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














































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