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Glad We Didn’t Know: Adopting a Child with Von Willebrand Disease

March 22, 2017 0 Comments

For four years I prayed that my husband would say yes to adopting again from China. And out of the blue he mentioned – in passing – that he felt like we had another child waiting for us.

Within 24 hours, a friend had sent me a photo of a four year old little girl who had been waiting a very long time. This precious little girl was 28 days older than our first daughter, which I did not know when I first saw her face.

But I knew she was our daughter.

The agency that had her file had a policy against adopting out of birth order and artificial twinning. And she had a heart condition, which made my husband very nervous…..

But she was ours, I just knew it.

Fast forward to ten months later and we were finally meeting her, our Alexis. She was very tiny at five years old, she weighed only 21 pounds, and she was so very pale. When we met her, we were given a packet of iron pills. And we were told she was anemic, that she bruised easily, and she would have a bloody nose quite frequently.

The orphanage staff mentioned that her heart condition was not an issue, and basically told us she was pretty healthy. I knew this was not the case just by looking at her. Our Alexis could barely walk and was in a lot of pain.

Once we arrived home, her pediatrician took her off the iron pills so that she could be tested to be sure she was really anemic. Her blood work did not show anemia, but there were red flags of concern. So off to the hematologist and oncologist we went.

Within a month of being home, Alexis ended up in Pediatric Intensive Care due to a significant issue with her lower aorta. During this time, she was diagnosed with Von Willebrand disease, as well as Takayasu’s arteritis‎ (I’ll save that disease for another post).



Von Willebrand disease is a lifelong bleeding disorder in which your blood doesn’t clot well. Most people with this condition inherited it from a parent. They have a faulty gene that causes problems with a protein important to the blood-clotting process.

What this means for Alexis is that she has to have infusions of factor prior to any surgery or invasive treatment. It also means that she will need medication occasionally even for a baby tooth that falls out. These include infusions of prepared doses of concentrated blood-clotting factors containing Von Willebrand factor and factor VIII.

Von Willebrand disease has not stopped Alexis from doing the things she loves and she even is training in Shaolin Wing Chun, which is Chinese based Kung Fu (think Bruce Lee). When she begins sparring, we will have to carefully watch her for bleeding, mainly internal, but even that can be treated with factor.



Unfortunately, because she has Von Willebrand, it has made it harder to treat the Takayasu’s and congenital heart disease (which is still an issue) because she has to take blood thinners for the rest of her life. If it was not for her other health issues, Von Willebrand would not be a big deal.

I am thankful that all of this information was not in her file because if it had been, she would not have been our daughter. We would have been too terrified of the unknowns.

If you have any questions about Von Willebrand disease, Takayasu’s arteritis, or congenital heart disease, please feel free to email me.



– guest post by Kendra

Medical Mama-Ness: Sorrowful Yet Always Rejoicing

March 21, 2017 0 Comments

One foot here, another foot there.  

How we walk — it’s a bit of a balancing act, isn’t it? A bit of an awkward dance in a minefield.

Jolting, yet fluid. Slippery, yet steady. Unexpected potholes, but given with Sovereign purpose.

The sun rose with a crying little girl in my lap, her alligator tears a result of the effects of her new seizure medication. And as I comforted her, another one of our sweet little bundles of joy came around the corner with a quiet stream of tears running down her cheeks and a pouty lip bulging out where her big smile usually resides. Her scar was itchy. Well, one of her scars — the one that spans the length of her chest, there from surgeries which have helped sustain, but not fully heal, her broken heart.


I gathered up the alligator-teared girl in my arms and reached for the scar cream to rub on another daughter’s chest. As I squirted the cream out of the tube, my glance shifted, and I witnessed my own scars — those reminders of a horribly tragic accident last year and the hard days that have followed it.
 
We walk hardness and we walk hope. We walk in the things of ordinary days and sunrises and we walk in the things of long silences and dark nights. We walk in excursions to the park. We walk in countless trips to the operating room. We walk in bows and bubbles and childhood joys. We walk in catheterizations and feeding tubes and electrodes stuck to chests.

We walk in the recognition that our lives look nothing like we thought they would.



The becoming of a mama and the becoming of a medical mama happened in the same instant for me.

The sheer joy and magnificent anticipation of looking into little eyes that you were made to love. The agony and anxiety of fragile and foggy futures and a journey to be forged and bonds to be formed. They mingle — the sheer joy and utter agony, in all the strangest and most glorious of ways.

Hospitals. Therapies. Fatigue. Despair. Endurance. Growth. Perspective. Lament.

We walk here. In the sorrowful, yet always rejoicing. And yet we long for There, where weeping is no more. And while we journey, part of being a medical mama is living this conundrum. Such deep joys to watch them grow, such anguish to see them struggle.

But we are with them. They are not doing this alone and without. And we are so much better because they are with us. And therein lies the treasure.

And His very name testifies that He is with us — we are not doing this alone and without. And we are so much better because He is with us. And we are so much better because He gave us each other. And therein lies the treasure.

These scars, the ones easily seen and the ones well-disguised — He uses every scar to remind that He is the One who writes our stories, and He is the One who heals every wound.

God’s love is meteoric,
his loyalty astronomic,
His purpose titanic,
his verdicts oceanic.
Yet in His largeness
nothing gets lost;
Not a man, not a mouse
slips through the cracks.

– Psalm 36:5-6, The Message

This mama-ness and this medical mama-ness — somehow, the hardness and the ease, the grief and the joy all bear testimony to one true and lasting thing that gives breath and life to all the places we walk: grace.

Underneath are the Everlasting Arms.
HillaryNHBOSig

Waiting for a Family: Wallace

March 20, 2017 0 Comments

Three-year-old Wallace couldn’t be cuter! He started rehabilitation training shortly after being found as an approximately one-month-old baby. Wallace loves to share and play with other children. He is shy around strangers, but opens up once comfortable. Wallace loves to be praised and enjoys spending time with familiar people. His file diagnoses him as having a limb deformity, which appears to be arthrogryposis.



He learned how to use his hips and arms instead of pointing to get what he wanted, such as snacks, toys, etc. He has always loved watching the other children play with blocks and wished he could play with them too. Wallace doesn’t let his special need completely stop him though- he is said to be very clever. He has learned how to help close doors and likes calling the names of the other children who are in the same room as him. Wallace is a happy and healthy little boy who isn’t going to let arthrogryposis hold him back. What a gift he will be to a very lucky family- could it be yours?



March 2017 Written Update:

Wallace’s response and reaction are poor. He can say simple sentences but not clearly. The muscle tone of both upper limbs is low. He has deformed hands. The muscle tone of both lower limbs is a little high. He can sit and stand with support. He can walk unsteadily. He gets up at 6:30am, takes nap at 1:00, goes to bed at 9:00pm. He eats at 7:00am, 11:00 and 17:00. He sleeps and eats well. He will greet people, for example, saying “hi, ayi”, “zaijian”. He can answer some simple questions. He is active. He likes music and is a happy and energetic child.



Wallace is listed with Madison Adoption Associates. There is a $2,000 agency grant for Wallace’s adoption with MAA. There is an extra $1,000 grant for Wallace’s adoption if a family moves forward in March, making his MAA grant $3,000! Other grants may be available based on the adoptive family’s circumstances. Agency grants are awarded as agency fee reductions. MAA also partners with the Brittany’s Hope Foundation for matching grants, which are given out twice a year (January and July) and to families that already matched with a child.

If you are interested in reviewing Wallace’s file or in adopting Wallace, please fill out a free PAP Waiting Child Review Form, which can be found here: MAA Prospective Adoptive Parents – Waiting Child Review Form.

Different Routes Toward Adoption: Always Worth the Fight

March 19, 2017 1 Comments

We all have our buttons. One squeeze of the trigger, and we fire away. One of the quickest ways to trigger a release in my momma bear persona is to hear or read an often used comment in regards to adoption. No, I’m not talking about the things we all hear as adoptive parents when …Read More

Seeing Him in the Daily: A Transforming Perspective for the Hard Days

March 18, 2017 2 Comments

Today. Today feels like one of those “the days are long but the years are fast” kinda days — busy, demanding, a mile long to-do-list sort of seasons of motherhood. Have you been there? Maybe you are like me and feel like you live there! It’s in these impossible laundry-piled days that’s it’s easy to …Read More

Waiting Child: Seraphina

March 18, 2017 0 Comments

It’s easy to see how this little cherub got her advocacy name- the face of an angel. Adorable Seraphina recently turned four! At the time her file was prepared (fall 2014), she had good use of her limbs and was able to sit on her own and walk with support. She wasn’t able to speak. …Read More

Crying Over Cheerios: Overcoming Feeding Challenges

March 17, 2017 1 Comments

Where I grew up, food was a love language. I learned at a very young age that food was the center of any worthwhile gathering. I remember once in the sweltering heat of a Mississippi summer, we attended a family reunion. It was a potluck, and table after table was overflowing with plates of styrofoam …Read More

Waiting to be Chosen: Mary Beth

March 16, 2017 0 Comments

Sweet Mary Beth recently turned 7 years old- such a fun age, yet Mary Beth has experienced such loss in her young life. Mary Beth spent her first five years with her parents, turning up at an orphanage in December of 2014. It is unknown whether her gender or her special needs caused her parents …Read More

Meet the Contributors: Liberty

March 16, 2017 0 Comments

Continuing today with our series in which we share a short Q and A with one of our contributors to give y’all, our faithful readers, a little more behind-the-scenes insight into the amazing group of writers assembled here. And it will also give each of our contributors a chance to share their heart in a …Read More

Ten Frequently Asked Questions About Adopting a Child With Thalassemia

March 15, 2017 1 Comments

Kate, Chelsea, and Alissa are three friends who have brought home five girls with beta thalassemia within the last two years. They live in rural Montana – four hours from the nearest children’s hospital. All five of their girls are thriving with thalassemia and are truly living up to their name as the “Thal Thugs …Read More

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