Category Archives: Child Updates

Adoption Update

Hi everyone! It’s been awhile since we updated, so here’s a quick word on what’s happening around here…

Tomorrow marks Day 30 of our wait for our Letter of Acceptance from China. The average wait right now is about 42 days so we expect to receive our letter in 2 weeks or less! Wow! Unlike last time, it feels like time is passing quickly this time. Our days are just very busy and full and for that I am grateful because it makes it a little easier when we already miss our girl and are so eager to hold her and get her home.  But it also means that we have some paperwork to prep – Gabi’s Visa prep, our final US immigration paperwork, and a POA document that allows one parent to complete the adoption in China even if the other parent can’t be there for some unknown last minute emergency (this has actually happened to some families in the past so it’s always best to be prepared) and that document has to be processed like our other dossier documents – notary, state certify, consulate authenticate.

It also means that when that document comes in we are just about 2 months from travel – YAY!!!

We got a brief update on Emily earlier this week giving us her current measurements, feeding & nap schedule, number of teeth, etc. It’s unclear at this point whether she’s returned to her child institution or if she’s still in the care home where she’s been since her surgery in December. Our agency is trying to get confirmation of this. I will be honest…I am struggling with this right now. I can’t describe what it feels like to not know where your child is. Even if you know that either option is an okay one, it’s not a good feeling. In this update they shared that her foot is still in a brace of some kind pretty much 24/7. That was surprising, but we are optimistic it’s just them doing the best they can with what they know to help her walk. But, as her Mommy and Daddy it’s hard to be here not knowing if she’s truly okay. It’s been really different this time around – with James we knew where he was and we knew it was not a well resourced or very pleasant place to be. But we knew where he was and that he was medically fine other than his limb difference. This time, we have a child waiting for us that is in a better environment, but has more medical needs and we are feeling a different kind of anticipation. We also know all that lies ahead in terms of the final preparations. It’s a lot of paperwork and prep to leave the country for that long, and to make sure the children you leave behind have everything they need, and that you’ve setup as much as possible for when you return…yea – could there be a fairy that comes and does all that for me?  🙂  I’d like to just pick up an already packed suitcase, get on the plane, and sleep all the way to China – haha.

Of course, the other big component of this is the financial side. Believe it or not, we’re only about halfway through all of our fees and bills so far. The travel costs and the orphanage “donation” are a huge part of the costs, so we’re getting ready to launch our final fundraisers and also researching loan options. We’re also working on the final big ticket items we need to purchase to be ready for our new little toddler – stroller and video monitor – and the smaller items like bibs, toys, crib sheets, and sippy cups.

On a different and much more exciting note, our friends who are in process to adopt Ping Ping are finally DTC! After so many delays from government offices, their paperwork officially went to China yesterday! We are hoping that she and James will be reunited in August!

That’s all for now – stay tuned for the next post announcing the launch of Gabi’s fundraiser for her trip to China to meet Emily!

James Update

James will be 6 weeks post-op on Wednesday. Overall, things have gone well in his recovery, healing and rehab therapy. The external fixator frame will be on for several more weeks and during that time our primary task is to keep the arm clean, the incision places stable as they heal, and to stretch and massage his fingers and arm three times a day to increase flexibility, range of motion and strength. He also does some exercises to make sure his upper arm and shoulder area remains strong. We’ve been doing therapy with his OT once a week but we’re going to go twice for the next few weeks because she does such a great job working with him and he needs a little extra help right now.

Pin site infections are very common with external fixators. The surgeon sent us home with an antibiotic prescription with three refills – that’s how common they are. We saw some of the signs of an infection developing this weekend and last night we started the antibiotic. This morning his OT confirmed that he definitely has an infection going on. So, please pray for swift healing and comfort. It limits what we can do in terms of the therapy because he is so sensitive right now. Thankfully he’s not showing signs of high pain or fever.

James had the additional complication of significant blistering immediately after surgery. Basically, his vascular system could not absorb all of the swelling so it pushed up through the top layers of the skin. The largest and deepest one was on top of his forearm, but the entire incision line along his wrist blistered and there were multiple other spots as well. Initially it was rough because they were big and fluid filled. But they have dried up, and scabbed and are pretty stabilized. A couple of the little scabs have fallen off. I treat them with betadine “painting” daily to try to prevent infection. It’s likely there will be some scarring. The infection has caused renewed swelling and his OT saw a couple of places where new little blisters are forming. It seems his vascular system functionality is just on the weaker side for these types of issues and this is in line with something called TAR syndrome. TAR stands for Thrombocytopenia Absent Radius Syndrome. It’s a genetic syndrome and James has several signs of it – completely absent radius bones, but thumbs present, lactose intolerant, frequent nosebleeds, weakened vascular system. Low platelets are also common, but many kids grow out of that and James has not had an issue with that. We saw a pediatric geneticist in January to begin the process of testing. Our insurance company initially denied coverage for the testing. Another China adoptive mama whose daughter is from the same province as James, and has the same condition, told me about a lab that covered the testing for their daughter. The geneticist’s staff reached out to that lab and they are going to cover the testing for James! However this does mean another blood draw. We had hoped to do it concurrent with his next round of post-op bloodwork in the hospital, but they barely got enough to do what they needed for the routine post-op stuff, so there wouldn’t be enough for this test too. It barely filled two infant size vials. So we are going to arrange to go back to the PICU nurse at the children’s hospital nearby and we’re hoping Child Life will help us get the vascular team to come in with their ultrasound so they can help the nurse locate a good vein and get it over as quickly as possible. It took three adults to hold him down last time and it was still a struggle. You can imagine the trauma that is for him.

We are headed back to Baltimore this week to see his surgeon for X-rays and a checkup. We have been turning the bolts on his fixator frame one full millimeter every other day. Essentially, this is stretching the frame and his soft tissues out so that the bottom of the wrist bones and the top of the ulna bone get aligned properly. The wrist bones settled back a little too far down the ulna which is very common with children who don’t have this surgery until they are older. It would’ve been less likely if he’d had it done as a toddler. This has contributed to some of his nerve discomfort and needing to take Oxy Codone each night to sleep. We’re hopeful that things are in place now so we can discontinue the turns and that he’ll feel less discomfort in the weeks to come.

If you stuck around long enough to read all the way to the end – thank you! I know this was long 🙂  Thanks for your prayers and support. We look forward to sharing a picture when his arm is all healed up. For now, we are grateful for how far he has come and what a trooper he has been in handling this tough stuff. We are excited for the day when the frame and the final cast come off and he can enjoy working with his new arm and hand!

 

She’s walking!

I knew it would happen. Another milestone we’d miss. Another piece of her earliest days we’d see only in glimpses from videos and pictures, but to see her actually walking literally took my breath away. I am so, so, so happy for her and yet a part of me aches that it wasn’t Kevin and I holding her hand and cheering her on. We are ready to give her a lifetime of cheering and encouraging and praising as she hits more milestones, faces new challenges, and tackles any opportunity God brings her way. As God places her into our family, and meets our every need, she will be stronger than she can every imagine right now.

 

9 months in our arms

Nine months ago today we held our precious James in our arms for the first time after holding him our hearts for many months! The small, shy, brave, curious, and scared little boy that called out “Mama, Baba!” is now FOUR INCHES taller, a few pounds heavier, almost two shoe sizes bigger, and is a running, jumping, swimming, talking, discovering, singing, playing, tickling, laughing, eating, joy-giving, dynamic child that is starting preschool in a month!

James continues to make great progress in his upper body strength, flexibility and balance as we work at home with daily stretching, small motor activities (buttoning, zippers, snaps, locks, pinching with tweezer games, etc.) and weekly Occupational Therapy (OT) where has started working on a pencil grasp to start to form the letters of his name. The decision of whether to pursue a surgical correction for his hands and arms has always been a decision centered on function, rather than external form or appearance. If we could give him improved function in Activities of Daily Living (ADLs) then we wanted to give him every opportunity for that.

Yesterday we had our visit with Dr. Standard at the Rubin Institute for Advanced Orthopedics at Sinai Hospital in Baltimore. Dr. Standard is one of just two surgeons in the country that regularly performs a newer surgical procedure for Radial Aplaysia that is called Ulnarization. We had heard many good things about him from a variety of friend and family connections and we were not disappointed. He was so personable, engaging James with gentleness and care. He was patient and clear and so knowledgeable. He explained things to us in a way we could truly understand, answered all our questions thoroughly, and definitely put us at ease about his heart in patient care. This visit clarified and confirmed that James is an excellent candidate for the straightening surgery and for the pollicization procedure (removing his hypoplastic thumbs and moving his index fingers to be his new thumbs). After these surgeries there is the possibility of limb lengthening as well to help his ulna bones lengthened up to another 4-5 inches. His ulna bones are currently estimated to be about 40% short. We will do the first arm/thumb next summer, the second arm the next summer. Then it would be a couple of years until we do the lengthening, if we decide to do that. There will be a significant recovery/rehab period with frequent outpatient therapy. The pollicization surgery is about 3-4 months after the straightening surgery and his new thumb will be casted for 6 weeks after that and there will be lots of therapy/rehab for that too.

So this is not something we take lightly. It will be a heavy investment of care and time for our whole family, and will be a lot for our little boy to go through. But we have great peace that this is the best path forward for him. Kevin’s family lives just 20 minutes from the hospital, the OT facility where James goes now is one of the best pediatric therapy services in our region offering extensive services ideally suited to his rehab including aqua therapy, and we feel so comfortable with Dr. Standard and his team.

In the meantime, we’ll focus a lot of his OT on increasing mobility and flexibility in his fingers, particularly the index fingers. This boy is truly unstoppable though. In the last two days alone, he’s climbed UP the playground ladder, UP the playground rock wall, and is now not only jumping in the pool on his own but asking us to throw him in! 🙂 It is an incredible feeling to experience the joys and wonder of life alongside this amazing little boy we get to call “son.”

Family Update

Spring has finally arrived in the northeast and James is soaking up this warm weather! I’ve added several videos to our Vimeo channel that show him enjoying the outdoors, and some of the fine motor skills he’s working on as well as the fun he’s having with his brother and sister. Below the videos is an update on the latest with all three kids…

James and water from Kevin Hamilton on Vimeo.

James cutting with scissors from Kevin Hamilton on Vimeo.

James and the zipper from Kevin Hamilton on Vimeo.

James and Andrew on the playground slide from Kevin Hamilton on Vimeo

Some Milestone and Recent Happenings to Share…

  • James had a great first dentist appointment this week and we think he may even have his first loose tooth!
  • Seasonal allergies – poor little buddy was hit hard and we tried Zyrtec but it made his nosebleeds very bad. It seems to have let up this week and we’re just treating with essential oils right now and the saline gel in his nose daily.
  • His next check up at the doctor is this week with our family doc to take a look at a couple of minor matters and to have his hearing and vision tested now that his language skills are more developed.
  • We’re attending the library programs and a Mommy & Me class weekly now. These stimulating social environments are still very challenging for him in a lot of ways but he is very, very slowly starting to show little signs of progress here and there. We hope to introduce him to the kids program at church on Sunday mornings soon too.
  • James is grieving the loss of his friendships with Ping Ping and See-Fwoo at his first home in China a lot these days. It was pretty intense a couple of weeks ago and now it’s just something he mentions about once a day but he’s definitely processing that this is permanent and he may not see them again. We wish we could “make it all better” but we have to just be close with him and comfort in those times when he feels the pain of that loss more intensely.
  • He’s doing really well in his weekly OT sessions. It’s a 45 minute drive so it takes up most of our Monday when the other two are in school. We’re working on identifying all the English letters so we can start to work on letter formation. Right now he can sort of draw a ‘J’ and make large ovals and lines but that’s about it. He does have adaptive scissors that he really likes to use and he likes glue sticks as well. I try to do a lot of fine motor stuff at home too. It’s especially important that we increase his middle three fingers’ range of motion and increase the strength of his grip. We’re also working on shape recognition.

We’re wrapping up his evaluation process for the school district and should be meeting with the team again in early May to review their findings and finalize his classroom placement for the fall and his IEP (Individualized Education Plan). We’re looking forward to him starting in the fall with an afternoon preschool program.

The Rest of the Family

Gabi is looking forward to moving on to the Intermediate school next fall where she’ll have a locker, her own Chromebook and will change classes, have gym everyday, and take a foreign language. She’s had a tougher year in terns of friendship this year and she’s very ready to be done with elementary school 🙂 She’s part of a weekly girls fitness club afterschool, attending a bi-monthly tween girls group at her friend’s church, and has a bit of her own therapy going on to address some recurring double vision following two surgeries for intermittent exotropia, a form of strabismus. The good news is that after just a week of the daily exercises she reports already seeing improvement! Gabi is very excited about attending a fantastic musical theatre camp this summer – she had the casting session this past weekend. They are going to perform Seussical. She’ll also be going to River Valley Ranch, a Christian camp in Maryland, for a week. She saved all her birthday and Christmas money to help pay for that -we’re so happy that she can go again this year!

Andrew is playing soccer this spring and Kevin is coaching their team. They had a great start last week and Andrew had both a goal and a save. It’s really interesting to see some of his personal maturity just between last fall and now showing up on the field. He gets to see his first MLS game this weekend thanks to some free tickets from Uncle Mark! The big news for Andrew is that we’ve made the decision to homeschool next year! We’re going to just take it one year at a time, but everyone from his teacher to therapist and doctor are all in agreement that this will be really good for him. It’s also overwhelming, exciting, a little daunting, and stressful for us to think about, but we have total peace that school at home next year will allow him to progress and thrive academically, socially, and emotionally. We’re leaning towards the Charlotte Mason method and plan to rejoin the YMCA in the winter months, participate in field trips and activities with other local homeschool family, and possibly enroll him in a martial arts class again. We’ve already purchased our first “textbook” for what we hope will be a very hands on year of learning and exploring together. (It is the coolest book – check it out here!) Andrew is really happy about this decision too. He has one good friend that he has said he will miss but thankfully that friend lives right around the corner so we can set up lots of playdates.

 

Thanks for checking in with us!

Three Months of Family

IMG_2445 I had more than half of this post written when I lost it, so you’re now going to get the very shortened version as naptime is soon ending and the bus will soon be here with the other two! 🙂

Three months home – woa! It honestly feels like a lot longer than that now. The nervous, hesitant little boy that we met three months ago is now running around speaking full English sentences, chasing the dog, telling his brother to “be kwai-et!” when he’s too loud, operating electronics, fascinated with batteries and playing doctor and kitchen, finally connecting with and wanting to be affectionate with his sister, and loving “airplane rides” on Daddy’s shoulders. My very favorite thing though may be the “night night dah-ling” I get at bedtime 🙂

His expressive English language skills are really exploding. He definitely understands almost everything we are saying. The frustration sometimes happens when he can’t make us understand what he’s trying to say, but that is happening less and less. He can identify most colors everywhere, loves to tell us all about the trucks he sees on the roads, he’s counting up to 12, and he’s learning to identify letters. He loves playing around on the piano at home, and playing pretend doctor and cooking with his sister.

Socially, he’s much more like a toddler than a preschooler. This is very normal for a child from a background like his. He has simply never been given the tools and environment and nurturing to develop group skills, cooperative play skills and socially appropriate behavior. He only knows survival skills. He’s learned a lot from being in our family and home with his brother and sister, but now we have to start expanding and deepening that to include other groups of kids as well. So, I am going to start taking him to a weekly library group and next week we are visiting a local preschool to see their 2 year old’s Mommy and Me class for this spring. The Director’s niece has adopted two little girls from China recently so she’s very understanding of where he’s at and what he needs and she’s excited about him being in the class. It will be a good start for him to start to see and practice what it’s like to be part of a group and to be around other kids. It’s still tough to go out to stores and things like that and it’s a combination of overstimulation and nervousness we think at this point. That will come in time. In general, he does better in other people’s homes, like his cousin’s or grandparents. We haven’t really had other kids here, so that’s something we’ll start working on too.

James had his OT evaluation today and the OT was really surprised by how much function he has. She said he’s really not behind much at all compared to other kids his age with his condition. The primary focus right now will be getting flexibility and strength in his middle three fingers which are locked in a curled position. We’ll start working on that by increasing the amount of daily exercises and by using a splint at night which they will create. This Friday he has his renal ultrasound to rule out any issues there and we’re expecting all will be well. He had his first bought of real illness this past week with a fever and bad cough. This ultimately meant a trip to the doc to test for strep and in the end it was a good thing because it was his first visit to his Ped that didn’t include a shot so it reinforced that she wants to help him. He started to panic and cry when she wanted him to lay down to swab his throat. He was reaching out for me but wouldn’t calm until she showed him the swab so he could see it wasn’t a needle.

We received his Certificate of Citizenship in the mail this week so that means we can now go apply for his Social Security number and then begin the process to formally readopt him here in NJ. This will ensure that there are no issues around his adoption in the future. He will has a U.S. birth certificate and a US adoption decree that can’t be challenged in any state, and ensures there are no issues with things like inheritances. We are also reaching out to the school district to begin the process for testing and evaluation for services such as ESL, and for placement in the integrated preschool for this fall.

We are starting to see more and more of his personality and it’s amazing to see a sense of humor emerging and how he plays right along with silliness. He likes playing Hide and Seek, riding his tricycle, and he’s started “helping” us play Uno and likes to “play” with the Memory cards – he finds matches with the cards face up. He loves bathtime and playing with his pretend shaving kit, and yet he still loves to sit on our laps and play peek-a-boo and other silly games.

It’s exciting to think of what will be happening with him in another three months!

Coming soon – the next post about our trip to his SWI and what’s happening with PingPing and the other children…IMG_2488