All posts by Kristen

Looking back and ahead

Just a few days left in 2017 and what a year it has been. 2018 will start off equally, if not more, intense for us. The blog may go quiet for awhile as I try to stay focused and keep the priorities straight. I hope that in the meantime, some of the new content I put together in the main pages will be helpful and encouraging to those who are considering adoption or in process. Here’s a quick snapshot of where we’ve been and where we’re going…

2017

6 months of adoption paperwork and preparing for Emily, 1 trip to China, 1 new daughter!

6 surgeries between James and Emily. 5 inpatient and 1 outpatient. More therapy and doctor and orthodontist appointments than I can count between all four kids, but because I have to report our out of pocket medical expenses I’ve had to create a multiple Excel spreadsheets to track mileage and visits and co-pays so I do know that we’ve accumulated close to 6000 miles just in medical driving travel.

6 months of homeschooling and now 3.5 months at a Montessori school for Andrew that is absolutely amazing! We are so thankful he is part of this school – it’s the perfect environment for him. Travel soccer in the spring, now taking a break from extracurricular activities but busy with all things building and creating – paper airplanes, legos, Minecraft, anything he can get his hands on.

6 months of Pre-K 4 in an integrated classroom, and now 3.5 months of Kindergarten in a Gen Ed classroom with a 1:1 aide and James is thriving!

6 months of a really tough 5th grade, and now 3.5 months of a muuuuch better 6th grade for Gabi 🙂 Spring voice lessons, summer musical theater program, fall acting troupe, and volunteering at church kept her busy.

Next week is 6 months since Emily became our daughter. She has added great joy and light to our lives and we are so thankful for all of the progress she’s made in so many ways.

2018 will kick off with a weekly schedule that includes 3 standing therapy appointments at our great therapy center but it is a 40 minute drive one way. Every Wednesday in January and likely into February, I’ll be taking Emily to Delaware for the serial casting on her clubbed foot and James will be seen alternately there and in Baltimore twice a month for X-rays and check ups on the progress of his spatial frame fixator which is daily turned to create straightening and lengthening of his right ulna bone. Emily has two intense days of testing in early January to follow up on how she’s doing post-op. Pending those results, we’ll adjust her daily meds and plan for future procedures.

We are anticipating some changes to Kevin’s job which will increase his travel significantly early in the year, and also bring us new insurance in the spring which will increase our out of pocket expenses significantly. We’re hopeful that this new position will bring the kind of salary increase that will cover these increased medical costs and the cost of Andrew’s tuition for another year at the Montessori school where he is flourishing. It’s been a huge relief to see him doing so well in school as the public school system could not provide the kind of accommodations he needs and continuing to homeschool wasn’t an option. He really needs to stay at this school so we are praying this will provide the funding. We only had enough money to get him through this first year.

I will be starting a very limited freelance communications job with an adoption agency that I really believe in and am excited to support with my skills and experience. I think it will be mutually beneficial in helping them to continue to grow in serving families and children, while allowing me an outlet for my passion and the chance to keep my skills sharp. If needed, I may have to take on a second part-time job this summer and beyond to cover Andrew’s tuition. But, we are hopeful for a summer that will allow us to really scale back on medical appointments so that we can enjoy some downtime with day trips to the beach and visiting family and friends!

May you have a blessed and Happy New Year!

The Questions Prospective Adoptive Parents Really Need to Ask

Like many of you, most of my initial questions were process-centered. What we quickly learned was that our most important questions needed to be family-centered. Meaning, we needed to do the hard work of learning about the trauma our child had experienced, its impacts both now and in the future, what that would mean for us to parent a child from a hard place, and what it would mean for our entire family to become and live “trauma informed.”

So, while the process questions ARE absolutely important, here are the top five questions I believe every Prospective Adoptive Parent (PAP) should really be asking and answering as soon as possible in their adoption journey, but often aren’t…

  1. Expectations: What are my expectations for parenting a child I have adopted? How will they be the same or different from my biological children and why do I believe that? Do these expectations line up with what experienced adoptive parents and trauma informed experts say? Where do I need to adjust my expectations? What are my expectations of myself? What will we do if we arrive in country and we find a very different child than the one we expected? This. Is a big one…Disruption happens way too often and is something every internationally adopting family has got to really process through and consider very early on.
  2. Education: What will I do to educate myself on parenting a child from a hard place? What do I need to learn about evaluating my own attachment style and how my own family of origin influences the type of parent I am? What is my plan for learning more about attachment, bonding, trauma, child development, self-care, language development (if applicable), sensory processing needs, and family transitions…just a few of the key topics that every PAP needs to be educated about. Click here for a list of some of the best resources out there.
  3. Encouragement: What resources and supports are available to me, my spouse, my other children and my new child as we go through this process of becoming a family, and helping our child heal from the losses and trauma they’ve experienced? You’ll need to research your local options for trauma informed attachment therapists, therapists and medical experts related to any specific medical needs, local adoption support groups or other networks of families that you can connect with on a regular basis. (If you’re in Central NJ like us, check out Miriam’s Heart!)
  4. Evaluation: Who are the wise and trusted, objective people in our lives that we can consult with regarding our decision to adopt? How will we evaluate our capacity to manage the possible medical and developmental needs of the child we are considering being matched with?  Who will we allow to speak truth into our lives so we can become more self-aware, connected parents and spouses? Do I know how to properly evaluate and assess the warning signs of parental and marriage burnout that are so common in adoptive families? And if so, have I done incorporated resources to respond to this into my Education and Encouragement piece?
  5. Empowerment: Adoptive families come from a variety of faith and religious backgrounds, and that is okay. Speaking from my own experience however, I can tell you that the challenges, and blessings, that come from adoption are not possible to handle within myself. Even surrounded by all of the “right answers” for the four areas above, you will need a power outside of yourself. A power that is responsible for the creation of every individual and which ordains the details and events of every life. Adoption is born from loss. We are not plan A for our children. By God’s grace we strive to be the best possible Plan B. He redeems and restores what is broken. He heals, and he carries us all in our pain. He strengthens our weary hands and feet, for unconditional love does not come easily. We are ordinary, flawed, weak people. We stepped way outside our comfort zone and we continue to learn and grow being changed daily by the mercy of God to better show His love and salvation to those around us. We need him desperately, and we thank Him for every provision He has given in this journey. Perhaps as you walk into this journey you will find yourself with a renewed sense of your own need for God, for faith in something greater than yourself. Seek Him and He will meet you. He is faithful to answer, to provide and to guide.

 

Thankful Thursday

1. James is doing really well this evening! Surgery was successful, no severe skin blisters like last time, blood draw was very painful but they got it done, nausea is gone, and he perked up so much tonight after a long afternoon nap and a visit from family including one of his favorite cousins. We should be discharged tomorrow to go to stay with family locally.
 
2. Emily’s weekly PT will overlap with James’ weekly OT at the same facility!! This is a big deal because it’s a 40 minute drive to therapy and it makes all the difference to consolidate trips when you’re managing two kids with a variety of appointments, and three kids in different schools with different daily schedules and 2 year old who still really needs her daily nap.
 
2. Emily’s next round of multiple tests and appointments will be consolidated into two days (MRI, urodynamics and club foot casting plus 2 clinic appts) and we can have James’ X-rays done there. Request to RM House is already in 🙂
 
3. Child Life threw a holiday party today that had me fighting tears because I was feeling cared for and supported after an intense morning of blood work, vomiting and a finger splint that James could only tolerate with Valium initially.
 
4. My baby girl and her Daddy are bonding on a whole new level which is worth the sacrifice of missing her so badly.
 
5. My kids were surprised by a wonderful gift basket from anonymous friends honoring St. Nicholas Day, a friend is dropping off a huge bag of Costco dumplings for James tomorrow (his welcome home comfort food) and on Monday a neighbor friend is bringing dinner so I don’t have to try to make that happen as soon as we get home from Maryland.

Round 2

We met with James’ surgeon in Baltimore last week for his 3 month follow up on his left arm and hand, and to discuss the surgical options for his right arm and hand. I had been concerned since his cast came off that his hand seemed to be puffy and swollen continually, and that he was not gaining the flexibility in his wrist range of motion that we expected. It turns out that my concerns were valid and there are a couple of things happening in left hand that will be addressed through splinting, possible minor revision surgeries in the future and monitoring things. His case is especially difficult because of how the severity of his radial aplaysia (Type IV) and his age at the time of surgery. Most children in the U.S. have this done as young toddlers. Basically his ulna bone and the wrist bones (or carpals) are not staying aligned as they should. The ulna is perfectly in place to keep his hand from regressing back to a clubbed position. But that wrist joint area is struggling. The soft tissues are still healing, hence the puffiness, and the bone to his new thumb is actually overgrowing some impacting range of motion in that finger which we want to be in an oppositional pincer grasp with the index finger as much as possible. The contractures in his fingers add another layer of complexity to the case. What this did do however, is confirm that we needed to go with a different approach for the other hand/arm.

His right hand actually has a natural joint that has formed on its own between the carpals and the ulna. Given what’s happening on the left side, it’s clear that we need to utilize that joint and not disrupt it with a traditional Ulnarization procedure. So, the Ulna will actually be broken completely just a little below the wrist, and then rotated several degrees to set it up to eventually be a 90 degree turn, thereby straightening the position of the hand and arm while still getting the ulna into the position that will allow it to prevent the hand from turning in again. The tough part is that this is a much harder recovery. It will require six months in the external fixator with a lot of turns at first and extra X-ray follow up appointments. It will be much more painful as the bone has been broken and the turns always cause a lot of nerve pain. We are hopeful that he will also get a little bit of length from this procedure as the right arm is slightly shorter than the left and of course both are shorter than a typically developing arm.

Because of the longer and more intense recovery time, we wanted to get the surgery done asap so that he could be fixator free for the summer. (We are going to hold off on any procedures on his fingers on the left hand until at least next fall.) But we also have to start Emily’s serial casting which means weekly trips to Delaware in January, so we were really hoping we could do it before then. We got word yesterday that they have scheduled him for December 6th! It’s good timing in that he can get through the initial weeks and enjoy Christmas, and since his surgeon and the orthopedic doing Emily’s leg have a good relationship he is fine with having some of James’ X-rays done there when she’s already scheduled for a visit to help us consolidate trips.

Kevin will stay home with the other three kids this time and it will just be James and I. We’re hopeful to just be inpatient two nights and get home asap. His spirits really lifted last time once he got home and the distraction from the pain was good for him. I wish he didn’t have to go through all of this, and in many ways it’s daunting knowing what is ahead in terms of the extra assistance he’ll need with daily activities, his pin care and treating likely pin site infections, but I’m also glad to get going because we are ready to have these big surgeries behind us and we can look forward to a fun summer together!

I still can’t believe it.

It’s truly miraculous to me. Two weeks ago, the surgeon made an almost five inch incision down her back. Through all the layers, de-bulking a lipoma (benign fatty tumor) and de-tethering her spinal cord so it could move freely in the spinal column. Shifting her lower spine back into place, and putting the spine back together. This delicate work required meticulous concentration so as not to create further nerve damage. A neurophysiologist monitored nerves throughout her body with tiny needles placed in her feet, skull and other places. Ultimately, the lipoma could not be fully removed. They got as much as they could with the precision of a laser. Over four hours later, they closed her up with meticulous internal stitches and sealed it shut with Derma Bond, and brought her back to us.

Infection, spinal fluid leak, nerve damage…the potential complications and risks were truly scary. How would we keep her laying flat for 48 hours post-op? Would she be in awful pain? How would we know – she has such little language and communicating about pain is really hard. What if we went all the way home and THEN she got an infection? What if the concern they had about possible new nerve damage in her left foot meant we’d now have two feet requiring treatment? What if her bowel/bladder issues got worse after this?

Two weeks later and I am in in total and complete AWE of the healing God has allowed for Emily. Her incision site is stunning to me. I don’t think they could have done it any better if they’d had the best plastic surgeon in that OR. Not only has it healed without any complications, but it’s healing in a way should leave a very minimal scar. To look at it, you would think the surgery was several weeks ago. We are so incredibly grateful. The surgeon, and all the doctors did an amazing job. She’s done so well, we didn’t have to go back down for the scheduled follow up appointment this week!

The other procedures yielded good news overall. She’ll need some additional urological procedures in the future, but some of the “worst case” scenarios were ruled out!

She will have a follow up MRI and Urodynamics in late January/early February. She begins weekly serial casting of her club foot January 3rd which should continue for about 6 weeks. We had hoped to start this right away, but after her surgery was delayed two weeks, we orthopedist doesn’t have availability until January. In the meantime, she has a PT evaluation in early December and we’ll have to repeat some blood work to rule out a couple of things that flagged in the first round. Nothing we’re significantly concerned about, but need to rule out.

It is a relief to have this surgery behind us. To have the unknowns answered and to see her almost totally back to herself is truly unexpected. I was honestly prepared for a lot longer recovery and to have at least of the common complications. I look at her back, I watch her move, and I still can’t believe it. She’s incredibly strong, we are incredibly blessed, and God is so gracious.

Milestones

It’s November 2, 2017 which means it’s been exactly two years since we met James and he became our son! Happy Family Day sweet boy!

James has changed physically and emotionally in numerous ways. He’s several inches taller and several pounds heavier and he’s flourishing in Kindergarten. He’s receiving OT services at school and privately to help him as he rehabs from the major arm/hand surgeries he’s undergone this year. We will see his surgeon next week for his 3 month follow up, and to discuss and plan for the next round of surgeries for his right hand which we hope to start in January. The hardest part is retraining his brain to use his fingers in a new way, and trying to overcome the challenges of the contractions in his finger joints. They are considered “moderate” but they impact his strength and range of motion pretty significantly.

James loves to play with Andrew these days. They are constantly building and playing with Legos, Nerf Guns and Minecraft. He loves to play and read about policemen and firemen and loves to sit and just look at books. He’s eager to draw pictures thanks to an amazing art teacher at his school who motivates and empowers the kids to feel confident in their abilities regardless of their skill level. He’s done much better with making friends this year and has one friend in particular at school that he has really connected with and talks about often. It’s such a joy to see his confidence grow and social skills develop.

James will be SIX next week!! He was such a little boy, almost like a toddler, when we met him. But he has truly blossomed into this little boy who is growing up so quickly!

Milestone #2 – 

Tomorrow, November 3rd, marks four months since we met Emily and she became our daughter!

A week ago today she had surgery to remove a good portion of her lypomyleomeningocele, release her spinal cord which was being tethered down by this lypo, and then put her spine back together. The Lypo is a benign fatty tumor that formed in utero after the disruption of the formation of her spinal cord so it’s a form of spina bifida. The neurosurgeon lasered off the fatty tissue as much as possible, but there are a lot of nerves emeshed in it and so he couldn’t remove it all without risking further nerve damage. A neurophysiologist was monitoring and tracking nerves throughout her body during the surgery and they did note some minor impact to her left foot. It’s concerning in the sense that her left leg and foot are her strong one (her right foot is clubbed and the muscle in her right leg is almost entirely atrophied right now) but so far we are not seeing major symptoms. She does complain of pain from time to time in her feet and she is still very newly post-op so it’s hard to know if some of her mobility struggles right now are related to that or her back healing. But overall the surgery went very well and her incision is healing well. We just have to keep it clean and monitor it for infection or spinal fluid leaks. She handled the 48 hours  flat post-op so much better than we expected. We pushed to schedule her on Morphine right out of the OR as we knew she doesn’t have the language to communicate about her pain levels and location. She slept for almost the entire day after her surgery. By Sunday she was sooo ready to go home, but her body wasn’t. She couldn’t bear weight to walk on her on in the morning, so the team said one more day. We worked with an acute PT and got her going and by Monday morning she was ready!

 

 

 

 

 

 

 

 

We have to watch her carefully at home. She needs assistance sometimes and definitely fatigues easily. She’s been taking long naps and prefers to sit most of the time. She can’t “scoot” like she used to, or bend over to pick things up or get up from a squat position without holding on to something and grimacing. She’s as determined as ever though. We hope to get her in for a PT eval soon and start that on a weekly basis ASAP. We’re also sorting out next steps for treating her club foot with the Ponsetti method which involves serial casting for about 6 weeks and wearing a pretty intrusive bracing device overnight for several months. It’s our goal to have everyone cast free for next summer so we can enjoy the beach and swimming as much as possible.

I had really wanted to blog while in the hospital to continue my “Bedside Reflections” series, but unfortunately I accidentally left my laptop at home. But I want to share this briefly…

Emily is really scared of doctors and nurses. She cries as soon as they come into the room and gets really upset. Like every. single. time. Doesn’t matter if it’s a routine office visit, or an aide just trying to take vitals in the middle of the night while she’s sleeping. Just when I thought she’d settled, she’d hear the velcro of the blood pressure cuff and she’d start crying again. And in some ways I don’t blame her. All these strangers, all wanting to touch her and talk about her. No. fun. But we had one nurse who decided to go above and beyond. To not just tolerate it or try to “stay away” and not make her upset. She recognized her fear, recognized that she has more medical stuff ahead of her, and she took responsibility for Emily’s feelings about medical staff and started being really intentional about winning her over. She was creative and playful and engaging without overwhelming her. For example, she recognized that the gloves were an object of fear. So she made a funny face balloon out of them and turned them into something fun. She then advocated for her with all the other staff and got Child Life involved to help make things fun. From then on, every person who came in knew that they need to put in some extra effort to help our girl not feel so afraid. And it was such a gift. Such a relief. It didn’t take long, and didn’t take much, before Emily was clearly willing to offer some trust and pretty soon her whole demeanor around this nurse changed, and she started to let down her guard with the other nurses and aides too. This nurse, Carol, was a blessing to us and I’m so thankful for her wisdom and concern, and frankly – her ownership of her patient. She saw beyond the diagnoses and charts and med schedule, and she saw our girl and she didn’t run away in her own fear of not knowing what to do with a child that cried every time she walked in the room. She fought for her trust and she earned it. And in doing so, she encouraged me to speak up to future medical staff and push them to do the same. Because yes, it’s asking more. And yes, her medical stuff is the priority. But her emotional well-being is equally as important and since we’re not going to be strangers to medical staff, it’s important she feel as okay as possible about it all. Nurse Carol has set the bar high and I hope to hold others to it going forward. A huge thanks to ALL nurses for your kindness, strength and perseverance in what is often a difficult and thankless job.

 

 

3 months home

We haven’t publicly shared pictures from our “gotcha day” time with Emily. We shared pictures and video with James because, well, it went really smoothly. He was definitely nervous and unsure, but he held his emotions very tightly and came right to us with a cry of “Mama” “Baba”. Emily on the other hand, was terrified. She’d been cared for very, very well by her nannies. She had a particular nanny that was her favorite who she was very attached to. She had also lost those nannies once already when she was taken to Beijing for surgery. We learned that she’d actually been in the Beijing care home for 6 months. And while there she had a nanny that lovingly cared for her. That attachment was disrupted in April when she was returned to her orphanage and she connected again to her caregivers there. So, to be disrupted from them again was purely terrifying for her. And of course it would be! We were total strangers – we looked, smelled, and sounded different and confusing in every way. It killed us to see her so scared and hurting. We all cried that day. I will never forget the moment when that little bottle of water I’d brought along, finally gave her a moment’s rest from her grieving and she allowed me to hold her close as I’d longed to do for months. The feeling of her close and relaxed in my comfort is still visceral memory. But it’s a moment we’ll keep private to our family because the videos and pictures are still painful to see. Still an all too vivid reminder of her loss, of the pain involved in her story to that point. Which is why it is so amazing to take in the child she is today. It’s truly difficult to try to quantify or describe the healing that has come. The little one that cried in fear when her own Daddy walked in the hotel room because she was afraid he would take her from her new Mommy, now squeals with delight when he walks in the door, yelling “baba! baba!” and wanting so badly to crawl all over him on the floor in fits of giggles. The little one that would cry out in terror when I left the room is happy to play with her siblings, chase the dog around, or explore independently knowing her Mama will be there to meet her needs when she needs her.

Every child’s journey of healing is uniquely crafted by God, the restorer and redeemer of all things. Emily’s journey is very, very different from James’. On the hard days, God alone is our Hope because He alone has the power to work this healing. He uses us, but it’s only by His grace and strength that it happens. But healing does come. Change does happen. We hold steadfast to this Hope.

Some fun “firsts” and milestones over the past three months:

  • First plane ride and several car trips to Philly, Scranton, Baltimore and Wilmington for medical appointments and family visits.
  • Several English words – “Flash” (pronounced as waaash”), shoes, hi, bye-bye, nigh-night, car, down (sort of – more like “dow”), book (the ‘k’ isn’t so clear), car, James (pronounced like “Jame), Mama, Baba/Dada, peas (for pLease) and just today she’s trying to say “more-ning”
  • A lot of first foods – her favorites right now are yogurt, eggs, oatmeal, carrots, crackers and sausage.
  • A new AFO for her club foot!
  • 3 new daily medicines for bladder/bowel management that are working well so far
  • First time to the beach and a park playground
  • Going to the church nursery each week (with me staying around still)
  • Playing with Play-doh, play food and dishes, and magnetic puzzles
  • Discovering the fun of bubble baths and swimming pools!

Emily’s surgery is 2 weeks from Thursday. We’d be so grateful for your prayers as we prepare for our hospital stay and post-op days at home, and prepare the home and kids for staying here with their Mimi and Aunt. New family pictures to come soon!