunks of the day where she is seeking out others to play and interact with her.   Now if only she would start sleeping ..... ;).

As always, thank you for cheering us on <3.  Sometimes "our down right beautiful life" can feel overwhelming but it is ALWAYS a blessing!  We appreciate your prayers, love, encouragement, and practical help along the way, it truly does make a difference.

Tuesday, January 19, 2016

Three Months "Home"!

Amelia left the orphanage for good three months ago today!!!!  It feels like it has been much longer to me though.

I thought I'd take a minute to update you on how things are going.

The first excellent news is that Amelia's thyroid is suddenly fine!  We have her lab results from Poland and her first set here and they were all high but the most recent one was well within the normal range.  We might check again in 4 weeks just to make sure it's staying where it should but we may not even have to do that! I'm sure Amelia would like to avoid another blood draw!

She is on the highest dose of Prevacid (for reflux) for her size and she's doing better with that but still spitting up. We also had to start her on Miralax, the changes in diet and as many prunes as we could get her to drink, were helping but it just wasn't fast enough for what this poor baby needs :(.  Hopefully we can stop it in a couple of weeks once we've caught up and hopefully it also helps with the spitting up when she has more room in her tummy.

Another BIG piece of news is that we got very, very lucky and thanks to a mutual friend, we were connected to a really great speech therapist that is coming to our house to work with Amelia on feeding. This is AWESOME because letting her be in her own environment where she feels the most comfortable will be huge in helping her to progress.  We've had two sessions so far and I could not be happier.  We aren't even going near the table or food yet.  Our first goals are just putting a little gum brush inside her mouth to start desensitizing her gag reflux (she gags when things even touch just the tip of her tongue), she HATES it but we are only giving her her favorite toy while we are working with the gum brush and that helps us calm her down in between "tortures." We aren't even brushing her teeth still, we can't and her meds have to be mixed into her bottles which is definitely not ideal as her body can't absorb them fully that way but it's what we have to do right now.

She also helped me to understand many of Amelia's behaviors. For example, she doesn't play with the front side of toys, she always turns them upside down and then rocks with her mouth on the toy (but why??). It's because the front is too stimulating for her! She wants the plain, white to look at while she rocks and feels the vibration of the toy through her lips. This also helps to explain why she just sits and stares at the carpet!!

This week our homework is to get her to look at our faces twenty times per day. We do this by holding something that she really likes and/or wants in front of our face so that she has to look toward our face to get it. She is NOT a fan of this either.  We show her the toy and she gets excited and reaches for it but most of the time she stops in her tracks, looks at the ground and starts screaming and scratching herself as soon as it gets anywhere near our face, as you can imagine, it really does take all day to get in our twenty times BUT I can see the progress, eventually she will start to associate our faces with good things! For right now, just looking at our faces is very frightening and overstimulating to her, she absolutely hates it. I can count on one hand the number of times she has looked at my face on her own in the last three months. This is likely due to two things: negative associations with faces and the fact that faces are very stimulating; lots of movement, reflections, and sound.  She loves to bounce (but it makes her spit up) and she loves music so I've been trying to find ways to associate those things with my face as well. Again, I'm so thankful that the therapist is helping us find ways to work on making progress! Three months and she still hates my face.... it's hard on a Mama's heart.

She's still the happiest when she's alone in her ball pit or the play room. She will go a full day without banging her head now, certainly not every day, or even most days, but full days - that's huge! And she doesn't bite herself near as much but she scratches herself a lot now (mostly her legs but also the tops/bottoms of her feet, her stomach, and behind her ears - all to the point of bleeding) when she's upset. The therapist said that she will do that - replace behaviors with new ones but as long as we're working toward more socially-accepted behaviors, it's progress! She scratched herself really bad the other day just because Claire got too close to her :(. We stop her when she scratches but she's quick!

Many have asked about her glasses ..... she isn't wearing them. We have worked really hard and been very consistent with putting them back on and one day she kept them on for almost a full hour and I just knew we had had our breakthrough. She hasn't kept them on for more than 60 seconds sense. The thing to remember is that she had never seen anything for two years of her life besides blurry faces and plain walls. We changed her whole world just three months ago, and again when we flew home six weeks later, and the glasses are another BIG change. She can only see four inches clearly without them. They are changing the way we look, the way our home looks, etc. ... all of which she is JUST starting to get used to. She has no desire to wear them and she doesn't seem to even care that she can see better with them on, the world is still a scary place to her, she hardly looks up from the floor without her glasses because it's too stimulating. They're just something we're forcing on her face that she doesn't like and it's one more thing causing tension in our bonding process. So ... I put them on and she takes them off, repeat about 100+ times per day :).

Please please please please please don't say things that imply that Amelia will just magically get all better one day with our love. It just isn't true. She went two years (the most CRITICAL for development, growth, attachment and bonding) with no stimulation and only negative associations with people, food, and the world as she knew it. She WILL get better and the wounds will heal but it isn't magic, it isn't going to just happen, and there's going to be scars that never go away (of course barring a miracle from God). It's HARD, it's A LOT of work, and there's a whole lot of tears being shed over here, a whole, whole lot!  Don't misunderstand me, it is the most magical journey and I can't wait to do it again (Please Justin ;)!!!) but it is HARD! I have more love for this little girl than I ever could have imagined.

Justin and I decided this week that Amelia is our "little bear" ... she's so cute and cuddly and we love her so much and we spend all day just wanting to hold her in our arms but we can't. She growls ALL the time (she uses it as like a warning that she's mad and wants to be left alone or when she doesn't like something - which is basically the entire day) and she's feisty. It's a perfect analogy if you're wondering what it's like to live with Amelia ;).

And Claire ... she is doing great! Of course there is guilt that she isn't getting as much of my attention as she once did but she doesn't seem to be noticing at all ;). I have the best kids, truly! They are all big helpers and have the most generous hearts.

Both girls are getting their hearing tested next month (Amelia's will be sedated). We see the neurologist Friday to go over Amelia's MRI results (they found three things but I don't have details yet). We will continue to regularly see GI and pulmonology and then both girls are doing speech therapy. Overall though, appointments are slowing waaaay down now that we've made our initial rounds to everyone with Amelia!

As always, thank you for cheering us on!!!! We appreciate all of the love and support. Please continue to pray for Amelia's heart.

Thursday, December 31, 2015

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