The "things-are-not-so-great" Henry Update

I was so looking forward to today's post...

I knew it was going to be a busy week with appointments at the orthopedic doctor and a follow-up appointment with the pediatrician (who specializes in children who come from international adoptions)...

we were going to get information on the severity of Henry's arthrogryposis and hear this local doctor's treatment plan and then I would contact Shriner's in Philadelphia to make arrangements for a consultation and second opinion there...

we were going to see how much weight Henry gained now that he is home and eating well and being loved-on all day...

The orthopedic results first.

Henry does not have arthrogryposis.

Yep.

That's right.

The diagnosis from his country was wrong.

Sure his feet LOOK like they have arthrogryposis. And it was pretty apparent that his right knee was dislocated, like sometimes happens with arthrogryposis.

But his legs are "wobbly" not stiff. Same with his arms.

The orthopedic doctor did x-rays.

Both of Henry's knees are dislocated. Both of Henry's hips are dislocated. Both of Henry's elbows are dislocated.

Henry has a 110 degree curvature of his spine. Anything over 90 degrees requires surgery or else at about age 5 the twisting of his spine would impinge his breathing so badly that he would eventually suffocate to death.

So....

thank GOD for the mistaken arthrogryposis diagnosis!

Without it Henry would not have been eligible for international adoption until he was 5...

and he probably would have died.

But now our treatment plans are kaput.

The orthopedic doctor does not know WHAT Henry HAS.

It is probably some kind of genetic and/or chromosomal syndrome. So we were referred to a geneticist to get a diagnosis before any orthopedic treatment can proceed. Of course the geneticist he referred us to does not have any appointments available until the end of November, so we may need to search a bit for someone more "available".

Next up, the pediatrician.

He weighed 13 pounds 6 ounces exactly two weeks ago.

We used the same scale yesterday.

He weighed 12 pounds 5 ounces.

I almost passed out.

He has been drinking between 26 and 30 ounces (split between breastmilk and formula) every single day....

but the pediatrician said his little body is like a concentration camp survivor...

he has not had good nutrition for so long his body cannot process it...

it is going right through him.

We are trying a week on a special formula for children with severe food issues...the proteins are already broken down and he should be able to process it more easily...and lots of probiotics to help heal his gut to allow for absorption of protein and nutrients...

the doctor is worried about him getting sick in his frail state...

so am I...

especially with 6 other children at home, 5 of whom are in 5 different schools...

and the weather starting to change to fall here in the south suburbs of Chicago...

So today I am a bit overwhelmed.

In need of prayer.

Please send one up for my little Henry if you can....

and for me...

a worried mama to a baby with an unknown syndrome losing weight in our land of plenty.

Quick Takes Friday - Photo Edition

Time is a 'tickin....Logan and Tessa will only be happy playing together for a few more minutes and Henry's morning nap should end very soon as well, so here is my contribution for this Friday (thanks to Jen for hosting!, the Feast of St. Pio (Padre Pio), one of my heavenly favs and a fellow Italian...

oh, since he was a Capuchin monk and cappuccino was named after the light brown of their robes, go and have a warm milky coffee in tribute!!

1)  I can now easily do things like a "Photo Edition" thanks to my wonderful husband who heeded my pleas for a smartphone and bought me an iPhone last week...with 7 children "baby books" and carrying a separate camera around will not happen, so my last several children's lives will be documented on my blog and Facebook...they can bring this up in therapy later...

2)  Now I can easily memorialize cuteness like this, where Ella, Logan and Tessa were playing "sleep" on the basement stairs...

3)  Sometimes, due to his small size and physical limitations, I forget that Henry is almost 1 (tomorrow!!!) and has a 1 year old boy brain...so he likes construction stuff, especially duplos...here he begins by grabbing the tower off his sister's creation...

4) Then working on the base of the tower...

5) Then he rolled over while holding the base (YAY! Strong boy!)...

6) Then he looked a bit like he surprised himself!!!

7) Finally, if you saw the Season Premier of "The Office" last night you will know what the Dobrovits family was doing in our kitchen last night...

Have a great weekend everyone!!!

No pain. No gain.

Today I went a bit out of my comfort zone and took my four little ones (Ella -6, Logan-4, Tessa-2, and Henry-1 in 6 days!) to an apple orchard to join Logan's preschool class for a field trip.

It went surprisingly well.

No one got lost, hurt another child, or had a major meltdown...

well, Henry had a little meltdown, but that can once again be attributed to his poop/gas issues so I will not blame him personally ;-)

We picked apples and drank freshly pressed cider and learned about bees and ran through a hay-bale maze and fed goats and enjoyed all the pumpkins.

And then, because I am a sucker for homemade goodies (whether I or someone else makes them is irrelevant), we went inside to the shop to buy caramel apples and cider and homemade fudge.

The fudge lady admired the baby and I gave my standard reply, "Thanks! He just came home from Ukraine!" and then she saw my other 3 in the cart and gave the standard reply of  "My! You must have your hands full with 4!" and I gave standard reply Number 2 which is, "Well, I have 7 total, some are at school."

She stopped cold.

And her next reply was something I never have experienced before and never wish to again.

She said, "I had 11. And I wish I hadn't. There is too much pain. I told all my children not to have so many. You should not have any more."

I was speechless. There is no standard reply to that.

She looked broken. She looked at me with pity.

I wanted to say, "But to miss the pain, I would have to miss the JOY of my more than 2.3 children!! I know that much pain is coming with my sweet baby with special needs, but SO MUCH GOOD is coming too!! God strengthens us through the tough times and makes the good times even sweeter!!"

But my children were getting antsy and so I took my fudge and wished her a good day and then drove home.

And thought about the exchange all the hour-long ride back.

Sure, having children can bring physical and emotional and spiritual pain to their parents.

Lots of things that are worthwhile can cause pain.

Going to law school.

Running a marathon.

The risk of falling in love.

Picking up the poorest of the poor off the streets of Calcutta ("Mother Teresa, maybe you should do something a bit less taxing with your life....it will be too painful to you and your fellow nuns to minister to the sick and orphaned and dying...")

So should we avoid all of these because of the chance of pain???

I think not.

Please join me today praying for the fudge lady and all those who refuse to risk the pain to do the good they know deep in their hearts that they should do.

Humility.

Sure, it is cool to hear "Boy you are amazing!" and "Wow! I could never do what you are doing!"



but here is the reality...



Paul had to go to a back-to-school night for Sabrina, Luke was babysitting (for another family that had back-to-school night) and Sabrina went along to play with their daughter, and Brent was out at choir practice for St. Anthony. I was home with the youngest four.



About 6:30pm, a gal who works with Paul stopped by to graciously give us their outgrown baby monitor for us to use (ours from Tessa was broken when I took it out to use this week for Henry). She has a lovely 3 year old daughter...



and I have probably scared her out of having any more children.



Henry was screaming and screaming because he had to poop (he does every single time, plan to ask the doctor about it later today)....



Logan (4yo) was AT Tessa (2yo) and then Ella (6yo) and Logan were playing tug of war with a hula hoop and screaming at each other...





Logan had his shirt off and Tessa was finally tired of him bothering her so she BIT HIM IN THE BACK....he starts screaming for me to send Tessa to "time out".....



Ella was souped up on i-don't-know-what (sugar? caffeine? mommy being home??) and starting doing laps around our hallway with a full size hula hoop banging the walls and everything else she passed...





I have never been so embarassed in my life! I must have looked completely incapable of caring for the six children I already HAVE much less one more with special needs...





God LOVES a humble heart (and makes sure I am working on obtaining one)!!



Off for Henry's first post-adoption doctor appointment this afternoon...



Please pray for his many medical needs and have a blessed weekend with your own crazy bunch!!

Home.

Girls with their new little brother.

So blessed.

24 Hours

Intellectually, I know I met Henry less than 2 weeks ago...

Intellectually, I know we are not biologically related...

Intellectually, I know that I cannot erase an entire year of being in an orphanage in one day...

But after 24 hours together, I can truly say...

I would die for him.

Just like all of my children.

One goes. One stays.

This afternoon I was again allowed to take Henry outside in a small courtyard in the back of the orphanage. As we walked in the stroller (which needs to keep moving or else Henry starts screeching) I prayed the rosary, the “Hail Mary’s” repeated as I walked back and forth at least a hundred times over the 40 foot long sidewalk I was allowed to use (and told not to go any farther).

One hour into our two hour visiting session, an older couple came and sat on a bench at the other end of the sidewalk. The woman in a babushka. The man well-tanned and in well-worn work clothes. The orphanage worker seemed to know them well as she greeted them from inside…and then brought out a little one to them.

At first I could not see if the child was a boy or girl. But I could see the child probably had Cerebral Palsy. The little legs were so skinny. The older man had to support her up on his lap to stand.

Henry was getting cranky so I had to get the stroller moving past them. I greeted them and they smiled and greeted back. I saw they had a little blonde doll out for the child, so I now assumed she was a little girl. When I got closer I could also see the little one’s eyes were terribly crossed. As Henry and I walked back and forth they played with the child…sang to her…the older man hugged and bounced her and she laughed…the older woman took off her socks and rubbed her feet and legs….they played with the doll with her.

I died inside.

I knew I was bringing my Henry home…to medical treatment…to a big loving family.

This little girl was probably having her weekly visit with her grandparents. She will not have her eyes treated. She will not receive physical therapy. She will be institutionalized about age 5 and will never go to school. If she cannot walk, she will probably be left in a “lying down room” and rarely ever taken outside. For the rest of her life.

The orphanage worker came at 3pm to bring Henry back into the orphanage…for the last night. Tomorrow is “Gotcha Day” when I get to take him with me and he will never have to go back to his old life with no future.

But not this little girl.

As I left to go to my cab waiting to take me back to my lovely rented home, I went up to the woman and gave her the Usborne “touch and feel” book with colorful animals I had brought to Ukraine and read to Henry on visits these past two weeks. I motioned it was for the little girl, for grandma to read and her to touch as I said and pantomimed, “My baby. America. Tomorrow.”

And despite the fact that I know no Ukrainian and the older woman did not know any English…

The woman understood.

That I had adopted my Henry (she saw his bent and useless legs as we walked) and that he had a future.

And her granddaughter did not. And the tears ran from her eyes.

And mine.

I beg you - go to www.reecesrainbow.org and see if God is calling you to either save one of these sweet children or to donate money so that another family can.