Life with VACTERL: Staying One Step Ahead

November 21, 2017 0 Comments

When we are researching special needs we usually get the big stuff covered: medical necessities such as surgeries, procedures and therapies. Once we check those boxes we feel we are “good to go” and will figure out the rest on the way. At least that’s how I am!

We have a son diagnosed with VACTERL association. This was not in his adoption file but instead a slew (yes, a slew) of various medical needs that all added up to VACTERL diagnosed by a doctor once we were home. We understood the surgeries and knew how to manage the need but, of course, things come up that make you say, “I never thought about this!”

One of those things for us has been traveling. Anytime we travel, whether it’s overnight for a reunion, a few days at the grandparents’ house or a week for post-op visits, we have to pack “everything plus the kitchen sink”. Now I will say, every child with VACTERL is different and this will look different for each family. For instance, my son has the V, A, C, and R components of the association. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. So a family that has a child with the “T” component might have extra or different supplies to bring on a trip.

Traveling for us looks like this:

Potty Seat – we have forgotten this before and poor kid had to do the “China squat” so he wouldn’t fall into the toilet.

Tray table – most hotels have a mini table that can be moved into the bathroom so sometimes we don’t bring this. It’s very bulky so we try to if we don’t have to. Plus it’s not 100% necessary but it’s nice to have a surface to play on if you’re sitting on the toilet for an hour!

A step stool – if your child’s feet don’t touch the floor then it’s nice to have a stool to rest them on to prevent them from falling asleep. That can be uncomfortable! But we’ve recently started leaving this off the list and finding other ways to prop up his feet. Like a suitcase! 😉

Items of Entertainment – this can be an iPad/tablet, coloring books, puzzles, Legos, etc. It’s just nice to have items that help pass the time instead of staring at a bathroom wall.

Enema bags – along with a wire coat hanger to hang the bag, or Command Damage Free hanger hooks. These can be very helpful to have on hand!

Other items – coude’ catheters, regular catheters, lubricant, ace stopper, Tegaderm adhesives, scissors, syringes, medical tape, diapers, nighttime diapers, swim diapers, saline solution, glycerin, castile soap, “chucks” (or throw away pads) for the bed, diaper rash cream, regular wipes, flushable wipes and air freshener (we have been known to pack some Poo-pourri).

We always carry an extra backpack that serves as a “medical bag” in case we are gone all day long as well as keep extra supplies in our car. I like to advise families to keep an empty water bottle in their car in case you need to cath while driving. (I have crawled in the backseat many of times and helped our son out when there was nowhere to stop and get out.)

While my son and others diagnosed with VACTERL may always have to be thinking one step ahead on managing their need on a daily basis, there is no reason they cannot live life to the fullest! We treat this need as his “normal” and treat his management as just a part of his routine like brushing his teeth or getting dressed.

Sometimes our son will start to feel sorry for himself and see all the extra work everyone goes through. He doesn’t “get” why he was made differently. I choose to tell him everyone is made differently and we just have to “rock” what God gives us!

We are so blessed to be his parents and keep pointing his mind in that direction.

“You made all the delicate, inner parts of my body and knit me together in my mother’s womb.” – Psalm 139:13

– guest post by Stacie: email || Facebook

Find My Family: Jacob

November 20, 2017 1 Comments

Jacob is a handsome boy who recently turned seven years old, but just had his file prepared for adoption this year. He likely would have matched immediately had his file not listed the wording it does in the diagnosis section. But as you read through his file, you begin to notice a trend of improvement over the years, from 2 1/2, when he came into care, until he turned six.

Jacob is currently attending kindergarten. He is said to be mild tempered, kind, polite to others, and a very popular child. Jacob actively greets others and has good gross and fine motor skills. He has no issues with walking, running, going up and down stairs, jumping in place, etc. and he loves any sort of ball related sport.

Jacob has good pencil grip and can imitate drawing shapes and lines. He can identify colors and shapes. Jacob has a good sense for music and likes listening to it. He likes to imitate the dance moves he sees on tv and can sing simple children’s songs. With the help of a professional teacher, he can now play some simple drums and he is learning how to play a cucurbit flute. The staff feel he will be able to give a flute performance soon.

The head of adoption in China has asked that we work very hard to find him a family. They said he is a bit delayed compared to a child in a regular family, but that he’s doing quite well and that he is very cute and has good interactions with people.

Jacob can listen to and describe a simple picture book, recognize numbers through 20, and can count to 100 with a little help. He recognizes what common objects are and knows their use. Jacob is also independent with his care. He can eat, toilet, dress and undress, brush teeth, and wash his face on his own. He can clean up after himself and others. He has good manners and good hygiene.

Jacob is loving and likes hugs, playing with others, helping others, and sharing. He rarely needs help, but will ask for help if he needs it. He can describe things that happened concisely.

Jacob really is a wonderful boy who had delays when he came into care, but who has caught up. He needs a family that can look past the diagnosis in his file and see how far he’s come and the child he is today because some lucky family is going to be blessed by this healthy and happy little boy!

New video can be found here, password is Adoptmaa.

New update from September 25th, 2017:

1. How is his mental ability compared to other kids his age?

Compared to normal kids, his cognitive ability is about 5 years old, language ability is about 5 years old, and his motor skills are normal. His self care skills are normal.

2. How does his special need affect his health?

He is healthy – rarely gets sick.

3. Is he potty trained?

He is potty trained.

4. Describe his personality in details.

He is mild in nature, rarely gets mad, and gets along well with other kids.

5. Is he obedient and well-behaved?

He has not been found to have any misbehavior.

6. How are his gross motor skills? Can he walk, run, jump, and go upstairs and downstairs?

His gross motor skills are normal. He can walk, run, jump, and can go upstairs and downstairs by himself. He has not been found to have limitations.

7. How are his fine motor skills? Can he draw or scribble? Can he pick-up small objects with his fingers?

His fine motor skills are at about a 4 years old level. He can scribble and can pick up tiny things. He has no limitations.

8. Does he attend school? If so, how does he do there?

He is in senior class in a normal kindergarten. His learning ability is behind normal kids and he is working hard to improve.

9. How is his emotional development? Is he attached to a certain person? Does he care for others?

His emotional development is about 4 years old. He is not attached to a particular person, but cares about others.

10. How are his social skills? Does he get along well with other children and with adults?

Fine. He greets people he knows. He gets along well with others.

11. Does he live in the orphanage or in a foster family?

He has always lived in the orphanage and has never been in foster care.

12. Updated Measurements:

Height: 128 cm
Weight: 28 kg
Head: 52 cm
Chest: 63 cm
Foot length: 19 cm
Number of teeth: 24

13. How are his language abilities compared to other children his age? Does he speak in 1 word, 2 word, and multiple words sentences? Is his language clear and easy to understand?

His language ability is at about 5 years old. He can say complete sentences. He can express his needs and wishes clearly. He can describe what he has experienced and can describe picture books. His language ability is behind other kids his age.

14. Can he follow directions?

Yes, he can follow directions.

15. Is he on any medication?

No, he is not on any medicine.

16. What is his daily schedule like?

Monday to Friday, he gets up at 6:00 am, gets clean, and eats breakfast. He goes to school at 7:50 am (he goes to kindergarten), goes home at 4:00 pm, has dinner at 5:00 pm, goes to bed at 8:00 pm. Saturday and Sunday, he gets up at 6:00 am, has breakfast, has free time from 8:30 am to 11:00 am, lunch at 11:00, nap from 12:00 pm to 2:00 pm, has free time from 2:00 pm to 5:00 pm, dinner at 5:00 pm, and goes to bed at 8:00 pm

17. Is he a good eater? What does he eat and does he use a spoon, chopsticks, or a bottle?

He eats well and is not picky about food. He eats normal food with a spoon and occasionally with chopsticks.

18. Does he know any English?

He does not know English.

19. Does he understand adoption and does he want to be adopted?

He wants to be adopted. He wants to have his own parents. The orphanage staff will teach him what adoption means.

20. What is his favorite color?

He likes all colors.

21. What does he like to do for a hobby or for fun?

He likes group activities and outdoor activities. He likes going to the zoo or botanical garden with other kids.

22. What are his favorite toys?

He likes blocks and toy cars.

Jacob is listed with Madison Adoption Associates. There is a $2,000 agency grant for Jacob’s adoption with Madison Adoption Associates. MAA is offering a special $1,000 grant between Nov. 1st and December 31st, 2017 for families that sign on and contract during that time period for any waiting child! 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 are officially matched with a child.

If you are interested in reviewing Jacob’s file or in adopting Jacob, please fill out a free PAP Waiting Child Review Form, which can be found here.


November 19, 2017 5 Comments

We are not the poster children for adoption. Our process was so different from many of the moms I followed on facebook that I shut by computer one day and walked away from it, determined to not check in again until things were going better.

That resolve lasted approximately 4 days and then I was so desperate for solidarity that I logged on and poured out. And those mamas and babas who appeared on facebook like this adoption thing was all family pictures and giant hair bows, they were struggling too.

It is the trickiest sort of balancing act, deciding how much of the hard to tell. Because there is so much hard. So so much good too, but golly… the hard.

Our Maggie came home at 2 1/2, severely malnourished and with an unrepaired cleft palate. Her adjustment was textbook. It took her a couple weeks to smile, a couple months to laugh and the first time she rolled over in her crib during the night, I stood next to her, moonlight reflecting off her polkadot sheets and wept. She was easy.

But she taught me how very selfish I’d become with my time. Having a totally dependent baby after years of not, tweaked my nose.

But we muscled through and it was sweet.

Our Abe came home a scant 11 months later at 4 years old and it like to have killed me. Can I say that?

He screamed from sun up to sun down, raging in response to the fear he was drowning in. He spoke no english; we spoke little mandarin. The only language we had in common was emotion, even if he spoke it through rage and I through silent tears cried in my closet after he went to bed.

The hardest day I remember was 6 months after he came home. My dearest friend had stopped by, reading desperation and isolation between the lines of my texts. She sat in my hard and made me feel like maybe this wouldn’t kill us. Maybe not today, at least. She helped me swaddle Abe in a blanket to contain his thrashing arms and legs, sad boy finally giving up his fight and drifting off, a sweaty, hiccuping mess in my arms. And then I laid there, boy on top, and wept silent tears as my friend prayed over me.

She was one of about 6 people we let in to our mess during that hard season. We felt so protective of Abe, so wounded ourselves. We had nothing left to give to anyone else.

My dad, upon witnessing Abe’s rage one day, called me in tears and said this, “Honey, no one can do what you are doing forever. It’s just not sustainable. I’m so sorry I haven’t stepped in. You said it’s been rough, but I had no idea. Just no idea. If you text me the word HELP, I will drop whatever I’m doing, wherever I’m doing it and come. I can hold him and listen to his cries just as well as you can. You need to catch your breath.” Such a gift. And, while I never did text our word to him, I felt bolstered just by its very possibility.

And that ridiculously hard season gave way to an easier season. Is giving way still.

But how to possibly write about the hard? And so you stay silent, letting a few in because that’s how you survive. You censor every word of every update, certain the wrong words will sway someone against going. And, despite the heart wrenching hardness of it, you still believe in that mission more than almost any other. Believe with every weary fiber that those babies over there and in our own backyard deserve forever families and if you don’t go, then who?

Which is why your village will become your oxygen mask. Village and Father, couldn’t do it without either of them. Because they are the ones who will help you see the today-ness of it all when you are mired down in the tomorrows. They will speak hope and love into your battered heart. Will remind you that this work you are called to is holy and that you are being lovingly held by the Father who called you to it.

If you don’t have a village, get yourself one ASAP. I’d be honored to be part of it if you don’t have one readily available. Confide in the strong few on even your darkest days, in which you find yourself in your bathroom, chest heaving and whispering under your breath, “I can’t do this. I can’t do this. I can’t do this.” You can and you will and it will be ok.

Adoption is a beast and sometimes you will feel devoured by it and sometimes you will take it for a walk.
Because you are so capable.
Because He is so capable.

Oh, and consequently, our Abe is the sweetest boy now, two and a half years later. We are falling in love with him more with each month. It took all of two years and he still pushes every blessed button some days, but he is ours and we are his and nothing else matters than that. And so I stand next to his bed, watching his chest rise and fall and I marvel at how easily we could have missed this.

And I pray that I never with my words make adoption seem too hard, even when it feels like it is, because aside from my marriage to my high school sweetheart, this is the best yes I’ve ever said.

Let it be yours too.

– guest post by Megan

What to Expect When You Adopt

November 16, 2017 2 Comments

When You Adopt, Expect… Your knees to be rubbed raw from time knelt in prayer. That every step of the way, God has something to say, if you’ll only still yourself to listen. That if He is asking you to wait, it is intentional. That your adoption story will be completely unique from everyone else’s, …Read More

Pulled in Two Directions

November 14, 2017 0 Comments

The day we met our son is a day that we still remember like it was yesterday, and yet sometimes forget because it’s hard to believe that he hasn’t been with us forever. The anticipation and excitement of that moment juxtaposed with the deep grief of him saying goodbye to all he knew, his safety …Read More

A Life Donated: Part 17 and an Epilogue

November 13, 2017 4 Comments

Rini, our youngest of six children, was adopted in August of 2013 at end stage heart failure stemming from complex, single ventricle congenital heart disease. She was admitted to the hospital immediately upon arrival home and within two weeks it was determined that she was inoperable, her only hope would come through cardiac transplant. She …Read More

Doubly Blessed by PWS (Prader-Willi Syndrome)

November 12, 2017 0 Comments

Hi, I’m Kallie. I am married to David, and we have two precious sons through adoption, Jahleel and Camden. Jahleel is five and a half years old and Camden is three and a half. Camden just came home from China this past spring. Both our boys have diagnoses of Prader-Willi syndrome (PWS), but they present …Read More

Amazing Grace: Was Blind, But Now We See

November 11, 2017 3 Comments

Blind. I immediately recoiled. We had checked a lot of things on our medical conditions checklist, and I remember vision being one of them, but blind? How could we deal with that? I studied art history and archaeology in college, and work in a very visual field. How could I share the most important and …Read More

We Needed Him

November 10, 2017 3 Comments

One year. I still can’t believe it’s been an entire year since Brooks became ours… One year since a tiny, pale, very sick little boy reached for two strangers in a musty Chinese conference room. One year as a family of five. One year of learning and adapting and fighting for a little boy born …Read More

The Waiting Place

November 9, 2017 1 Comments

You can get so confused that you’ll start in to race down long and wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear, toward a most useless place. The Waiting Place… …for people just waiting. – Dr. Seuss /// I was a soon-to-be graduating senior when …Read More

© 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.