Six years ago today we celebrated becoming parents. Kurt and I were in Addis Ababa, Ethiopia walking up an alley way saying to each other, “We are about to become parents.” Nothing could have prepared us for the overwhelming joy we have felt since that moment. Micah and Hannah, you each make every second of our lives better. We are thankful that God created our family by pulling all of us together from opposite sides of the world. We love you!
First week home.
Sightseeing in Ethiopia Sept 2007
I was thrilled to see this issue being addressed in the national media because it is a very real issue for my daughter. We were recently at an event with food, while a eating one of the appetizers a young woman said “My inner fatty is coming out, but I don’t care because these are delicious.” My 10 year old daughter was standing right in front of her. Ugh! Please ladies have respect for yourself and the young girls around you.
In the last two weeks we have seen the neurologist, orthopedist, and spasticity. Here are updates:
Hiding before the doctor comes in the room.
Neuro: Recommended a 72 hour inpatient EEG to look at his partial seizures. This is scheduled for May 6th-9th. Please pray for a happy boy and parents while he is in a hospital room for three days. Most importantly pray for good data so we can know what is happening with his little brain. The doctor is pushing us to have a Developmental Evaluation completed to rule out or in an Autism spectrum disorder. I am working on getting that scheduled now.
Ortho: They took x-rays of his hips. His little femurs are barely in the sockets which I guess is common with his muscle tone, however disturbing it may look to me on the x-rays. His muscles are pulling on his hips in such a way that they force the bones out of socket and the hips don’t develop correctly. While we knew he may require surgery around age 7 or 8 to straighten out his legs, it is looking like it will be sooner and involve his hips too. So we go back in 6 months for another x-ray. They are hoping because he is up and walking that his condition will not worsen. We will wait and see what happens, the doctor attempted to reassure me that nothing would dislocate…I’m not too sure but we will see.
Spasticity: Our specialist is Dr. Wendy Lin, we love her! She is great with Jonah, even when giving him botox injections in his calves. This visit was a routine check up, but ended up being a therapy session for me! Since my stress and worry was written all over my face she spent some extra time checking in with me to answer any questions and provide reassurance. Part of that was talking about a manual wheelchair for Jonah to use when we are in large public places that require a lot of walking. Due to his hypotonia, low muscle tone, he gets easily tired when walking. Lately we have been using an umbrella stroller or carrying him, however he is getting too big for both of these options. The benefits of a manual wheelchair is that he could still get physical exercise by using his arms as well as some independence. Another benefit for us is we could lock the wheels so he would have to stay still and have some control when we needed to such as crossing the street or walking in crowds. My hope is that it will give us more piece when we are out with him, since he is so energetic he likes to take off without looking adding to falls and a serious danger of him getting lost. Jonah getting lost is one of my biggest fears because he can’t talk and loves everybody…it makes me very nervous! I have already talked to our PT about getting the chair, things are moving forward with having an initial eval with the vendor for it.
Jonah meeting Minnie with Dad and Hannah
Overall Jonah is doing well, just some more obstacles that we need to get through. He is still happy and very fun to be around.
Find Jonah, look for the Mickey Mouse PJs
For me grief is a continuous circle, kinda like a merry-go-round. Just when I have come to terms with an issue, symptom, negative, reality, or whatever involving our Jonah another one arises. Lately we have been dealing with seizures or staring spells, who knows what they are because all tests have come back normal thus far.
Now that I have adjusted to a life of watching him 24/7 for any signs such as a fall, not blinking, turning blue, or tremors..the neurologist once again brings up Autism! Highly encouraging us to get the neuropsych involved to rule it out. It is not that giving Jonah an autism diagnosis would be the end of the world, it is just one more thing!
After every doctor or therapy appointment there is more questions, new answers and possibilities that leave me mentally drained and emotionally burdened. This leaves me cranky for at least 24 hours. Next week he has two doctor appointments! Look out husband and kids it’s going to be a rough week!
“Yeah I’m tired too.”
Last Thursday, what I had been fearing happened…Jonah had a seizure while at school and then another that afternoon at home with me. They were simple partial seizures, that did not result in unconsciousness. He just stared off into space and did not respond when his teacher or I tried to talk to him. They were both followed by him sleeping for several hours. The good news, he is fine and the neurologist put him on medications to stop them. So we still went up to Disneyland with my family from Friday evening to Sunday morning. We had an incredible time! Thankfully Jonah was back to himself on Friday, after a marathon sleep session Thursday.
I am thankful that the neurologist was so helpful and reassuring on the phone, which is odd considering she was super standoffish at the office visit six months ago. We are praying that the medication works and dosage gets figured out quickly.
Two years ago on January 24th Jonah Tyler became ours forever! The time has flown by, filled with joy, laughter, tears, and so much love! 
This gallery contains 21 photos.
Yep Botox, spasticity, Pulmonology, GI, orthotics are all way to common around the Kneeshaw household lately. Jonah is having back to back doctor appointments this week to help resolve some of his medical issues. So while you may think these words relate to a person over 70, they are actually referring to our 3 year old cutie. Tomorrow is the big Botox in the legs day for little Jonah with hopes it reduces his muscle spasticity enabling his bones to grow correctly and offer some relief for him. While I am nervous about the amount of pain and side effects in the grand scheme of things this is a VERY minor procedure. And God’s got this all figured out, it will be fine, just like all of the other minor procedures our guy has endured. Can you hear me reassuring myself? We appreciate your prayers for it to be as painless as possible, and most importantly for it to work way better than even the doctors expect.
Jonah Tyler
I had been promising Micah and Hannah for the past week that we would go see “The Odd Life of Timothy Green” today after registering them for school. Thankfully the registering process was not as complicated as I had expected, so we made it to the 1045am showing. Going into this movie my expectations were low, I liked Jennifer Garner and thought it looked cute in the previews. So I was surprised when it moved me to tears within the first ten minutes. Let me begin by saying I am not a crier, it takes a lot to bring me to tears..ten minutes into a movie is a new record!
It seemed to mirror my life in so many ways. It took me back to five years ago waiting anxiously to become a mother, and to even earlier than that when we knew biological children were not in God’s plan for us. As so few do, this movie captured the GIFT of adoption, of a child, and of a family. I LOVED watching it with MY two amazing kids who first called me, Mommy and Kurt, Daddy. My favorite line was when Jennifer Garner’s character is talking to her older sister. The older sister says, “I thought you wanted to have your own kids.” Jennifer Garner’s character says, “He felt like my own the first time I saw him.” BEAUTIFULLY written and said.
This movie is about the daily mistakes, trials, relationships, and the love that makes a family. I am grateful to Disney for making such a wonderful movie that focuses on love (not blood) making a family. It places older child adoption into the mainstream, reaffirming the positive messages of adoption that we have instilled in Micah and Hannah. I love this movie! I highly recommend it for any parent who wants their kid to know that love makes a family.
k5adventures 