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.



















2 comments:

  1. Stopping by to tell you all that your family has been on my heart recently. And, to tell you that I pray for Amelia and sweet Claire and the rest of you, too. Also, hoping for an update on how things are going with the Baby Girls health and how the adjusting of your family is going.
    Sending a Hug to all. - Jo in MN.

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