Monday, December 6, 2010

Random family updates.

The four youngest are in bed asleep and John and the three oldest are in the barn working on the benches for the table. Very soon I won't be tripping over the 10 dining room chairs that end up in all kinds of weird positions around the table. (And Ava will no longer be able to tip the chairs over just to hear the loud sound it makes, yay) I just sent hot chocolate down to the barn for the boys, with Liesel. The house is so quiet, I didn't know what to do with myself. I guess it's as good a time as any to write a quick family update.

Jude and Liesel did great on their piano and guitar recital yesterday. John got it on video, I'll try to see if I can get it off his camera and post it. They have really found their little musical niche and it's fun that they can do it together, and it doesn't require a lot of driving around and being too many places as was the case when they were in soccer. Family activities have slowed down significantly and we have spent a lot more time at HOME since Joseph and Zoya came home and I'm starting to think that maybe that is how it is supposed to be. Truth be told I am LOVING not being involved in any sports at the moment. Although I realize that Simeon needs an outlet or he tends to be moody, fidgety, and destructive. I am thinking maybe football. There is a homeschool football group here locally that I think we'll check out for next year. Unfortunately homeschoolers in our state do not have the privilege of participating in public school sports as is an option in many other states. By the way, Simeon is doing so much better academically. Amazing what a pair of reading glasses can do!

Joseph is loving school! Sometimes on weekends he carries his backpack around the house signing 'school'. We are driving down the road and he sees a school bus, he goes nuts. His teacher says he is doing great, although we did get a note sent home last week that he was taking his clothes off, running around disobediently and hitting his teachers. :( I think his bad behavior was from staying up late the night before because for the most part he has gotten excellent progress reports. He insists on eating in the cafeteria, his teacher says. And when I pick him up from the bus stop he always...I mean always......tries to climb up into the bus driver's seat. It is obvious how badly he wants to drive that big bus. When I went to eat lunch with Hope the other day he waved at me from across the cafeteria, and nudged his aide and pointed to me, as if to say, "Hey, that's my mom.". Then he did his own little sign for 'hot' and gave me the thumbs up. So cute. Hope and I joined him at his table for the second half of lunch.

Zoya. Oh my dear Zoya. If anything is causing me anxiety right now it is my little Zoya. The more she gets to know us the more she refuses to eat. The one pound we all worked so hard for her to gain, she has lost again. She has produced a lot of different weights on a lot of scales, but my scale here at home says she weighs 20.5 pounds. She will be six years old in 3 weeks. When she isn't wearing clothes, she (still) looks like a walking skeleton to me. I can' t get her to eat most meals. I work and work to add calories to her food, but most of her meals just go to waste. I have discovered that she loves coffee. So I add Pediasure to it. She loves vegetables and salads, which I would love for any other kid except that she will not gain weight eating vegetables and salads. Ugh!! I have asked several doctors to consider placing a feeding tube in her. The doctors who can actually make the decision say it is not a medical necessity because she can eat. But being able to eat and actually eating are two different things. We have gone around and around from specialist to specialist trying to figure little Zoya and her problems out. We have been to 3 different oral/dental specialists trying to figure out a temporary solution for her cleft palate, until we can get her healthy enough for surgery. But nobody seems to know what to do with her. The Shriners/cleft hospital in Houston are apparently only taking babies at this time. So it looks like we will be seeking answers out of state for her. Probably back to Little Rock? Can we come see you Lorraine family??? :)

Ava is still loving The Little Lighthouse. We think she regressed a little bit, either while we were in Ukraine for so long, or since bringing two new strangers into our house. But she is starting to respond more to Joseph and to Zoya and it's fun to watch them all trying to nurture and take care of each other. I love that! Ava is picking up some habits, both good and bad, from Joseph, and vice versa. Hmmmm.

Hope has asked me to come help out in her kindergarten classroom. Zoya starts school at the beginning of the year (probably). I'm going to ask the school counselor if my big kids and I can volunteer once a week or so, tutoring or cafeteria duty, or something. Wouldn't that be fun? I did read to the kindergarten class one day a couple of weeks ago and always have fun hanging out with the kids at lunch time.

And John. How many times in a day do I think to myself how lucky I am. Who else would have traveled across the world and taken that risk with me, the risk of 'ruining our family' bringing all these little special little kids into our family. I am so glad he said yes. Yes we are busy. Oh so busy! Some days we hardly have a chance to say a word to each other all day, but somehow we make up for it here and there and after the kids are in bed. (And we still hold hands in church and in the front seat of our 12 passenger van with all the various sounds and activities going on behind us!) I feel so lucky, and I wouldn't trade places with any other woman in the world.


ErinL said...

OF COURSE! You are always welcome here!

Sarah said...

I'm surprised your doctors wont allow a feeding tube because she "can" eat. I do know with people anorexia they can be forced to wear a feeding tube...even though they obviously "can" eat. Would a feeding tube be something an eating disorder therapist would be able to subscribe. At some point I would think they'd starting labeling Zoya as anorexic. Or how will her not eating negatively affect her organs, muscle mass, and pose unneccesary stress on her little body? I'm just curious, and by no means am I saying she is anorexic--I didn't know for labeling purposes if it would help her get a feeding tube or not. I think Zoya is adorable and she has the sweetest looks about her. Too bad she doesn't like Breyers ice cream with hot fudge! She'd be gaining those pounds fast!

Deb D. said...

Always enjoy hearing about what is going on in your delightful family. I can picture the scene in your home and barn now with the little ones tucked in and John with the older ones enjoying hot chocolate while working on the benches. I love that you all may try to volunteer in Hope's, Joseph's, and (eventually) Zoya's school. You sure model good living to your children. And I love that you and John hold hands. Sweet, sweet, sweet. You all live life well. I will be praying in a more focused way for Zoya's eating challenge. Thank you for sharing with us all. Have a great week! We are enjoying a "Christmas Card scene" these last several days with the snow we've been receiving. So pretty, yet quite cold!

Amy said...

Our youngest is also adopted, has a repaired cleft palate and has had some eating/weight gain challenges. Her endocrinologist suggested adding carnation instant breakfast (in the cereal aisle) to her whole milk on those days when she won't eat... Apparently it tastes better than pediasure and has what she needs...not sure if it would be something else to try with zoya... Will be praying for you and zoya, I know how hard it s when they are not eating... :)

Amy said...

PS Our daughter had 'polycal' added to her diet too, helped her put on weight... Is a powdered calorie supplement that's added to liquid, not sure if it would be helpful... :)

Anonymous said...

Don't Let the Pigeon Drive the Bus!!


Great family update!!!

Sawyer has a hard time gaining weight too. Although, he did make the typical child weight chart for the first time since birth. (2%) So, he's getting better.

Can't get her to eat french fries? Butter on her potatoes? Lots of dressing on her salad? Bread???? Cheese on her veggies or salad????? Dip??? CHOCOLATE!!!

Did they ever get a retainer for her?

Is there a hospital nearby that has an international adoption clinic. They may be more 'understanding' of Zoya's issue. I know B'ham has one. Vanderbilt (Nashville, TN) has one. There maybe one here in ATL too. Hopefully, LIttle Rock can help you.

Good luck...I know it stresses you to no end.


Justine said...

Beautiful update! Thank you! Praying for Zoya and for wisdom for you!

Sherry White said...

LOVE hearing all about how everyone is doing. I can picture Joseph trying to climb right into that bus driver's seat, and signing to his mom from across the cafeteria. Oh my heart. What a difference from the life he used to live! I will be praying for your little princess rockstar, that you'll find the answer to help her so she won't blow away when you come out east to see us in the spring! If we're here, that is... ;) Tell John I loved the Chesa-Doodle comment. You guys ROCK! Oh, I LOVE LOVE LOVE being home with these guys, too! We're keeping organized sports to a minimum, and our family is so much happier & more relaxed for it. Love ya!

Stephanie said...

Does she dip her veggies in dressing? You could make your own ranch dressing and add as much high fat ingredients as possible..Does she eat cereal? Use pediasure in it inside of milk. Coffee flavored icecream? Have you tried fried tofu for protien? If she will eat smoothies....add protien powder to them. You can also add baby food meats to soups ( if she will eat veggie soups ) and you cant tell its in it because its soooo finely ground. Good luck... I'm dealing with food issues with my 9 yr old.. have been since she was 3. It's not as extreme as Zoya's, but it is frustrating! Google, Selective eating disorder in children.

Lisa (DanielsMommy) said...

How I love reading about your amazing family!! I wish I had some suggestions for Zoya...but I have to echo what commentor Sarah said...I also wonder if she could be anorexic? I wonder what it was like in her orphanage at mealtime, if her relationship with food was altered due to her enviornment or physical issues with being able to eat and it be a pleasurable experience. I do hope you find some answers. I can't imagine a 20 pound 6 year old. Her body may be small, but her smile is larger than life. Love to you all!!!

Anonymous said...

Cancer patients sometimes take Megace to increase their appetite... Of course, I agree that a nightly G-Tube feeding would be the best way to shove those calories into her- Can't you just say, "We've had her for X-Months, done everything we can, it hasn't made a difference, Next Plan."

A. Gillispie said...

I feel very frustrated for you about not being able to get Zoya the help she needs! I've been through "the system" with two of my kids who would not eat. Have you gone to a Ped GI yet? Dr. Donovan here in Tulsa assisted us with the placements of our two kids' g-tubes. With Kendi she came home at 23, got up to 25, then went back down to 20. At the time, the folks in Little Rock wanted us to try to add more calories first, but definitely mentioned g-tube feedings as a possibility if they didn't see increased appetite quickly. We added Reglan to her plan because we suspected delayed gastric emptying. Spot on. That did the trick for Kendi. She went from eating just a few hundred calories a day to well over 1000--and has gained about 5 pounds. Also, have you thought about visiting a Developmental Pediatrician? There is a group here in Tulsa that we've worked with in the past. We'll be praying for Zoya, and your mommy heart! It's just so stressful when your child won't eat. It's one of the most basic things we mommies are supposed to be able to help our kids to do!

MoonDog said...

we are in the boat in front of you, that would be not QUITE the same boat but close! Andre has been home since August. he looks like a little old man. he has NO butt. he is 31 pounds and 7 years old. he is picky as can be. (once we do find something he likes he eats several helpings of it.) I do all the things I swore I would never do. I dont run a deli you know! if you dont like what I cook then dont eat! except he is LITTLE! TOO LITTLE! and I cant stand to think him I break my own rules. I give him leftovers of something he liked when we have soemthing he doesnt like. he wont drink milk. wont eat chocolate cookies(but will lick the frosting in the middle) wont eat pizza or anything that is obviously tomatoey. he does like soup. they ate soup a lot in detsky dom. will zoya eat soup? hot chocolate? does she have enough words to tell you what she DOES like? it could also be that she is so small due to her other medical condition. maybe her medications kill her appetite? is that possible? I have PLENTY of perfectly good weight I would love to give her, if only it were that easy, you would have people banging down your door! lol. thinking of you. love ya. hugs. ps what about poor oral motor making eating certain things hard for her? and GI? does eating make her have problems with her GI system? diahreeah constipation pain etc?

Anonymous said...

Hi kids,
I love your family update, and you have such a wonderful support system going. You and John are perfect for each other in so many ways. As always, when you just get one challenge deminished another one will rise up. Regarding Zoya...I'm wondering if adding Protein Powder to milk shakes, smoothies or salad dressing; anything that she eats would help. Body builders use it to build muscle and it does work! I still plan to make her some pants after the holidays. If she gains weight by then...yea! We can adjust them.
Love you,

Shea said...

Add oil to the salads and veggies, add oil to sliced tomatoes and cucumbers. I did this trick to Oskar. He only wanted salads without dressing, so I snuck oil into it when he wasn't looking. Just a teaspoon of oil has like 14 grams of fat I think.

Cammie Heflin said...

Awesome post. I wish I knew some tricks for Zoya :( will an obturator not work?

Anonymous said...

I follow your blog and enjoy it a lot.

Here are some suggestions for little Zoya to consider:
- has she had a swallow study?, she may be aspirating and eating certain things makes eating unpleasant. If she is aspirating she will qualify for a g-tube.
- she might have silent reflux and she might benefit from a Proton Pump inhibitor antireflux like Prevacid available in solutabs.
- She might have delayed gastric emptying and there is testing available for it. Erithromicin would be a better choice if she is diagnoses with it. Reglan can have adverse neurological side effects.
- Periactin can be used as an apetite stimulant and gives good results in some SGA (Small for Gestational Age) and other growth syndromes. It is not recommended to be used if the child has reflux. The only thing is that you have to find a Dr that wants to prescribe it first.
- is she pooping OK?, if she is constipated she might benefit of OTC miralax which can a little tricky to find the perfect doses for each kid.
- Duocal is a tasteless powder that can be added to ANY foods to increase calories intake.
- Think of add ons (butter, cream, mascarpone cheese, humus, olive oil, udo oil, canola oil) to any food she might like to increase calorie intake.
- Have snacks ALWAYS available for her, at home, in the car, at the Dr and at school, you might need to add this request at her IEP meeting.
- Consider Growth Hormone Therapy, although widely critized it is not just for height, it cures failure to thrive, helps with muscle mass, and appetite. Under FDA regulations Zoya may qualify like a Small for Gestational Age kid that hasn't catch up by age 2.For personal experience I know it is worth it.
- Look for 2nd or even 3rd opinion regarding a g-tube placement.

Hope this helps,


Anonymous said...

I forgot to mention that there are studies that support that Growth Hormone therapy boost the inmune system of HIV patients and others affirm that treats HIV related wasting (10% loss of body weight).

I'm not saying that this is your HIV kid but just in case it applies.


Valerie said...

Come to Shriner's in Cincinnati for her cleft palate! They have a great team of doctors there and see kids of ALL ages! Lily is going for her evaluation appt. at the beginning of February. Your local Shrine Temple should cover your travel costs (flights/hotels) for you and, of course, there is no cost for treatment. Cincinnati Children's is literally right next door and they are one of the Top 10Children's hospitals in the nation for ALL specialties, so if you aren't finding answers closer to home, they are also a great option (truth be told, I am really just trying to get you to Ohio so that we can get together ;-)! Praying that you are able to find the answers for sweet little Zoya!