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!!

 

 

Christmas 2012

We had such a sweet Christmas.  Lily and Reece were so excited about the holidays. A little one in the house made Christmas magical.  I love to see the twinkle in their eyes.  Mary Ashtyn spent weeks making sure she found the perfect gifts for all of us.  She used her own money and was so excited to give them to us.  Lily also got into the giving spirit at the Santa Shop at school...her eyes lit up as she watched us open our gifts from her.

Christmas without Trent's Daddy was hard.  It was a good Christmas, but it will never be the same.  We  had to skip some traditions this year just to make it through...but we made it.   Please keep Trent's Mom in your prayers, we all miss him but it's so hard on her. 

Praying that everyone has a great beginning to 2013!!  Thanking God for all of my sweet blessings.

Reece's Gotcha Day

Eleven years ago, my sweet little boy was placed in our arms for the first time.  I will never forget watching them bring him into the room where we waited.  Trent and I couldn't help but giggle at those sweet cheeks.  Oh my word, he was the cutest thing!!!! 

The trip to Kazakstan was tough.  We were cold and hungry most of the trip.  Poor, skinny
Trent lost almost 12 pounds in the 10 days we were gone!!  We missed my brother's wedding and my sweet Mary Ashtyn's only time to be a flower girl.  For most of the trip, we thought we weren't going  to make it home for Christmas (thank goodness we made it home on the 23rd).

Through it all,  Reece was our bright spot.  The sweetest baby with these cheeks I couldn't help but kiss every few seconds.  Even today, he is my snuggler...always ready with the best hugs that make the worst days better. 

I am so thankful for my son.  God knew exactly what He was doing when He led us to Kazakhstan for Reece...what a blessing he is to us!!

Happy Gotcha Day, Reece!!!

 

Happy Gotcha Day!!!

Looking back and trying to describe the day that Lily came into our lives is impossible.  Reading back over my blog from November 28, 2011 captures my feelings from that day.  Every day for the last year, we've just loved Lily more and more.  We've laughed, cried and saw God each and every day through her.  Our life hasn't been completely easy this year, but every day loving Lily is worth it.

Forever a Family

November 28, 2011

Finally in my arms!

Totally loving the cheap sunglasses!

Playing with BaBa, love her little hand on his arm.

Couldn't take our eyes off of our perfect little girl!

BamFam5...Finally!!!

Regretting the sunglass purchase, just a little :)

VERY thankful for the netbook that finally helped our sweet girl settle down a little....she grieved so hard!

First English word...Coke!!  It sure saved us on Gotcha Day!

She loved seeing pictures of herself and her friends...she still loves to see her friends' pictures and talk about them.

Holding on tight to HER computer while she checks out the Ipad.

Love how Reece is looking up at her...proud big brother.

My miracles, finally together...so blessed!

No words to describe how it felt to see these sweet faces together!!

The only place Lily would sleep while we were in Hohhot was in this crib...once we visited her SWI, we understood.  It's all she knew.

We were never far away...so thankful and overwhelmed to be her parents!

She fell asleep holding Baba's hand...the perfect ending to a perfect Gotcha Day.

Happy Gotcha Day, Lily Joy!!!