International Family

Those of you who have been following my blog for awhile may recall that, when we picked Alayna up from her orphanage in 2010, we were able to meet her mother and her maternal grandparents. Over the past two years we have maintained that relationship through pictures, emails and social networking.

This afternoon we had the privilege and blessing of visiting with Alayna's mother, Didi, and her grandmother, Violetta (as well as their friend, Natasha, who served as our translator). It was a two-hour drive from their home to Sofia and they were only able to stay for a short time, but it was time well-spent. We exchanged hugs, kisses, pictures and gifts and best of all, we were able to Skype with Alayna (who very proudly showed everyone how well she is walking and going up and down stairs, gave us a tour of her bedroom, introduced all of her siblings, sang several songs and even showed off her prosthetic and her back brace).

Seeing the joy on Didi's face as she watched and talked with Alayna was a priceless gift.

What a privilege it is to know this beautiful woman, who has become my sister and friend, who  sacrificed so much to give her daughter the best possible chance to achieve her full potential.

Baba Violetta and Grandma DD

 What a blessing it is for Alayna to know that she is loved and cherished by BOTH of her mamas.

How grateful I am to my Heavenly Father for orchestrating such a precious relationship.

Mama Valerie, Mama Didi, Natasha, Baba Violetta, Grandma DD, Benjamin and Thomas (with Uncle Keenan as photographer)

Alayna has an announcement to make. . .

. . .After 9.5 years of waiting, she finally has two feet on the ground!


The road has been long with MANY bumps along the way, but through hard work, determination, endurance and always a positive attitude, she has triumphed!



Needless to say, Alayna has a lot to smile about!


We are so proud of our beautiful, brave, determined, faithful and fearless girl!

"All About My Mom and Dad"- A lesson about love

As part of our history curriculum the kids are learning to keep their own histories by writing in a journal regularly. At least three times per week I sit down with each of the kids and ask them about a particular topic. They narrate, I write, they illustrate. Aside from being a great keepsake (and hopefully a lifelong habit of journaling), it has been a wonderful opportunity for quality one-on-one time.

Earlier this week, I asked the kids to tell me a little about themselves. Yesterday I asked them to tell me a little about their mom and dad. It was a wonderfully sweet (and eye opening) experience to listen to them share their thoughts about their dad and I. With their permission, I'd like to share some of those thoughts. I should probably mention before I begin that we did our journal writing right before dinner which may account for the constant mention of food from every single one of them (I highly doubt it is because I am such a superb cook. . .I'm really not!).

Alayna: My dad makes fries and pizza. Sometimes he makes sandwiches for lunch. He vacuums. He takes me to the potty at night. He takes me to the park. He runs errands. My dad goes to work. Before he goes he gives us hugs and sings, "So Long, Farewell." He goes to the store to buy food. My mom takes me to Philadelphia. Soon I will get my prosthetic there. Sometimes she goes to meetings. She takes me to the potty. She makes breakfast, lunch and dinner everyday. She takes me to the doctor. My mom loves me. She tucks me in at night. She makes gluten-free pizza. She cleans the house. She is helping me write my history.

Alexis: My daddy goes to work. He gives me hugs and sings me songs. He takes me to McDonalds. He takes me to the store. My mom goes to the store. Mommy makes breakfast, lunch and dinner. Mommy helps me with schoolwork and reads to me. She watches "Phineas and Ferb" with me. Mommy gives me hugs and kisses.

Evan: I love my dad. He takes good care of me. He helps me get dressed. He earns money. I love to run errands with my dad. I love my mom. I love her cooking. I love her because she takes good care of me. I love her because she helps me go potty. I love her because she helps me get dressed and she feeds me. She helps me do schoolwork.

Maren: My dad plays baseball with me. He takes me on errands. He makes yummy waffles on Saturday. He plays Hide-n-seek with me. He's in love with my mom. Mommy makes eggs, muffins and pancakes. Mommy teaches me math. Mommy helps me with my worksheets. Mommy gives me baths. I like to read and do school with mommy. Mommy makes smoothies. I love mommy and daddy.

Lukas: My dad is cute. He makes me smile. I love my dad. My dad plays with me all the time. He goes to work to earn money. My dad teaches me that sometimes you have to do things you don't want to do. My mom is cute. She teaches me lots of lessons. I love my mom. I like to do school with her. I also like her cooking.


Jacob: I like my dad because he plays baseball with me. Daddy plays games with me. Daddy goes to work. He earns money and helps raise money for our babies. Mommy makes yummy pizza. She makes me smile (Daddy makes me smile too). She makes yummy homemade fries. I like to play games with my mom. I like to hang out with her too. She makes pretty things for our house. She says prayers with me.

Joshua was "too tired" to share his thoughts with me yesterday so I will have to share them another time. Lily isn't quite ready to narrate her thoughts yet, but she lets us know how she feels about mommy and daddy in other ways (she loves to look through picture albums and point out all of the pictures of mommy and daddy. . .this is HUGE for her).


It was very interesting to see what was important to each of our children. It was particularly interesting to see how much our older adopted children (who came to us at 3.5, 7, 7 and 8) focused their thoughts on basic necessities (food, clothing, toileting, hugs and kisses), needs that often went unmet in their previous situations (Evan especially). Our biological children (who have never had to go without the basic necessities) focused their thoughts more on activities, quality time and relationships.

What a blessing it was to get such an intimate look into how our children see us. As always, I am humbled by the simplicity of their unconditional love (and their willingness to overlook our MANY faults) and I am reminded that it is the little things that matter most to our little people. They are watching us ("Daddy is in love with my mom"), they DO listen to us ("My dad teaches me that sometimes you have to do things you don't want to do") and EVERYTHING we do matters to them! Once again, I tip my hat to my children for teaching me the most valuable lessons in life.

Friday's Fabulous Five

Last week (Thursday-Saturday) was our 4th Annual Adoption Yard/Bake Sale. Needless to say, I didn't have much left to give by Friday evening, hence the absence of last week's Fabulous Five. So, here are five things that have happened in the last TWO weeks that have given the Riebens something to smile about:

1. Like many of you who are claiming the Adoption Tax Credit (now refundable), we are STILL waiting for our refund (we filed our taxes at the beginning of February). We had hoped to use this money to fund our current adoption, but unfortunately, it looks like we are going to have to raise the bulk of the funds for this adoption the old fashioned way! For the past 6+ weeks, friends, family and even strangers have cleaned their closets and donated items to our 4th Annual Adoption Yard/Bake Sale which we held last Thursday-Saturday. Prior to the sale, we prayed that we would be able to raise enough money to get through the next steps in the adoption process. As things drew to a close on Saturday afternoon and we began adding the money we realized that we had raised the EXACT amount needed to file our I800A and complete our dossier! For those of you who are considering taking the leap of faith to adopt a child, but are worried about finances, let this be another lesson that, if the Lord calls you to it, He'll see you through it! We'd like to offer an ENORMOUS "Thank you!" to all who donated, shopped, helped and supported us in this endeavor!

2. I am happy to announce that, sweet Rieben baby #10 (previously "He-who-is-yet-to-be-named") now has a name! The name that we have chosen is one that has been pushing itself to the front of my mind for a long time, but because it has never been on my list of favorites, I have always casually pushed it aside. As I settled into bed one night last week, I found the name swimming around inside my head once again. The next morning, Richard poked his head out of the shower and asked me if I had considered this name (I had not mentioned it to him previously). The fact that the name had been on both of our minds and that we actually agreed upon it made it golden, but before we made it official I decided to see what the name meant. . . .and I laughed, realizing once again what a great sense of humor our Heavenly Father has! The name means, "Twin." No, the boys are NOT twins, but they are only a few weeks apart in age, share an extra chromosome and certainly LOOK like they could be twins and already, people are referring to them as "the twins." As a mother of multiples, this drives me CRAZY! At the same time, I recognize this name to be a beautiful reminder that these precious boys, though they did not share a womb, were meant to walk through this life together as brothers. So, now that you have all waited SO patiently while I have rambled on and on about this name, Rieben baby #10 will be known as. . . . .

Thomas Christopher (TC)

3. Just in case you didn't hear us celebrating this piece of good news around the world. . . .Alayna's second skin graft was a SUCCESS!!!! She is still taking it easy as the new skin settles into it's new home and puts down roots, but her chronic wound is officially no more and we could not be happier. We will be heading back to Philadelphia at the end of July for her first prosthetic fitting and are hopeful that she will have two feet on the ground and be running circles around us all by the end of the summer! Hallelujah!!!

4. While most of you were relaxing by the pool, playing at the park and working on your tans this week, the Rieben kids were hard at work. . . . .at school! We started school again at our house this week. Earlier in the year (as we were driving back and forth to Philadelphia every few weeks), we made the decision to follow a "year-round" school schedule. Not only does this accommodate our traveling better than a "traditional" schedule, but it has helped our children who are behind (Alayna, Lily and Alexis in particular) have more opportunity to "catch up," AND it helps us to maintain a more consistent schedule (which is vital for so many of our kids, adopted and biological). We have had an EXCELLENT first week and, although homeschooling 8 children does make me want to pull my hair out on a regular basis, it also gives me A LOT to smile about! Seeing my children get excited about learning and knowing that I helped to facilitate that love and excitement is incredibly rewarding!

A glimpse of our "school room!" (we found these desks on Craigslist and were able to purchase 10 of them for $75! What a steal! And it has made such a difference for the kids to have their own work space.)

We learned a little about archaeology in school this week. Today we set up our own archaeological dig site in our backyard.

Our site manager

Budding archaeologists

Our record keeper (Lukas would be a brilliant archaeologist. . .he is incredibly detail oriented and organized. He LOVED this activity!)

5. This week the kids and I started a project to benefit other adoptive families. It combines my love of creating beautiful things with my love for adoption AND my kids are an integral part of it! We're not quite ready to share all of the details yet, but we are SO excited for this opportunity to bless other families on their adoption journeys! As a sneak preview, these fun fabrics will be a part of our creations. . . .

Friday's Fabulous Five

Several years ago I started keeping a "joy journal." At the end of each day, I would write down five things that had happened that day that made me smile. I called them my "Fabulous Five." It is so easy to get caught up in the challenges of raising children that I was forgetting that the joy in motherhood often comes in moments and, rather than focusing on these moments, I was letting them pass me by. In the beginning there were days where it was really a stretch to think of five "fabulous" moments, but as I continued to look for those joyful moments of motherhood each day, I discovered that those things naturally became the focus of my day, allowing the challenges and frustrations to fade into the background.

It is also easy when blogging to focus only on the "big" events in life and to gloss over the little things that make day-to-day life so sweet. Beginning today, I would like to introduce "Friday's Fabulous Five," an opportunity to share with you a few of the joyful moments that we experience each week! So without further ado, here are a few things that have given the Rieben's something to smile about over the past few weeks. . . .

1. Last Thursday, my sister-in-law, Lauren and my brother, Ben, welcomed their first child into the world. Miss Kayden Paige entered the world at 9.5lbs and 21 inches (Lauren is my hero)! She is a beautiful baby and I cannot wait to get my hands on her!

Kayden Paige

2. With so much going on in the past few weeks, I have managed to get a little behind with the laundry, particularly MY laundry. When I went to get dressed last Friday morning, I discovered that I was out of clean jeans. . . .except for the "skinny" jeans tucked away in the deep recesses of my dresser drawer. Preparing myself for disappointment, I pulled out a pair, took a deep breath, stepped in. . . . .and pulled them right on! It was a GREAT day :-)

3. Last Friday, Alayna finally got her new glasses (she has needed a stronger prescription for quite a while and has been without her glasses for several months now). When she put them on she gasped and said, "I can see!!!" Then she turned and looked at me and said, "Mommy, I see you. . . .you have a little head!" She has insisted on calling me "Little head" ever since. It always puts a smile on my face.

4. Nothing relieves stress after a long week like a Friday night dance party (those of you who are LDS might recognize some of the songs. . .the CD is called "Popcorn Bopping'" and consists of jazzed up versions of many of the Primary songs. . .hilarious!)

5. Last, but DEFINITELY not least. . . .Last Friday we received word from Bulgaria that the Ministry of Justice (MOJ) had accepted our commitment application for two precious baby boys with Down syndrome! Surprise! Introducing #9 and #10:

Benjamin Daniel
(named after two of my amazing little brothers)

AND

"He-who-is-yet-to-be-named" :-)
(accepting any and all suggestions that work with Christopher as a middle name)

Knowing when to say, "When!"

Making complicated medical decisions on behalf of your children is never easy. Those decisions WILL alter your child's life (hopefully for the better) and consequently, yours as well. Making the decision to travel to Philadelphia to receive a higher standard of medical care for several of our children was NOT a difficult decision. When we made that choice over 3 years ago, we knew what it would entail, but we readily accepted the challenge because we also understood the difference it would make in the lives of our children receiving treatment and our family as a whole.

On January 27th, Alayna had her right leg amputated through the knee in Philadelphia. . . just three weeks after bringing Alexis home from Bulgaria. Alayna had been looking forward to this surgery since we picked her up from the orphanage in July. She was ready for a prosthesis and the chance to finally put two feet on the ground-the chance to walk and run! We never could have guessed at that time that we would spend the next 4+ months traveling back and forth to Philadelphia trying to heal a chronic wound caused by the improper healing of her surgical incision.

After 8 trips to Philadelphia, the healing of Alayna's wound had stopped progressing. It seemed we had reached a plateau and nothing we tried seemed to help. In addition, her pain was beginning to increase and it got to a point where I think she could feel every raw nerve ending across the surface of her wound (8cm long, 4cm wide). She was miserable.

Alayna was not the only one suffering from this prolonged healing process. After four months of traveling back and forth to Philadelphia, never truly being able to establish a firm routine, all of the kids were paying the price and it was evident in their behavior. The chaos was particularly hard on Alexis, who had very little time to adjust before being thrown into the whirlwind of traveling back and forth between home and Philadelphia.

As I sat in the waiting room at the pediatric dental office one day, watching my children struggle to control their emotions, listening to Alayna moan in agony because of her pain and reminding Alexis for the fifth time in ten minutes that it was not appropriate to sit on random strangers laps, I knew it was time to change directions. I wasn't being fair to my children and it was wreaking havoc on everyone. I made the decision right then and there that we would continue to seek treatment for Alayna's wound closer to home where we could be more aggressive with treatment and where we could establish a solid routine that would only be disrupted for hours at a time rather than days.

As soon as we left the dentists office I called our pediatrician and made an appointment for Alayna to be seen 15 minutes later. After examining the wound, our doctor placed a call to the general surgeons office at our local children's hospital (a doctor who just happened to specialize in burns and chronic wounds). Two hours later we met with the general surgeon to establish a new game plan and, less than 24 hours later, Alayna was in surgery for a skin graft.

Unfortunately, the first graft didn't take :-( Alayna's wound is located on the back of her right thigh and is under constant friction from sitting, laying down and even pulling her pants on and off, none of which promote healing. This is what caused her surgical incision to open in the first place.

Two weeks after her first graft (last Friday), she went back to the operating room to undergo a second skin graft. Although the first graft did not take, the wound HAD decreased quite a bit in size and the doctor felt much more confident that this graft would take. To increase the chances, a cast was also applied to her right leg to protect the graft site. We should know this afternoon whether or not this graft will take. . . . .

While changing directions in our treatment plan has certainly not been stress-free (far from it actually), it HAS allowed all of us an opportunity to spend more time focusing on establishing a routine that will help our family thrive as a whole and has also allowed us to focus more on the individual needs of our children (giving us the chance to move from "survival mode" to finally finding a "new normal").

When you have multiple children with significant special needs, it is SO easy to get caught up in the whirlwind of doctor's appointments, therapies, treatments and surgeries. It is easy to forget that, while those things are important and often vital, it is just as important to allow your children the opportunity to just be children. Sometimes you just have to know when to say, "when!" and I am so grateful for my Heavenly Father's guidance when it comes to making these life-changing decisions. He ALWAYS knows best!

We are still far from the finish line, but we can finally see the light at the end of this tunnel and, once we reach it, we will be taking a nice, LOOONG break!

The Readers Digest version

On January 1st I boarded a plane, bound for Bulgaria, to bring our daughter Alexis home. What I didn't realize then was that I was actually boarding the crazy train, destination not in sight :-) Since that fateful day, we have been on one wild ride. At some point I hope to go back and chronicle each adventure in detail, but for now, I give you the "Readers Digest" version of the last 4 months:

I spent January 1st-7th in Bulgaria, finalizing our daughter, Alexis', adoption. If you are just joining in on the fun, you can read all about it here.

Alexis and I arrived home on January 8th, which also happened to be Richard and Joshua's birthday (best birthday present ever, right?)! We celebrated a few days later, but unfortunately it appears that my camera was not invited to the party, because there is not a single picture in existence!

Daddy and Joshua (Easter 2011)

Doctors appointments, post placement reports, homestudy updates, playing catch up with school and adjusting to life with a new family member, consumed the next two weeks. If you're hoping for more details about this period of our lives you might want to start praying for a miracle because it was such a blur that I am having trouble remembering anything other than the fact that we all came out alive!

On January 22nd, our triplets, Maren, Lukas and Jacob, celebrated their 6th birthday! Can you believe that it was only six years ago that our adventures in parenthood began!? To say that the Lord has given us an increase might be a bit of an understatement ;-) Furthermore, can you believe that in just six years our tiny babies have grown from this:






Into this:




How I love this crazy trio of energy, intelligence, compassion, laughter and Christ-like love! More evidence of how much my Father in Heaven loves me!

On January 26th, Alayna and I loaded up the car and headed to Philadelphia for surgery. . . .in the middle of a blizzard! Everything was smooth sailing until we reached West Virginia, then the snow began. The next 10+ hours involved white knuckles, 30 mile per hour speeds and lots of adrenaline. At one point, we were even sideswiped by a semi (and I might have peed my pants just a little!). BUT, 13 hours after leaving home, we arrived at our destination, slightly terrified and extremely tired, but in one piece!

On January 27th Alayna had her right leg amputated through the knee and a tenotomy on her left foot (this is one of those topics that I plan to expound upon in the future, but remember, we still have 3 months of adventure to cover). Two days later she was discharged from the hospital and we began the trek back home, this time, in much calmer weather!

Alayna's right leg and left foot before surgery

Another view of her right leg before

Alayna's right leg and left foot after surgery

Less than 24 hours after surgery she is unphased and wishing I would leave her alone so that she could listen to her music

Two weeks after Alayna's surgery I returned to Philadelphia, this time with all 8 kids in tow, for a post-surgical follow-up appointment for Alayna, as well as appointments for Joshua and Evan. As I was changing the dressing on Alayna's leg the night before her appointment, I noticed that her incision had dehisced (that's fancy for, "the surgical incision had opened up"). Unfortunately (or maybe fortunately) this was not the first time that we had experienced wound dehiscence, so I knew immediately that we were likely in for a real "treat"! After examining the wound, the doctor sent us home with the necessary supplies to apply wet-to-dry dressings 2-3 times per day and we scheduled a follow-up appointment for two weeks later.

The kids and I returned to Philadelphia 2 weeks later. The wound had continued to open but it WAS healing so I was given instructions to continue the wet-to-dry dressings and return again in two weeks.

Outside of the Ronald McDonald House of Southern New Jersey-Our home away from home

So, two weeks later, the kids and I returned to Philadelphia again. At this point the wet-to-dry dressings were not keeping the wound moist enough (despite how often I changed the dressing) and we had reached a plateau in the healing process. Several wound care specialists were called in to look at Alayna's leg and together we came up with a new plan. Unfortunately, this plan involved an extended stay in Philadelphia. What I thought would be a routine trip of 2-3 days had suddenly turned into 2 weeks. . . .by myself, with 8 kids, totally unprepared :-) Have I mentioned how much I love a good adventure!? Fortunately, Richard happened to be on a business trip in Washington DC and he and his dad spent a day gathering needed "supplies" that they sent with my mother in-law to drop off for us on her way to visit my sister in-law in New York (did you catch all that?).

We know how to make ourselves at home in small hospital exam rooms :-)

Truth be told, other than the initial stress of learning that we would be staying for 2 weeks, not two days and trying to figure out all of the logistics (specifically, managing all of our diet restrictions away from home (Lily (Celiac) is gluten and dairy free and Lukas (ADHD) is gluten, dairy, egg and refined sugar free), the kids and I had a great time. In the past 3 years, we have been to Philadelphia over 50 times and this was the first time we have ever had the opportunity to really experience Philadelphia. We had a blast doing it.

Two weeks after we arrived, we were given the green light to go home and, yep, you guessed it, return two weeks later. And we have lived our lives in two week intervals ever since (But don't worry, this isn't really anything new. Remember how I said we've been to Philadelphia 50+ times in the past 3 years?)!

Our most recent adventure in Philadelphia (some of you may notice a familiar face. . .that amazing smile belongs to Aaron Nalle, recently rescued from an institution in Ukraine, now changing lives with his incredible spirit and fantastic smile!)

Don't worry, our trips to Philadelphia aren't the only things keeping us busy. During the past 3 months we have also had 9000 other doctors appointments (closer to home, thank goodness), Richard has been on 5 business trips and is still in school part time, and Alexis fractured her arm during one of our rare three week breaks (Daddy+6 kids on a trampoline=not a happy ending).

Now, lest you think that the past 3+ months have been all trials and no smiles, let me assure you that we have had much cause to celebrate as well.

On March 13th, Lily celebrated her 8th birthday. This was her first birthday in our family and she loved it so much she is STILL talking about it!! She has also started attending school part time, and, after the initial adjustment, she is loving it (many more details to come on this subject later).


On April 28th, Alayna celebrated her 9th birthday. Unfortunately, we had to spend her birthday in the car driving to Philadelphia, but before we hit the road, we were able to start our day with gifts and a breakfast of double chocolate cupcakes. But the celebration didn't end there. The staff at the Ronald McDonald House of Southern New Jersey was waiting for her with a huge stack of birthday presents when we arrived that evening AND, when we returned home, she was able to celebrate her birthday again with her Nana (who she just happens to share a birthday and her love of all things chocolate with)!

Alayna and Nana celebrating life and chocolate!

Perhaps one of the most exciting developments of the past 3 months however, is that. . . . .EVAN IS WALKING!!!! That's right folks, Evan is on the move! In his own words, he is a "walking machine!"

A trio of "walking machines"! So proud of my incredible kids and all that they have overcome!

He finally received his new braces (KAFO's) in mid-February and he has been up on his feet ever since! He still needs to use his walker for support, BUT, just a few days ago he took his first completely independent steps! I have a feeling he'll be running circles around us all very soon! And to think that we were told (many times) that he would NEVER walk! Doctors! What do they know!?

Obviously I am leaving out a lot of details, but this IS the Reader's Digest version. I do intend to go back and fill in the blanks on many of our recent adventures because I do feel that it is important to share the things that we have learned and experienced over the past few months. It has been exhausting, stressful and, at times, downright overwhelming, but these experiences have also been the most rewarding experiences of my life and I have learned and grown so much.

The following slideshow is the Readers Digest version of the past 4 months in pictures. The song ("Falling Into You" by Caleb Rowden), aside from being one of my current favorites, serves to remind ME why I do what I do. "For ye are bought with a price: therefore, glorify God in your body, and in your spirit, which are God's" (1 Corinthians 6:20). My Savior ransomed me with His life and with His blood and so I give my life to Him by answering His call to love and serve the children that He has and will yet entrust to me. It is the most challenging thing I have ever done. It is the most worthwhile thing I will ever do. It is for Him.

A medical update

Those who are familiar with adoption, particularly those who have adopted children with special needs, know that the first few weeks and months home are generally filled with doctor's appointments, evaluations, tests and procedures. We have not been an exception to the rule. Our days have been filled with doctors appointments, blood work, xrays, stool samples, immunizations, brace fittings, exploratory surgeries, medications and list goes on. Fortunately all of those appointments, tests, and procedures have paid off.

For those who are unfamiliar with Alayna and Lily's special needs allow me to give a brief synopsis of what we knew prior to bringing them home. Alayna was born with multiple orthopedic special needs effecting both legs/feet as well as her spine. In Bulgaria she had been diagnosed with "Polymalformation Syndrome" and kyphoscoliosis. Lily was born with cleft lip/palate. Although both had been repaired, we discovered that she still has a hole towards the front of her palate caused by what our pediatrician believes was incomplete/improper healing. She had also been diagnosed with "Malabsorption Syndrome," (at 7.5 years old she came home weighing 28 lbs. and wearing a size 3T), though the orphanage doctors assured us that she had "grown out of it" (don't worry, we didn't believe them!).

Upon arriving home the girls were seen by our pediatrician who ordered the first round of tests and referred us to various specialists. Highest on our priority list was getting to the bottom of Lily's "malabsorption syndrome," which she had, quite obviously, not "outgrown." In addition to the height and weight discrepancies, Lily had constant loose stool/diarrhea, her abdomen was severely distended and she ate dirt like it was a dessert (this is a condition known as Pica and it is usually a sign of anemia which the orphanage doctors had told us she had struggled with in the past). I requested a referral to a Gastroenterologist (suspecting that she might be suffering from Celiac Disease) and, while we waited for the appointment we ran blood work to test for anemia.

Lily's belly was so distended she couldn't walk without waddling.

Not surprisingly, the labs came back positive. A few days later Lily had her first appointment with the GI who confirmed her diagnosis of severe iron-deficiency anemia and immediately started her on an iron supplement (to give you an idea of how severe her anemia had become, normal hemoglobin levels in children are between 11.5 and 16. Lily's hemoglobin was at 7.4 and steadily falling. Cardiac arrest generally occurs when hemoglobin levels reach 5 or below. Scary, no?). The GI (who also suspected Celiac or Inflammatory Bowel Disease) then ordered the intial tests to check for Celiac or IBD (this included more blood work and a barium swallow with small bowel follow through). Both tests came back elevated and the GI suspected that Lily might have a dual diagnosis of Celiac and Crohn's disease. The only way to know for sure was to perform a colonoscopy and endoscopy (which we now affectionately refer to as the "dual"oscopy) and biopsy both the small and large intestines. We quickly scheduled the procedures knowing that if she was suffering from Celiac disease, it was likely that her hemoglobin levels would continue to fall despite the iron supplements (since her body would be unable to absorb the iron). Again, not surprisingly, but much to our relief, the "dual"oscopies revealed that she did, in fact, have Celiac but, thankfully, not Crohns Disease (or any other IBD).

We immediately started her on a gluten-free diet. We also scheduled an appointment with the hematologist (to monitor and treat her iron-deficiency anemia) and ran more tests to pinpoint any other deficiencies that may have been caused by 7.5 years of gluten consumption. The tests for vitamin deficiencies came back showing a severe vitamin D deficiency (which confirmed our suspicions of early osteoporosis, though we are still waiting for several more tests to determine bone density and how advanced the osteoporosis is). Now, in addition to the iron supplements and gluten-free diet, she is also taking a heavy duty vitamin D supplement.

I am VERY happy to report that, after just a few weeks of following a strict gluten-free diet, my sweet little Lily has finally emerged! At a follow-up with the hematologist last week we learned that Lily's hemoglobin levels are finally at the low end of normal (11) and rising! She is no longer eating dirt. Her belly is no longer distended. She has gained 8 lbs.!! And my tired, withdrawn, sad little girl has transformed into an energetic, giggly, happy and finally healthy little girl! Her transformation is truly, truly AMAZING!! How can I even begin to thank my Heavenly Father for guiding us down the path that has led our sweet little Lily to physical redemption!?

We have yet to meet with the cleft lip/palate team at Shriner's Hospital for Children in Cincinnati, but now that Miss Lily is on the pathway to health we will be arranging those evaluations shortly. Fortunately, her palate does not seem to interfere with most activities of daily living (eating, drinking (she can't do a straw, but can drink from an open cup with no problems), etc.), but because her speech is so greatly effected, it is not something that we can put off for long (though after the barrage of GI tests and treatments she has been through for the past two months, I think she deserves a break).

In the midst of working to obtain a diagnosis for Lily, the kids and I loaded up the car and made our first trip to Philadelphia so that Alayna could be evaluated by "our" wonderful team of doctors at Shriner's Hospital for Children (the same doctors who treat Joshua and Evan). At the appointment the doctors confirmed that she is missing her right fibula completely (Type 2 fibular hemimelia). Her right foot (also missing bones) is severely clubbed. Her right leg is in flexion contracture (stuck in the bent position at 110 degrees). Her left leg is in extension (locked in the straight position; she can hyper extend, but can only bend to about 50 degrees.)She is also missing bones in her left foot and, although she was blessed to have had multiple surgeries in Bulgaria to repair the clubbing of the left foot, her ankle bones are in a "clothespin" formation and will eventually need to be repaired or she could suffer long-term damage from weight bearing. Her kyphoscoliosis was also confirmed. Her spine has a 72 degree curve (WOW!) but, thankfully the kyphosis (outward curve) isn't fixed and her spine is flexible enough that bracing may prevent her curve from progressing for the time being (though, at that significant of a curve, bracing will NOT correct the problem).

Ever wondered what 7 children packed into a tiny exam room looks like? This is it :-)

Our plan of action for Alayna is as follows: Due to the involvement of her right leg, our doctor feels that it will be in Alayna's best interest to amputate her right leg at the knee and fit her with a prosthetic. Initially I was resistant to the idea (prior to going to Philadelphia. . .at this point I know enough about this area of orthopedics that I knew as soon as I saw Alayna's leg what the options would be and, by the time we arrived in Philly, had already arrived at the same conclusion), but soon after arriving home from Bulgaria, I realized that this was going to be the best course of action for her. The other option is using an external fixator to straighten AND lengthen the right leg (because she is missing her fibula, her right leg, even once straightened, would be significantly shorter than her left). Once her leg is straightened and lengthened, her foot (which is stunted at about the size of a two year old and missing several supporting bones) would then need to be repaired. The process to complete those procedures would be lengthy (think YEARS) and external fixation carries with it a great risk of infection and subsequent complications and there is no guarantee, after all is said and done, that she would even be able to bear weight on that leg to be able to walk. Honestly, I cannot imagine putting her through all of that only to have her end up being unable to use her leg. Amputation and the use of a prosthetic would allow her to walk (and SOON!) and I can assure you, there is nothing this spirited girl wants more than to be able to be up on her feet and running with her brothers and sisters. This is the first surgery that she will undergo and will likely take place early next year.

Our next course of action for Alayna will be to manage her scoliosis. Because her curve is significant and can and will eventually effect her lungs, she will have a device known as VEPTR (titanium rib) implanted to stabilize her chest cavity and hopefully, slow the progression of her curve until she is old enough for a spinal fusion (if it is needed). This procedure involves telescoping rods that grow with the child (unlike a fusion) so that scoliosis can be treated and more effectively managed from a much earlier age. Fortunately, as mentioned earlier, her spine is fairly flexible so, while we are waiting for this procedure, she will be braced in order to slow progression of the curve.

Once both of these procedures are complete and we have been able to assess how her left foot (whose ankle bones are in "clothespin" formation) handles bearing the weight of her body, she will likely have an external fixator placed in order to bring the bones into alignment to prevent permanent damage from occurring.

Whew! And now you see why it has been so long since my blog and I have sat down for a nice chat (and I haven't even gotten to the attachment/bonding, homeschooling, current adoption and secret-harboring posts)! Although it has been a VERY busy 2.5 months, what an incredible blessing it has been to watch my beautiful little girls grow and thrive!

We were blessed with an extra special treat on this trip to Philadelphia! We were finally able to meet our friend and fellow Reece's Rainbow adoptive mom, Tammy Enberg and her AMAZING Ukrainian AMCer's, Ben and Sophie! Here is Evan, Ben and Sophie at the Ronald McDonald House after a LONG day at clinic. And just in case you're wondering. . .Tammy and I have already arranged Evan and Sophie's marriage :-)

Ever tried to get 7 children to look at the camera at the same time?
Attempt #27

Attempt #62

Okay, fine! 6 children looking at the camera will just have to do!