The pediatrician (x2), an ophthalmologist, school social worker, the preschool evaluation team, a neurologist, a neurodevelopmental pediatrician, an orthopedic surgeon, occupational and physical therapists, and the dentist: those are the specialists we have visited in the last month with Kristiana. She has undergone a sedated MRI, EEG, extensive blood work, and swallow study. We also have a referral to see a physical medicine and rehabilitation doctor and have an appointment to get orthotics for her feet and legs. We have been busy.
It took a while for the referrals and appointments to be made, but during August, we covered a lot of territory! Add to that getting the other children ready to start school, as well as eye doctor, orthodonist, ENT, and cleft clinic visits for them. Through it all, Little One has maintained her joy, even laughing after getting 8 vials of blood taken (well, after she gave the nurse a pitiful look).
Chad has been preaching through the book of Mark. A few weeks ago, he said something that really hit me. When talking about Mark 8, he mentioned the suffering Jesus knew He would endure. Jesus was preparing His disciples for what was to come, although they didn’t believe Him or understand Him. Jesus knew what was coming, though, and even sweated drops of blood in anticipation of the event. The journey to the cross and the grave would be excruciating, but He held the destination in mind. He held us in mind. So, think about this…
Although not comparable to what Jesus endured, for the last few months, I have been treading through so much fear. The actual getting on a plane to go to Ecuador and Ch*na was ridiculously difficult for me. Once I started worrying about the plane crashing into a mountain in Ecuador, my mind traipsed into all kinds of dangerous places. It seemed I couldn’t take my thoughts captive and they were paralyzing me. God carried me through the plane journeys (including a cancelled flight due to malfunctioning EMERGENCY BRAKES!), and the destinations were filled with blessings and joy and love and purpose. My lovely friend, Audrey S., reminded me of this the third day we were in Chin*:
For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do. Ephesians 2:10
Thank you for reminding me, Audrey, that I was right where I was supposed to be.
I believe God put the destination of Kristiana right in our pathway. I am so thankful the journey did not scare us out of saying “Yes” to this precious child. Looking at her all beautiful and joy-filled, I wonder how I got the privilege of mothering her. The journey we are on now with her is going to be filled with doctor’s appointments, loads of therapy, fights for her rights, and unknowns. The destination of seeing her understand that she is loved by us and the King of Kings is worth it.
Our Week Off!
We had a week off from appointments (which means those listed occured during three weeks!). That called for some fun, fun, fun! Unfortunately, StP started school earlier than the rest of the kids. This prompted MaeMae to suggest we have Sisters’ Fun Day. When questioned what this would entail, she responded, “We would go to Chuck E. Cheese, go to the store and buy panties and Barbies, go on a picnic, and watch a movie at home.” She had it all planned out! Since I am the mother, I got to revise her plans: uh, no to Chuck E. Cheese. I asked MaeMae about the other brother, since he was not in school yet. She said he could come on our Sisters’ Fun Day, too. Not to be left at home, Buddy accompanied us.
Unfortunately, it was raining, so no picnic. Instead, we opted for hot dogs, soft pretzels, frozen yogurt, and gigantic drinks at Sam’s Club (Hey, it’s budget-friendly: we all ate for under $15!). Kristiana loves playing Barbies! Chickadee says she mostly swings them by their hair and gives them kisses. She was so excited to pick out her first Barbie, a veterinarian. We did get to buy panties, too, and Buddy stayed in a different aisle during this part of Sisters’ Fun Day! Overall, our day was a blast and should become an annual tradition.
The next day we got to babysit two friends, also adopted from Chin*. I shouldn’t say “babysit” because they are both teenagers! During the day, hearing them play together with my children, I felt so amazed…amazed that God would bring together kids from the East and the West to be friends, to enjoy life together, to encourage one another, and to love each other.
We ended our week off with a visit from dear friends (Terry and Chad have been friends since 6th grade!) They are members of the FIVE KIDS CLUB, too, and so we squeezed 14 people into our little bitty house and had a blast. I feel so over-indulgent because we introduced them to Sherman’s Ice Cream, which means I had Sherman’s three times in one summer. So, so good.
A Bathtub Miracle
Giving Kristiana a bath has been challenging. She can sit up with support, but when she is all wet in a slippery bathtub, this is nearly impossible. I cannot hold her and give her a bath; there just aren’t enough hands for holding and washing. So, I have been donning my bathing suit and getting in with her. This allows for fun play time, but is not always practical. When we were first home, DH made her a bath seat from pvc pipe and pool noodles. She sat in it beautifully and we thought we had a cheap solution, until it started floating with her in it! She is so tiny, she couldn’t hold it down. Someone suggested using a toddler sled, the kind with a seat and buckle. It seemed like a perfect solution, so we borrowed one from a friend. Unfortunately, the back was too low and she started sliding down. The seat belt was a lap belt, so when she slid down, it got caught under her ribs. The belt was very tight and I was so scared I was going to break her ribs trying to get my fingers under it to unfasten it.
One day, Chickadee mentioned how well K sat in her booster seat at the table and asked why didn’t we try that in the tub. We sat her in it and it worked! No sliding down! No floating! No need to fasten the seatbelt! Only splashing, playing, washing, and momma not getting wet! Kristiana got to have her first bubble bath and she loves it. When I ask if she is ready to get out, she always answers, “No.” A miracle. Seriously, thank you, Jesus!
If you have read this far, you deserve some results! Here we go…
MRI–Kristiana has cp because she experienced a lack of oxygen before, during, or shortly after birth. No surprises here.
Swallow Study–She has no restrictions!
Blood Work–No concerns! She is up-to-date on all her immunizations, even though we received paperwork from Chin* saying she had been given none because she has cp.
Orthopedic Surgeon–No hip dysplasia or anything concerning!
Dentist–No cavities, just tea stains!
School–Eval done but no IEP meeting yet.
Physicians’ Consenus–She is a joy-filled girl who needs therapy!
Praise the Lord with us that there were no hidden diagnoses and our girl is healthy. So, off we go on our journey to therapy and learning and growing and being amazing, one step at a time until we get to our destination.