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Craniofacial Board 101

August 3, 2015 by nohandsbutours 0 Comments

You remember that moment when time sort of stands still? When you have the file of a precious one in front of you and you allow yourself to begin to love that child just a little in your heart, and as you open up to the brown of her eyes, or his crooked smile; you also open up to the possibility of “Can we do this?” “Can we handle that special need?”

I remember clearly the evening we saw the first picture of Grace, six months old and spiky black hair with two plastic balls in her grip, spunky to her core. We laughed at the fierce expression on her face and knew she would fit right in. We saw her determined beauty and to our surprise, we didn’t really see the complicated cleft lip and palate glaring like we thought it would. It was there, but it certainly wasn’t what defined her. And although we had placed that need carefully on our long list of what we thought we could handle, we didn’t expect to fall hard for a little girl whose cleft was noticeable and unrepaired. But we did. I remember that evening pouring over the endless surgical possibilities and in typical Jen fashion, expecting the best, yet preparing for the worst. Best case scenario, two surgeries. Worst case, fourteen. Deep breath. If you are like we were, your knowledge of what cleft lip and palate involves is limited to “Operation Smile” commercials. In reality, it is more complex and more diverse in outcome. The complexity and diversity can be quite overwhelming.

If you are in the “deep breath” season, here are some basic tips and personal experience to help as you navigate through. Keep breathing… (This is what I told myself as I pondered the possibility of fourteen surgeries. You may not need to hear it but I sure did.)


1. Carefully limit your time in online cleft lip/palate and craniofacial groups. I dove in for about two days and decided that for me personally, that was all I needed. While very helpful, I found so many differing opinions on the best course of treatment and a tremendous amount of stories on failed surgeries and even failed surgeries on their fourth try. I made the personal decision to only read what I needed to for a specific stage or decision. If I had a question, these groups were a solid place to ask. Otherwise, it was only fear provoking to read about every possible horrible outcome. I used them on a “need to know” basis and my husband instead quickly reviewed them each week to gain a greater knowledge of everything available in the world of cleft lip/palate. It did me no good to worry about these possibilities without having even met our daughter yet. First things first. Even when we returned home, my perusing these groups was purely for specific questions and answers, not for “light” reading or to get pulled into every heart-breaking story. Because I would – it is why I am careful even with the daily news in our world. It can be too much to process.


2. Craniofacial Boards are your friend. Truly, while initially overwhelming, these boards and the amazing people who specialize in them, are modern medicine at it’s finest. As a mother, I appreciate some good solid multi-tasking. These multi-specialty teams of often TEN doctors all get together on a Saturday to make a plan for your baby. They actually compare notes and have conversation and you attend ONE appointment instead of TEN. Beautiful.


3. Know your Craniofacial Team. Before adopting Grace, I can honestly say I had no idea what some of these specialized doctors did. I do now and they are simply amazing. They care for a variety of special needs dealing with anomalies of the face and cleft lip and palate are one of the most common. Here’s a quick run down for you:

• Plastic Surgeon – This doctor will deal primarily with the mouth and nose and likely be the lead doctor for both a lip and palate repair. This doctor can work miracles and will stage surgeries for optimal growth of the mouth, nose and face.

• Oral Maxillofacial Surgeon – This doctor works with teeth, jaw alignment and the spacing of the mouth. In Grace’s initial surgeries, she had an oral maxillofacial team that worked to stretch very tight muscles and skin around her bi-lateral cleft and extend her gum line and existing skin to “house” a new palate. They used words like “obturator,” which sounded like something I didn’t want in my daughter’s mouth and in McGuyver-like magic actually constructed something that worked. I’m still pretty certain it was made with wire and duct tape and I confess we doubted it’s ability but it did the trick. Grace had nothing to work with when we started and after three short months, she had something to stretch and build from in palate construction and lip repair. This is how you rock an obturator.

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• Pediatrician – These doctors are the home base for all other care. Ours figured out that Grace’s high fevers had nothing to do with ear infections or other cleft ailments. Urinary tract infections need pediatrician eyes and they are looking for the normal stuff like that along the way.

• Pediatric dentist – Ours is totally laid back and you have to be when you see the x-rays of your little one’s mouth for the first time. It could be in a horror film and you need a dentist who has seen it and is not fazed. Teeth growing in the palate, extra teeth and no teeth at all are the norm and you want one who has the experience to know what can wait and what is a pressing dental need.

• Otalaryngologist/ENT –Ear tubes and ear infections are the norm. Our ENT was our “supplier” for a short season of constant ear drops. He just gave them to us to have on our shelf as needed. You will likely talk with them a lot, especially at the beginning of treatment. Some specialize in the palate surgery and will take the lead there.

• Auditory Specialist – Because the cleft palate anomaly is so closely tied to the ear canal, ears are often affected. To date, Grace has had 3 or 4 intensive hearing tests to track hearing loss and hearing gain after the placement of ear tubes.

• Speech Pathologist –Hands down my favorite people. We see ours twice a week and have one wonderful cleft specialist on our team who knows every little nuance of speech and language issues for cleft children.

• Genetic Counselor –These doctors are looking for other genetic conditions attached to a cleft lip/palate diagnosis. They will normally ask a lot of questions and offer other testing to confirm or reveal other underlying conditions.

• Social Worker – These wonderful people exist on the team to advocate in places where advocacy is needed. They will ask about home, community, school and any areas that could use extra attention or help.

• Medical Photographer – This can be the most fun for your child if they like their picture taken. Normally special backgrounds, lights and poses exist so that the team can track progress and study facial shape and accurately decide a treatment plan.


4. Choose Your Own Adventure – With so many wonderful doctors on your team, it is a blessing to have everyone on the same page. There are treatments that HAVE to happen and others that are optional. You, as the parent, are a vital member of your child’s team. You can help decide the timing of procedures and what is needed. For example, we don’t need the help of a social worker in this season and didn’t want to go through extensive genetic testing. We met with a cardiologist upon returning home from China and knew that her heart was just fine. (Often, the heart is affected in cleft lip/palate kids). We made the decision that it is HER decision later in life to go through extensive genetic testing, so we declined the tests for now as there is no reason to begin looking at what she could genetically carry for offspring at the young age of four. We have slowed down procedures and waited a bit for the purpose of attachment. We have combined procedures so that she didn’t have to experience more surgery than absolutely necessary. Work with your team and listen to their expertise while advocating for your child whom you know best. Worry can push doctors to make decisions they don’t want to make. Fear can push them to respond unnecessarily. It is a team effort made in peace. We have deliberately kept going back to peace in all of the complicated decisions. Some trust in horses, some in chariots, some in craniofacial boards and some in good parental instincts, but we choose to trust the Lord in what He has for her. He’s good and her very best Advocate.


5. Pack for Craniofacial Board Day – Having been a part of two separate hospital teams so far, the board day is rather long in order to see all of those specialists – lasting between two and seven hours depending on the needs. All of the issues that normally trigger for your child will likely come out in buckets, simply from the stress of so many eyes and prodding in one day. We bring plenty of snacks, plenty of art, plenty of books and plenty to drink. We practice beforehand what the doctors may do – I hold her across my lap upside down and ask for the biggest open mouth and “AHHHHHH” possible. She will do that several times that day. Grace likes to talk and have her picture taken so that part is easy but prepare your child so the day is not so scary. And, there is nothing wrong with bribes. If I had to endure that board, I would at least want some Starbucks. Ice cream and a DocMcStuffins figure have worked very well. As the parent, bring all documents that pertain – such as past surgery outcomes, shot records, and speech evaluations. Bring a notebook with your questions and write answers as the day is long and it’s hard to remember. Bring a calendar to plan future appointments and treatments.


6. Consider the Lilies – It is very easy and totally normal to get overwhelmed. We have been a part of two Craniofacial teams – starting with one when we returned home and switching teams (not our rule following/people pleasing style but the best for Grace) just this last year for more specialized treatment. We have had two surgeries that combined a few procedures and have had two rare major complications from them. We are approaching a third surgery in the next six months that will combine lasers for scarring, a “mini” nose job and likely a palate extension. We are currently “practicing” for nasoendoscopy that will occur next week to determine the extent of palate revision. This, again, looks like a horror movie that Grace will experience WIDE AWAKE. I’ve heard it goes well – I would personally cry if it were me!

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Grace, like many children with special needs, is more loved and more covered than the lilies that neither toil nor spin. There is a plan for her life and I can rest there. She is more resilient than those flowers that get tossed by wind and more hearty than what the elements can throw at her. She is clothed in a holy kind of way and all of the details are just that. Details. We take them one at a time. There have been a few treatment plans that have changed already. One in particular sounded like the most terrible horror movie plan where her mouth would be sewn shut for two weeks so that the healthy bottom lip could provide for the post complication top lip. Because our girl has a habit of commandeering Bath and Body hand lotion and dousing herself with it – INCLUDING that lip scar – and combined with her penchant for non-stop talking – that lip stretched on it’s own and that horror film surgery is off the table. I could have toiled and spun my way to anxiety but sometimes, the details take care of themselves. We do the next thing and we trust that she is more prized than the lilies that seem to do alright most of the time.

She is doing more than alright. She is a professional. That board is “her people” and she actually enjoys the day now. This is how you rock Craniofacial Board Day.

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Going to China: Taking Siblings Along

August 3, 2015 by nohandsbutours 0 Comments

Continuing into August with our Going to China series, because one month just isn’t long enough to cover all things China-trip related! Today Nicole shares how she successfully traveled to China as a family of 6. Upcoming topics include orphanage behaviors, undisclosed special needs, different ways children react at placement, and how to cope with feeding and attachment issues while in country.


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My husband and I traveled with our three children (ages 9, 7, and 4) to bring our newest son home at the end of 2014. To make our trip as successful as possible, we did a lot of planning and preparation ahead of time.

We talked with our children beforehand. A lot. This included talking quite a bit about what to expect during our trip. We discussed the travel, plane ride, hotel, sights, sounds, food, and smells of China. If you haven’t been to China before, I recommend this book to prepare.

While there, we reminded them what was going to be happening each day so there weren’t any big surprises. We also made sure to explain a lot about how our new son may react on Family Day, so they were prepared for a wide range of emotions and behaviors. We asked them to take things slowly, being sure to not touch him a lot at first. We talked at length about how important it was for their new brother to learn who mommy and daddy were.

They were supposed to be playmates only, and they knew not to meet any of his physical or emotional needs. They were also tasked with the job of videoing and taking pictures during Family Day while we tried to comfort our newest little guy.


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We packed for all situations. I packed a lot of extras that I wouldn’t have if just my husband and I were traveling. We took a lot of snacks and food that we knew would be comforting to them. I packed extra clothes for different weather situations. We also took a large variety of medications for them, including ibuprofen, benadryl, antibiotics, prescription allergy meds (to combat the pollution), etc. We included a stash of melatonin to help with sleep regulation. I packed some of their clothes and supplies in all of the checked luggage in case we lost any of the bags. This made sure that even if only one bag made it, they at least had a few days of clothes. We packed many small toys, play dough, and other entertainment in checked luggage. (We also packed a backpack for our new son, loaded with toys that were just for him.)


Electronic entertainment was employed. “Screens” were a lifesaver for us. We gave all of the children early Christmas gifts and loaded the new devices up with games (that didn’t need internet), a variety of music, our homeschool memory work songs, and books on tape. I also put several e-books on my iPhone to read aloud, but we never ended up using them. The in-flight movies were a wonderful addition to the long flights too because they helped break up the 15 hours.


We planned with travel in mind. For the flights, I packed each child a backpack with the following:

  1. Their loaded-up electronic devices, chargers, and headphones.
  2. Individual snacks in the original packaging, inside of a plastic baggie for easy access. (I also prepped a second snack bag inside our checked luggage for the plane ride home).
  3. Travel pillows.
  4. Their favorite blanket.
  5. Travel-size tissues.
  6. Travel-size wet ones.
  7. Travel-size hand sanitizer.
  8. An empty water bottle to fill with drinks.
  9. A full change of clothes in a gallon-size plastic baggie.
  10. Toothbrush and toothpaste.
  11. A few games, including a travel scavenger hunt.
  12. Anything else that they wanted to fit, without making the backpack too heavy.

Also, we booked flights that were non-stop. It took extra planning, but it made all the difference in the world. We had to drive a little extra, but we all agreed that layovers with four children weren’t something we wanted to deal with.


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We tried to be realistic and flexible while creating a comfortable routine in-country. While we were in China, we made sure to be realistic about our expectations for them. We didn’t overload their days with a ton of events, but still did plenty of sightseeing and shopping. We tried to create some semblance of a routine each day, allowing ample time for sleep. But we also went with the flow, as is needed when traveling with children! I highly recommend renting a family apartment at the Garden Hotel – we had plenty of space and even had a microwave, washer, and dryer! It offered a safe and welcoming “home” to come back to each day.


Being in China together didn’t always mean sticking together. My husband and I often split up with the kids, especially when adoption paperwork was required. I went alone with our son to the medical appointment. Also, we separated to get some of the children out for awhile. Our new son did better in the apartment, but the other children wanted to experience China! We tried to be as accommodating as we could so that all of the children had their needs met. We also did go out as a family, but kept our trips brief.


A positive attitude helped us see the beauty. We had a few tough situations, but the trip was overwhelmingly positive. Even with lots of travel, missing sleep, a few tantrums, and some picky eaters, we are so glad we took everyone. The children have memories that we can never recreate: they had the opportunity to try new foods, practice their Mandarin, see amazing sights, and fall in love with China. They also learned many valuable lessons during that trip, and got to experience life in a new and different way. They were able to witness their new brother join our family; and our new son got to meet his whole family right away. The older children offered a lot of comic relief when needed, and I think they helped our new son feel more comfortable.


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We can’t wait to go back. Our children talk almost daily about their return trip to China! We don’t know when it will be, but we know we’ll go back. In the meantime, we are keeping up with our Mandarin studies so they will be even more prepared. We look forward to going back together and are so grateful for our time in China!

what we’re reading: 8.2.15

August 2, 2015 by nohandsbutours 0 Comments

Hello August, hello new family travel blogs (my favorite!), and hello news articles and posts of interest! Thank you to everyone who contributed to this month’s compilation, keep the links coming!

To share a blog post or news article go here.
To share your blog with our readers, as a soon-to-be traveling family, go here.


blogs

Kindness Matters. Read the beautiful thoughts of a mama encountering new experiences with her daughter who has a visible special need, especially poignant are the times she has been shown kindness. May we all learn how to extend love and kindness on this day.

All you ever wondered about Adopting Out of Birth Order, Two Unrelated Children, or an Older Child compiled into one succinct post. If you are curious about any of these topics head over to Mine In China to read more, and while you’re there read through the archives, this is a great blog with lots of information on China adoption.

One of the issues which can become prevalent for families who are in the middle of attachment and bonding struggles is well covered in the post, Adoption 101: Indiscriminate affection. In fact, this is a post you can send out to families and friends to better understand what your child may be going through, giving encouragement advice: “Educating yourself on what new adopted families will be facing with their children and how you can appropriately respond to these issues is one way you can support these families.”

It is not often that you get to see inside of the heart of someone who has just realized they have fallen in love. In She Has My Heart, we get to see just this. The beautiful retelling of a mama realizes how deeply she has fallen for her daughter. A daughter she may have for “one more day, or one more month, or one hundred more years to hold” is now in full possession of her new mama’s heart.

Growing Wests shares a fantastic post titled, Foodies. This is a great read filled with love and practical wisdom from a super-mom who shares her perspective of having children with food issues.

Let me share just a few words of the post Call to Boymom by Leftylex: “Being a boymom is just about as terrifying as I thought it would be. My son is as sticky as a glue stick every second of the day, his energy never runs out, and he instantly turns any object into a weapon. But, dear Lord, does that boy love and melt his mama!” Now go read the rest, it’s so good!

Lanza Adoption Adventure gives us a review on the children’s book titled, Porcupette Finds a Family. This sounds like a sweet book which might be helpful for children who are learning to love and trust their new adoptive family.


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Jamie, a fellow adoptive mom has authored the book, Blood Sisters: A Tale of Adoption, Thalassemia, Sisterhood and Miracles. The book recounts her family’s story of adopting two girls from different parts of China who both have the same rare blood disorder. “This is the story of how they became a family and how that family navigates the world of adoption and medical care.”

We had the privilege of sharing The Ayers Family Writes Their Own Story with you last year. Watch this inspiring video as they make the news in their local city. The courage this amazing couple exemplifies in facing the fears of adoption and travel to China is a lesson for all of us, they did not let anything stand in their way. It is such a blessing and privilege to have this type of bravery for us to learn from within our China adoption community.

Zhanjiang Kids Organization has officially opened their foster home named Grace Village in Zhanjiang, Guangdong. They will be serving special need children who require more specialized care than what may receive within the local orphanage. It is such a joy to watch the difference they are making in these little lives within the very first few days of opening.


families

Pepper Meeting her Daddy for the First TIme

Pepper Meeting her Daddy for the First TIme

In China now (or super soon)…
Faith, Trust, and Pixie Dust
Our Adoption Journey
Happy Family of 5
Bringing Home Pepper
Hendersonian
Vermillion Rules
Strengthen My Hands

And just home from China…
God>Impossible
Crazy Blessed
One Love, One Family
A Miracle for Meg
From Great Wall to Great Lakes
Joy In the Waiting
Bringing Charlie Home
The Gordons
White House Adventures

Getting close to travel for your little one in China? Share the link HERE.


Thank you for joining us for another What We’re Reading edition, see you again soon!

LibertyNHBOSig

“Easiest Special Need Ever”

August 1, 2015 by nohandsbutours 0 Comments

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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 …Read More

Living into Hope

July 31, 2015 by nohandsbutours 0 Comments

matthew

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 …Read More

Going to China: the Long Flight Home

July 31, 2015 by nohandsbutours 0 Comments

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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 …Read More

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

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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.