Really Good Medicine
Kennady had her second surgery Tuesday morning.
Robin and I (Erica) were both shocked when they were about to take her back and told us it would be 4 hours. For some reason, we thought this surgery would be shorter than the last.
They took her back and we headed out to the coffee shop upstairs for some breakfast.
The waiting for someone in surgery can be many things
1.) Nerve wracking
2.) Boring
3.) Sleep inducing
4.) A good time to catch up on random stuff
5.) A good time to talk to your spouse, uninterrupted
Seeing as Robin and I had done a lot of catching up the past several days, and I really don’t like sitting and staring at the walls, I decided to go shopping around the corner.
This is where my martyr level started to drop. I knew I shouldn’t leave because immediately, this gives my husband the lead, but..I decided to let him keep the lead temporarily so that I could possibly get some new clothes.
It is a little strange leaving the building while your child is in surgery, but it sure did help the time pass a little faster.
We finally got the page to come back to talk to the doctor 6 hours after we left her with them. Then, we got back to the waiting room and waited a loooonnnggg 35 minutes before the doctor came in.
She came in and said something along the lines of, no part of this is easy with your daughter.
Basically, they had to redo the initial part of the surgery during this second part.
They had to remove the catheter in her spine that was placed initially, and put in a new one, then they were able to place the pump and hook the catheter up to it.
So the plan was that she would not have to lay on her stomach again after the second surgery, but because of the incident with the faulty catheter, she is back on her stomach for 3 days.
This is extending our time here by a day or two. We are hoping to be out by Friday or Saturday.
Robin left to go back to San Marcos to teach a class tonight and sleep in our bed at home. He is officially losing his Martyr status. I however, will be staying up her tonight and smothering our girl with hugs and kisses, and sleeping on the hard couch.
Ok, ROBIN breaking into the blog now! I have officially lost my martyrdom status to my lovely wife and will completely enjoy spending the night at home tonight!
Oh, the fun we have. Thankfully, God’s grace includes a package of humor and joy. We don’t just get through by plugging along. God gives us space to pick at each other and enjoy the difficulty.
A couple of nights ago, we had to go eat dinner and we missed the surgeon’s check up visit. When we returned to the hospital, the nurse said, “the surgeon wants you to call her on her cell phone so you can talk about Kennady’s status.” Erica quickly responded, “Robin, you talk to her.” I was SHOCKED. I couldn’t believe that she was actually going to let me talk to the doctor. Erica always takes the communication role because she spends so much more personal time with Kennady and knows so much more about her.
Later, I said, “Erica, I almost fainted when you said that I could be the official spokesperson of the family and talk to the surgeon on the phone.” She softly stated, “I was just trying to submit to my husband.” I burst out into hysterical laughter! I was worried that the rest of the hospital floor would be disturbed, but we both laughed so hard about her sarcasm and then we laughed about the fact that we were laughing so hard about her submitting to her husband. Anyway, for those that don’t know us, please see this as a sign that we have a completely healthy relationship. We love each other dearly and are so thankful that God’s grace fulfills us with joy no matter the ‘life climate.’
Then our mouth was filled with laughter, and our tongue with shouts of joy; then they said among the nations, “The Lord has done great things for them. Psalm 126:2
- Robin showing me the outcome of who will be the greatest martyr for staying over night at the hospital. Here, I am gaining the lead for staying tonight.
- This is the pump that was placed in her abdomen
Having Faith for the Moment
The past 5 days have been more emotional than I (Erica) expected.
We have been preparing for this surgery for the past 3 months or more and had felt peaceful about moving forward.
Kennady has gotten much tighter and just generally uncomfortable due to her high muscle tone.
The decision to have the surgery was not one we took lightly. We finally came to a point when we felt like her quality of life was diminishing and could be maintained, or improved, with the Baclofen pump.
During this time Robin and I have discussed the surgery and all of the possibilities between the two of us, with our family, and with close friends.
As we usually do, whether in the case of a major surgery, or major sickness, we prepare for the fact that Kennady may not survive. We all come to the end of our lives at one point or another, some slowly and gently, others tragically unexpected, and many others in between.
However, life with Kennady, always has that feeling a little closer to the surface for us.
During the time leading up to this surgery, I had mentally felt prepared for whatever might happen. I had peace about the decision to move forward with the procedure. We had met with the doctors and nurses about all of the aspects of surgery, how that this was very invasive and the risk was substantial.
It is hard to tell you how many thoughts come to mind while making these decisions. Decisions on life and death and the weighty things in life. Whether it is right or wrong to extend our lives at all.
These are not small things given to us. They are great, and taken as such.
Our greatest goal and drive is to honor God in all we do. With every decision, every word spoken, every breath breathed.
Often we fall short of that goal, reflecting on what we can do better in the future.
The weight of the surgery felt light on the whole to me. I felt very peaceful about it, and up until a couple of days before, I really had no major concerns.
I simply had faith that God was in control and giving me the peace that I needed.
Thursday morning during the surgery, Robin and I sat around and talked and laughed (a lot). We discussed lots of things, none really relating to Kennady and the surgery.
After the doctor had finished the surgery she came back to talk to us. As you know, from the blog Robin wrote, the doctor’s words stunned us a bit.
I was so emotional when the doctor said it was the “this was the most difficult catheter placement I have ever done”. I felt somehow that I wasn’t prepared for that, and that somehow that peace I had felt was not authentic because I was not feeling completely peaceful in that moment. As if some how, my lack of strength was a reflection of God not providing what I so completely believed he had.
You see, in my mind, the surgery was going to go off without a hitch, or be very heartbreaking. There wasn’t really a middle ground.
When I talked to people shortly after that, I could barely get the words out without being choked up with tears and emotion.
As the day went on and we talked with doctors, family and friends, God began to reveal the truth about that moment.
The picture I began to see was so beautiful.
God prepares our hearts, gives us peace, and is with us all along the way; but the peace we feel in those moments, is not that we will handle the situation with strength, a certain emotional calm, without fear or even with joy.
Those moments of peace come from a faith that God is in control, regardless of what I might be feeling in that moment.
We can’t be prepared for things we have never walked through. Each moment of this life is individual, no two moments alike.
I could never be completely prepared enough for the loss of my daughter, I can never be completely prepared for what the future holds.
The peace that I felt before crossing that bridge and many others, was a peace that, whatever may come, God will provide the strength I need for that moment and all the moments to come.
His grace is sufficient.
That’s it. His grace is more than enough for every moment I live.
I may not know what that moment will be like or what it holds, but he is enough.
2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in weakness.”
- Robin showing me the outcome of who will be the greatest martyr for staying over night at the hospital. Here, I am gaining the lead for staying tonight.
- D-lish salad brought to us by Cristina Vazquez. You may not recognize us when we leave the hospital. We have eaten well.
- Today’s fashion pic
- Unexpected guests. They stopped by to pray for Kennady
Kennady News (as of Sat evening)
Kennady got out of surgery at 2pm on Thursday, however, because of the medicine in the procedure, she did not wake up from surgery until 11:30pm! Then, she was up for 24 hours. It was a very difficult first night.
Because of the sensitive incision on her back, she must lie on her stomach for 3 straight days/nights. If she moves too much, there might be leaking spinal fluid and the doctors would have to go back in and seal it up. On a normal day, she might spend 30min on her belly and then she is ‘fighting mad’ and ready to turn back over on her back. So, for her to spend this many hours on her stomach is really difficult. We propt up a iPad in front of her so she could watch Netflix. This has helped some.
On Friday, my parents came up to the hospital so that we could have a break. We took the boys to dinner, putt putt, and to get ice cream! So fun! They ended up staying with Erica at the Ronald McDonald House. I (Robin) stayed up with Kennady at the hospital.
Kennady finally started going back to sleep around 1am Saturday morning. She slept off and on all last night. The nurses come in and out at least every four hours to manually check all Kennady’s vitals. This makes it very difficult to sleep! The nursing staff and doctors have been great at Dell Childrens’ hospital. They have been friendly, helpful, and most of all considerate of our wishes.
Twice a day, therapist come into the room and measure Kennady’s flexibility. This is to determine if the medicine going into her spine is working or not. They adjust the flow according to her tightness. The good news is that the medicine is working great and she has a ton more flexibility. Her arms and legs are moving like a normal body. In a few days (after all the surgery heals) we will really see the big results when she gets back into her wheelchair. We can’t wait.
Thanks so much to everyone for the support! I will be preaching tomorrow at PromiseLand San Marcos and can’t wait to see everyone. Erica will be spending the night back up at the hospital and then we will switch again tomorrow night. If you are interested in visiting, we would love to see you. Many folks have asked about bringing us food or coffee. We love to eat and drink coffee, however, coordinating the food has been a bit difficult. It might be easiest to simply visit when you can and bring us a gift certificate if you would like. Of course, just seeing your face will be good enough too.
If you haven’t read the details on why she had surgery, you can get the details here.
- Gotta show her how it is done! By the way, she got a hole in one on this hole.
- Avery!
- Three generations! We are blessed with some great grandmothers.
- All the gadgets around the bed
- Boys taking it to RMD.
- Boys wrestling at the Ronald McDonald House. What a fine place!
- Jude taking on the shark
- Don’t be a sock hater! At the hospital, you just want to be comfortable!
- Kennady started giggling a bit today. Good sign!
- GORGEOUS arrangement sent by PSM
- Spot on back where tube goes in
- Nobody cuter.
Why is Kennady having surgery? (the latest info)
This post is from July 2013. This surgery ultimately went wrong. We are having to do it over again. Sept 16, 2014. A New post will be on our blog Monday, Sept 15, 2014 with more info.
For the last several years, Kennady’s muscles have gotten really tight. So much so, that they are contracting her arms and legs completely and creating scoliosis in her back (curvature of the spine). This causes a lot of pain and difficulty in bathing, getting her in and out of her chair, and basically all movemnent. We have given her medicine (baclofen) in hopes of reducing this tightness. It has worked some but it has a lot of negative side effects with little success.
A few months ago we decided on a surgery that would insert a medicine pump in her abdomen, with a catheter into her spine, that will automatically put the medicine directly in contact with her nervous system and muscles. This will allow the medicine to skip the ‘blood brain barrier’ and not cause the side effects. It will also allow us to use lower doses with a greater reward.
Today’s surgery inserted the catheter and if it works successfully, they will insert the medicine pump on Tuesday. We have to stay in the hospital the whole time. It will take around 8 days for the complete recovery to happen and before we can go home.
We got to the hospital at 7:15am, we met with the surgeons, and then she went into surgery around 8:30am. We waited around the hospital until we were called back to meet with the surgeon (post op) around 2pm. It was a very long process because they had a difficult time getting the catheter in the spine. In fact the surgeon said, “This was the most difficult catheter placement I have ever done. We almost called off the procedure. We couldn’t get the needle in the spine, but God was on our side. I said a prayer and pushed one last time.” The final time was perfect and the process was completed.
As of 6pm, she still hasn’t woken (is that the right word?) up. The medicine is already working tremendously well. Her muscles are extremely soft! This is awesome. In fact, she laying in a way that looks so peaceful and relaxed. It was almost strange to see her body configured like a normal child. Actually, it’s beautiful.
We are so thankful to you all for the prayers and the outpouring of support. Mike Hollifield brought us lunch and Ruth Palacios brought us dinner. Randy Phillips came by and took me (Robin) out for a few minutes. Then, we received a huge gift basket from PromiseLand Central! WE ARE TAKEN CARE OF!
When Does the Thorn Become a Blessing?
My dear friend and mentor, Randy Phillips wrote this song several years ago. Never has a song resonated with me (Robin) more than this. I have heard it sung over and over, however, to read the lyrics as a poem is even richer to me at this point.
Blessing in the Thorn
I read about a man of God
Who gloried in his weakness
And I wish that I could be
More like Him and less like me
Am I to blame for what I’m not
Or is pain the way God teaches me to grow
I need to know
When does the thorn become a blessing
When does the pain become a friend
When does the weakness make me stronger
When does my faith make me whole again
I want to feel His arms around me
In the middle of my raging storm
So that I can see the blessing in the thorn
I’ve heard it said the strength of Christ
Is perfect in my weakness
And the more that I go through
The more I prove the promise true
His love will go to any length
And reaches even now to where I am
But tell me once again
Lord, I have to ask You
On the cross You suffered through
Was there a time You ever doubted
What You already knew.
The Latest Steele News
We have been unable to post lately because life has simply been too busy.
Kennady has gone through difficult sick patterns, Erica is slammed with school, and Robin (me) just finished the busy Easter season at church. Not to mention we are full time moms, dads, sisters, and brothers.
Life is hectic and busy…so much that we often have difficulty remembering what we are doing, but then again we are getting old too.
The pic above is Erica getting meds ready for Kennady’s bedtime. She takes 8 different meds at that point in the day. Most of those are pills that we have to crush, dilute with water, and put through her feeding tube. They help her relax, digest her food, fight allergies, and regulate her kidneys.
On Wednesday, I received a call from a pregnant mom in our church that received the exact same news that Erica and I received when Kennady was in the womb “we aren’t seeing something we should”. It turns out they are walking the same path we did 12 years ago. We are so honored to walk this path with this family. Please keep them in prayer.
We can not wait to tell you the story of us meeting our favorite hip hop star, TobyMac! That will come in a post ASAP.
I just got the call that our lawn team has all bailed this weekend and the church grass still needs to be cut. Therefore, I just put on old jeans and am heading out the door to make the property look splendid. After all, my pastor always said, “you don’t serve the bread of life on a paper plate.”
We love you and thank you for your support of us through difficult times. We are here for you.
Celebrating Rare Disease Day 2013
All these kids are from TEXAS! All are rocking and rolling in life with a rare disease! Kennady appears at 2:41.
I Need YOUR Vote
I Need YOUR Vote!
Heroes On Our Team (actually, they are family)
When Kennady reached ‘school age’, we were hesitant to release her to other people all day long. In fact, in Texas, school age for kids with disabilities is 3 years old. As a parent, it is so difficult to see your three year old load the bus and head off to school for the day. We made the decision that it was good for her to get the attention of loving teachers. The teachers in Lockhart were so special. We will never forget the heart and soul of Mrs. Lucas, Mrs. Williams, Ms. Green, and others that loved and cared for Kennady.
In 2009, we faced the same dilemma. We were moving to Hays school district. There were so many unknowns. Who would her teacher be? What would they be doing at school all day? Would they be sensitive to her needs? Would they push her to grow and develop to her full potential?
Our fears were put to rest when we entered the room. Wow. An enormous room with tons of adaptive equipment, soft lighting, and a warm smile by the one and only Mrs. Cato.
As days turned into months and months into years, we took for granted this whole school system. We would send Kennady off to school and greet her at the door when the bus returned. We would read reports from the teachers. A few times a year, we go to the classroom and have a social meeting with the teachers and other parents.
This is so brutal to admit, but we would see school as glorified babysitting. After not seeing notable progress with Kennady, we resorted to a ‘maintain’ philosophy. There was a point after our prayers for progress were seemingly unanswered that we needed to accept her the way she was and move on. We needed to love her for who she was and not care if she changed at all. While in that place, it is so difficult to keep pushing for progress.
That is where the rest of the team (family) kicks into gear. Each day Kennady went to school she was not being babysat. In fact, she was on a regimen to push her as far as she could go developmentally.
The ARD meeting every year reminds us of how valuable this whole community of love is. It refreshes our heart for Kennady’s progess. ARD stands for “Admission, Review, Dismissal”. Basically, any kid in the special education part of the district goes through ARD meetings to determine if they qualify for the program, review how the plan is working, and then dismiss when the services are no longer needed.
For the last few years, I (Robin) have not made the ARD meeting. I have had other meetings/plans creep up. Honestly, I have not made it a priority. That has all changed.
This year, Erica asked me if I was going. I looked at my calendar and nothing was on there so I made plans to go.
It was a cold Thursday morning. We were running a bit late. We rushed into the main office, we were cleared by ‘security’. Warning! Do not ever mess with a school secretary about…anything! They are worse than church secretaries! Give them your ID and wait for clearance. Once we got the ok, we headed back through the hallway. We opened the door to a very small conference room. We were the last ones to arrive. Gathered around the table were 6 women and 1 man eagerly waiting for us to arrive. I was emotional from the time I saw all their faces looking at us.
Wow. All these people are a part of Kennady’s life. The leader of the meeting began the official proceedings. Review of the schedule, how Kennady has done with last year’s goals, what the goals are for the next year, and what the plans are for junior high next year.
As time passed and each teacher shared their desires for Kennady, Erica and I fought back tears. These folks really are investing in Kennady and have high hopes for her making strong progress. They want her to use adaptive equipment to change her own TV channels. The have a goal of her using equipment to say her name and to say ‘hello’ to you as you walk into the room. They are working on getting her a customized chair that is fits her exact body shape. They integrate her into a regular science class, and in PE, Kennady is on the team with other boys and girls.
That inspired a question from me to the science and PE teacher. “How do the other kids interact with Kennady?” “Oh, they love her. They defend her. They accept her, say hi in the hallways, and want to be her partner. They actually get mad at her in PE when she is not pulling her weight. They treat her as a peer.” Mrs Cato (her main teacher) said, “I just had a 5th grade girl ask me to write her a recommendation letter to the junior high principal so that she could be Kennady’s PAL (assistant) next year.” Ok, if you didn’t just tear up, you are cold blooded.
It truly takes a community to raise a child, especially one that has so many special needs. I don’t believe you can ever overrate community. God created the world with the innate need to come together. As Americans, we value individuality and the whole ‘self-made man’ idea. Why? Each of us have different abilities that are designed to intricately connect and bring life one another.
He makes the whole body fit together perfectly. As each part does its own special work, it helps the other parts grow, so that the whole body is healthy and growing and full of love. Ephesians 4:16
We need others to pick us up when we are weak. We all get weak at some point.
I hope these teachers and school administrators see their work as a piece in a much bigger puzzle. It’s more than education. It is more than babysitting kids that often don’t want to be in school. Community is a puzzle of life that needs people of all shapes, sizes, skills, heart, time, effort, passion. Yes, they are teaching children, but they are also lifting a huge burden from the parents. They are carrying a torch that will change the next generation. We appreciate you, teachers!
The next you hear someone trashing the public school system, please say, “Uh, I’ve heard about some amazing people in the Hays CISD.” (and Lockhart)
What the Heck does Kennady eat?
People are always curious about what Kennady eats, how she eats, etc. It just so happens that this is tube feeding awareness week.
So, we thought we would share with you a little humorous look into…What the heck does Kennady eat??
Before you watch the video, we want to give a shout out to our GREAT dietitian at the Scottish Rite Hospital in Dallas: Janice Scott!!
bon apetit!
What People are Saying