Our Little Princess Part II

Today we got an amazing report on Leza's health the magnitude of which cannot be understood unless one knows the whole story.

 

When we committed to Leza we only knew that she 

had heart surgery and Down syndrome.  We didn't know how cute she was because the pictures we had did not show her face.  She is beautiful. We found out some of her diagnosis when we got to our first appointment at which time we were told that she had gastro surgery at some point, no one was quite sure about that, and that she's had open heart surgery. It wasn't until we met with her doctor at the orphanage that we got the rest of the story.

 

Prior to ones meeting with a child, the parents are told as much about the child's medical and social history as is known.  We learned our first day that she was born without her colon being completely developed and that right after she was born she had surgery to correct it.  Then when she was 2 she had another surgery, and a colostomy due to some complications.  The colostomy was repaired and she has been fine every since.  Her heart had two holes in it.  The upper one repaired itself over time, but the lower one required surgery.  The surgery was successful, but Leza was also diagnosed with congestive heart failure. 

 

Heart failure does not mean the heart has stopped working. Rather, it means that the heart's pumping power is weaker than normal. With heart failure, blood moves through the heart and body at a slower rate, and pressure in the heart increases. As a result, the heart cannot pump enough oxygen and nutrients to meet the body's needs. The chambers of the heart may respond by stretching to hold more blood to pump through the body or by becoming stiff and thickened. This helps to keep the blood moving, but the heart muscle walls may eventually weaken and become unable to pump as efficiently. As a result, the kidneys may respond by causing the body to retain fluid (water) and salt. If fluid builds up in the arms, legs, ankles, feet, lungs, or other organs, the body becomes congested, and congestive heart failure is the term used to describe the condition.  Because of this, Leza was on medication that for all intent and purposes, she would most likely have to take the rest of her life.  However, God

 

Today we were told that Leza could come off her medication!  She no longer has this diagnosis and her heart looks wonderful.  Do I believe it's a miracle? You're darn tootin'!  Could the original Dx have been wrong?  Maybe, but not likely knowing the doctors who attended her prior to her adoption.  We serve a BIG God for whom nothing is impossible.  All glory and honor go to Him!  Amen!

God is in the Details

Have you ever heard the saying "The devil is in the details"?  I'm hear to tell you that just aint true.  We serve an amazing, detailed God.  If you don't think so, just think about the human eye.  The other day I had an eye exam, my first in six years, so the eye doc wanted to dilate my eyes.  Once done I was talking with the eye glasses person, in case I wanted a pair, and my eyes started hurting really bad.  She told me it was because I had them dilated and got me a pair of those stylish sun glasses.  Yes, that's sarcasm. 

 

So driving home I was thinking about the amazing eye and how the iris dilates or retracts (not sure if that's the correct term) in order to let in or keep out the appropriate amount of light.  I thanked God for such an amazing detail in this human body and when I did, He reminded me of something that happened while we were in Ukraine.  Something I've wanted to share with you, but for some reason not until now.  I guess it's one of those "Mary things" where she pondered them in her heart.  This was one of my ponderings because it was so personal, that it really was only a big deal to me even though it was a very minute detail.  Today as I was trying to take a nap I felt a nagging that I finally needed to share this.  Maybe you are the one who needs to read it just for today.

 

By Dec 21st of 2013 I had been in Ukraine adopting our three children for almost 6 weeks.  I was tired to say the least, had been sick, was feeling better, but still recuperating my strength.  When I don't feel well small things seem to matter more. Jode had been in another region, springing two of our babies from the orphanage and arrived the next morning, very early, in the region where I was.  Our precious Leza was celebrating her 4th birthday that day, Dec 22nd.  Since this was her first birthday celebrated in her family, I wanted it to be very special.  I had purchased her an adorable outfit and Katherine and Asa were coming to help us celebrate.  Katherine is a photographer and was going to capture this very special day for us so of course, I wanted it to be perfect.  Now if you know anything about us Southern Mommy's you know that our daughter's ensemble is not complete without a coordinating bow in her hair.  Not only did I not have a bow, I did not have a rubber band to get her hair out of her face.  Poor little pumpkin all dressed up in her pretty pink and purple and her hair was covering up her pretty little face.  Until . . .

 

I had gone to the kitchen to make a cup of tea.  I made tea for myself several times a day since it was very cold while we were their, and I happen to love tea.  It's comfort food for me.  There was a cute little wire tea cup holder in our apartment with about four tea cups hung from it, and I had used those cups so often.  So while I'm making my tea, fretting about Leza's hair and planning to make a trip to the open market, you can imagine my surprise when I turned around and saw it.  I know it had not been there previously.  I would have seen it after all, the wire tea cup holder only held one tea cup at present because the rest were either in use or needing washed.  So how could it have gotten there?  Who could have put it there.  I asked Jode but he had no clue.  So I wept, silent tears, but tears of immense thankfulness, for my God who knows my heart, even the smallest detail.  It was small, very small, perfect for a little girls thin hair.  A perfect white rubber band which made this Mommy's heart sing. 

 

God has a way of saying "I'm here, and I'm working on your behalf down to the smallest detail."  I'm so thankful that He is.  When I'm discouraged about the big picture, I remember that He cares enough about me to make sure I had a small white rubber band.  God is in the details, even those that matter to only me. 

 



We're Home and All's Well

Hi All,

 

I know it's been a long time since I posted, so I wanted to update you.  I'm sure you can understand that we've been just a bit busy. I'll start with the kids. 

 

All six of them are doing well.  We had a bit of regression in Ian upon our return but that was to be expected.  He was the baby and now there are three more who are "younger" than him developmentally if not chronologically.  He's doing better now that we've been home two months! 

 

Gavin is learning to be a little less animated around the new littles and that personal space is important.  His "regression" upon our return was shown in anxiety, but thanks to caffeine, yes we give him coffee to help calm him down, he's doing much better.  We tried using lavender essential oils in a lotion, but unfortunately it caused an asthma attack.  We also take him, as well as Ian and Flora, out by themselves so that we have some personal time with them. 

 

Flora is being little mommy which we knew she would.  We're having to teach her that although she wants to play with and mother all four of her smaller siblings, she cannot pick them up or tote them around.  I say smaller siblings because although Gavin is younger, he outweighs her by at least 10 pounds.  She does not try to tote him around!

 

Misha, who we call Mr Fussy Pants, is quite opinionated.  He will definitely let you know if he does, or does not want something or want to do something, like go to sleep.  When he first got home he would SCREAM at the top of his lungs, which were quite substantial considering his itty bitty self, and he would do it for extended periods of time when laid down for bed.  No amount of appeasement would suffice.  However, he has stopped doing that, finally, and usually goes right off to sleep with the rest of the boys.  He's a picky eater and does not like too many fruits or veggies so we are having to find inventive ways to get them into his diet.  He is smart.  Very smart, and has learned to stand without the use of his hands since they are the weakest part of his body due to his arthrogryposis.  However, with all the tenacity of a pit bull, he is learning to use them and strengthen them in order to feed himself, play with toys, and wrestle his sister's pacifier out of her mouth!  He's learning English quickly and adds new words to his vocabulary daily it seems. He amazes us and we couldn't be more proud of him. 

 

Nicolai is becoming more affectionate.  He will snuggle and cuddle now where in the beginning he really was not interested.  He's learning to actually play with toys rather than just throwing them, although he still thinks it is hilarious to throw whatever is closest to him so that we have to pick it up.  He's walking very well and being the size of an infant, he looks absolutely adorable toddling across the floor.  He's learned to be more patient when we're eating.  Initially if he smelled food, he thought he should be eating and would throw an absolute fit, trying to climb my leg, while I was cooking.  Now he's pretty good about waiting until we're all at the table and have said prayer.  He does not throw a fit when eating any more and he waits to chew what's in his mouth before getting another bite although we still have to only give him one bite at a time since his eating habits are that of Sesame Street's Cookie Monster.  He has learned to hold his own spoon, get the food to his mouth and hold and drink from his own cup.  He also is no longer throwing it on the floor in between drinks.  He's babbling new sounds in the past few days much like an infant would do which is great.  He has not done that previously.  Now I know you may be thinking, most kids do that, but trust me, these are huge milestones for him.

 

Leza is coming out of her institutional behaviors more and more.  We are seeing less stemming and more actual attending to her surroundings.  She's walking almost exclusively and not so much scooting.  She can also eat using a fork/spoon and drink independently from her own cup.  These are great strides for a little girl who would not even hold something in her hand two months ago.  She's playing with toys, the baby doll she sleeps with and she will actually look at a book.  Previously she would push anything away that was placed in her lap or hands.  She's learned a few words like Momma, Dada and Nite Nite and loves to sing (la la la la la).  I have started vocalizing with her and she will initiate it herself at times.  We gave her a binki to chew on in an effort to get her to stop grinding her teeth.  It's working pretty well.  She's maintaining eye contact more and more, and her eyes are becoming stronger.  We still feel she cannot see that well, in part from her strabismus, crossed eyes, but she may also be near sighted.  She has an eye appointment next week. 

 

Jode and I are doing well. Well, sort of well.  I've been sick off and on since early Dec while we were still in Ukraine.  I'm sure this past years' experiences have put a strain on my immune system in spite of my efforts to boost it.  I'm still battling something, but with six littles and two of them in school bringing home whatever is going around, it's sure to be a battle.  Jode too has been under the weather a little, but this too shall pass. 

 

Now I want to brag on Jode a bit.  Through all of this Jode has been working on his degree in Nuclear Engineering Technology.  Yes, Nuclear Engineering.  I know what you're thinking, he's that good lookin' and smart too?  Uh huh, that's what I thought when I first met him.  Too good to be true! ;-)  He'll be graduating in May with honors, 4.0 to be exact. He's already started applying for positions and has his first follow up appointment March 11th.  I couldn't be more proud. 

 

I think that's it for now.  If you've not seen any of our most recent pics, all of the kids are doing amazing, really.  We are very blessed to have each one in our lives and we are very excited to see what God has in store for each of them.

 

In closing, may I ask that you please remember to pray for Ukraine.  The country is on the brink of war and our hearts are breaking for the people there who we came to know and love.  Please, please keep them in your prayers. 

 

With love,

Jode and Kelley and family