Robin and I haven’t posted since Kennady got home from the hospital during her last stay because the pace of life right now, feels similar to the pace of an avalanche at your back while skiing straight down a hill.
Kennady made it home and recovered great after her baclofen pump was implanted.
Approximately 1 month out from the surgery, she got an infection in her site which ultimately resolved on it’s own.
10 days ago (2 weeks after the last infection healed up) Kennady’s incision on her back, developed a red raised spot on it. This grew over the week and then the redness spread to the front of her belly and incisions.
I took her in to the E.R. on Saturday knowing that we were most likely not leaving until we got some antibiotics, at a minimum.
Low and behold, she was admitted.
The doctor came in the following morning (from vacation) to operate on her wounds.
The goal was to clean the infection out and then make a plan.
Unfortunately, when the doctor went in, the infection was concerning enough, combined with a positive culture for Staph, that she had to have her entire baclofen pump and catheter removed.
We are extremely disappointed. Disappointed doesn’t even seem to fit.
There really aren’t words right now. It feels like such a long journey to end up in this place.
Today she had a picc line placed so that she could get antibiotics for the next 2+ weeks, as she is healing.
The doctor told us that Kennady will need to heal from this surgery and infection and that in a few months we could possibly put the pump back in.
There is so much to process right now, we are just being here with Kennady and spending time with our boys.
I will be leaving to go take my final exams on Wednesday evening, and will return on Saturday. This leaves Robin alone with the boys and a girl in the hospital.
Fortunately, we have lots of wonderful friends and family on standby to help.
We are in the process of trying to get back home with our home health care company. This way, we can avoid the extended stay at the hospital and be in the comfort of our home
We don’t have a solid plan yet, but please pray that it will be clear each step that we take.
Thank you for all of your love, prayers and support!
Waiting in the E.R. to be admitted. I was studying and Kenna was laughing at the T.V.
This is how Robin passes time at the hospital. He love animals soooo much that he has to go walk the balloon animals to decompress. 😉
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.
When Erica and I decided to have kids again after the long journey of Kennady’s infancy, our first thought was…will our next kid or kids be like Kennady? Of course, the key factor we were considering was her disability. Will they be born like her?
Little did we know that 10 years later we would value ‘likeness’ more than almost anything.
Two years after Kennady was born, Erica gave birth to Jude Alen and then 2 years later came Avery Harrison. Both boys with normal boy brains. This meant that they would not be ‘like’ Kennady. Instead, they would be ‘normal’ and a separation would begin between them and their sister. The separation would grow stronger and stronger as they grew up because they would cross all the developmental milestones and with each one, leave their sister’s commonality. We are not sure how much Kennady knows about her differences. In fact, we don’t think she knows a whole lot about it. However, the boys sense their differences from their sister. The only thing that has kept them similar is their toes. That is right. Toes.
They all three inherited ‘twin’ toes from my mom’s family.
top toes are ‘twin’ (connected more than other ones)
That was until last week.
As many of you know, our 2 boys suffer from severe food allergies. In fact, if either eats eggs, he will break out in severe welts, breathing will be restricted, etc. Jude is also allergic to wheat, soy, and nuts. This has defined a huge part of their life. In fact, they have suffered some socially because they can’t eat: cake, pizza, cookies, peanut butter sandwiches, and almost any other food at a birthday party. This has caused them separation or isolation from their friends and other family. It’s not easy to go to a 8 year old birthday party and not be able to enjoy the food and sweets.
Last week, Erica went to school and saw Kennady with a large, red breakout on her hand.
She asked her teachers if she had been bit or stung or hurt in any way. They said that they had not seen anything happen to Kennady from injury or insect. They said, “the only thing we did was cook with eggs… Kennady helped us crack eggs and some got on her hands.”
That brought us to one obvious conclusion. Kennady is allergic to eggs…Like our boys! How awesome is that? They are like each other. They are in the same club. They relate to each other.
We couldn’t wait to tell the boys. You should have seen the look on Avery’s face when we told him. His eyes got huge. His mouth dropped open with a big smile. Jude said, “Really?Yeah!”
I think of Adam when he woke up and saw Eve. He said, “”This at last is bone of my bones and flesh of my flesh” Finally, he had someone to share his world with. Someone that talked back. Someone that walked and understood life like he understood life.
Ironically, with our kids, their common ground is actually an inconvenience, but how comforting is it to know that you are sharing life people that understand your pain?
People are always curious about what Kennady eats, how she eats, etc. It just so happens that this is
What People are Saying