Join Me…Random Requests

There seems to always be a million things I’d like to write about/share, but not enough time to do so.  In an effort to toss out a few of the random things on my mind (mainly prayer requests that I’d love for you to join me in), I’m going to simply make a list:

• PLEASE support my amazing friend, Adeye, with their most recent adoption.  They’re adopting a 14-year-old girl, Faith, from Bulgaria who only weighs 14 pounds.  Yep, that’s correct.  Click HERE to read about the situation on Adeye’s blog.  There are TONS of awesome prizes you can win by donating and sharing her story.  You might remember that Adeye is my friend who has helped raise HUGE ransoms for so many helpless orphans.  She’s been an incredible advocate for those who have no voice.  It’s our turn to rally around Adeye to pour out blessings upon this woman of God who normally rallies around everyone else to heap blessings upon them.
• Another family I’d LOVE for you all to support is my friend Summer.  She’s the one who took pictures of our newest sons (Conner and Cooper) in Dec. 2011 while she was in Ukraine adopting from the same orphanage that our boys were in.  Yep, she just got home with her son, Gavin (who also has Down syndrome and was in the exact same groupa as our boys), and God has called her back to the same orphanage to adopt a special princess (also with Down syndrome), Lyla.  This is quite an unbelievable fairy tale.  To read about it, click HERE.  You won’t be disappointed, and you might just win yourself an iPad or numerous other prizes. 
• Please, please, please pray that both Faith and Lyla will have their ransoms raised QUICKLY.  Both girls are hanging by a thread.  Share their story (you can enter their giveaways just by sharing their stories!), donate, and don’t stop praying!!!
• Please pray for Iron Man Rowan (age 5), the son of my beloved friend, Carrie.  If you don’t know how God connected us to them, go to the sidebar of our blog and type “Rowan” in the search this blog box.  There’s lots of miraculous, hair-raising stories scattered throughout our blog about Rowan and Carrie.  Rowan really needs your prayers because he’s in PICU right now fighting for his life.  Again.
• Please also pray for my friend Nicole and her foster son.  I’ve asked for prayers for them before, as it is Nicole’s desire to adopt her foster son.  The custody trial seems to be never-ending.  I testified a couple of weeks ago, and I’m sworn under oath now not to discuss the case, but it is public record that the case is continuing over the next few weeks.  Please pray for Nicole to be filled with His peace that passes all understanding.
• We’re coming up on Chrissie’s Homegoing anniversary of two years.  Rip my heart out.  Chrissie entered the hospital April 19, 2010, for massive open-heart surgery, and she never left the hospital.    Chrissie went to eternally dance with Jesus May 19, 2010. 
• Last year, during the anniversary of Chrissie’s 31-day battle, I hosted fundraisers for 4 different families, plus we held a big benefit in memory of Chrissie.  We decided this year to hold the benefit near Chrissie’s birthday (October), so I’m praying about what to do on the blog in memory of Chrissie as we walk through the second anniversary of Chrissie’s battle.  Suggestions?  I’m considering advocating for fundraising families again, but it’s a lot of work, and I’m not sure I’ll have the time needed to do this.  If you are a fundraising family (or if you have a Chrissie-related story to share) and would like to be featured on our blog sometime between April 19-May 19, please leave a comment (preferred method bc I can keep up with these more easily) or email me at BossYourHeart [at] gmail [dot] com.  I’m praying about how to walk through this anniversary again, keeping Chrissie’s legacy alive, so I very much appreciate your feedback.
• I’ve had lots of requests for the original Boss Your Heart t-shirt (see photo below), but we’re sold out.  I’ve entertained the idea of doing another t-shirt fundraiser with the original shirt during this second anniversary of Chrissie’s battle and Homegoing, but it requires SO.MUCH.WORK., I’m not sure I’ll be able to devote the required time to it.  Please do me a favor and leave a comment (preferred method) or email me if you would like to order a shirt.  Let me know if you’d like to have a different color option or stick with the original.  If I see there’s still enough interest, I’ll try to pull it together.

Thank you for joining me in prayer for the variety of requests I’ve shared today.  I will never be able to adequately express how grateful I am for your support, and I know the families I mentioned today are grateful as well. 

Yes, I Hear What You Hear…Sort Of :-)

Conner had his hearing re-checked yesterday, and we’re happy to announce that his hearing has improved!!!  Apparently he’s had fluid behind his eardrum for an unknown period of time (could have been his whole life), which has made it hard for Conner to hear properly.  His eardrum had very little movement almost 3 weeks ago when the ENT and audiologist examined him.  After his course of antibiotics to treat the fluid, his eardrum is already showing more movement (less fluid).  Praise God!

 

While Conner’s hearing is not in the normal range (yet!), the ENT is hopeful that within the next six months, it will be, without having to get tubes!  YIPPEE!  I just love seeing such powerful redemption of our Jehovah Rapha, one miracle after another.  He surely has big things in store for both Conner and Cooper!

 

PS  Can you believe the chubby cheeks Mr. Conner has developed in just FIVE short weeks of being home?!?!  I tell ya, Jehovah Rapha is working rapidly to restore life to these boys!!!

family

we thank God for our blessings

we pray together

we work together

we learn together

we encourage one another

we make mistakes

we say I’m sorry

we forgive

we give hugs

we play hard

we laugh often

we love unconditionally

WE PRAISE GOD FOR MAKING US A FAMILY

Grief and Gratefulness

 

On this Easter weekend, I am missing our precious princess.  I miss her each and every day, but there are times when I miss her extra heavily.  Easter seems to be one of those miss-ya-bunches seasons for me. 

 

I truly do not know how God was able to watch His Son die for us, how He was able to willingly sacrifice His One and Only Son.  Man, God loves us so much more than we can fathom.  Losing a child is HARD, hard, HaRd, watching him/her die is even harder.  Jesus was God’s child, whom He loved dearly, but He loved us so much that He willingly gave up His Son in order that we would have eternal life.  Now that’s love.

I feel so blessed that God shared Chrissie with our family, even if it was only for 7 months.  I still feel like she was knit in my very own womb, that I didn’t miss a day of her life, and that her life and death were both worth it.  I can 100% guarantee that not a day will ever pass in my life on this earth that I will not miss Chrissie. So much joy from such a tiny treasure.

 

Grateful for the gift of Chrissie, and the legacy she left behind.  Grateful for the gift of Jesus Christ, and the legacy He left behind.  Grateful to celebrate the resurrection of our Savior.  Grateful for His gift of eternal life.  My heart overflows with gratitude, sprinkled with sorrow, as we walk through Easter weekend.

 

Love and miss you, Princess Chrissie!

Selah’s and Cooper’s Exciting News

Selah and Cooper have some exciting news to share! 

Let’s start with Cooper:

Daddy and Mattie took Cooper to the peds orthopedist Wednesday to get Cooper’s new casts, the second set of six in the Ponseti method of repairing his bilateral clubbed feet.  The doctor had been slightly concerned that this method might not be effective for Cooper since his feet fall in the severe category and he’s almost seven years old.

But our God is such a mighty healing God, able to do all things, in all circumstances.  The doctor said Cooper’s feet have already begun adjusting, after just one week, which indicates a strong possibility that the Ponseti method of repair WILL work for Cooper!!!  Hallelujah!

We’d like to share Cooper’s excitement with you:

And now it’s Selah’s turn to share:

Yesterday, Selah had her 7-month-post-op check up with her skull reconstructive doctor and her neurosurgeon.  On August 30, 2011, Selah underwent a MAJOR skull reconstructive procedure because her brain didn’t have adequate/ideal space to grow.  In order to give Selah the best chance of brain development, the specialists recommended we allow them to reconstruct Selah’s severely misshapen head. 

Last summer, the specialists explained to us that it would be too difficult to repair Selah’s entire skull due to its severity of repair.  (Selah was born with 3 pounds of fluid in her skull, making it the largest skull the specialists had ever seen.  Then the fluid was removed via shunt, and her skull literally shrunk like a deflating balloon, into a flat, oblong, badly misshapen skull.)  We agreed to the medically necessary repairs for Selah’s skull, understanding it would take two surgeries to complete the process of repair.

Selah at 7 weeks of age, after her skull had shrunk, leaving it flattened and oblong, to the point where she wasn’t able to lie on her back with her head facing forward (she had to always turn her head to the side because her skull was so long, so huge, and so heavy). 

Well, yesterday’s visit revealed some super exciting news!  After the specialists reviewed the results of Selah’s sedated brain and skull MRI and special CT scans, they decided to further delay the second reconstructive surgery, with hopes that she will not need it at all!!!  Hallelujah and GLORY to our mighty God!!!

Here is Selah at age 17 months with her head in basically the same position that the above photo was taken of her at age 7 weeks, about six months after she had the back of her skull repaired.  Special note about this photo:  Selah is wearing the outfit that we originally purchased as Chrissie’s “come home from the hospital after open-heart surgery” outfit.  Chrissie never got to wear this outfit since she went to live with Jesus instead of coming home to our house from the hospital.  Chrissie was 4 years 7 months at the time of her death, and this outfit would have fit her perfectly.  It’s hard to believe it also fits Selah perfectly, at age 17 months.  Selah is BIG, Chrissie was TINY.

Here’s the deal:  We will wait and watch and pray for the remainder (front section) of Selah’s skull to repair itself.  Things that could happen that would make this second surgery medically necessary would be shunt malfunctions, brain complications, lack of development/meeting milestones, headaches/pressure, etc.  If Selah has any complications, we will need to do the second skull reconstructive surgery.  If she doesn’t have complications, we’ll reevaluate in one year!  Yippee!!!



I think KNOW we’re as excited about this news as Selah was about digging into Sawyer’s b-day cake!  As you can see in the photo above, Selah’s skull is still narrow at her temples.  The scans show that Selah’s skull is much narrower than it should be from her temples up to the center of her skull, from ear to ear.  This is the area that would have been the second phase of her skull reconstruction.

The brain MRI showed that Selah’s brain doesn’t have as much space up front as they’d prefer, BUT because Selah is developing so miraculously, without shunt malfunctions and/or brain complications, they’re choosing to take the wait and see approach.  Incredible.

Please pray that Selah’s skull and brain would be fully repaired by our Jehovah Rapha (our healing God).  Selah is already an incredible testimony of God’s miracles, and this further healing would give even more glory to God.  None of the medical professionals can believe, until they see with their own eyes and hear with their own ears, that Selah is developing like a typical child.  The specialists are completely blown away when they see Selah doing things like climbing into the chair and sitting down by herself, climbing up onto the exam table by herself at age 18 months, walking, running, even jumping!  Then they hear her say words like, “dog, cat, horsie, go, bye-bye, yucky, hi, hello, Daddy, Momma, etc.”, and then they see her sign things like, “more eat” or “more water”, and they literally are stunned by Selah’s development.

This is completely unheard of, literally, with her condition at birth.  I need to do a separate post on this absolute miracle.  It’s such a God thing that the name He gave us for this miracle baby girl is “Selah”, which means in the original Greek translation:  “so every eye can see and every ear can hear”.  Only God.  What an incredible testimony He’s building for Selah, and I pray her story will be an encouragement for everyone who might be hesitant to adopt a child with a brain abnormality and/or hydrocephalus, as well as an encouragement for moms who are given a similar diagnosis for their baby while in utero.  I learned that close to 99% of moms whose babies are given the diagnosis of "agenesis of corpus callosum" (missing the part of the brain that connects the right and left hemispheres) in utero end up aborting them, at the doctor’s advice.  I cannot even imagine Selah being killed because the doctors felt she wouldn’t have a life worth living.  SOOOOOOOO wrong, Selah is LIVING proof.

Selah says, “What do you think about that, Conner?”  I think the docs don’t have a clue about our Jehovah Rapha!!!  Oh, please won’t you look at me and tell me what you think!”

Happy 12th B-day, Buckshot!

Wow, it’s hard to believe Sawyer (AKA “Buckshot”) is 12-years-old today!!!  He’s our baby biological kiddo, but he’s growing into a man all too quickly.

 

 

As I’ve said before about Sawyer, he’s our tender warrior.  He is very much like his daddy.   He brings lots of love and laughter to our family, but one of the unique things about Sawyer is how awesome he is with kids.  Buckshot is able to have fun with just about anyone, anytime, doing anything, and he’s comfortable with kids of all ages and abilities.  He doesn’t let anything scare him away! 

 

We’ll often find Sawyer kayaking on our pond with 2-3 little ones in tow, then challenging everyone to a swim in the murky waters, trying to see who can touch the bottom.  Buckshot’s also an incredible team roper, and he’s able to both head and heel, which is a special talent not many are able to do.

 

Sawyer’s an awesome young man who I feel God has big plans for.  We feel so very blessed God chose to share him with us.  Happy 12th birthday, Buckshot!

 

Sawyer celebrated his birthday last Sunday at Genesis Ranch (where we attend church) with an airsoft party.  (Airsoft is a type of gun that shoots plastic pellets.)  I made him a camo dairy-free cake (Sawyer has severe food allergies), while the other guests enjoyed cupcakes.  Buckshot and his buddies (again, all ages and abilities) had a blast!  Here are some pics from his celebration…don’t miss the shots of Selah below!

 

Selah is also allergic to dairy, so she helped herself to Sawyer’s yummy camo cake.  Only thing is, the camo icing didn’t lend itself well to a little princess, but she didn’t seem to mind a bit.

Measurements

Please join us in praising our Jehovah Rapha (our healing God) for His mighty work in Conner’s life.  Here are Conner’s measurements…proof of what God can do in JUST ONE MONTH!!!

 

The first measurement is from Sunday, March 4, 2012.  The second measurement is from Sunday, April 1, 2012.  That’s exactly four weeks of Conner being home.

 

Length (head to heel)

• 32 1/4”
• 34”

 

Length (hip to heel)

• 15”
• 16”

 

Length (shoulder to wrist)

• 10”
• 10 1/2”

 

Waist circumference

• 14”
• 17”

 

Wrist circumference

• 3 1/2”
• 4”

 

Ankle circumference

• 4”
• 4 1/2”

 

Upper thigh circumference

• 7”
• 8”

 

Head circumference

• 18”
• 18”

 

 

The only measurement that didn’t increase in the last month is Conner’s head circumference.  I’m not positive why that is, but every other measurement has increased more than I ever imagined possible in just one month’s time!!!

 

PRAISE GOD!!!  May He receive ALL the glory!!!