Tuesday, February 7, 2012

Maria's heart

I had a bit of a rough night last night.  I stayed up a little too late trying to get paperwork together for Maria’s doctor’s appointment today.  Then I woke up in the wee hours of the morning startled from a bad dream.  I had a dream I was in Russia, picking up Maria.  My hubby wasn’t there with me, but my friend Kelly Dirkes* was.  We went to pick up Maria and were surprised to find her biological father there playing with her.  I started talking to him and he was acting very naturally as if he “knew” her.  I asked him how many times he had visited her and he said once before.  I really wanted to get more info from him about his background and especially wanted a photo of him.  We decided to wait until her biological mother arrived to get a photo of both of them or all of us or whatever.  While we were waiting for her, however, the “dad” said he had to go out for a minute and that he’d be back.  Shortly after, the “mom” arrived and she was very stoic and uninterested.  The “dad” never returned and I was so upset that I didn’t just snap a photo of him while he was there.  Then I woke up.

So frustrating!  Nothing in my dream was actually true.  Her parents refused her at the hospital and never visited her.  I think I daydream sometimes about what her parents might look like and so wish I had a photo of them.   

 Our dancing queen: signing "dance"

At our local DS Association Valentine's Dinner/Dance: Maria with her friend Grace

So despite my sleep-deprived state, I took Maria to the pediatric cardiologist today.  She was a little nervous like she normally is at doctor’s offices, saying in Russian that she’s scared.  The doctor did an ECG and an ultrasound.  Her heart was repaired when she was 8 months old.  I got tons of medical paperwork on gotcha day, but none of it was translated.  I was able to get some of it translated, but I never did understand exactly what condition she had nor what type of surgery she had. Finally the doctor was able to explain it to me! She had Atrioventricular Canal Defect (ACD) which he said is the most common congenital heart condition for kids with Down syndrome.  It is basically a large hole in the center of the heart.  From what he saw, he said it was a very successful surgery and it should continue to hold up over time.  Yay! We will have annual check-ups to make sure that this continues as she grows.

Maria 2 1/2 months after heart surgery

After the doctor we stopped to pick up some groceries.  Today was a rainy day, so Maria had on her Disney Princess light up boots and her hooded rain jacket.  As I started to get her out of her carseat, she was saying something to me in Russian that I didn’t recognize and was resisting getting out of the car.  I think she was wary of going out in the rain! I’m sure in the orphanage they did not go out in the rain and if they did, I’m sure they wore a snowsuit.  She was probably wondering why I didn’t even have a scarf for the poor girl.  So I promised her a cookie at the store. I figure she only deserved it after braving the doctor and the rain.  As soon as we entered, she started signing and asking me for “cheese”.  Such a smart little stinker! They have started putting out cheese samples at Trader Joe’s and she remembered from last week!  Then we went and tried the sample of the day, “falafels”.  She was still not satisfied and kept asking for a “cookie”.  So I started looking and found the perfect cookies: Lemon Heart Cookies.  After purchasing them, dodging cars in the parking lot and avoiding puddles, I got her securely fastened in the car and started to leave.  “Mama, cookie.” Oh yeah, I forgot!  This “little cookie” has the BEST memory and not just for food! She retains things I only teach her once. She is really surprising us every day.  (BTW- these cookies are SO good! They are like shortbread cookies and are light, crunchy, nutty and lemony-yum!)

  Two weeks ago, the school psychologist did an evaluation on Maria and modeled a vertical and horizontal line and asked her to copy what she had done.  Before then, all of her drawings had been circles.  Today, she recalled the horizontal/vertical lines and spontaneously began recreating them!

Our budding artist

*I’m pretty sure Kelly was in my dream, because I am thinking about her! She and her husband Kyle left today for their court trip.  Please say a prayer for them- I know how stressed and anxious I was before court! They are only about $5000 short of being fully funded and would be so blessed if you are interested in helping them bring Charlotte home

Best buddies, Charlotte and Maria entertaining the Dirkes in November

Friday, February 3, 2012

3 month home update! Part 1

Maria just continues to grow and thrive!  She is learning new words and signs every day- she surprises us by her amazing memory retention. This girl imitates everything, has a great attention span and is eager to keep learning.

The process to get doctor appointments and therapy has been quite drawn out since we have HMO and have to get referrals to everything.  Besides the fact that we are newly navigating the world of special needs services.  It also makes it more complicated because she didn’t receive early intervention (0-3 years) and wasn’t already in the system. 

We are working on getting a Behavior Management program started for Potty Training! Should be starting next week!  We thought Maria was somewhat potty trained at the orphanage, but since gotcha day, she has indicated very strong aversions to potty use. She has already shown lots of improvement, including  using the “big” potty now, staying dry most of the day and even has asked to go “poo-poo” about 3-4 times this week.  Seriously if you had told me last week that she would be ASKING to go poo poo this week, I would not have believed it- woohoo!

Yesterday we saw the pediatric ophthalmologist and we found out Maria’s vision is even more limited than our optometrist was able to see.  However, since we have not been seeing any strabismus, he gave us a new prescription for half of the strength her lenses are now.  This is because her current lenses are doing all of the focusing for her and it will be better long-term for her eyes to have their own focusing work. 

We also saw an ENT who followed up with her low hearing evaluation.  Her hearing did fail the normal test in both ears but it could be due to her small ear canals. In the other tests performed, her hearing was adequate and she responded well to auditory cues, so we will follow up in 3 months.  I asked the ENT about performing a sleep study because Maria is a restless sleeper and we just don’t know if there could be any sleep apnea, so I was pleased that she agreed to send out a referral.  Our local sleep clinic doesn’t work with 4 year olds, so now we are waiting for a referral to UCLA. I am so excited about this because we will be working with a neurologist who specializes in Down syndrome. If our insurance approves J

We also were doing some Physical Therapy for about 4 weeks.  I’m pretty sure Maria never was made to do anything she didn’t want to do at the orphanage.  If the exercises became too much “work”, she would try to walk away or just sit down.  She even would lay her head on the therapist’s lap and hug her.  Unfortunately the therapist fell for this!   There were two things wrong with this: 1. She was obviously trying to get out of the exercise by distracting the therapist with her cuteness and 2.  I had already explained to the therapist that because we just adopted her, we are working on bonding and that we are teaching her to only hug mommy and daddy and to shake hands with “strangers and friends”.  I did have to remind the therapist of the “rules” and the next time and after that, things went great! Maria has been getting stronger. 

Maria grew 1 inch and lost 3 pounds!  I was never allowed to know exactly what Maria ate on a regular basis, but from all of the photos I have of her, it is apparent that she was on a very high bread diet!  We have been feeding her all sorts of healthy vegetables, fruits, legumes, meats, dairy and grains.  She pretty much loves everything.  She loves salad! Last night I gave her spinach salad with sprouts, mushrooms, tomatoes, cucumbers and carrots along with baked sweet potatoes and BBQ chicken. So far her least favorite foods are oatmeal and blueberries (but she will eat them!)  We also give her a multivitamin, Omega-3, a probiotic and Vitamin D. 

On Tuesday, I met with the local school representatives for an IEP (Individualized Education Plan) meeting.  I was a little nervous, but it went very, very well. We would like to get in-home speech/language therapy and Occupational Therapy.  They have a great inclusion preschool, but I know she needs more time at home to learn what a family means, so we declined the school offer.  Besides, I home school my other kids and I truly believe Maria will do great learning alongside her siblings.  The speech and language is a given, I think she will be receiving it twice a week. The OT, however, is serviced through the county and she will need to be evaluated first.  This is the area where I feel Maria needs the most support and where I feel the least capable.  She has already missed out on 4 years of OT.

I think Maria is starting to feel more settled lately. I told some friends that it seems like there is a 12 week milestone- so many improvements since the first weeks home.  Thank you to so many of you who continue to lift us up in prayer.  We still need just as much prayer now  (maybe more) as we did before bringing her home.  What an encouragement it has been when someone has said, "I've been praying for you." Especially when I didn't know they were!

Stay tuned for Part 2: Attachment and more!