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“Easiest Special Need Ever”

August 1, 2015 by nohandsbutours 0 Comments

Continuing to spotlight different special needs each month, we just finished up a month of posts from moms parenting kids with craniofacial needs. This month we are focusing on infectious special needs: HIV, Hepatitis B, Syphilis and Tuberculosis. Grateful for each and every mom who shares so others might be encouraged to consider a special need that once seemed too difficult or too scary.

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The first time I remember hearing about HIV, it was an article I read about Ryan White. In the article, his mom was interviewed and talked about how she was not scared of catching HIV. That she hugged him and kissed him and shared his soda. I remember wondering why anyone would be scared to catch it from hugging or kissing or sharing soda. I was in middle school probably, but knew it could not be spread by casual contact.

The next time HIV blipped my radar, I was in nursing school. We went around the room introducing ourselves and said what area of nursing we were interested in. My answer was pediatric nurse practitioner (I got that half right!). One of my classmates said emphatically, “HIV/AIDS – that is what I want to work with.” I remember thinking that would be an intriguing population to work with.

The first child I met who was HIV positive was during my hospice clinical rotation. The girl was 6 or 7, her braided pigtails flying behind her as she played. I asked her hospice nurse how in the world she qualified for hospice (to qualify a physician must say they do not expect you to live longer than 6 months). The nurse said that she will most likely live to be an adult (this was the mid-1990’s and the new medications were just beginning to be available), but no one knew for sure. That little girl was so full of life, and so adorable, I could not fathom her life may be cut short because of a virus.

Fast forward over 15 years (how did that happen so fast??). We are beginning the adoption process for our daughter. It was time to fill out that medical checklist. Which medical needs would we be ok with? Many needs made that list, including hepatitis and HIV. I think that was the point where I knew that adopting a kiddo with HIV was in our future. We knew that HIV was considered a treatable, chronic condition. It no longer was a death sentence. HIV is easier to manage and has fewer complications than diabetes.

We did pounds and pounds of adoption paperwork. We completed our parent training. We excitedly told our families who were overall supportive. Then the day came that we got THE CALL. It was our 15th wedding anniversary. The agency rep said they had the file of a girl younger than we’d requested, but otherwise fit our medical checklist. She had cleft lip and palate, hepatitis B, and some hearing loss. Did I want her to email the file to us? Well, I thought that was a silly question.


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We both knew when we opened the file she was ours. We raced through more paperwork, and finally traveled to China and arrived home in February 2013. She had several medical appointments, including the cleft team and with a GI specialist who would manage her Hepatitis B. Her labs came back and she was hepatitis negative. The doc called the lab and spoke to them to be sure. We have no idea why the labs in her file said she was hep B positive. We settled into our new life of parents of 3 kids.

In April (yes about two months after arriving home) I saw the face of a little boy in a waiting child group. He was 5 1/2. He was HIV positive. He was the cutest boy in all of China. I loved him. We just got home though. We were broke. We were trying to find our new normal. So I advocated for him. Surely I could find this sweetheart a family. Time passed. His 6th birthday came in July and I grieved.


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After much prayer, we decided that we were his family. One small issue. His file was assigned to another agency. We wanted to re-use our dossier paperwork to save time and money (a family can re-use much of their adoption paperwork required by China if they submit LOI before the one year adoption date of the kiddo who just arrived home). I called the other agency. They wanted to keep his file one more week, and then they would transfer it. That was one of the longest weeks of my life. I called back exactly a week later. The agency rep said they requested the transfer the day before. Our agency emailed very soon after saying they had his file.

We did more paperwork. It was near our anniversary again (16 years!), so we announced to family that our sweet Alex was our gift that year. We did more paperwork. We moved to a different state. That required more paperwork. We scrimped and saved and went into debt to pay fees and travel. In April 2014, Alex joined our family, about a year after I first saw his picture.


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He slid into our family seamlessly. He is the happiest, most easy going boy. He is learning what it means to be in a family. The HIV affects us daily, but it doesn’t. He takes meds (3 different anti-virals) twice a day. He needs labs every 3-4 months. His viral load has always been undetectable, so technically he cannot pass it to anyone. Other than Alex getting tired more easily than our other kids, HIV does not affect his health very much. He is a normal healthy kid. He loves swimming and dragons. He loves ice cream but still does not like cheese. He fights with his siblings.

I am much more aware of the perception of HIV in the general public. My heart breaks when I hear stories of a mom losing custody of her kids because her new fiancée is HIV positive. My heart soars when families with one HIV positive parent posts pictures of his HIV negative family – including his kids. I feel heartbroken when I hear of a housekeeper in China whose husband wants a divorce and custody of their children because she simply worked for a family who was fostering a child exposed to HIV at birth.

The truth is in China the stigma is much worse when compared to the US. HIV positive people are routinely denied jobs, housing, and medical care. This breaks my heart. I have willingly become an educator and advocate. I make it well known that I am always willing to answer HIV questions, without judgment, no need to be embarrassed. Asking questions is how we learn.


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Here is a list of the most common questions I get asked:

1. What about boo-boos and blood? Do your kids know what to do when they bleed? Are there any risks if my kid plays with a kiddo who is HIV positive?

HIV has never been spread through casual contact. Bleeding boo-boos are not scary. HIV is killed quickly by contact with air. Any spilled body fluid has to get into the bloodstream to infect someone – which is hard to do. Putting on a band-aid happens the same way it does at your house. Intact skin is the best defense against any virus. We teach all of our kids not to touch other people’s blood. That is the medical part of me though – it has nothing to do with HIV. I don’t want my kids touching anyone’s body fluids – that is just gross and unnecessary. They know to come get a grown up if they see blood. There are no risks for children playing together. They can pass on the flu or colds – but not HIV.


2. If I adopt a HIV positive kiddo – what if she gets sick? Will she end up in the hospital from a cold? Do I need to worry about her immune system?

All kids get sick. It is part of life. Yes – you would watch a bit more closely, but it really depends on what her immune system is up to. A cold does not mean a hospitalization. The medications used to combat the HIV also help normalize the immune system. Most of the time the body will fight it off just like it would for anyone else. Of course there are exceptions, and sometimes HIV kiddos do get sicker. Just like cardiac kiddos, or diabetic kiddos, or any kiddo that deals with a chronic medical condition. There are things you can do to help your kid’s immune system. Most important thing is frequent handwashing. In our family we use vitamin C and D as immune boosters (especially in the winter). We also avoid gatherings when others are sick. That also has more to do with my not wanting the kids to get sick than the HIV. Sick kids are not fun!


3. How often are doctor visits? How much do the meds cost? How often is lab work?

Doctor visits with the pediatric infectious disease (or PID) doc are every 3-4 months for most kids with HIV. Labs are the same frequency. The medications are usually covered well under insurance, and if not there are medication programs to help reduce the cost if needed. The families I polled pay about $35-80 per month for all the meds. We fall in the middle of that.


4. What if the meds don’t work? What if the child becomes resistant to the meds? What about medication side effects?

Drug resistance usually occurs when the medications are not given regularly. Missed doses or frequent medication changes can lead to drug resistance. There are now very sophisticated tests that help the PID if this situation arises. There are several types of HIV and some types respond better to different meds. There are 5 categories of HIV meds, and around 25 different meds total. Research is being done to increase the medication options. If resistance occurs, there are tests for that too. The resistance tests (which are all blood tests) help determine what the next step will be. Thankfully this is rare, and PID’s are usually more than willing to collaborate with each other.

There is still a great deal of research in HIV. I talked with several people who have kiddos who are drug-resistant and none of them regret choosing this medical need. So far all have found treatment options – different combinations of medications or even research trials. My advice would be to call your local PID and ask them how they would handle this. The meds can have side effects, and like any med it really is dependent on the individual. We have been through one med change because of side effects. There are many medication options out there and finding the treatment regimen that has the least amount of side effects may take time. Part of the quarterly lab work is monitoring liver function and such to keep an eye out for early indicators of side effects.


5. What is the long term prognosis? Can a HIV positive person marry a HIV negative person and not infect them?

People with HIV have normal life expectancy. Dying from AIDS is pretty rare. A person with HIV can marry, have kids (even the old fashioned way!), without infecting their partner or baby if they are the woman. Magic Johnson and his wife have been married many years, and she is still HIV negative.

I have a confession. When I traveled to get our Alex, my good friend Brandi went with me. She is also a nurse, and we both have seen a lot of different medical needs. We both had adopted from China’s Waiting Child program before, and had experienced several needs in our own families. Twice a day, when it was time for Alex to take his meds (which he swallowed the pills all at once), we would gleefully look at each other and one of us would say, “Easiest special need ever!!” We felt like we had a secret. Alex was so healthy, such a normal 6 year old boy, it felt like he had no special need. And we still feel that way.

– guest post by Kathy 

Living into Hope

July 31, 2015 by nohandsbutours 0 Comments

Today’s post finishes out our feature this month on craniofacial needs. So grateful for all the moms who willingly shared about parenting a child with a craniofacial need – you can find all the posts in this series here. If you would like to share your family story, just complete this short form and we will be in touch with you shortly!

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I didn’t sign up for this.

There’s something about international adoption that tricked me into believing I had some modicum of control over my life. It’s funny because with our first two babies, both homegrown, I remember being terrified that they would be born with challenges or delays I didn’t have the skills to navigate.

But somehow in our adoption process with our third baby, I felt like I was holding the reins. We carefully poured over the list of special needs, researching each one, compiling a list of the needs we were willing to say “yes” to. We prayed that God would guide us through this process, and when we presented our list to our adoption agency, we did so with a confident sense of control and security.

We were quickly matched with a beautiful 12-month old baby boy with an unrepaired cleft lip and palate in southern Guangdong Provence. Six months later we traveled to meet our son Matthew, and even though that trip was emotional and exhausting, the path seemed straight and steady, just as we’d expected.


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I suppose it was a few months after arriving home that my husband and I had the first of many hard conversations:

Matthew isn’t catching up like everyone else’s kiddos are. He’s not talking. He’s struggling with social communication. Something isn’t right.

We survived a round of surgeries: lip repair, dental surgery, palate repair, placement of ear tubes (twice), and nasal stent removal. Looking back now, all those hours we sat in the Seattle Children’s Hospital surgery waiting room seem like a blip on the screen of time. They were exhausting and anxious days, but our boy came through each one like a champ. Healing happened, and little by little his cleft lip and palate were knit back together.

But what has been slower to “repair” are the developmental delays, particularly in the social realm, that Matthew likely sustained due to lack of stimulation and healthy brain growth while in the orphanage.

For our family, the developmental challenges have been hardest. We signed up for cleft lip and palate, but we didn’t sign up for the host of other diagnoses we’ve received: Autism Spectrum Disorder, ADHD, Expressive Language Delay, Sensory Processing Disorder, possible Apraxia of Speech, and general delays in the cognitive, adaptive and gross/fine motor areas. It’s a long list of disorders and delays, and some days I don’t feel up to the challenge. It’s certainly not what I asked for and definitely not what I signed up for.

We’re now under the care of a craniofacial team, a neurodevelopmental pediatrician, a geneticist, a behavioral psychologist who specializes in Autism, a family pediatrician who manages Matthew’s medication, an OT who specializes in Sensory Processing Disorder, and two different speech therapists – one who works with Matthew’s oral motor delays and one who works on play and communication skills. I’m sure it sounds like a crazy list of people, but I’m deeply grateful for each member of Matthew’s team.

I’m not writing this to scare anyone considering international adoption – I firmly believe God called us to this journey, and we have seen His faithfulness literally wrap itself around us during some very hard times. But I do wish before we had adopted, someone had told me that adoption doesn’t always go like you expect it to go. Loss, uncertainty, fear and anxiety are part of the path. And sometimes kids come home and end up having some pretty significant developmental delays.


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But I will tell you that because of Matthew’s adoption, we’ve felt the presence and love of God in ways we never expected. God has shown up in the least likely places, giving us courage and strength to take each next step. Sometimes my faith has been the only thing getting me from one day to the next.

In addition to being an adoptive mama and a college professor, I’m also a songwriter. In the thick of Matthew’s many unraveling challenges, I wrote a song called “These Days.” One of the verses goes this way:

I have changed a lot these days
Lost some of my innocence and stopped being so afraid
And in the empty spaces
Comes a kind of hope I’ve never known before these days

There are so many things I’ve learned about God, about myself, and about Matthew because of this adoption path. I have learned to let go of my need to be in control and simply take one step at a time, trusting that we’ll have what we need for each next step. I’ve also cultivated, deep in my soul, the most incredible sense of hope I could ever imagine. It’s a hope that trusts in the provision of a loving God – a hope that is buoyed by the love and support of those who walk this path with us.

One of the biggest gifts our family has received from Matthew is the ability to love someone who doesn’t function and interact in a “typical” way. We’ve worked hard to cultivate a place of welcome for Matthew – in our family, in our home, and in our larger community. Almost every day I learn something new about myself because I’m Matthew’s mama. And I also have the incredible privilege of watching him grow and develop – at his own pace, of course.

I’ve also connected with some other families who like us brought home a child with many more developmental challenges than expected. I’ve exchanged messages and phone calls with some incredible adoptive mamas – women who have shared their stories and their challenges with me. Rather than feeling isolated, I’ve felt supported and heard. God has provided for me, even in this.

These days I can’t imagine life without Matthew. He makes us a complete family, and being his mama is one of the most rewarding things I’ve ever experienced. Recently someone asked me this question: “Knowing what you now know, if you could do it over again, would you adopt a child with special needs from an international country?”

Yes, I said, without hesitating. Yes, I most certainly would.


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Despite his imperfections (or perhaps because of them), Matthew is wonderful and beautiful to me, and I’m grateful to have him in my life. Delays and challenges abound around here, but I’m also head-over-heels in love with my boy. Every kid needs a mama who loves him just as he is—who creates a place of welcome and who holds hope in her heart. In our family, that’s me: the one who holds hope.

Hebrews 6:19 tells us, “hope anchors the soul.” I’m grateful that nothing can take that hope from me.


Annemarie Russell is a mama to three beautiful children, one of whom is adopted from China and came home with an unrepaired cleft lip and palate. She’s also a college English professor and a singer-songwriter. She lives in Washington State and blogs about adoption, life and parenting.

Going to China: the Long Flight Home

July 31, 2015 by nohandsbutours 0 Comments

The China trip looms large in our adoptive parent hearts and minds. We daydream about Gotcha Day, pray for the moment we can snuggle in the hotel with our little love, hope for that once in a lifetime walk along the Great Wall, plan for an afternoon spent shopping in Guangzhou, and imagine ourselves eating noodles from brothy bowls with chopsticks. But the flight? Oh the flight. There is no glossy anticipation there.


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The flight to China is a beast, but the flight home with our new little one, who we are just getting to know, who probably has never flown or been seat belted, and who quite possibly might be sick, congested or constipated? That flight is an exercise in patience, a test of our survival skills. We don’t plan to savor the moment or make memories. The goal is to push through and make it to the other side of the ocean where our loved ones await us at the airport.

Begin with expectations. I love that adoptive momma, Lindsay Esco, suggests that we “manage our expectations”. You don’t need to expect the worst of the worst. Many of us have had long and tiring, yet easy, flights home. Prepare your bags carefully, but don’t let the looming flight home take any joy from your last days in China. Simply manage your expectations. Plan ahead to dispense heavy doses of grace to yourself, your child and husband and/or family.

Since private jets typically aren’t an option, here are some survival tips to help you keep your sanity and a bit of dignity. These are taken from the collective wisdom of the adoption community, from blogs and FB threads, and advice from adoptive parents who have gone before us, blazing the trail at 40,000 above the Pacific. Like I’ve done, take the packing tips and advice, and make it your own.


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What to Pack:

• Extra diapers and Pull-Ups, even for potty trained older kids.
• Extra parent outfits
• Electronic devices with chargers
• Water bottle
• Adoption paperwork
• Passports
• Money
• Ziploc toiletry bag: disposable toothbrush, soap, and wipes
• Meds
• Melatonin
• Snacks
• Books
• Your own earphones for watching movies.
• Child carrier for walking aisles and speeding through airports.


Food and Drink:

• It is easy to get dehydrated, so drink only water. Avoid all caffeine. (This also helps with jet lag.) Ask the flight attendant to fill your water bottle.
• Bring your own snacks in case you don’t like the food.
• Squeezable baby food items for toddlers (applesauce, etc.)
• Puffs, Cheerios or Goldfish for small children
• Bring Chinese snacks familiar to your child, such as rice crackers.
• Protein bars or energy bars might be just the boost you need.
• Lollipops and other treats. Although it would be ideal to minimize sugar, this might not be the time to obsess over nutrition.


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Rest and Comfort:

• Take melatonin, kids as well.
• Attempt to sleep during the night of the time zone you are headed too.
• Pack a neck pillow. Might look a little silly, but oh the added comfort.
• Cozy socks. Take your shoes off quickly and get comfortable.
• Take lavender oil or other essential oils to help you relax.
• Bring chamomile or “sleepy time” tea bags.
• Compression socks for those who tend to have swelling in the feet and ankles.
• Blanket and stuffed animal for kids.


Medicine:

• Mylicon (simethicone) drops. The gases in your intestines expand when you are in the sky, these drops help relieve pressure. Use before meals and every four hours.
• Use vitamin C packets in your water every 4 hours.
• No Jet Lag is recommended by many experienced travelers.
• Ear drops for kids. The pressure can be quite painful and frightening.
• Pain reliever
• Pepto/Immodium
• Prescriptions



Toys:

• Water Wow books. Fill the pen with water and your child can “paint”.
• Travel Color Wonder pads
• Small packs of Play doh
• Wikki Stix for older kids
• Coloring books and crayons
• Notepads and markers
• Cards (UNO, etc.)
• Stickers and paper
• Small action figures or dolls


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Finally, along with heavy doses of grace, push yourself to find the humor in your situation. You are on a crazy parenting mission involving planes, trains and automobiles, and that deserves a giggle. Our last China flight, with two newly adopted kids, is one of family legend. Our daughter was very, very sick with a scary spiked fever. She also needed medical care (involving medical equipment that was new to her mom and dad), so we held her the entire time, served her mystery meat sticks given to us by her nanny to calm her, walked the aisles, administered Chinese antibiotics with Mandarin direction labels, and earned our nursing badges in the minuscule airplane lavatory.

Then, just in case we were getting too intense, our son had a massive blowout diaper through two diapers and all his extra clothes and onto me. As I stood up to carry our stinky selves back to our well used lavatory, I see the whole plane covering their noses and diverting their eyes. When we arrived in Tokyo, along with wrangling carry-ons, we had to carry him through the airport wrapped in a tiny, orange airplane blanket. He eventually wore his sister’s too small “jeggings” while I scrubbed out his pants in a bathroom sink and dried them under a hand dryer, while a contingency of fascinated Asian travelers stood watch.

So, future travelers, laugh with us, think of our experience, triple diaper your kids and pack extra clothes! The good news? We survived and have a tall tale to tell. And, on our other adoption trip, our new daughter slept every hour of the long flights. My husband and I watched movies, played Sudoku and chatted with other travelers.

Those plane flights home are like Forrest Gump’s box of chocolates. You never know what you’re going to get. So, pack well, pray for travel mercy, “manage your expectations’ and hold on hard to your sense of humor.

Contributor Q and A: Moments!

July 30, 2015 by nohandsbutours 0 Comments

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At some point on your China trip, something silly, something embarrassing, or something crazy will happen. You are away from home, out of your comfort zone, adopting a new to you child, and traveling in a unique culture. You can bank on some family giggles. The No Hands But Ours contributors have accrued their share …Read More

Waiting Child: Ethan

July 30, 2015 by nohandsbutours 0 Comments

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Ethan is a handsome boy, who is 4 years old. He is listed with Hawaii International Child. He was found abandoned when he was 3 years old, and brought to the orphanage. They found him to be in good health, with the exception of low muscle tension in his legs. The doctor diagnosed him with …Read More

What Should I Pack for China?: My Best Attempt at a Comprehensive Packing List

July 29, 2015 by nohandsbutours 2 Comments

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One of the questions I see most often in China Adoption Facebook groups is “What should I pack for China?” Naturally, I had this question the first time I adopted from China. When I approached this task, I did what I always do: I researched. Every time someone posted in a DTC Facebook group a …Read More

Waiting Child: Kim

July 28, 2015 by nohandsbutours 0 Comments

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Kim is a precious and beautiful girl who is 6 years old. She is designated special focus to Lifeline through an Orphanage Partnership. Her special need is listed as abnormal bone development. This little girl is absolutely precious! She is a polite and loves to greet others! She can walk unassisted, go up and down …Read More

Going to China: Carry-On Only

July 27, 2015 by nohandsbutours 0 Comments

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Being that my husband is in the airline industry, we have been a family that takes full advantage of the flight benefits. Therefore, since we fly stand-by, we hardly ever check bags – because one is never totally quite sure IF we will get on the said flight until the last minute – major bummer if your …Read More

#ohChina

July 27, 2015 by nohandsbutours 8 Comments

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China. Whether you’ve been there and back again 10 times or are anxiously awaiting that call telling you it’s time to call your travel agent, you can feel very much a foreigner in a foreign land. As we’ve been those foreigners, there are a few things I’ve learned along the way that may be helpful …Read More

Contributor Q and A: “I Wish I’d…”

July 26, 2015 by nohandsbutours 0 Comments

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With more than 50 adoption trips behind us collectively, our contributor team reflects on their journeys and what they might have done differently. The consensus? Less worrying, less formal touring and more soaking up authentic daily life in China. And, we wish we’d bought a few more coffee mugs!   I wish I’d spent more time… Desireé: Visit your …Read More

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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.