Ava's Birthday

Ava turned 9 years old on November 28, Thanksgiving Day.  It is so hard to be away from her on special days.  I wondered all day about what she was doing.  Did she even know it was her birthday??  The waiting is tough!  We sent her a birthday care package and were so glad to get some pictures of her enjoying her birthday cake.

Lighting her own candles...such a big girl.  We'll do this for her next year!!

What is our sweet girl wishing for?  We're praying to get her HOME soon!!

Look at those lips...so beautiful!! 

Cutting her own cake...can't wait to take care of this sweet baby!!

Look at her sweet smile as she gives cake to her friends!

 

Dig in!!

So in love with this little face!!!

Here's the smile that melts my heart!

 The first thing I noticed when I opened the picture was the houndstooth coat...that's God's little reminder that Ava is already OUR Alabama girl.  How can we doubt that He WILL bring her home to us?  Praising God that He lets us know with every step that Ava's adoption is a part of His plan for our family.

I spent several hours zooming in on all of these pictures.  Ava's lips are chapped.  She has no one to remind her not to lick her lips when it's cold outside.  She needs us to give her chap stick to keep in her pocket.  She needs her family to snuggle her close and keep her warm.  She needs us and we want her home so badly.  Please keep praying our sweet girl home.  The wait seems so long.

  Let us hold unswervingly to the hope we profess, for He who promised is faithful!

Hebrews 10:23

 

Ava Frances

 

We got new pictures!!!  There is an organization that is volunteering at Ava's orphanage and they were able to meet our girl.  These were taken yesterday.  Such a great surprise to get these in my inbox today.  Ava's smile just melts my heart, we are so anxious to get her home.

We have submitted our I800a to immigration and got our fingerprint appointment letter on Saturday.  We will be out of town on our appointment date, so we're hoping to be able to walk in for finger printing next week.  I800a approval is taking around 3 months right now.  Please pray with us that ours will be processed quickly.  I am beyond ready to see that big grin in person and hear her voice.  We have several videos but have not heard Ava talk.  Can't wait to see if she'll be a loud mouth like Lily and Reece or quiet like Mary Ashtyn.

We have been fundraising non stop since August.  We've been so thankful for everyone's support! We have a long way to go before our adoption is fully funded, but God continues to bless us and keep us moving forward.  Please consider helping us bring our sweet Ava home.  This is our tax deductible fund raising site:

https://www.adopttogether.org/bamfam6

We sent Miss Ava a little necklace with her first care package...thrilled to see her wearing it in the pictures. It also breaks my heart that I'm not the one who helped her put it on for the first time.  We've missed lots of firsts in Ava's life...so ready to have her with us!

We also got a new video of our little speedy!!   Lily's response was hilarious, "well, she can go fast with her walker, but my power chair is faster"!!  I have a feeling our girls will keep us moving when they are together.  I can't wait!  The bigs were excited to see their baby sister too. I love how they already care about her so much.

Please keep praying for us...the wait is so hard. 

Pray for our sweet little Ava as God prepares her for our family.

She knows!

Look at that sweet smile...the smile of a precious little girl who has waited so long for a family of her own.  Now our sweet Ava knows she doesn't have to wait anymore!!!   We got updated pictures and the nannies let us know that they told Ava she has a family.  She knows!!!!  Praising God for leading us to our youngest and refusing to let us walk away from her. 

 

 How adorable is she??  

 Another genius :)  On the video she wrote two rows of letter...smart girl!!

Please keep praying with us that Ava stays strong and healthy until we can get her home.  Pray everything continues to go smoothly and quickly.  Also, remember our family as we fund raise for Ava's adoption.  God's provisions have amazed us so far,but we have a long way to go.  It will all be worth it to get Ava home!!

Ava Update

Ava's care package has been ordered.  Hopefully, she'll be getting a photo album and letter from us very soon.  She'll know that she has a family!!  We should also get new pictures of our girl!!!  We are getting so excited. 

It is overwhelming how God is providing for this adoption.  We didn't just take a step of faith, we jumped off a cliff...fully expecting God to catch us.  He is, He really is!  We still have a long way to go to fully fund Ava's adoption, but God is reminding us daily that He WILL bring Ava home.

Love you, sweet Ava...can't wait to see this sweet smile in person and hold you in my arms!!!

Help us get Miss Ava home!! For every $5 donation made to our AdoptTogether site, you will be entered to win a 7 night stay in a beach front Gulf Shores, AL condo sponsored by kimberlyscondos.com.  Don't miss out! 

Click here to make your donation and enter to win!!!

Nothing is impossible with God!  Luke 1:37

Introducing...

Ava Frances

This sweet little face will make us BamFam6!!!

We found out today that we have Pre-Approval (PA) which means Ava is officially matched with us in China.  We can post her pictures and most importantly, let her know that she has a family!!!!

Ava Frances is already a special little girl.  She shares the name Frances with one of the most influential women in my life...my Granny.  For the past 8 months, my Granny has lived in Heaven.  There isn't a day that goes by that I don't think about my Granny and miss her so much.  I am so glad that Ava will have her name!  

 Click here for Ava's latest video

(Password is frannie16)

 Whoever welcomes a little child like this in my name welcomes me.

Matthew 18:5

HOPE with Every Step

 We are so excited to announce a huge fundraiser in our battle with Muscular Dystrophy!!

This is the second annual 5k/Fun Run sponsored by Renew Physical Therapy.  Lily's battle with Merosin Deficient Congenital Muscular Dystrophy is a daily struggle.  She amazes us with her constant joy and determination!!  Ava, who is waiting in China to join our family, also has Muscular Dystrophy.  We are prepared to continue our fight with MD with both our sweet China miracles.  Please register for HOPE with Every Step and help us win this battle!!!

HOPE with Every Step

(click above to get registration info)

Lily is ready, are YOU????

The Worst Day

I found this sticky note in my jewelry drawer today...it brought me back to the worst day of my life.  The day I realized that I would one day live every parent's worst nightmare.  The realization that I would outlive one of my children.  This day happened in late March 2012, it's taken me this long to even be able to blog about it.  Not really sure why I'm led to share it now, but it's on my heart and finding this note, just let me know it's time.

Late March 2012...Lily was still in her hard pants (body cast) and initial genetic testing had already confirmed that she had some type of Muscular Dystrophy.  We were waiting on muscle biopsy results to know what type.  I had Googled her symptoms for weeks and thought I knew exactly what type of MD Lily had.  I was prepared, I could handle it.  No big deal...mainly because the type I picked wasn't that bad. 

Lily and I picked the bigs up from school and hurried home.  Mary Ashtyn and I were going with a group of her friends to see The Hunger Games.  It was going to be a great night...one of the first times I had left Lily since her surgery and body cast.  We were really looking forward to it!

My phone rang not long after we got home...not a call I expected on a Friday afternoon.  It was Lily's neurologist with her muscle biopsy results.  I grabbed a little sticky note that was already written on...fully prepared to write the name of the Muscular Dystrophy that I was ready for.  As he began to go over the results, I realized my Google diagnosis was wrong...really, really wrong.

I heard Congenital Muscular Dystrophy, not good!!  I had skipped over that type in my research, it wasn't good and I did not want to think about my baby having that form of MD.  He said it!!  I wrote it on my sticky note!!  Then he says it may affect her brain...learning difficulties, seizures.  He goes on to say that it is a rare,progressive type that will ravage every muscle in her body.  As I wrote breathing and heart, I couldn't breathe and I couldn't see because I was sobbing.  Honestly, I had not cried about Lily's diagnosis until this phone call.  I think her doctor was shocked at my reaction because we had handled everything so well until now.  In my mind, I just didn't think it would be this bad.

I hung up the phone, closed my bedroom door, fell on the floor and screamed, "not my baby" until Trent came home from work and picked me up off the ground.   We read the sticky note together,cried some more and then started researching Merosin Deficient Congenital MD.  (I did make it to the movies with Mary Ashtyn...swollen eyes and all).

By the end of the weekend, we had told our families the diagnosis.  By the end of the week, we had found the president of the company who was working to find a treatment for Merosin Deficient CMD.  Within a few weeks, we were enrolled in the National Institute of Health study for CMD.  We were preparing for a battle that we were and still are determined to win.

The things I wrote on that sticky note should NEVER have to be written by any parent.  No parent should have to worry about the things that we face on a daily basis.  So, it's strange to say that as a family, we are thankful for Muscular Dystrophy...the bad kind!  Through Lily and her daily fight with Merosin Deficient Congenital Muscular Dystrophy, God has healed our family.  We are stronger and better than I could have ever imagined after that horrible day when our world changed forever.

The sticky note reminds me of the worst day...

This sweet face reminds me of the best days.  The days we get to be her family, loving her and enjoying every second that she is ours.

The sticky note also reminds me how big God really is.  After hearing the worst, it's amazing to continue to see Lily getting stronger and improving!  God is in control, no matter the diagnosis.

Help Finish His Story

We found out that our LOI (Letter of Intent) was sent to China today!!!  In a few weeks, we should get PA (Pre Approval) which means Ava will be officially matched with us.  At this point, we will be able to tell her that she is ours and that HER Mama and Baba are on the way.

Looking back over Lily's timeline from almost 2 years ago, we have so much left to do.  It is overwhelming to think about the paperwork and clearances and fees that we still have left.   The adoption process will be long, emotional and resource intensive. We cannot continue to go through this process without encouragement, prayer and financial support from our friends and family. We would like to invite you to journey with us throughout this process.

Someone told me last week that God was using us to write His story.  Gosh, I hope it's not a
comedy :)  I want our story to reflect His love.  I want it to inspire people to do more and be more for Him.  I want this story to have a happy ending! 


 Will you partner with us and support our family in bringing Ava home ?  Please help us finish His story!

We are committed to funding this adoption without any further debt. Ava and Lily will both have medical and mobility needs because of their Muscular Dystrophy.  We have to be sure that we are able to provide for all 4 of our children once Ava is home.  Another adoption loan is impossible at this point.

If you have the financial means to support our adoption, no amount is too small or too big; $5 to $5,000 or more - any and all funds will help! Our goal is to raise $35,000.  100% of your financial support will go toward our adoption costs, thanks to Adopt Together.

We also need your encouragement and prayer support!  Paperwork can be tedious and overwhelming, the waiting is so hard and traveling to the other side of the world...well, we love that part,but it can be scary.  We need a community of supporters to walk through each step with us.

Will you join our community of supporters?

We are so grateful for the love and support you have already shown us.   We want to continue this  journey together and share the joy of bringing our daughter home with you!

Love,
Trent, Kristie, Mary Ashtyn, Reece, & Lily

Ways to support the Bamberg’s throughout the adoption process:

1. Prayer. Commit to praying on a regular basis for Ava, for us, and for this process to go quickly and smoothly. Once we are home, pray for Ava as we start doctors' appointments to get more information about her Muscular Dystrophy.
2. Encouragement. Check-in with us. Send us letters and emails. Help us to remember what the work and the wait are for.
3. Financial. We are working to raise $35,000 to cover the costs (agency fees, government documents,orphanage fees, travel to China) involved with bringing our sweet girl into our family. You can contribute by going to:    https://www.adopttogether.org/bamfam6

Adopt Together is a non-profit created to help families raise the funds needed for adoption.  Your donation is tax deductible.

We realize that some people do not like to donate online,  here are instructions for check writing:

Make your check payable to AdoptTogether and put the Bamberg's name on the envelope and in the memo and mail it to: 

AdoptTogether
251 W. Central Ave #278
Springboro, OH 45066 

We have been overwhelmed with the love and support so far.  There are no words that will ever be able to thank you enough.  Our family is looking forward to finishing this journey with you.  His story will be even sweeter because we are in it together!

Back to School

 

These cuties survived the first week of school!!  Not only did they survive...all three of them REALLY enjoyed it.  Mary Ashtyn loves high school, Reece is excited about his 7th grade schedule, and Lily is Lily...she loves everything!! 

 9th, 7th, and 2nd Grade

The bigs hate taking this picture, but we've done it since Mash started school :)

 

 

 

 

Excited about 2nd Grade

Of course, I have NO pictures of the bigs inside the school.  Could you imagine if I burst in to take pictures??  Oh, the horror!  LOL 

Second day smiles...love them so very much!!

Finding Ava

I saw Ava's pictures for the first time in March (the same month we found Lily 2 years earlier).  Her big smile caught my attention immediately.  I was actually checking the Special Focus list for a friend of mine that God told me needed a little girl...He just hasn't told HER yet!!  LOL

After I had my friend look at "Frannie's" pictures, I didn't think much about her for the next two months. She was so cute, I just assumed she would have tons of families asking for her file and putting her on hold. On May 12, she was posted on one of my Facebook groups.  For some reason, I didn't even notice in March that she was diagnosed with Muscular Dystrophy.  I went to the advocacy site where she was listed and read more about this sweet girl...

Sweet Frannie is described as active, outgoing and having a ready smile.  Her file states that she gets along well with others and is a lovely girl.  She is also said to be very helpful with her teachers at school and with younger children.  She was sent for rehabilitation therapy and improved greatly. 

She is now said to be able to walk quickly with the help of a walker.  Please read just a bit about sweet Frannie from her file:

She desires father, mother and siblings, admire mates who adopted by foreign
family. In order to make her have a happy and warm family, healthy grow, we agree to
send.

I commented on the Facebook post about her to share how blessed we are by Lily and would be willing to answer any questions about raising a child with Muscular Dystrophy.  I also emailed Annie, the advocacy site administrator, and offered to do anything I could to help a family who may be interested in "Frannie".   Annie sent me her complete file plus a link to 15 videos of this sweet girl.  She also told me that only a few people had inquired about Frannie.  She and I agreed that it was probably the MD diagnosis.

As I watched the 15 videos of her, my heart was broken.  Watching this little girl get herself dressed and out of bed with no one to help her really got to me.  Trent was the same way.  We both said if we had the money, she would be ours.  Financially, it was just impossible, right??  We talked about her for the next 3 months and struggled with what to do.

God was opening doors, but we kept trying to slam them shut.  Surely, He didn't mean for us to have 4 children....how could we afford another adoption...2 kids with Muscular Dystrophy, come on God, really?   Us??  How??  We know everyone is thinking it and even saying it, believe me we asked ourselves these same questions over and over and over!

While we were on vacation in June, we talked to Mary Ashtyn, Reece, and Lily about her.  Their instant excitement was surprising.  Oh, to have the faith of a child.  "We can do it...we can have fundraisers...please, let's bring her home...she can sleep with me...what can we name her...I like being the only boy...3 girls, awesome...can we get her...please let's get her...I want to be a big sister...are we getting her...are we getting her...are we getting her".   My kids are the best and I am so proud of their hearts.  They never questioned, never doubted God's calling.  It took Trent and I longer to give in and take that step of Faith.

In June, we put our girl on hold, doubting ourselves the entire time.  We had shared her file with several families interested in adoption, but no one could move forward.  She had been listed with Lifeline for months and we knew her file could go back to China anytime.  Putting her on hold would mean an extension and her file would stay longer.  In July, we tried to back out and asked that if anyone else wanted to place her on hold, please let them.  The response was heartbreaking...noone else had even inquired about her :(

As we struggled with our decision, small grants came into Lifeline and were designated for Frannie.  People we barely know sent us donations for our adoption....people who said they felt led to help.  We actually held onto these checks and thought we would just have to return them.  We really thought we were going to have to say no.

While we were in Maryland for Lily's study, her MD doctors looked over "Frannie's" file and asked for more information.  On August 1, we were shocked to get more blood work done and another picture and video!  The day before we saw these videos another donation came in the mail.  Then, we see this sweet little video, "Frannie" was dressed up in Chinese silkies wearing a little necklace and bracelet.  The SWI (orphanage) even sent more information about her...smart, writes neatly, speaks fluent Mandarin, adored by everyone.  It was so obvious they wanted her to have a family and were doing everything they could to help her. 

As we watched the new video about a million times, we sobbed.  Oh, this sweet girl had our hearts!!  She zips across the room so fast using her little walker.  As she gets to the camera,she gives this huge smile.  It's almost like she knows...there is a family out there for her!  It's not every day they dress you up and make new videos.  She's eight years old and a smart girl, she had to have some idea.  At this point we are heartbroken to have to walk away from her.

On August 2, we get an email that "Frannie" had another grant designated for her!!  All of these grants and donations were not even close to fully funding her adoption, but the timing was amazing.  As we struggled with not being able to afford another adoption, God was showing us that He can do anything.   We were broken and ready to take that step of faith...FINALLY!!

On August 4, we started telling our families.  Was that easy?  NO!  Did some of them think we had lost our minds?  OF COURSE!  It took us another week to share our great news with everyone.  Most people have been so supportive.  In just one week, we have been able to send in our first payment (THANK YOU TO EVERYONE WHO DONATED AND PRAYED...we love you!!) and have most of our paperwork done to submit our Letter of Intent (LOI).  When this is sent to China, we will get pre-approval and be able to share pictures and videos.

We've taken a huge step of faith to get Ava home, but are already amazed at God's blessings.  If everything goes well, we hope to travel next Summer to bring her home.  Trusting Him completely and excited to share how He will take care of us each step of the way.

 

I can't get the links for our fundraiser sites to post on this blog, so I wanted to share them here...

 

Click here for our YouCaring site

We just got accepted by Adopt Together,so that donations can be tax deductible!!

Click here for our Adopt Together site 

We are so overwhelmed by the support we've had already.  You'll never know how much it means to us!  God has given us complete peace about bringing Ava home.  Please pray for all 6 of us!!

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. 

 Romans 15:13

 

It's sooo good!

It has been a great weekend!!!  We've been sharing about our newest daughter, Ava, and have been so thankful for all the support and encouragement.  I'll get to that in another post, but right now I have to share about Lily's power chair.

So excited about going to church!

She went right into Sunday School and pulled up to the table all by herself.

Lily was all smiles when we got to the sanctuary and she was able to go to her seat all by herself.  It was amazing to see her able to control where she was going and make decisions for herself.  I'm also happy to report that she is still being very obedient...for now :)

Giving her Zone friends a demo of her power chair at church tonight.

Love my nephews' faces as they watch her spin around, they were so excited for her!

Intense game of HeadBands during the church fellowship :)

Reality really hit us at an ice cream social we had after church tonight.  Lily rolled along beside me and picked out her own ice cream and snacks.  Not on my hip with both of us struggling to get a plate...beside me and holding her own ice cream.  WOW!!  After we ate, she wanted to go to the gym.  So, we let her...BY HERSELF!!!  As we sat and talked with our church family, I looked up to see my sweet Lily coming back to the fellowship hall.  Huge grin on her face and shouting, "I'm back"!  As she checked in and turned to go back to the gym, I cried a little blubbered like a big baby!!  

The second check in was just as sweet.  I did notice that one of her foot rests was crooked.  Uh Oh,not a good sign.  The last time it was crooked, she had almost climbed our refrigerator in her chair!!  Long story short, she "had a little crash in the wall" but our church is still intact with no major damage.

As Reece, Mash, and I turned the corner to leave, we found Trent and Lily at the water fountain.  My sweet husband may have been a little teary eyed as he watched Lily getting some water.  

 

Why would we get so emotional about this???  Our sweet girl took a drink of that water and said, "it's sooo good"!  She has never been able to get up to a water fountain before and get her own drink.  It's the little things that most people don't think twice about that mean so much to Lily.  I love watching her world open up to so many new things.  As we rode home, she told me she played follow the leader, tag, and raced with all the kids in the gym.  Just normal things, like drinking from a water fountain...but so big for our girl.  

Impossible~Difficult....

For several months, our hearts have been broken for the little sweetie that I mentioned here.  We've prayed for her, cried for her and checked to see if anyone had moved forward to bring her home.  Each time we checked, she was still waiting.  Trent and I talked to several families about her, but nothing ever worked out.

Why???  She is a beautiful little girl who deserves a family.  Her file says that she wants a Mama and Baba and brothers and sisters.  She sees other children leave with their families and she wants that...she deserves that!

 As we prayed, God was opening a family's heart to take a huge step of faith....

 BamFam5

BamFam6!!!!!!

We're going back to China, y'all!!!  Trust me, we are as shocked as you are :)  God just wouldn't let us walk  away from her.  Many will think we've lost our minds...nope, just our hearts.  Adoption has changed our hearts and we are broken for the orphans.  Once we get pre-approval and can share her pictures, it will be obvious why we couldn't let her go. We plan on naming her Ava and are still debating her middle name.

Our family made this decision after careful consideration and lots of prayer.  It wasn't something we decided easily or quickly. God has shown us through several different ways that He intends for us to add Ava to our family.  She has also been diagnosed with Muscular Dystrophy and we are fully aware of what that involves.  We are at complete peace adding Ava to our family and can't wait to bring her home. 

The biggest obstacle in our decision has been finances.  After Lily's adoption only 20 months ago and her medical bills, we can't rely on loans or savings to bring Ava home.  We have several fund raisers in mind and covet your prayers as we start this journey.  It's a huge step of faith, but we know God has big plans for Miss Ava!!

If you feel led, please visit our first fundraiser site:

Help Bring Ava Home!!!
(click on Ava's name above)

We've had over 1,000 hits on our blog in the past 2 days.  If those 1,000 could donate only $10...Ava would be so much closer to coming home.  We would really appreciate it if you could help us give this sweet girl all the love that she deserves.

Father to the fatherless, defender of widows — this is God, whose dwelling is holy. God places the lonely in families.  (Psalms 68:5-6)

Ready to Zoom!!

FREEDOM!!!

We have a very happy girl at our house.  She woke up proclaiming that "today is power chair day"!   Once the chair got here, she could barely wait for the salesman to finish making adjustments.  We all had to tell her to stop driving while he worked on it.  She grinned and said, "I'm just ready to zoom." How cute is that??  

Zoom, Zoom

For NINE years, she's scooted in her crouch walk or been pushed or pulled by others.  Today, she was the leader and we all had to follow.  It was the sweetest thing to hear her giggle and shout, "follow me, guys."

 "We're gonna have a little walk, come on guys...follow me!!"

Silly Lily leading the way...of course, she had to keep stopping to spin around :)

She loves the independence, but her favorite part of her chair??

THE CUP HOLDER!!!

Miss Priss has to approve all the pictures.  She looked at these and was quick to say that she looks just like Mulan today.  Oh, how this girl makes us smile.  Totally amazed by the peace that God gives us as we enjoy every day of raising the best kids in the world!!!  Two years ago, I could not imagine being excited over my baby getting a power wheelchair.  Today goes down as one of our best, only tears of joy to see Silly Lily so happy and independent.    God has changed us so much through Lily and I am so thankful!!!

 

A New Driver at Our House

Big news today...Lily's power chair is on the way!!!  

It will be delivered on Thursday.  We are so excited for her to experience the freedom that her new chair will bring.  Trent and I are breaking out our running shoes, Silly Lily is already challenging us to races.

 

Trying out a power chair at Children's...of course, Lily's chair will be BLUE!!!

If any local friends see a blue blur, it will be our girl racing by!  Our world will be changing big time...can't wait to see how well our perfect child behaves now that she can get away from us :)

In December, we'll have  ANOTHER driver, Mary Ashtyn will get her learner's permit.  Can this Mama handle all this independence???  Lots of prayers, please!

Sweet Summer Time

Is it really almost the end of June??  Our summer is flying by, but we are loving every minute of it.

I'm still trying to process that our miracles finished 8th,6th, and 1st grade this year!!!

Our 8th Grade Graduate

Mary Ashtyn will be in high school next year!!  So proud of everything that she has accomplished.  She was in the 8th Grade Elite for being in the 10 ten academically in her class and also made high school majorette in January.  Most importantly, she is a good, sweet girl who loves Jesus more than anything.  Nothing compares to watching her grow in her faith!!

Reece finished 6th grade this year.  He is a very smart boy and makes us proud with his grades.  I'm working on an entire post about his servant's heart...coming soon :)  He is the coolest kid and has the best personality.  He's an awesome first baseman and makes us smile no matter what he's doing.  Of course, when they announce your child on Opening Night of Little League and he "Gangnam styles" down the third base line...how do you not smile???  Love this boy so big!!

Not a great picture, but there he goes...Gangnam Style!!!

Lily at First Grade Awards Day

What a great first school year Lily Joy had!!  She made new friends and was so accepted at her school.  It was amazing.  Her teacher and her paraprofessional were so good to her and made sure she had a perfect year.  She started out the year recognizing her letters and letter sounds and blending very simple words.  At the end of the year, she was reading on grade level and doing excellent in math.  She is truly our little miracle.  

I love this video.  When we were deciding about adopting Lily, I told Trent she would need to come to school with him since he is the counselor at one school all day.  I travel between several schools, so we knew it would be better for her to be with him nearby all day.  I could picture her going across the stage at this school very early in our adoption.  Such a sweet moment to see it happen!!  Y'all know I cried, again!!

This ends the bragging portion of this post :)  Yes, we've been out of school for a month and it's taken me this long to post about the end of the school year.  Here's why....

School ended and we headed to St. George Island, FL!!

We skipped SGI last year since Lily had just gotten out of her body cast and we didn't know if she could make the trip.  The last time we were there, we were waiting on her and wondering about what it would be like for her to be with us.  This trip was better than we could have ever imagined!!  There will never be a way to explain how blessed we are by the three miracles that God gave us.  

She's Waiting...

Lily has been home for almost a year and a half.  It amazes me to think about how much she has changed my life.  Before Lily, I did not think I could handle a child with medical needs.  Now, I can't imagine a second without this sweet little girl.  When we get her out of bed in the morning, we're greeted with her sleepy hugs and kisses.  She tells us throughout the day how much she loves us.  I tuck her in every night with about a million kisses and snuggles.  She is pure joy,all day every day!  There is no way to put into words what our daughter means to us.  We have three perfect children that we know God intended just for us.

So Blessed!!

Over the last 2 weeks, I've been so burdened for another little girl.  She is almost the same age as my Lily.  I see the same spirit and determination radiating from this little girl that I saw the very first time I watched a video of Lily.  She has so much in common with my sweet daughter...too much.  She yearns for a Mama and Daddy and brothers and sisters...just like my Lily before God brought us together.  She struggles to do simple things for herself, but she does them...because no one gets her out of bed in the morning and covers her with kisses and lets her know that she is loved and wanted.  She is so much like my Lily, they have the same color hair and eyes and even weigh almost the same.  They share  the same birth country.  They even share the same diagnosis.  This sweet little girl lives in an orphanage in China and possibly has Muscular Dystrophy, just like my sweet girl.

I have spent so much time watching videos of this little girl who is identified as "Frannie" on a special focus list.  She is so beautiful and determined and perfect!! She is already diagnosed with Muscular Dystrophy and no one has moved forward to give her the family that she wants and needs.  MD is a scary diagnosis...is that why she is still waiting and wishing for a family?  It breaks my heart because I know the blessings of raising a child with MD.  I know that the joy my baby brings us far outweighs any struggles that we have.

Trent has watched the same videos and he's listened to me sob for this sweet little girl.  He understands how I feel.  IF our Lily had been diagnosed before we brought her home and we knew she had Muscular Dystrophy...would we have moved forward to bring her home??  It's a tough question and I honestly don't know the answer.  I know that the minute I saw her, God's voice was audible, "she is yours"!!  We were completely at peace with making Lily our daughter, even as doctors advised us that there could be more to her diagnosis than a hip dislocation.  We loved her, it didn't matter!!  Our family would have missed one of our biggest blessings if we hadn't stepped out in faith and brought Lily home.  It rips my heart out to think that we wouldn't have Lily if a diagnosis had scared us away.  I wish I had the right words to say to convince someone to take a chance on another miracle.

This little miracle is waiting to be loved and taken care of.  Trent has said IF we were rich (or even had a little extra) she would be halfway home with us by now.  The MD diagnosis does not matter to us.  We wouldn't think twice about making her ours.  Financially, it is impossible at this point.  God keeps putting this sweet girl on my heart, so I wanted to share the advocacy site so that others could see her and pray for her.  Could she be your daughter?  Oh, how I wish she could be mine!!

http://wonderfulwaitingkids.com//2013/frannie/  

You have to join the site in order to see the children.  You just have to provide basic information and your email.  It only takes a few seconds.  If you'd like to see Frannie's complete file, you can email annie.hamlin@lifelinechild.org to review her file.  I have it memorized already and I can tell you that she reminds me so very much of Lily.  Super smart, loving, beautiful, and yearning to be loved by a family.  



For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

Pray with us that "Frannie" is home soon!!  God's plans and His timing are perfect...this little girl is loved by Him.  We know that her family will find her soon.

Life with MD

Muscular Dystrophy is a part of our life, each and every day.  Most days, it doesn't bother me at all.  I pick up the strongest little girl I know with her big smile and sweet little heart and my heart almost bursts because I love her so much.  I am so thankful she is my daughter, MD and all. 
Everything in her life is a challenge, but Lily's determination and sweet spirit keep her going.  She is ALWAYS smiling and happy.  She only cries when she's hurt and never whines or complains.  This little girl has taught me so much about being cheerful. 

Most days are so good, I don't think about MD very much.  Caring for Lily and helping her with even the easy tasks are just a part of our day.  It's no big deal...most days.  Some days, MD makes me want to scream...IT'S NOT FAIR!!! 

It's been one of those days.  As I got Lily ready for bed, I told her it was time to put her knee immobilizers back on.  We've given her a break from them for way too long.  Contractures are a huge part of her MD and since her knees are tight and don't straighten, she wears these braces at night to keep her legs stretched out.  She hates them but rarely complains.  As I put them on, she had lots of questions about what Muscular Dystrophy means.  As I explained why she had to wear them, she put on her brave face and did her best not to get upset.  We changed the subject and I bragged on what a big girl she was at the dentist today.  We chatted for a few minutes and then I saw the tears.  I scooped her up as she started to sob.  "It's not fair, Mama...I don't like Muscular Dystrophy".  Oh, my sweet girl, neither do I!!!

I rocked her and we both sobbed.  My sweet girl who is never upset, just needed a good cry.   Today is just one of those days that Muscular Dystrophy sucks (can I post that??)  OOPS :)  If I could give her my Merosin and make her strong and healthy, I would do it in a heartbeat!! 

 I'm thankful for everything about my Lily, even the MD.  It makes her who she is, it's taught her to be a fighter, it's taught me to enjoy every minute of life and not to complain about the small stuff.  It's made me trust God more than ever, because I know MD was a part of the plan that brought our family together.  Every day I'm just so thankful that she is ours, I can't imagine a second without her in our lives. 

So now, our pity party is over.  We've got snuggling to do...knee immobilizers and all.

My little hero!!!

MDA Clinic

We had our second visit to the Muscular Dystrophy Association Clinic at Children's Hospital today.  Before MD became a daily reality for us, I had no clue what the MDA was all about.  Honestly, it used to just be a telethon that interrupted Saturday Night Live.  Now, we are so very thankful for the MDA and all that they do for families who live with Muscular Dystrophy!!  

While at the clinic, Lily is seen by several doctors including a rehab specialist, neurologist, and pulmonologist.  There is also a team of social workers, therapists, and a genetic counselor that follow Lily.  She is seen at the clinic every 6 months.  The MDA covers all the clinic costs and coordinates with outside sources for any equipment that the specialists determine that Lily needs.  It is such a relief to meet with doctors who are so familiar with Lily's MD.  Muscular Dystrophy is a scary disease, it's so nice to have a team in place that wants the best for our Lilybug.

Today's clinic visit went great!!  We had a long wait for a room this morning, but Lily managed to entertain herself.

She loved watching the fish!

 

 

She relaxed in the waiting room...LOL

 

 

 

She had a snack.

 

 

 

 She watched a movie on her Ipod.

We were so glad to see Dr. Davis, the rehab specialist...our girl was out of things to keep her quiet :)  Dr. Davis was pleased with how well Lily is doing.  He gave us some good suggestions to help out with some pressure sores that she has.  He and the physical therapist watched her go up and down the hall in her walker and couldn't get over how well she is doing.  They did notice that she tires easily and needs someone to push her walker.  They talked to us about getting Lily into a seating clinic and ready for a power chair.  It's a huge step for us, but we know Lily would benefit from the independence of a power chair.  Before we left, they set up an appointment for the clinic.  We'll start the process on February 8.  This is also the day that Lily will get her bike from Ambucs!!!  We are so excited.  Lily can't wait to get her bike!

Dr. Fequiere, Lily's neurologist, was excited to see how much stronger Lily has gotten since July.  He was one of the first doctors Lily saw when she came home and was the one who diagnosed her MD.  He and Lily have a sweet relationship and it's always great to see him.  He agreed that it was time for Lily to have a power chair.  He was sure to say that he didn't worry at all about her losing any of her current function once she has her chair, since she is such a "little spitfire".  

Lily & Dr. Fequiere

 

The pulmonologist had great news for us...Lily's lung function had improved a little since July!!!  We were in clinic today from 9:30-3:30 today, but that news was worth every minute of the long wait. 

 

 Pulmonary Function Testing

 

Lily's MD is progressive, we prepare ourselves to see a decline in her breathing, swallowing, and strength.  Hearing these specialist say that our baby is stronger is an answered prayer!  God gave us Lily to remind us just how good He is.  So thankful for our littlest miracle!!