Medical Monday – Levstik Family

Deciding to adopt my son, Jax, was by far the best decision I’ve ever made.  Jax was 2 years, 7 months old on our Gotchya Day, and we’ve been a forever family for just over a year.  After carefully researching each medical condition on CCAI’s medical conditions checklist (MCC,) I was ultimately open to a variety of conditions.  My main goals were ensuring that my child would be able to run and play, and that his/her intellectual capabilities would be unhindered (to the extent you can guestimate that).  Considering a child with cleft lip and palate was a natural fit for me.

Jax

Jax’s initial palate and lip repair surgeries were performed in China during his first year of life.  His LID-only file said he could only say “mama,” and while that scared me, I was told that is not uncommon for children born with this condition.  Before accepting the referral, I shared his file with a pediatrician, an international adoption doctor, and three ENTs.  With as many reassurances as I could get, in the end, it still required a leap of faith to say yes.  Needless to say, I’m so glad that I did!

Jax has adjusted amazingly well to his new life.  He smiles constantly and loves to laugh.  Jax has a personality that sparkles and he draws people to him.  He’s a natural leader.  Jax is a whiz at puzzles, loves to swim and go to the zoo, and loves to read.  His ability to attach and bond has been incredibly strong and positive.

Jax_4

To treat his medical conditions, I found that proactively lining up a great medical support team was very important.  Within a month of coming home, Jax began working weekly with a private speech therapist that specializes in cleft lip and palate, and he also began working weekly with a separate speech therapist at his preschool, which is paid for by the state (we live in Colorado).  We also spent a day at the Cleft Lip and Palate Clinic at Children’s Hospital Colorado, where Jax was evaluated by multiple specialists and a plan was developed by their team for ongoing treatment.  We will go back once a year for an evaluation day like that until he’s 18.

We have a wonderful ENT surgeon, and Jax underwent a soft palate revision surgery last month to lengthen the palate and better align the palate muscles.  He also got ear tubes.  The surgery required one overnight hospital stay, and the two weeks of liquid diet that followed was tough, but we can already tell a vast improvement in the quality of his speech.  Jax will need weekly speech therapy through at least the first grade, another surgery when he is 8 or 9, and extensive orthodontia.

Jax_3

The hardest part about this condition is not understanding everything my son is trying to communicate.  I understand about 80 percent now, but strangers get only about 40 percent.  Fortunately, I know this will improve dramatically as a result of our recent surgery and ongoing speech therapy.  A great thing about the condition is that when people look at Jax, they have no idea he has a medical issue because his scarring is minimal, and he’s whip smart, very coordinated and physically active.

Jax_2

I’ve just completed my second dossier to adopt a little girl through CCAI.  I have specifically requested a child with cleft lip and palate, and am open to minor hearing loss as well.  This is a totally manageable condition, so much so that I’m signing up to do it again!

I’m happy to speak to anyone who would like more information or details.  You can reach me directly at: tlevstik@hotmail.com.  Thank you for considering opening your heart and your home to one of these amazing children.

Tracy Levstik