Tessa in the Cincinnati Children's Hospital
Playing with the new Legos for GIRLS!
Getting ready to leave the hospital!
Sunday dinner with the Edwards
A cold day at the Cincinnati Zoo with my parents
Grandma and Tessa with the penguins
On Feb 26 John sent out this email:
Family,
We wanted to request your prayers on Tessa's behalf. We have noticed several symptoms increasing over the last month or two, such as decreased energy level and muscle soreness. This past week she came down with a cold and these things suddenly became much more pronounced. Several blood tests were run and one of them identified a high "CK" enzyme level. The doctors are not sure what this might mean, but they want to run more tests to diagnose the cause. It is likely that Laurel will be flying with Tessa back to Cincinnati in the next few days to ensure we can get guidance from the right
specialists. We know that things are in the Lord's hands, and appreciate your prayers for Tessa. We love you!
John
Thursday, February 2nd I noticed
that Tessa wasn’t putting her arms over her head in the dance class I teach at
her preschool. I asked her if her arms
hurt, but she said she was just tired. She
came home from school the next week pretty sad that the teacher that walks them
to the bus kept calling her “slow poke.”
That week her teacher told me she was falling a lot, but said it could
be her new shoes. Friday, Feb 17th
our family went out to eat for my b-day.
Tessa refused to walk and wanted to be carried. She didn’t complain that she was in pain. She just simply refused to move. During these few weeks Tessa was happy. She did all the things she usually does, she
was just slower. Tuesday, Feb 21st at
breakfast John and I watched as it took her about three minutes to bend over
and pick up the spoon she dropped. She
turned and smiled when she saw us watching.
She looked like an 80 year old women with arthritis. But she wasn’t complaining -- wasn’t
crying. She didn’t have a fever and she
wasn’t sick.
We didn’t know if it was related to the
growth hormone. I told John I would call
the doctor as soon as I got home from Hong Kong. I went to Hong Kong on Wed, Feb 22nd
for the Asia Area Women’s Conference.
While in the airport Wednesday afternoon ready to board the plane, Tessa’s
teacher called and said that Tessa would not walk all day and she was worried
about her. John took the next day off
work and took her to the doctor. Her blood
work seemed normal. On Friday she had a
fever and a bad cough so John took her to the ER where they did more blood work. Her CK muscle enzyme level was 2,800 (normal
is around 100). I got home on Saturday night. Sunday, I stayed home from church with
Tessa. She and I spent a few more hours
in the ER on Monday morning. Given the
uncertainty of the situation and Tessa’s complicated medical history, we wanted
to get back to the U.S. to figure out what was going on. We made plans to go to Cincinnati Children’s
hospital and flew out Tuesday morning. My
suitcase was still packed from Hong Kong, so I just added some things for
Tessa. I made lists and phone calls preparing
to leave again. It was easier for
me to leave knowing that we have the Olsens in Shanghai–as well as the Johnsons,
who are like family to us. I was
grateful for Pamela Pour and Kristen Gustafson who brought my family meals.
It was a long flight. Tessa slept, coughed and watched movies. She used a wheel chair in the airport. She did not look well and we were worried
about her.
My dad picked us up at the airport Tuesday afternoon. Our first stop was Target so I could run in and
get Tessa a little toy because she was so nervous to have her blood drawn for
the fifth time that week. My mom left
work early and met us at home. I had
time to eat some soup in the crockpot and repack a hospital bag. Tessa was admitted around 5pm. We stayed two nights and three days. The diagnosis is Myositis. No cure.
Just time and ibuprofen should help.
My I-pad entertained Tessa and we were thankful we could “FaceTime”
home several times a day!
On March 1st I sent out this email:
Hello from Cincinnati Children's hospital,
Tessa is doing well. She loves the hospital cartoon channels and the all-you-can eat Cheerios.
My dad picked us up from the airport Tuesday afternoon. Tessa was admitted to the hospital a few hours later. We have seen a dozen doctors and nurses and they have taken great care of us.
Their report is that Tessa has myositis (muscle inflammation). The inflammation damages the fibers of the muscle. After several tests and monitoring her for two days the drs think this was caused by influenza B (a rare type of flu, only five percent of flus are type B. H1N1 and Bird flu are type A).
Her CK levels (found in muscles) was 2800 a few days ago (100 is normal). That number is slowly coming down, a few hours ago it was 650, which is great news. Due to her turners syndrome they have done tests on her kidneys and heart, which could be affected with myositis. All look good. And there is no concern that this is connected with her growth hormone shots. What a great relief!!
We have had three physical therapy sessions while in the hospital. We were given several exercises to do to help strengthen her legs. The doctors say it could take another month until she is walking normally.
Tessa and I will be discharged from the hospital in a few hours. We will stay in Cincinnati for a few more days for her to rest. Plus grandma wants to take her to the zoo and to Target when she is feeling a little stronger.
Thanks for all your prayers and concern!
Laurel
When I was packing for Cincinnati, I realized that my
Michigan driver’s license had expired on my b-day. Because it was expired the only way to renew
it is in person. Thursday afternoon my dad
picked Tessa and me up from the hospital.
He helped me get a copy of my social security card and the Ohio motor
vehicle law book so I could study. I
spent several hours that night reading the manual. Friday morning my mom took me at 8am to take
the written and driving test. It was a
few stressful hours, but thankfully I passed!
My parents went to DC that night for Grant’s baby’s blessing that weekend. The Edwards had Tessa and me over for dinner
on Friday night. On Saturday I did a lot
of shopping (clothes, cereal, medicine, Easter presents...) I packed three U-Haul
boxes to take back to China. On Sunday
the Edwards invited us over for dinner again.
Tessa loved playing with Betsy.
Betsy was so kind to her, putting on her shoes and trying to carry
her. I loved hearing baby Aidan laugh! On Monday my parents took Tessa and I to the
zoo. This was a highlight for Tessa and
she still talks about all the animals she saw.
On Tuesday we flew home, landing in Shanghai on Wednesday evening.
I wasn’t ready to come home and still have Tessa sick. She seemed even worse than when we left for
Cincinnati. My list of things to do was overwhelming,
with church callings, school commitments, kid’s activities, kid’s homework, and
John was having a very stressful week at work.
The jet lag was real. I was near
tears the entire week. I sent Tessa to
school on Monday, only to get a phone call at 10am to come and get her. So she stayed home another week from
school. I spent most of my days making
Tessa move. I would turn on her favorite
song “Telling the World” from Rio and I would stretch her muscles. She would wince and cry. I got her dressed, but made her put on her
socks (took her about 45 minutes). I
helped her in the bathroom. I took her
swimming, read with her, and colored with her… By Friday night I was exhausted,
angry and tired. Why was she still not
walking?? Why was she still in all this pain??
3:30 am Saturday morning Eliza came in to our room saying
that Tessa was calling for us. John
helped her to the bathroom. I started
crying and couldn’t stop. John told me I
had to let my list of things to do go and just love Tessa. That is the last thing I wanted to hear from
him at 4am.
Saturday morning I taught Zumba while John took the kids to
a primary activity. At noon I took James
to the doctor -- he had a bad rash on the back of his legs for a few days and
this was the first time I could do anything about it. After the doctor prescribed some cream I
asked her if she knew about Myositis. She
did. She is a Christian from Singapore
and I felt like she would listen. I told
her about the last month. I cried. She cried.
She said that Tessa’s pain is real.
That Tessa doesn’t want to feel like this. She said that the pain in her legs is worse
than you would feel after running a long race.
She said that it could take months until those enzymes leave her body. She told me that I needed to look up, that I
needed to love her, that I need to be more patient with her, and that she is
certain that there is a reason for this season in her life. She took my hands and prayed with me. It was the sweetest prayer I had heard. I couldn’t stop crying. James was looking at us like we were
aliens! Poor boy, he thought I had gone
to the doctor for rash cream, but it ended up being a great therapy session for
me.
I came home and I hugged Tessa and I could feel my heart
change. We had the best evening as a
family. We went to the flower market and
bought 24 plants for our flower bed, we went out to eat at CA Pizza Kitchen, we
went swimming and to Cold Stone. We
carried Tessa and she could feel our love.
Who knows what lies ahead?
I am trying to ignore my lists, trying to simplify and to figure out
what this season in our lives is all about.
