Tuesday, December 22, 2015

Send Me - Our Journey to our New Son

The world is a mess, falling apart.  
Senseless suffering.

There are so many things I can't do.  
I can't single-handedly fight a war or change political policy. 

But I refuse to believe I can't do anything. 
I won't give up hope that there is good in the world.

There are things we can do, today.
Today, there are children around the world who are alone. 
I can't change that for all, but I can change that for one.

"Then I heard the voice of the Lord saying, 'Whom shall I send? And who will go for us?' And I said, 'Here am I. Send me!'" (Isaiah 6:8)

So, here we go again. We're heading back to China!
Here's the story of our new son:

Through both processes to bring our girls home, we have changed, grown and stretched so much in terms of our faith.  We've learned that the children who need families are not defined by their special needs. They are human and they need love. That's all.

We've also learned things that we can't unlearn:

  • There are so many more boys waiting in China than girls. 
  • Boys are often overlooked for girls.  
  • Being a boy over the age of 2 or 3 is a special need in and of itself. 
  • When kids in China turn 14, they are no longer eligible for adoption and face a life of very uncertain terms.  Employment, education, social acceptance etc. are very unlikely for orphans who have aged out.

When we went to Maggie's orphanage, we saw things we can't unsee:
  •  Children everywhere, stuck in their cribs for most of the day.
  • Boys, girls, many, many special needs. 
  • They were starving for food, love, attention.
  • Few workers, few toys and little love.
  • It was dark, quiet and devastating.  
  • We also saw many people with special needs on the streets begging, because they were not given the opportunity to go to school, get a job and be treated equally.

The seed was planted in the back of our minds.

In the meantime, life was crazy, hectic, busy and overwhelming with 4 kids of varying needs.

As a member of many online adoptive groups, I see dozens of children listed every day who desperately need a family.  Countless times I would show Jeremy their faces, talk about their story and pray for them.  Some would stick in my mind for a while, but it's hard to remember them all.  Summer of 2014,  I saw the face of a little boy pop up. He caught my eye and I shared his pictures and video with Jeremy.  He melted our hearts, but after we saw how great his physical need was, we decided we couldn't handle all that he would need. 

Every so often, his face would pop up again and I couldn't get him off my mind. I tried advocating for him myself for a while. This past summer (2015), we requested his file to get more information. We had a leading doctor who specializes in his need go over his file (which he kindly did for free!) and got a better idea of his needs. But when we heard the word "wheelchair" we once again shut down any possibility of us bringing him home.  We just thought there was no way we could handle a child who was at times reliant on a wheelchair. We thought the decision was final, and continued to pray for  him.  

But something happened after we made that decision. I was sad. I felt lost. I couldn't explain it. Rationally in my mind, I knew our hands were full. I knew the decision was made. So I went through a period of trying to focus on the kids we had and enjoy our life.  And it was good for a while.

But God wasn't done yet. After a series of major "ah-ha" moments, we realized that we were limiting God's power. That we were making our decisions based on worldly beliefs instead of Godly beliefs.  

We couldn't get this one particular boy out of our mind for a reason. 
He stood out more than any other face we've seen-
because he's our son.

Previously we had focused on our fears:
  • His special need is rare and severe. 
  • He'll need surgeries, therapies, castings and extra help.
  • Our plates would be too full.  
  • We had no money for another adoption.

In time, though, we began to only see the Truths:
  • He is a treasured child of God.
  • He needs a family.
  • We are immensely blessed.
  • We have a lot of love to share.
  • God will equip us.

We only get one chance at this life.  I want to live it to the very fullest of God's potential. I want to live it with open, willing hands.  I want to be a part of God's larger than life plan.

Now we view this sweet face as our son. We love him and are racing through paperwork to bring him home as soon as possible.  He has already lived over 7 years without a family.  This time is different from our first two processes: because he waited for so long without a family, we were matched with him first  and are now starting from scratch on all the paperwork.

His needs do not define him nor will they break us. In fact,we know they'll strengthen us.  We are going to be immensely blessed by him joining our family, just as we were blessed by Allie and Maggie. 

We are beyond excited.  Join us on our journey to bringing Joey home!

 "Then I heard the voice of the Lord saying, 'Whom shall I send? And who will go for us?' And I said, 'Here am I. Send me!'" (Isaiah 6:8)

Send Me.

Tuesday, December 15, 2015

Our New Addition

We're thrilled to announce our newest addition, Joseph Zhao Yu, age 7.  We covet your prayers as we begin the paper chase to bring him home.


Wednesday, November 18, 2015

Affording Adoption & Medical Treatment - Things We've Learned

How to Help with Adoption Costs
Many people say the reason they can't adopt is because it costs too much.  Here's a few things we've learned along the way that have saved us a bundle!

1.  There are many, many grants available for families in the adoption process.  Yes, it takes a little more time and paperwork to apply, but so worth it!

2.  Adoption Tax Credit- http://tax-credit.adoption.com/

3.  Fundraising- there are so many wonderful ways to fund raise, from auctions to events to garage sales...people usually want to help!

Also, foster care is typically FREE. In fact, often foster care parents get paid to do the training and receive a month stipend to help offset the costs of raising the child.

How to Help with Medical Costs
Adopting a special needs child can come with the fear of covering long term medical costs. We figured we'd have a running bill with children's hospital forever! We have been shocked to discover that there are lots of options out there: financial assistance, grants and special insurance included.   Since Maggie has come home, she has had private speech therapy, more doctor's visits than we can count to the surgeon, dentist, geneticist, ENT, pediatrician, international adoption clinic etc., plus a major reconstructive surgery of her mouth.  How much of that have we paid for out of our pocket since she came home 2 years ago? ZERO. ZERO DOLLARS (with the exception of sick visits at the pediatrician). Here's how:

She qualifies for BCMH here in Ohio, which is Bureau for Children with Medical Handicaps. They have covered medical care related to her cleft.  http://www.odh.ohio.gov/odhPrograms/cmh/cwmh/bcmh1.aspx

She also received services from Help Me Grow, a program in our county for children under the age of 3 to help children who are developmentally delayed. It's FREE and they come to your home!! Many counties offer similar programs.

Our children's hospital has financial advocates who help families know what help is available.  Our advocate has been such a Godsend, she has helped us receive financial aid, along with various grants- not just for Maggie but all our kids.  Amazing!

We also have taken advantage of United Healthcare's Grant. You do NOT Have to be a United Healthcare member to take advantage (we're not!).  They have helped pay for medical bills for our kiddos, such as Ben's surgery to have his tonsils removed and Allie's occupational therapy.  Another Godsend!    http://www.uhccf.org/

Of course, some of these things are dependent on income, how many kids are in your family and whether you're eligible.  And services/programs vary by county and state.  But they are definitely worth looking into!

Sunday, November 15, 2015

Overlooked Special Need - Let's Hear it for the BOYS!

There are many, many children in China with special needs ranging from mild to severe.

But there's one need that's often very misunderstood and overlooked. 

Very simply, being a BOY is a very real, overlooked special need.  People often associate adopting from China with girls, but that's simply not the case anymore.  Now people are waiting months if not years for a baby girl, while there are thousands of boys that are ready and waiting for a family TODAY.  

Literally, call any Chinese adoption agency, tell them you are open to a boy and you could be matched immediately.

Adopting a Boy Video

Here's a great article with more info about adopting boys:

And here are just a few of the cuties waiting on our agency's Waiting Child list. Please visit CCAI's website for more information on each child.   http://ccaifamily.org/

I'm also happy to help!  jcoleman48@cinci.rr.com

Wednesday, November 11, 2015

Home 2 Years!

Two years ago today, Maggie Fei was placed in our arms.  

I can't get over how far she has come!!

Happy Gotcha Day, Maggie Fei!!

Maggie's Homecoming Video

Sunday, November 8, 2015

Orphan Sunday, Every Day: Hearts Cracking

Disclaimer: This is a mixed up mess of my random thoughts and things I've learned from our church, adoption support groups, songs, etc.  Any mistakes are purely my own, and anything that sounds remotely wise can be credited to people much smarter than me.

Orphan Sunday
Today is Orphan Sunday, again.  It's a day dear to my heart because it brings much needed and deserved attention to the children who need a family. Here's a great short video describing the purpose of the day:

Orphan Sunday video 

It's true that many kids have been adopted since Orphan Sunday last November. Hundreds, maybe thousands, thankfully.  But an equally important fact is that there are millions who were not adopted since last year. Millions still waiting, equally deserving. 

Breaking Hearts
I love the song "Hosanna" by Hillsong United.  An excerpt and link to full song: 

Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like You have loved me
Break my heart for what breaks Yours
Everything I am for Your Kingdom's cause
As I walk from earth into eternity

We so often say, "Oh that's so sad. That breaks my heart." But does it really? Does that breaking of our hearts lead to a change, a bold perseverance of doing something about it?  I've often prayed for hearts to soften towards adoption and foster care. But lately I've felt the Holy Spirit revising this. He doesn't just want our hearts to soften, but for them to CRACK WIDE OPEN to the point that we can't help but be moved to action.

Clear Direction

Adoption is hard. Often times we only see the "sunshine and rainbows" aspect of adoption, when the forever family is together in a smiley moment. But being adopted often means kids grieving the loss of their biological family.  They have likely been through things we can't imagine.  God wants us to join them in their brokenness and show them God's love. Meet them right where they are and just BE with them.  God is clear on what he wants from us:

‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me."  (Matthew 25:40)

 "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."  (James 1:27)

"I will not leave you as orphans. I will come to you. (John 14:18)
More Than a Number
It's easy to see the statistics about the orphans as merely numbers. But we must remember that behind every number is a face, a story, a human being that is just as loved by God as our biological children are. I often ask myself how I would feel if I was unable to care for my children and they were in an orphanage alone. I imagine my sweet boys left in a crib for hours a day with no one to smile at him, hug him, play with him. No one to show him that he MATTERS. That's the way to get my heart to just BREAK. If that were the case, I would be desperate for someone to see them and step out in faith for them.  For all the children needing families, there are unseen birth families behind them hoping desperately for someone to help their child.  As much as I love my children, God loves ALL CHILDREN.  And they deserve a family as much as our kids do.

Here's where it gets sticky.  I have heard people say many, many times that they would love to adopt if they could. But they want to provide a certain life for their children. A life that includes a certain level of cushion, comfort, travel, extra "stuff". Why do we have this viewpoint? This is a worldly view for sure, but not of God at all.  Those distractions and temptations of the world are not what we were put here for.  I promise you, you won't miss all those "extras" when you hold a child in your arms who was former an orphan and is now your son or daughter.

God wants us to be awake and alert to what Satan is doing in this world. And one of the things Satan does is convince us  that our comfort, control and security is more important than the people down the road or across the world.  Today and everyday, let's pray for hearts to crack, fears to fall and eyes to be opened wide. I pray for boldness to lift us into action. I pray for hands wide open and willing to do His will and His work.  We miss out on so much when we let our fears and ways of the world determine our steps.  But when we give Jesus the reigns and let faith carry us, miracles happen.

Proverbs 3:5-6  Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

Jesus didn't by-pass the needy. He came to them, walked and ate and lived alongside them.  He wants us to get dirty, to roll up our sleeves and jump in.  Take a risk with our time, our talents, our treasures.  And by sacrificing more of ourselves, we get to have a little taste of what it was like for Him.  So let's ask, are we filling ourselves up with the wrong things?  Big houses, busy schedules, vacations... these things trick us into thinking they should come first. But none of that lasts. But inviting a child into your family, that lasts forever.  

Jesus is enough. He will fill us daily and give us what we need. The more we give out, the more He'll refill us with the patience, wisdom, and endurance we need every day.   It's very true, none of us can adopt or foster on our own. But with God at the wheel, there's no end to what we can do. He is our source of power and will sustain us.  Taking this step means the world will look at us differently. Some won't understand what we're doing or why we're doing it. And that's okay, we'll be steadfast in our faith. (1 Corinthians 15:58)

I love that we have a God who stands up for the meek, the needy, the poor, the fatherless.  God always wins, and I always want to be on his team.  Saying we can't adopt because it's too hard, it's too expensive, I don't have time, I just couldn't do it... those aren't truths.  God's Truths are to "Love God and Love One Another" (Luke 10:27) and that's all we need to focus on. The rest will fall into place, because He is faithful and will do the work through us.


I dare us to be bold. I dare us to be counter-cultural. I dare us to make people think we are crazy by opening up our homes, our lives, our hearts.  That's the stuff that changes the world.  When we play it safe and stay in our comfort zone, life passes us by.   Let us be rooted in the Word and not the World. When we read the Word, believe the Word and then LIVE the Word, God will redeem.  And we can be a part of it!

Holy Spirit, stir in us. Make us start to feel uncomfortable. Call us to do your work despite our fears and excuses.  Help us to say yes to God and no to the norm.  Help us to move forward even when we're scared to death and we don't know what we're doing.  Make us brave.

  "... for it is God who works in you to will and to act in order to fulfill His good purpose."  Philippians 2:13

What is in the back of your mind? What is the Holy Spirit whispering (or shouting!) to you?  What "crazy" idea is God waiting for you to say yes to?  Instead of over-analyzing it, if you HEAR it,  then TRUST it, and MOVE.

Front Seat
I can tell you from experience - it will be hard. Harder than you can ever imagine. And it probably won't turn out the way you had planned. But it will be good and rich and satisfying to lean into God in those times and be carried through by Him. And there is nothing better than having a front seat to God's amazing power of redemption for that little boy or girl that you said yes to!

" For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home."  (Matthew 25:35)

"This calls for patient endurance on the part of the people of God who keep his commands and remain faithful to Jesus."  (Revelations 14:12)

To the orphans
You are not alone. You are a treasured child of God and He sees you and He loves you.   "But you, God, see the trouble of the afflicted; you consider their grief and take it in hand. The victims commit themselves to you; you are the helper of the fatherless."  (Psalm 10:14)

Bottom Line
It's not about MY strength, MY control, MY plan, MY abilities, MY desires. Frankly, it's not about me at all.  It's all about letting God do His thing through me.  And as one of our pastor's says "When I think something can't be done, I'm short-changing God's power." (David Smith, Northstar Church)

 "Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God."  (Hebrews 12:1-2)
If you feel moved to foster or adopt, I'd love to help you get started.

Kings and Queens by Audio Adrenaline

Kings and Queens lyrics:  
Little hands, shoeless feet
Lonely eyes looking back at me
Will we leave behind the innocent to grieve?
On their own, on the run
When their lives have only begun
These could be our daughters and our sons
And just like a drum I can hear their hearts beating
I know my God won't let them be defeated
Every child has a dream to belong and be loved
Boys become kings, girls will be queens
Wrapped in Your majesty
When we love, when we love the least of these
Then they will be brave and free
Shout Your name in victory
When we love, when we love the least of these
When we love the least of these
Break our hearts once again
Help us to remember when
We were only children hoping for a friend
Won't you look around
These are the lives that the world has forgotten
Waiting for doors of our hearts and our homes to open
If not us, who will be like Jesus
To the least of these
If not us tell me who will be like Jesus
Like Jesus to the least of these
Boys become kings, girls will be queens
Wrapped in your majesty
When we love, when we love the least of these
Then they will be brave and free shout your name in victory
We will love we will love the least of these
We will love the least of these (Repeat)

Friday, November 6, 2015

We've Been Quiet

I've been quiet on my blog for quite a while.  I've had a lot of things stirring in me the past year or so and I've been trying to sort them out.  I  struggle to continue to put pictures of my family and our daily activities on the blog when there are children who are fatherless and forgotten all around the world. It's a bitterness I struggle with every day. Why are my kids so lucky? Why are there millions of others who are not? What am I supposed to do about that?

We needed time and change.  We had been feeling an urge to change churches, which was a really big deal for us.  We couldn't explain it, but finally gave into the urge in January. Now looking back over the past year, I can say "Ooooohhhhh, now I get it!" Yep, God knew what he was doing when He called us to our new church. It's been a fresh start for us, a re-awakening that we didn't even know we needed.  Our new church is also so close now that we walk or bike most Sundays, and the kids go to church with friends from school. It's pretty neat and we're feeling more connected to the community we live in, and we're very thankful for that.

We also needed time.  For the past 10 years, Jeremy and I have either been having babies or bringing home babies.  Ben was 15 months old when I got pregnant with Sam. Sam was 5 months old when we started the process to bring Allie home. Allie was not quite 2 when we started Maggie's process.  We were always planning for that next baby, which kept us busy to say the least.  But I like busy, I like projects, to-do lists, things I can accomplish.

But after Maggie came home, we clearly felt God telling us to STOP.  Not necessarily stop forever, but stop for now. And that was really hard for me, not because I wanted another baby- in fact I was pretty sure I DIDN'T! - but because it's so hard for me to be still.  To just be where I am, fully present with no big plan to work on other than regular life.  I get bored and restless. But I knew that I had to restrain and be more comfortable in a quiet place.  To hold back on dreaming about that next baby or some other next big thing in our lives.  It's hard, but also really good for me.  I've enjoyed more one-on-one time with each kid, more time to read, take naps, etc.  I continue to have to be very purposeful in that surrender.

Honestly, I went to that place of surrender kicking and screaming at first. I would lay awake at night wondering why we had to stop, there's so much more that could be done. Were we supposed to adopt again? Were we supposed to move? Was I supposed to go back to work?  My mind was all over the place for a while, but I kept hearing God telling me to just be still.

Looking back, amazing things have come from that surrendering.  I now have 4 mornings a week to myself while all 4 kiddos are at school.  I am giddy to have a little bit of time to myself for the first time as a parent.   We've also been able to address some needs of our kiddos and are seeing some positive progress.  It might sound silly, but addressing some ongoing problems and getting help for them feels really good.

Allie was diagnosed with sensory issues, which explains a lot about her behavior struggles. We spent the summer going to a wonderful Occupational Therapist who helped us help her to cope with daily life and her emotions better. We also spent time with a fantastic counselor who helped us get a better window into Allie's broken heart and how we can help mend it a little bit more. We're also praying like never before for her. And boy does it feel good to report that the progress she has made is amazing! She went from a child who cried at the drop of a hat over nothing to a child who is more joyful and content. To be clear, she's not "fixed", those struggles may never be completely gone.  I think she'll probably always wrestle with all that she has been through, but now we're much more equipped to handle that and help her.

***Side Funny:  We've always been super open with both our girls about their adoption stories. Allie can repeat her story verbatim. But yesterday she told me that she was born in an airport in Michigan and is telling her friends that fact. Um, no, my dear. You were born in Korea and you were escorted home to an airport in Michigan. :) :) :)  Funny, but clearly demonstrates her lack of true understanding of her story.

Maggie's speech delay was becoming more alarming by the day. There was just very little progress and by the time she was 3, she had the speech skills of maybe a 15 month old (that's probably being generous). But we're thrilled to report that she qualified for speech services at our local preschool (same building where Allie attends kindergarten) and is on an IEP (Individualized Education Plan) that will better address her needs.  She is even riding the bus ( oh yes she is and she LOVES it ) and is finally, finally starting to show some steps of progress.  It's going to be a long, slow process for her, but we're so thankful for the peace we've been give knowing she's in the right place.  She has literally come alive since starting school 3 weeks ago, so independent and confident. Comparing that to the terrified baby in the orphanage crib 2 years ago and WOW.  God is so good.

So much focus has been on the girls in the past few years and their very big needs.  Our boys are affected by that of course, but have mostly handled it all very well.  Having the time to slow down, though, and just enjoy them has been precious.  They are getting to the age that we are hesitating to share too many details about their private lives. They deserve privacy.  So while I'll refrain from going into their specific details, I'll say that there are some things they struggle with in their lives too and we are of course 1000% behind them every day.  They are blossoming in their own ways and I'm so lucky to be their mom.

Thinking back on all of that, I totally get why God told us to not consider another adoption or any other big "thing" in our lives since Maggie came home. We had a whole lotta big things going on right inside our home.  Those big things aren't going to just disappear, we'll always have to deal with them, but now I feel like we are getting a better hold on things. It's been so amazing to see prayers answers and burdens lifted.  We also needed time for ourselves, both in our marriage and personally.  Frankly, we needed to rest!

I'm chuckling to call where we are "restful" because every day is insanity with 4 young kiddos.  Let's be real -someone is always sick, hurt, crying, pooping, hungry or mad. There is always a mess and always someone who needs something.  We are exhausted by 8pm.  But it's restful in comparison to adoption paperwork, trip to China, cleft surgery,etc., that's for sure!  And we wouldn't trade any of it.

I don't know where we're going from here, only God knows that. What we're sure about is we want to live our lives according to God's will for us. I don't know if He'll lead us to other "big" places or if this place of "rest" is our new normal. Either way, we're okay with it.  Regardless, we're very grateful for the healing that's happening in our house, for the peace coming with it, and for this sweet time with our babies.

Saturday, May 2, 2015

A Family for Shawn

There are literally MILLIONS of orphans in the world. Millions.

Being in the adoption community means I'm part of groups online 
that advocate for some of the kiddos, trying to find their forever families.  
I literally see dozens of faces every day, some year after year, waiting for a family.  
Every single one of them deserve a family. 
It's hard to see, but I'm determined not to ignore the fact that they are there.
We need to see these faces and know their names.
We need to pray for them, advocate for them and help them find their forever families.

Sometimes a certain face pops out at me and I keep coming back to it.  
One of those little faces is Shawn.  He has been waiting for a family for so long. 

This is what was written about him by someone who spent time with him in China and has been advocating for him for a long time:

 Shawn was born in July 2008 and his special need is post-operative congenital Arthrogryposis.

Shawn is a very sweet and very capable little boy who can walk, sit, raise his arm to grab a toy above his head and bend over to pick things up.  I also observed him reaching over to pull on a little friends ear!!!  I honestly didn’t think I would have a favorite when I went to China but this little guy stole my heart within minutes…so much so that I asked to see him again before I left on our last day…  If I could’ve smuggled one child home with me…well it would’ve been him!
Shawn lives with a foster family in an apartment within the orphanage.  He is receiving his education through Half The Sky’s Little Sister program and is described as an optimistic and active child.  He likes to listen to stories read by the teacher and has good language skills.  He understands instructions quickly and expresses his thoughts well.  Sometimes he thinks and explores difficult questions as if he is a “little teacher.”  Shawn performs well in class, shares well and likes to play games with other children.  “He likes to play with the bowling ball and electronic piano.  He enjoys coloring and likes to dance with the help of the teacher. He is kind and will comfort others when they are sad.”

Please click on this link to see the adorable videos of Shawn and find links for more information.  
There is contact information in that link, 
or please feel free to contact me and I can put you in touch with the right person.

 Could you be his family? Do you know someone who could?  
Please share this information and pray for him.  He would be such a blessing to any family!

Monday, April 13, 2015

Surgeon, Speech & School...

Maggie & I saw her plastic surgeon and the genetics team this morning at Children's Hospital for a follow-up visit.  They are pleased with her growth and development and we got some more information on what's to come.  
(Side note: at one point there were SEVEN people in our exam room, plus Maggie and I.  The surgeon and his people and the genetics team.  Two of them were madly typing everything that was discussed on computers.  It's a little crazy/surreal at these appointments!  If only we could throw in the ENT, dentist & pediatrician at the same time, we'd have a lot less appointments!)

Surgically, we're hoping to not have to do anymore surgeries for several more years. Sometime around the age of 5-7 years, she'll have a pretty major surgery, where they'll do a bone graft in her upper gum to create a gumline where she has none.  There's a chance that at that time they may also do some corrections to her palate to better faciliate speech, as well as some touch-ups to her nose/lip and possibly some dental work as well.  Hopefully until then, she won't need anything surgically other than possibly ear tubes again.  So we don't have to see the surgeon or the genetics team again until next spring, yippee!!

Our one main concern is her speech. She has definitely made some progress since she started speech therapy in the fall. At that time she really didn't talk or sign at all, and didn't really try either. After 7 months of therapy, she does TRY to talk and has a huge amount of signs she uses. 

But she still has very limited speech sounds. She only uses 2 consonant sounds without prompting (m and g), a couple more she can do with prompting (b, h) and the rest she can't do at all. She speaks in mostly open mouth vowel sounds.  The surgeon says it seems like she basically hasn't yet learned how to use her new palate, even though it's been over a year since the surgery.  

Looking at the big picture, she really should be making more speech progress at this point, even with the cleft lip and palate. Although she is not yet officially diagnosed, there's a general consensus that she most likely has a speech disorder called apraxia.

There are a range of speech disorders, ranging from very minor (such as a child has trouble pronouncing a particular sound) to much more severe. From what I understand, apraxia is on the more serious side of speech disorders.  It's basically described as her brain knows what she wants to say, but it's not connecting that message with her mouth to say it.  It's not related to the cleft at all; she basically has some speech issues related to her cleft, and in addition to that, she probably also has a completely unrelated speech disorder that is isolated from the fact that she has a cleft.  They typically don't diagnose this until around age 3, so we have some time still before it's definite, but the signs are there.

Apraxia is treated with speech therapy, which she is already in. What this would mean, though, is that she'll most likely need more intense speech therapy long term, rather than a quick fix.  She'll probably qualify for an IEP (Individaulized Education Plan) and receive special services from our public preschool. She'll be eligible for that as early as her 3rd birthday this fall.

That brings us to big decisions we'll have to make regarding preschool for her. Our public preschool is wonderful (Allie goes there and we love it!) but it would require Mags to go 4 afternoons and be gone for 4 hours each time, with bus transportation.  That's a lot to ask of a very young 3 year old, so we'll have some big decisions ahead about whether or not we want to take that path right away, or choose a private preschool for this school year in which she could go just a couple mornings for a couple hours.  

The idea of her having apraxia scares me.  I know it's not a huge deal in the grand scheme of life, but I'm afraid of what her life could look like without having normal speech. Will she be able to make friends? Will she be able to communicate her needs, thoughts, dreams? Just tell me about her day?  Will she be able to read me a book when she gets older?  Some kids with apraxia never obtain normal speech.  However, from what we've been told, we're hopeful that she will attain normal speech, it'll just take her longer than the norm to get there.

So if you could pray with us that she starts to make more speech progress, and that we make the right decisions for her regarding school in the next few months, we would really appreciate it.

We're so thankful that otherwise she's doing so well.  Our fears we had a few months ago about her not even making an effort to sign or talk, or not being able to do some cognitive tasks such as identify pictures have completely gone away. It's clear now that she's super smart and understands what we're saying and what's asked of her.  (Whether or not she cooperates is another matter entirely... she is VERY TWO right now!)  I'm so thankful for that progress and am very hopeful that we'll see more huge gains in these next 6 months!

Can you name these tunes? She sings ALL THE TIME (although if she sees the camera on her, she stops singing to say "CHEESE!" so recording her from behind worked better). You can hear how she sings the tune without pronouncing consonants.  She basically doesn't use the roof of her mouth or teeth at all for speech.

Not sure why this one is sideways...

Such a 2 year old... she gets into EVERYTHING!  
Here I found her licking a rubber stamp. She also colored her white doggy with purple marker.

Truly 2 peas in a pod.

 She's so tiny! Her 24 months shorts kept falling down around her ankles. 
She kept coming up to me and signing "help".  Poor girl. :)

Some selfie fun at a doctor's appointment.
This girl is all about facial expressions.

Chatting on her phone while we waited at the hospital this morning.

Sunday, April 12, 2015

My First Baby is NINE

I don't know how it's possible, but my sweet Benny turned NINE on Friday.  

He has changed so much and is starting to seem so much older and more mature.  

I just wish time would slow down, but it's also pretty cool to see the awesome person he's becoming!

Wednesday, April 8, 2015

Two and a Half

Two and a half years.

Always my baby, but not really a baby anymore.

The picture below from a year ago shocked me. Her face has healed, relaxed and changed so much!

We see each person on her "team" who are part of her care every 6 months.  (Her team includes the pediatrician, ENT, dentist, plastic surgeon and genetics - all separate appointments.)  

We saw the pediatrician today for a growth check.  She is still tiny, still about the 5th percentile in weight and 3rd in height.  But she's growing, so that's good!

We saw the ENT last week, her tubes are still in place and looking good.

Next week we'll see the surgeon & genetics (who also keep track of her growth and development and help coordinate her care).  Next month we'll see the dentist.

18 months

2.5 years!