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!