We are taking a vacation (July17-28) and calling it the MadeMeaningful Tour. It actually is quite a tour, and we will be talking about our story all along the way. Check out our stops: (please people, just because you know our stops now, please do not have the paparazzi following us. and those of you planning to rob our house, we will have people in it. So don’t bother. Plus, a SMPD officer goes to our church and will be checking it out daily. ok, enough of the parenthesis sentences.) We will be blogging every day with updates!
Night 1: Desoto National Forest (Mississippi) This is a quick pitstop to sleep and rest up. Nights 2-3: McKinney Campground (Atlanta area) On Thursday, I (robin) will go to an all day coaching session with Tony Morgan. This has been an awesome experience for me as a leader. The family will hang out at the lake and have fun.
Night 4-5: The Kelly’s – We will hang in Winston Salem NC area for a couple days with our dear friends Michael and Annette Kelly. They pastor a church where we will speak on Sunday (July 22).
Night 6-8:Families for HoPE Conference. This is our first time to attend this special conference for kids with HPE (Kennady’s Condition). We are so excited to meet all the other families and share stories with one another.
Night 9-10: Lowerys. Of course, all trips to the East Coast involve at least 2 days with the Lowerys (Robin’s sister and family). They live in Spring Hill, TN.
Night 11: We have no idea. We will stay one night on the return trip home. If you are between Nashville area and Austin, let us know, we will crash your pad!
We are so blessed that Advanced RV rental gave us a great deal on a SWEET RV. We will be traveling in style across the states. Also, we want to thank our church family for allowing us to go on this break and for helping us financially with the expenses. THANK YOU!!
It has been one week since Kennady went into the hospital and today she goes back to school! She was admitted into Dell Children’s hospital because of severe vomiting. The source of the nausea was low sodium levels. It took eliminating all food and drink to get her levels correct again. It was a drastic step. The doctors telling you that your child can not eat or drink anything for the next 36 hours is intense. Erica actually asked them, “Would you treat a normal child like this.” The answer was yes.
It only took a few more hours and she was doing better. We were sent home on Friday night.
During that time, life goes on. Our other two boys are doing their 6yr and 8yr old thing. I have to pastor a church. Erica balances life, school, mothering, being a wife. The rest of the world doesn’t stop. It takes the GRACE of GOD to maneuver through. We decide several things:
1. We need help. When people ask what they can do, we have learned to tell them. It is so difficult. Our natural response is to say “Thank you” and then not use their help. However, we have learned that people are blessed when they help and we need the help. It is a double blessing. Every time we go through a challenge at this level, we have a huge outpouring of prayers and people calling to support. We had people buying breakfast, visiting, helping with our kids, and more. Here is a clip that “Grana” took when she went to field day with Jude.
2. We need to connect. Before the storm comes we need to connect with people. We make the conscious decision and effort to connect to a local church body. I don’t know what we would do without our church family.
3. We need to focus on the need. We need to be there for our daughter. God has put us in her life to raise her, provide, and protect. We need to research the conditions. We need to TAKE INITIATIVE with the doctors and nurses.
4. We need to keep moving. We must have balance and continue to walk through the rest of our life with as much normalcy as possible. One day, I took the boys to my parents house and we worked on a new playhouse. Or should I say play mansion??
All of the movement is a dance with life. We take a step and then life takes a step. We move and then conditions change. The only way we are able to smoothly move is through the Grace of God. His power enables us. He has endued us with the ability to move through challenges and valleys.
As of late Wednesday night Kennady’s sodium level was at 128. That is up from 125. The doctors are trying something (that we think is) drastic.
They are not feeding her or giving her anything to drink for up to 36 hours. They are giving her no medication or an IV. This is a strong effort to get her levels up to 140. We are not sure what they will do if this doesn’t work.
It is really complicated. We believe that God will work it all out.
One of the most difficult decisions we had to make was whether I (robin) would go on a scheduled trip to Atlanta on Wed-Thurs. Erica and I talked a great deal about the trip and Kennady’s condition. We finally made the decision that I should continue the trip. I return Thurs evening. We have such a fantastic group of friends and family that really nothing skips a beat. Our boys are well taken care of. Our PromiseGroup met without us. The church staff continued to make progress (I think). I haven’t checked on them in a while. Ha!
Erica and I have gotten to a healthy decision making process. We weigh all the factors and make a decision where we are both in agreement. I have found that these road bumps actually bring us closer together. We respect one another and love on each other. We see the body of Christ rise to the occasion and we feel really loved.
We are hoping that the sodium levels increase very soon and we can bring Kennady home on Thursday. This is still an option at this point.
Monday afternoon Kennady started throwing up big time. This is not anything new. In fact, she throws up quite a bit and we have gotten used to it. Honestly, the ‘throwup’ is not near as bad as other kids because she only eats ‘formula’. Anyway, it is not easy and we always have to be on guard to turn her on her side so that she will not choke on it. One time that happened as a 2yr old and she stayed 10 days in ICU with pneumonia.
It took a turn for the worse on Monday, when we begin to see blood in the ‘throwup’. At that point, we decided to take her to the ER at Dell Children’s hospital in Austin. I insisted that I be the one to take her. Erica stayed home with the boys.
When we got there (8:45pm), it was PACKED with people. Fortunately, they got us in quick (advantage to have a child with special needs). As soon as she got to the ER room, she started smiling and perking up. Here is a pic.
From that point on, she did not throw up and had no other symptoms. They did a catscan and xray to confirm that her shunt had not clogged again. They tested urine for infection. Nothing…Well almost nothing. They tested her blood, but for some reason did not check her electrolytes. So, everything looked normal and we were sent home around 1am.
Everything was normal until 4pm Tuesday. She started throwing up big time. At this point, she couldn’t hold water down and we decided to take her back to the hospital. This time Erica went and made sure they checked all the components in the blood. They found that her sodium levels were low.
From birth she has struggled with her sodium levels. She lacks a hormone that regulates her kidneys. When she doesn’t get the right amount of medication, she pees too much or too little. This throws her endocrine system off. Sodium levels are affected and she struggles. The worst case scenario is that she would pee herself into dehydration and eventually die. As she grows and her body changes, she needs more or less of the medication. Obviously, there is really no way to determine that we need to change medication until something like this happens. This condition is called Diabetes Insipidus. It has nothing to do with the other type of diabetes you are probably familiar with.
As of Wed morning, she is in the hospital and we are waiting for her levels to balance out. This occurs with changing the amount of fluids she gets and the medication given. Thank you for the prayers and support. We are so grateful to have so many loving people in our lives.
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