Family Stories


At No Hands But Ours, we love family stories. Since our inception in 2008, we’ve featured a wide variety of family stories – and we continue to add new stories regularly. Please use the links in the right sidebar to click through to stories on specific special needs, or you can scroll down this main page to read all our family stories.

If you are home with your child from China, and would like to have your family story featured here, just use this form to let us know.


 


Thankful We Didn’t Know

May 23, 2017 by nohandsbutours 1 Comments

Almost four years ago, my husband finally said yes. Again.

We had talked, I had prayed. I’d promised not to nag, prayed some more, and waited for that yes.

When he agreed to begin our second adoption, he had limits. He had the idea to draw some lines in the sand of what special needs we could manage.

But God had other ideas for our family.

Just a few days after making the decision to adopt from China once again, my best friend sent me a photo of an adorable little girl with a pixie haircut and rosebud lips. My heart melted, I knew immediately that she was supposed to be my daughter. The deal was sealed when I saw her advocacy name….Lexi. For years I thought I would have another daughter, and we would name her Alexis.

Lexi’s file stated she had a heart condition and some minor delays but overall was a healthy, vibrant little four year old.

Ten months after seeing her face we were finally meeting her, our Alexis. She was very tiny at five years old, weighing just 21 pounds and was so pale. She could barely walk a few steps, and I was perplexed because only six months prior I was sent a video of her running to meet her foster father.

My baby was sick, I knew that. I just didn’t know how sick she was.

During our time in China, Lexi had horrible stomach pains and, even with regular meals, she was not gaining any strength. We trudged forward and made it through the two weeks in China with the unknowns hanging over our heads.

After a couple of weeks of being home, we visited the cardiologist, expecting to hear that her heart was fine, come back in a year. What we heard was something like that, plus a little more.

Her heart was fine and the surgery she had in China did repair the heart conditions listed on her file. But the echocardiogram also showed that she had a left aortic arch and a vascular ring that was just barely pressing on her esophagus. The cardiologist was not concerned about either of those issues at the moment and said it could be years or never that those could cause problems.

As I was breathing a sigh of relief, he mentioned that the echocardiogram showed something different in her lower aorta and he was going to schedule an MRI to investigate further. He also mentioned that her blood pressure was abnormally high.

Two weeks passed and the day of the MRI arrived. We were anxiously waiting in in the waiting room and were finally told to come back to recovery. When we entered the room, we were met with a team of doctors ranging from infectious disease, neurology, rheumatology and cardiology. We were told that Lexi had what appeared to be a blockage in her lower aorta and her blood pressure was at a dangerous level… she was being admitted into Cardiac Intensive Care. At that time her risk for a stroke was 100%.

After spending a week in the hospital, we left with the devastating news that Lexi had a rare autoimmune disease called Takayasu’s arteritis. Takayasu’s arteritis, also called TAK, is a rare form of vasculitis disease involving inflammation in the walls of the largest arteries in the body: the aorta and its main branches. The disease results from an attack by the body’s own immune system, causing inflammation in the walls of arteries.

In Takayasu’s arteritis, the inflammation damages the aorta — the large artery that carries blood from your heart to the rest of your body — and its main branches. The disease can lead to blockages or narrowed arteries (stenosis) or abnormally dilated arteries (aneurysms). TAK can also lead to arm or chest pain and high blood pressure and eventually to heart failure or stroke.

Takayasu’s arteritis can be fatal.

This is what happened to Lexi. TAK attacked her lower aorta causing blockage but it also caused damage to her superior mesenteric artery which feeds blood to her colon, pancreas, and appendix. Lexi’s femoral arteries were gone and were being fed by feeder arteries from the damaged aorta.

For two years the doctors tried to stop the inflammation from TAK, but it would not go away. Lexi’s symptoms were getting worse: her feet were always cold, her blood pressure was generally 150/120, and the fear of her having a stroke was growing. In November 2016, her team of physicians made the decision to bypass her lower aorta in order to alleviate those symptoms.

On December 6, 2016 Lexi went in for surgery. The surgery was scheduled to last 8-10 hours, but just two hours after leaving her side, we were called to meet with the doctor. Before they could even begin the actual surgery, Lexi went into cardiac arrest and had to be resuscitated. The surgeon and anesthesiologist were in tears while they were trying to tell me she was alive but on a vent, and they could not continue the surgery.

We could see her briefly before they moved her to ICU but until neurological testing could be done they could not determine the extent of brain damage, if any, that might have occurred during surgery. The two days spent waiting for the sedation to wear off and the 24 hour EEG to be completed were the longest two days of my life.

On December 8, the surgeons took her back to surgery and successfully bypassed her lower aorta. She came out of surgery with pink feet and blood pressure that was almost too low, but no one was worried. Her recovery was difficult, she weathered setbacks… but she made it.

TAK will never go away for Lexi, and she will always have to have some sort of medication to help fight the inflammation. She currently receives an injection at home every other week and we will find out in June if that medication is continuing to work. She will have to take blood thinners for the rest of her life which is difficult because she also has a bleeding disorder called Von Willebrand Disease.



Despite all of the challenges she has faced, nothing has stopped Lexi from doing the things she loves. Not even TAK.

She practices Shaolin Wing Chun, which is a form of Chinese Martial Arts. She runs (yes, now she can run), she plays with her sister, and she loves to play with her dogs.



I am so thankful we said yes, that she is ours. I cannot imagine our lives or the world without Lexi. I am also very thankful we did not know what the future was bringing us when we said yes….

We would have missed having her as our daughter.



If you have any questions about Takayasu’s arteritis (vasculitis), Von Willebrand disease, or congenital heart disease, please feel free to email me at kendi.allen@gmail.com or handinhand.kendra@gmail.com.

– guest post by Kendra

Full of Surprises

May 17, 2017 by nohandsbutours 2 Comments

When we started our adoption process we wanted a healthy child. That’s what everyone wants – adopted or biological – right?

Our hearts changed when we had the privilege of working with special needs kids, and we saw so much life and strength in them that we changed our adoption papers to special needs. When we first saw the medical report on MaKayla, the words hydrocephalus, Chiari malformation, and clubfoot popped off of the page. The pictures showed her feet so crooked. Doctors told us she probably wouldn’t walk on her own.

We were scared, but we had already fallen in love with her face. So we said yes… and have never regretted it.

When we met MaKayla, her feet were very crooked, and we knew this was the first problem that would have to be corrected. We found a doctor who was trained in the Ponseti method. She had several sessions of castings done, and then we started using the braces that she had to wear almost 24 hours a day. This wasn’t easy, but after awhile MaKayla got used to them. I remember when she was able to stop wearing them at night, she couldn’t sleep because she missed them.



The next thing we faced was similar to most spina bifida patients. MaKayla had a neurogenic bladder which meant she had to use catheter every four hours. To be honest, this stressed me out more then anything. I was so afraid this was going to be hard to do, or just inconvenient. I found out it was quite easy, and I could plan my scheduling around her cathing times. To me this was easier than having a kid yell they had to pee every hour when you’re out and about.

The first major surgery MaKayla faced was surgery to correct the reflux to her kidneys. Thankfully, there was no scarring on the kidneys and the operation went great.

MaKayla’s second major surgery was a shunt replacement. This usually can happen in patients every two to four years, but thankfully MaKayla’s had lasted nine years. It looks like this one could last longer before she has to have another revision.

MaKayla, at this time, is wearing braces called GRAFOs. The doctors are saying she should only have to wear these for a little while to strengthen up her knees, but soon will be able to go without them.



A lot of things have happened or are happening in MaKayla’s life, but please don’t think that MaKayla is in any way sickly. This girl is totally the opposite of sick – and has so much energy and spunk.

MaKayla has faced a lot of obstacles in her life.

Doctors and therapist are amazed how far MaKayla has come. When doctors said she can’t do something she says, “I can.” She’s faced everything with such determination. She has taught our family to believe in miracles and see that nothing is impossible.

This girl will climb rock walls, run with the other kids, and meet any challenge head on. She is so full of energy and life, and can make a friend in minutes. She is very smart, and loves to learn new things, especially in science. She is always talking about doing something in the medical field because she wants to help other kids like herself.



Our family has been so blessed by this girl.

She has showed us what life is, and how to live it. MaKayla knows all about her special needs, and loves to explain to others to help them understand her more. Having MaKayla has opened our eyes and hearts to other special needs kids. Two years after adopting her, we adopted another child with special needs.



If you’re trying to decide whether this is the path for you to take, I encourage you to take it. We have all grown so much and our home is now filled with so much love.

– guest post by Melissa

© 2017 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.