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, all.day/night.long!). 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!
Height: 29.75" (0.06%)
Weight: 19.00lb (0.66%)
Head Circ: 17.3" (1.0%)
Clothing Size: 6-9mo
Shoe Size: 2
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!!!!!