Do you hear what Henry hears.....?

Probably not.

Because Henry has hearing loss in both ears.

He cannot hear much under 40 decibels, which is about the volume of a normal conversation.

But if you go like this....

THEN you will hear what Henry hears....

The good news is that the ENT doc thinks that it is 95% likely that this hearing loss is caused by massive fluid buildup in his middle ears, preventing the eardrum from vibrating properly. Children with cleft palates can have this probably because their ears do not drain properly.

So while Henry is getting his cleft palate repaired in February, the ENT will also be there to suck out the fluid and place little teeny tiny tubes in.... and then we will re-check his hearing a few weeks later.

As she said...

"This will be the easiest medical procedure of the many he will need."

I'll take easy for a change!!!

Happy New Year to All from Henry and the whole Dobrovits family!!!

7 Quick Takes Friday.....Officially Overwhelmed

Well, it is official...

Larsen's Syndrome sucks.

Let me tell you about our week of medical stuff with our dear little Henry...

1) On Monday, we went to see an awesome chiropractor/naturopath who has helped myself, my son with major allergies, and many members of my family of birth deal with health problems that conventional medicine did not seem able to solve. We have a four point plan that will probably take several weeks to implement, but it should help to heal Henry's gut, help him to get more calcium in his bones, and finally to digest protein a bit better.

2) On Tuesday we headed to the Nutrition Assessment Clinic at Children's Hospital...because I am not going to completely abandon conventional medicine...which is indeed very good at testing and diagnoses...the main doctor recommended a full blood panel to check for most vitamin/mineral deficiencies (we do already know he is deficient in iron and calcium) and for metabolic disorders and we were also referred to a specialist in "joint displacement" to help us figure out what Henry's growth potential might be...

3) After the doc we saw a speech pathologist who confirmed that Henry is indeed seriously orally averse and recommends therapy both BEFORE and AFTER his cleft palate surgery in February, and gave us a referral to the gal most experienced with cleft palate children...we also need to go for a swallow test (to make sure he does not have a fistula or silent reflux)....

4) THEN the Nutritionist came into the room...even with a concentrated partially digested protein formula it appears that Henry might not be taking in enough calories since he is so active and the back brace makes him work harder to breathe (thus burning more calories)...so we are SUPER SUPER concentrating his formula and will see how that works...oh, and prayers please that our insurance decides to cover the cost of this formula since the monthly tab for just Henry is about half of my monthly grocery bill for the other 8 people in the family!!!!

5) On Thursday we went for a hearing screening since children with cleft palates or Larsen's Syndrome can have hearing problems....yep, abnormal results in BOTH EARS...could be as simple as he needs tubes put in his ears during the cleft repair surgery or it could be he has a congenital hearing loss...we have a referral to a ENT doc for next week...

6) Our fabulous OT made contact with another therapist who had treated a child with Larsen's who heard about a spinal surgery technique called the VEPTR procedure which is very successful treating severe scoliosis AND lordosis AND kyphosis of the spine (yep, my little sweetie has all 3 kinds of twisting you can have)....and I found the doctor who invented the procedure AND his office contact information in Pennsylvania!! We will be getting a call to evaluate Henry's potential for this specialized kind of surgery! The
internet is just amazing....

7) So since you are probably as overwhelmed and completely tired of all this medical stuff as I am, I will leave you with the reason I am so blessed to be dealing with all of the above...

For God sets the lonely in families....He does not forget the orphan....Henry is home in the arms of a loving family, where he....where EVERY CHILD....belongs.

Merry Christmas!

The scale is not our friend....

December 9 was the 3 month anniversary of Henry touching down on American soil....

to a land of abundance and plenty....

he weighed 13 pounds 6 ounces.... not even on the charts (less than the 1st Percentile) for his age in weight and height....

we thought that would soon change....

The staff at the orphanage had said he could drink from a regular bottle......

PIFFLE!!!

Our first feeding on September 2 ("Gotcha" Day) took almost an hour of coughing and sputtering to feed him 3 ounces with a regular nipple, which is not surprising since he has a cleft palate and cannot create any suction...

I had brought a special bottle to Ukraine known as a Haberman feeder, which I knew from my years as a La Leche League Leader is used to feed cleft palate babies. It has a special valve to create its OWN suction and releases milk far back into Henry's mouth with only a tiny pit of pressure....

Here it is....with some with my breastmilk - I was still nursing my 2 year old daughter when I left for Ukraine so I pumped several times a day throughout the entire 25 day trip, even in the bathroom on our British Airways flight over the Atlantic....

Henry LOVED being able to eat without choking and he sucked down both breastmilk and formula (I was not producing enough for the 25-30 ounces he needs each day) with equal gusto.

Yet he LOST weight his first weeks home.

I was crushed.

But our pediatrician described how Henry's intestines, in response to chronic under-feeding, adapted by decreasing the available absorptive surface. He prescribed a special formula with proteins in extremely small pieces in order to best utilize the decreased absorptive villi in the intestines and improve Henry's nutritional status as soon as possible...

but here we sit, after 7 full weeks of the formula being prepared to concentrate it with additional calories and feeding it to him in amounts which SHOULD CLINICALLY PROVIDE ENOUGH nutrition to have Henry gain weight.

Yet he does not.

Other children have come home from Eastern Europe in near-starvation states.

One little one almost a year ago.... www.carringtonscourage.blogspot.com

One little one about a month ago... www.theblessingofverity.com

They began to gain almost immediately..... and kept gaining.

Henry gains. Then loses. Then stays the same. Then gains a bit more. Then loses a bit more.

He weighs 13 pounds 4 ounces - 2 ounces less than when he came home.

I am tired of doctors appointments.

I was looking forward to a break over the holidays.

But now it is time to gear up and find some answers.

Life in these United States

Henry is becoming more and more a typical American child with each passing day....

and yesterday a milestone was reached...

Hmmmm, what is this??? It looks interesting.....

I think I will put it in my mouth.....

YUM! I liked that!!!

McDonald's fries have another fan...

and Henry is feeling safe enough to let me give him food and to put it in his own mouth.....

just like a typical American 14 month old would...

so today I give thanks for McDonalds fries and the healing power of love.

7 Quick Takes Friday - To Make Up for My Neglect...

WOW! Has it been 2 weeks since my last post??

Thanksgiving and a case of strep throat for my Ella and a bad cold for Henry will do that I guess...

so to make it up to everyone I am giving you lots of pictures today...

1) Henry!

This child is growing physically and mentally by leaps and bounds!!!

We would like for him to put on some more weight (he weights exactly the same as our first official weigh-in here in the States in early September) but his bonding to us is AMAZING and he is so SMART and he is ASTOUNDING his therapists with his progress on head control and chin tucking and clapping blocks together and helping to turn the pages when reading books and PLAYING with TOYS.....

I live in an almost constant state of amazement and gratitude that he is here with us and getting the medical care and brain stimulation he needs to THRIVE!!!

2) Anastasia!

This little sweetheart is on my heart lately. She is in Henry's country and has arthrogryposis (like Henry was SUPPOSED to have had) and she is just a bit younger than my sweet Tessa. I KNOW she is being treated like Henry....as most children who cannot walk are in orphanages there....

left in a crib most of the day...no therapy...little mental stimulation....

My heart aches for her.....and SOARS at the possibilities of what she could achieve with a family here in the U.S.!!

Go to www.reecesrainbow.org/898/anastasia408 - she has almost $8000 in her grant fund!!!

3) Madrigals!

Nothing puts me in a Christmas mood like medieval music sung acapella by guys in tights ;-)

like my son Brent....

who has graduated from the AWESOME Madrigals program at LincolnWay East and will be singing next week with the Madrigals at Joliet Junior College....

can't wait to hear the magic....

and see which costume and tights he gets to wear this year ;-)

4) Abundance!

I love Christmas.

I love giving presents.

I love decorating our home.

I love celebrating the birth of Jesus.

I hate that there are poor, sick, dying, orphaned children out there.

This tension is good....it reminds me to be a little less ostentatious and a little more generous.

5) Coffee!

The last week has been very wintry in the south suburbs of Chicago....

Thank you Lord for a hot mug of morning coffee!

6) More Henry!

Hey, him napping like this was what made Quick Takes possible today!!

7) and finally, Ella!!

My little sweetheart fashionista turned 7 yesterday, December 1!!!

Happy Birthday to a special daughter and sister!!!

Have a wonderful weekend everyone!!!