Julia's update

Julia is thriving and doing very well.  Julia has gained a substantial amount of weight over the last year.  She continues to be very strong and healthy.  She has had no major illnesses since last report.  The doctors think this is very good that she does not get sick very often.   For many months she visited a feeding clinic every week, to help teach her how to eat.  She eats food milled to baby food consistency.  She still does not drink liquids very well and receives those along with medications through G-tube that was placed in her stomach to the outside of her body.  She still occasionally has problems with wretching or “dry heaving” when overfed.  She had a “stomach emptying” test done and the results showed that her stomach does digest and empty food slower than normal.  She is on medication to help her digest faster.  This has helped a little.  But we still need to monitor her closely and take care not to feed her too much.  This balance needs to be cautiously balanced with making sure she gets enough.  This is why we are so thrilled that she gained 8 pounds.  For the longest time we could not get her weight above 30 pounds and she is now 38!

 

She has been diagnosed with severe scoliosis that could compromise her life if left untreated.  We have seen two different pediatric orthopedic surgeons.  The first dr. referred us to the second.  The decision was whether or not to perform surgery.  If the surgery would be done now, we would have to do a procedure called VEPTR rods in her spine.  This would then necessitate additional surgeries every 6-9 months to lengthen the rods as she grows.  There are additional risks and complications that could occur in this scenario.  The dr. would like to use a Charleston Chest brace (or external brace) to stop her spine from curving anymore and maybe even improve the curve.  We have gotten her measured and fitted for her brace.  The dr’s plan is to follow up with xrays every 4-6 months.  If the brace helps, the idea is to get her to an older age before surgery.  If he can get her to 10 or 11 years old, he could perform one surgery and fuse her spine.

Over the last year, Julia has continued to become more aware of her surroundings and interactions with people around her.  She still communicated through smiles, cries, and body movements, as she is primarily non-verbal.  At her therapies, they frequently tells her to "get it!"  She now routinely makes a sound that we believe is imitating this.  She also makes many more different sounds, particularly consonants.  She understand the word no and respond appropriately if told no to something.  But just like other children, she will attempt to go back to the behavior once she is not supervised.  So she shows some normal childhood disobedience.  Most of her therapists and we, her parents, still believe she is cognitively and emotionally operating on a 4-6 months level.  And we believe she is developmentally around 6-9 months old.  

She still engages in many self-stimulation behaviors.  Some of this can be attributed to her genetic abnormalities and some from lack of stimulation from orphanage environment.  She also has many sensory issues that can be attributed to both of the aforementioned circumstances.  Her occupational therapy works on ways to meet her sensory needs through “brushing” and joint compressions.  She also has what is called a SPIO (stabilizing pressure input orthosis) outfit that is tight spandex covering her body from neck to ankles and wrists.  It is meant to give her whole body constant sensory input.  She loves wearing the outfit.  Her behavior is very apparent as she seems to come “more alive” when wearing it.

The biggest new accomplishment for Julia is that she can now pick up little pieces of food with her hand by herself and put it in her mouth.  It must be something that can break down very easily in her mouth or she will choke on it.  She is still working on learning to chew.  But this has been a major accomplishment for her.  And she shows preferences for certain foods.  She loves broken up pieces of chocolate animal crackers and crumbled up nacho cheese doritos chips.

Julia has also recently acquired a gait trainer or “kid walker” through her physical therapy.  She is not extremely fond of being in it for long periods of time.  Her hypotonia or poor muscle tone makes it difficult for her to be in an upright standing position for too long.  She officially outgrew the baby crib.  With her weight gain, she was sinking the mattress.  She now has a twin safe bed and sleeps much more comfortably.  She even enjoys playing in it, as it has so much more room. 

Julia’s diet consists of eating almost everything the rest of the family eats.  We mill up her food in a blender, mixing it with pediasure, so that it is baby food consistency.  We make sure to get her 4 servings of baby food fruit and/or vegetables every day.  She still gets one 8 oz bottle of complete nutrition through her G-tube/feeding pump.  We also flush her with 12-16 oz. of water daily, also through her G-tube.  As mentioned above, she is slowly starting to be able to feed herself some finger food.  This is not any substantial amount, but these are considered treats and are pleasurable for her.

Julia wakes up around 7:30 every morning.  We get her ready for the day and give her breakfast.  She is typically bathed every other day.  Two mornings a week, she goes to her various therapies including physical, occupational, and speech.  Her mornings/days at home, she is to be wearing her Charleston chest brace as much as possible and we move her from activity chair, kid walker, and free play on the floor to give her change of position and environment.  We give her different toys at different times to minimize self-stimulation behaviors she engages in.  We also perform brushing and joint compressions about every 2 hours to help her meet her sensory needs.   She eats lunch around noon, has a snack around 3, dinner around 6 and bedtime usually between 7:30-8pm.

Julia still requires us to give her melatonin in order for her to fall asleep.  If we do not give her the melatonin, she will take hours to fall asleep.  Throughout the night, she has always had some difficulty staying asleep.  She wakes up crying at least one time during the night most nights.  Many times, we think this is because she does not swallow her spit while she is in deep sleep and wakes up due to coughing and choking when swallowing an excess amount of saliva.  Other times, we think it may be due to a bad dream.  We have gone in to check on her and she seems to be crying in her sleep.  We have discovered this because once we tend to her, she almost seems startled and instantly begins to cry louder.  Once we have woken her from her crying in her sleep, and after the initial startle, she seems to calm down and go back to sleep within minutes.  Since having to wear the Charleston chest brace, she has had even more disturbed sleep, as we believe it is not very comfortable to wear and she needs to adjust to having her spine and surrounding muscular structure adapt to wearing it.

We have been unable to get Julia on any regular napping schedule.  We notice she tends to get sleepy in her feeding chair during or immediately following her meals.  We have tried transferring her to her crib when we notice her starting to get tired.  But she always wakes up and ends up playing in her crib.  She takes the nap better if we leave her in the chair and simply recline it for her. 

She loves to have her toys make noise.  The louder the better the she likes it!  She does manipulate herself and her environment to make noise.  She continues to have the same favorite toy that she has

favored since we adopted her.  She has become more insistent in seeking this one toy out.  And aside from this one favorite toy, she also shows more preference of other toys than she used to.  If she doesn’t want a toy, she throws it vigorously away from her.  If she likes it, it stays with her.

She very much dislikes having her hair combed and having hair ties put in, but it is a daily necessity as her hair gets very knotted and matted from her rocking back and forth during the night.  But she has become a little more tolerant of it over the last couple of years.  And she looks so cute with her pig tails in!

Julia is loved by all of her siblings.  Everyone takes their turn giving her love and attention.  Julia always smiles and enjoys these interactions.  Three of Julia’s sisters tend to show interest/play with Julia the most.  They love to care for her, including changing her diapers, getting her dressed, doing her hair, taking turns feeding her, and playing with her.  They are very motherly to her. 

Julia is accepted by all of our extended family.  Julia has one set of grandparents who live only 45 minutes away.  They are very helpful in caring for Julia when we need to be away.  Her other grandparents, though they live a day’s drive away, enjoy interacting with her when visiting.  They are always very interested and amazed at how much she has grown and changed since she was adopted.  All her aunts and uncles who do not live near us, follow her life through updates on Facebook posts, our blog, and phone calls/texts.  They all delight in following what is going on in her life.

In November 2013, Julia began attending our local elementary school.  For now, we are only sending her for half days.  This way she would be able to maintain her therapy sessions through the children’s hospital in the mornings with her personal attendant and receive therapies in school in the afternoons.  This arrangement is working very well for her so far.  She rides the bus to school and visibly gets excited about it.  We can't be sure whether she enjoys the bus ride or she is showing her excitement about going to school, but either way, she seems happy!

Aaron's update

This week I am posting Aaron's update.  His legal name is Sergey Aaron, so this is why Sergey is used throughout.   As I mentioned in Avery's update, I am copying the relevant parts of their embassy reports and pasting them here to give our blog readers a detailed update on our adopted kiddos. 

Here's Aaron's:

Sergey is a very healthy 8 year old boy who has cerebral palsy.  He has rarely been sick and has not been hospitalized since his last report.   He continues to improve in his ability to walk and keep his balance.

Sergey is a friendly, outgoing, and talkative boy.  He makes friends with everyone he meets.  Adults just adore his loveable and endearing personality.  He tests boundaries every once in a while, but seems to learn from his consequences.  He is helpful and considerate of others.

 

Sergey had an IQ test administered and he scored 63, including all 4 subtests, which is under the 70 mark for intellectual disability (ID).  The psychologist felt that due to his history, 2 of the subtests should not be included in his score, as cultural impact could not necessarily be factored out.  Taking the other 2 subtests, his score was 76.  This is above the 70 mark for ID.  The psychologist also stated the results should be viewed with caution, given his background.  His diagnosis of cerebral palsy is likely a factor in the low score, along with lack of stimulating environment and nurturing care during his first 6 years.  Repeating the test in a few years will likely be advised.

Since Sergey’s last update, his greatest accomplishment is that he is walking completely unassisted!  He no longer uses his arm crutches, unless we are going to be walking extremely long distances.  His balance has greatly improved. 

 

He has also started going to our local public school.  We had been homeschooling him to allow him some extra time to acclimate to our family life and bond with us more.  But at this point, we have realized he needed more structured time in a place where he can learn to listen to others in authority and receive special needs services including physical therapy and speech therapy.

 

He can now give himself his own bath, without constant supervision and prompts to remind him of what body parts need to be washed.

Sergey is a good eater with a balanced diet.  He is slow to eat at times and needs reminding to eat over his plate, pay attention, and use his manners.  For the most part he is like any other child his age when it comes to eating habits.  He is not a picky eater and has even acquired a taste for spicy foods!

 

Sergey gets a bath every other morning before school.  He gets on the bus around 8:30 in the morning and comes home at 4 pm.  He buys lunch at school and has memorized his 5 digit code for his meal account.  He continues to go to physical therapy through Children’s Hospital of Richmond every Monday afternoon at 3 pm.  He has a good and long-standing therapist, named Stacey, who has been working with him for 2 years now.  He has also joined the Good News Club which is an after-school Bible based club.

 

Sergey does not nap and typically is in bed by 8:30 at night after bedtime story and prayers.

Sergey loves to play outside!  He enjoys spending a lot of time at the sandbox and swing set.  When the weather is nice, he likes riding his bike, which provides good exercise and strength for his legs. 

 

His favorite part of school is recess and getting to play with his friends.  He says he doesn’t like it when he is bored at school or when he gets tired/fatigued in gym class and struggles to keep up with the other kids.

 

His favorite toys are cars, especially his new remote controlled truck he recently got for Christmas.  His absolute favorite food is pizza, with hotdogs being a close second.  The pizza is interesting because he hated pizza when we first introduced it to him soon after his adoption.  He is also a big fan of applesauce.

Sergey has a normal, bonded relationship with all immediate family members.  Daddy is a big tease to all our kids.  Sergey usually enjoys this play, but can become frustrated.  Sergey is affectionate with me, his mom, the most.  He likes to hug and cuddle.  He plays well with his siblings, but gets into squabbles with them as most children do.  He continues to be kind and share when he plays, and has also learned to stand up for himself better.

Sergey is accepted and loved by all extended family.  He readily and happily visits grandparents for a week of vacation at the beach, along with his siblings.

Sergey continues to be a patient at Shriner’s Hospital in Philadelphia.  They repeated his motion lab study in June 2013 to compare his posture and walking ability to his first motion lab study done prior to his surgery.  The difference is incredible!  They want to follow up every 6 months to monitor his continued progress and possibly recommend foot braces to help lift his instep.

So that's it for Aaron.  Feel free to friend me on Facebook to catch the day to day pics and posts of the kids.  Just message me "blog reader" and I will gladly confirm!

 

 

Avery update

I realize its been a while since I have provided an update on our adopted kiddos.  Some of you have kindly requested an update, and I would like to say I genuinely appreciate and am humbled by the continued interest and support of our family.  I am completely terrible at making time to update here.  As I mentioned in one of my last posts, if you would like to follow the more day to day happenings and pics of the kids, please feel free to send me a "friend request" on Facebook with a personal message of "blog follower" and I will happily confirm!  For those of you who prefer to read my infrequent updates here or are not interested in FB, I recently had an idea.  Over the last few weeks, I have been working on the embassy updates for Julia, Aaron, and Avery and I got to thinking.....why not copy and paste them here?   I know the language and flow may be a bit "sterile" but at least they will be very thorough, detailed, and comprehensive.  I hope it is does the job ; )  Here is Miss Avery's update:

Avery is in very good health.  She has experienced no major illnesses or hospitalizations since her adoption.  She has grown remarkably.  In a little over a year, she has gained 7 pounds in weight and grown almost 5 inches taller!!  She is on no medication for behavior issues at this time.

Avery is a child who has mental, emotional, and developmental delays.  She is an extremely curious child and struggles with learning not to touch everything.  She tends to be destructive with physical things, various adults in authority, and herself.  She can be very angry and violent.  We believe most of this is due to frustration over difficulty with communication and being very strong-willed.   A developmental pediatrician witnessed and described her having oppositional defiant behaviors. Despite her struggles, she loves to learn and is becoming very smart.  We believe she behaves inappropriately as a way to engage in any kind of personal interaction, whether positive or negative.  She is extremely attention motivated. 

Avery had an IQ test administered and she scored 79.  This is above the 70 mark for intellectual disability.  The plan is to repeat the test in three years, and her score is expected to be higher. 

Avery has come very far over this year, particularly in three areas.  The first and most obvious is her increased ability to communicate.  A year ago, Avery was completely non-verbal.  She can now verbally communicate almost every need to us and her teachers.  She still has a lot to learn, but it is amazing how her vocabulary is expanding every day.  We are sure this has much to do with the second area of improvement, which is her behavior.  A year ago, Avery was constantly angry, frustrated, combative, aggressive, destructive, and violent.  For a period of about three weeks, out of complete desperation, her developmental pediatrician prescribed her Clonidine to help her calm down.  This helped with the calming down, but we did not like some of the effects of her being on this medicine.  It made her so tired, she wasn’t herself and behaviorally she acted like a cranky two year old.  We discontinued the medicine and decided to be patient and hope that by ignoring negative behaviors and only giving her attention when she was behaving appropriately, she would eventually come around.  Though she still has her moments, she is a completely different child than she was a year ago.  Her “episodes” are farther and fewer between.  She has improved enough that she can be worked with and taught.  Though she has not been officially diagnosed with autism, she attends school in an autistic environment, where she is one-on-one with staff who are trained to handle aggressive situations.  She continues to learn how to behave and exhibit better self-control through consistent consequences for negative behavior and positive rewards for good behavior. 

The third area of improvement is academics.   Avery’s achievement scores in school are great, considering she had had no formal education prior to her adoption.  Though she is 8 years old, they have her placed in 1^st grade.  Among her peers, she is scoring in the average range in some areas.  This is incredible!  Interestingly, she shows more aptitude in the language areas over math.

Avery has also been doing gymnastics since September 2013.  She started out in a special needs class.  By November, the teachers and I felt comfortable transitioning her to a regular class.  She does very well in class, has a natural ability and is extremely flexible.  She follows instructions with minimal frustrations.  We believe this is because she enjoys this activity so much.  She frequently inquires if she is going to gymnastics that day, as she does not have a clear understanding of something that happens once a week.

Avery eats a balanced diet and is not a picky eater.  Occasionally she stuffs her mouth full of food and then has a difficult time chewing, especially with treats like chocolate chips or M&M’s.  But for the most part, reminding her to put one in at a time helps.  She loves to drink water.  There were a few bad habits we needed to work on in regard to table manners.  She constantly wiped her mouth and hands in her shirt.  In the beginning, we put a bib on her and taught her to wipe in the bib.  Then we transitioned her to napkins.  Now she will even ask for a napkin if we’ve forgotten to give her one!  She has learned to wash her hands before and after eating.  

Avery had a very difficult time with sleeping when we first brought her home.  She would not go to sleep very easily at bedtime, staying up for hours.  Then when she would fall asleep, she would wake up during the night and get herself into trouble, typically doing something destructive.  Finally, she would be so exhausted by the early morning hours that she would be difficult to wake up come sun up.  We struggled for many months with this.  One of the biggest helps was getting a video monitor so she knew we could watch what she was doing.  Getting her to stay in bed was also a major struggle.  We also began giving her Melatonin.  This was the answer.  If we give her  melatonin just before bedtime, she is asleep within a half hour.  And for the most part, stays asleep.  Occasionally, she will wake up in the middle of the night, turn the light on, and start playing with her toys.  But for the most part, she is on a regular routine.  She takes no naps.

In the beginning, Avery did not know how to appropriately play with any toy.  Her only goal if she got her hands on anything, was to instantly break it.   She has improved greatly in this area, as now her three favorite activities are legos, building with a wooden train set, and hand held toys that she can play learning games on.  Legos are by far her favorite and she is quite precise in her architecture.  However, if she plays too long, frustration and aggressive behavior ensues.  Sometimes, we limit her time, although stopping her from playing her favorite toy, causes almost just as much frustration for her.  She has a favorite baby doll that she sleeps with.  She even gave her the name “baby Lisa.”  She enjoys having the doll wear a matching nightgown to hers.  She gets a kick out of “role playing” with the doll.  For example, when putting Avery to bed, we will tell baby Lisa to lie down and go to sleep.  Baby Lisa sits back up (just like Avery gets reprimanded for) and we have to tell her to “lie down.”  She finds this very funny.  In the summertime, Avery LOVED the pool.  She is quite the fish and would stay in the water for hours.  Every day she asked to go in the pool and was very sad when it was time to close the pool up for the winter.

Avery’s favorite foods are pizza, turkey, macaroni and cheese, and Kentucky Fried Chicken.  Her favorite snack is pistachio nuts.  She does not like spicy food or cooked bell peppers.  She will gag tremendously over cooked bell peppers.  Of course, she loves chocolate, particularly M&M’s.

Avery’s interactions within our immediate family have improved as most of her behavior issues have improved.  Thankfully, all of her violent, aggressive behaviors were aimed at adults who were in authority over her.  So though she attacked her dad and me, she never hurt the other children in the home.  Early on, she rarely interacted with her new siblings.  When they would attempt to play with her, she ignored them, giving them no response whatsoever.  If they persisted, she would do her best to go somewhere else.  She was clearly avoiding any interactions with kids.  In her groupa in the orphanage, Avery was the highest functioning child.  I believe she learned to ignore other children she may have found bothersome.   She learned to avoid these situations as much as possible.  Since she was always “on the move” anytime any sibling wanted to give her some affection, such as a hug or a kiss on the cheek, she would push them away and try to get away.    We encouraged the other children, to respect her boundaries, so as not to push her to behave aggressively toward them.

Thankfully, she has come around.  She does not attack us physically anymore.  She still hits staff at school once in a while.  She still prefers to play on her own.  I have noticed her asking her siblings to help her with her legos building.  The kids see this as an open invitation to play with her.  She tolerates this for a while, but eventually she gets frustrated and goes away from the activity to sit somewhere nearby and cry.  But this is an improvement and a step towards interactive play.  She is much better about accepting love and affection from us, including the kids.  She loves to play wrestle.  She will even snuggle in bed with us on our lazy mornings. 

Avery’s relationships with our extended families have been a slower process.  This is because of the behavioral issues already mentioned, along with less day to day contact.  Early on, we limited her contact to many additional people outside of our immediate family and in public to encourage bonding within our immediate family and for safety reasons.  As this is not so much a concern now, extended family has had some time to start developing a relationship with her.

She is particularly fond of her Uncle Bret, who visits most frequently.  He also accompanied me to Ukraine during the second trip to bring her home.  We are not sure if she favors him because she remembers him as someone she met early on, or because of the frequency of his visits.  He is the only relative she asks about when not present.   

One of the first things we had to teach Avery was to use toilet paper when using the bathroom.  We noticed in the orphanage she would urinate and simply jump off the toilet and go.  Seemingly, this was not regularly monitored nor corrected by the nannies.  During the first few weeks at home with us she was regularly pooping in her pants.  This stopped on its own very soon.  We assume this short lived problem was due to adjusting to her new home with many new distractions that caused her to have a difficult time getting to the bathroom when she needed to go.  Over most of the first year, she would wet and/or poop herself during the night.  We kept her in diapers and worked with positive reinforcement to help her learn to keep herself clean and dry.  As she improved and kept herself dry for a solid week, we discontinued the diapers.  She has not soiled herself since.

So there it is.  Stay tuned.....Julia's or Aaron's will soon follow.......