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The Good With the Bad

Sunday, April 30, 2017

      I promise you I've been meaning to post. I thought once Joseph came home life would slow down. Why I thought that, I'll never know. Two kids are no joke. 

      Since I titled this post, The Good With the Bad, I must start with the good. While life at home has certainly been chaotic, it has also been super wonderful. We enjoyed the little things like our first official walk as a family. 

And our first trip to Moweaqua. 




We've been on many adventures. 

Played hard. 




And celebrated many holidays. 

But best of all, he has enjoyed hanging out with his sister. (most of the time) 




Life has been very good to our family. 


           Joseph has made some amazing progress. He is walking, eating solid foods, and off of his ventilator during the day. Basically, he's a stud. 


          We have a sleep study in the summer which will determine if he can go without the ventilator at night as well. Things are going very well for us thanks to all of you. You all have sent your prayers and well wishes. You searched high and low for us when we needed nursing. I wish I could hug all of you, I really do. You'll never know how much I appreciate your kindness. 

         Now the bad. As many of you know, on December 20, 2016, my mother suffered a severe brain stem  stroke that was caused by her blood disorder.  She had gone into the hospital on the the 18th. They thought they had the clots under control. I talked to her on the 20th as I was closing my classroom down for Christmas break. We were relieved that she didn't have any permanent damage and that she was going to be released before Christmas and that we wouldn't have to spend another Christmas in a hospital. It is now a conversation that I will never forget.  I was supposed to pick her up on the 21st from the hospital and we were going to make Christmas cookies with my sister, our favorite Christmas tradition. 

Christmas 2015


            Little did I know that our favorite tradition wouldn't be completed. Instead,  I received a phone call that morning from my father stating that she had a stroke overnight and was in the ICU. At the time, doctors were very unsure she would survive. While she has pulled through, the stroke has left her with many physical and mental impairments. 
          She currently cannot see. She has no movement on the right side of her body and only 9% strength in her left leg. She can't hold her grandkids. She can't run errands with her daughters. She can't cook Sunday dinners. 
However, she CAN joke and sing. She can laugh and smile. She can eat solid foods to some extent. She can still answer everything with sarcasm.  :) 

         Basically, insurance has been a nightmare. I'm sure no one is surprised by this. It's actually been quite eye opening to see the care for an adult versus care for a child. We were incredibly spoiled with Joseph. We had social workers and doctors fighting insurance for us daily. 
My dad has not been so lucky.  Insurance has ignored every doctor's request to keep her at a skilled nursing facility where she would be getting rehab everyday. They released her from the hospital before she was fully conscious. They gave her 60 days to make progress that doctors have told us could take years.

       So my father retired and is attempting to care for her full time at home. She needs round the clock care. My father, who has some health issues of his own, is doing the absolute best that he can. In fact, one of the most beautiful things to come from this terrible time is to see the love between my parents. I've always known they have loved each other, but my dad is taking his vows, in sickness and in health, to a level I have never imagined. He doesn't leave her.He sleeps next to her bed.  We literally have to force him to leave the house to grab a bit to eat. He's gone toe to toe with doctors and insurance companies. I've never seen this side of him and it's completely beautiful. But it's still not enough. They both need more help. 


            There are still many items that insurance won't cover. When my mom needs a ride to the doctor the cost is $100. She is now in need of many specialists with many appointments ahead.  She would also be able to attend a rehab facility daily if she had transportation. There is a machine called a hoyer lift that would make it possible for my dad to get her in and out of bed. Insurance also wouldn't pay for a feeding pump because that she had been on since the stroke because, "she was attempting to eat by mouth".  Friends, she was taking about five bites per meal. 

            My dad has fought us tooth and nail on this but I am attaching a link to my mom's GoFundMe account that was set up by a family friend. Any amount is appreciated. 

          God has been so good to us. He's walked us through the valleys and let us sing on the mountaintops. He's given us hope is situations when we thought circumstances were impossible. 
         This my friends, is a deep valley. The medical bills, diagnoses, symptoms, and the little support from care providers have been overwhelming at times. There have been some dark times in conversations with doctors who do not seem to have much hope and being constantly shut down by the insurance companies. Here is what I know. I know my mom and Rebecca Reader is known to show people that she can and she will.


      I love this woman so very much. Her grandchildren are her world. 




        She means so much to my family. I desperately want my kids and my sister's kids to experience sleep overs, cookies, and hugs an kisses from their grandmother. We need someone to help believe in her and believe in her recovery. If you are not able to give finically, please send your prayers. Prayers are more important than money. 


From me, my father, and my sister, we thank you so very much. 

Love, 
Ashlie 




One

Monday, May 23, 2016





Well we made it. Little man is officially not so little anymore. But let's not talk about the past year because you've been with us from the beginning. Let's just talk about these past two months.


Our adoption became final. Joseph was pretty stoked. 


 We had a celebration for the big ONE. We really wanted it to be at home. We really thought we'd have our boy in his room where it's been waiting for a year. But instead we had a small gathering at his hospital. And while it wasn't an ideal location, Jojo didn't really mind. Because he's the best. And the cutest. Here's a million pictures to prove it. 



He loved opening and eating his gifts. 
















He thought he was going to love eating his cupcake.


 But he didn't.




He did however love his new best friend, Frankie the Fox.



His sister even behaved for like 20 minutes. 



I also went all 8th grade and made a slideshow with music and everything. If you want to recap his big year on earth, feel free to watch below. I haven't quite mastered iMovie yet, and probably never will, so don't judge. 




So it's been a year and we still aren't home. And it sucks. I took the rest of the year off to make sure I was receiving enough training for Joseph's care. But at the end of the day, I still have to leave him and I am ripped to shreds. While he has been in great care and has been receiving awesome therapy, we are desperate to have him home. Every day that I walk by his empty room it shatters my heart. 


But here's how you can help. We are basically waiting on nursing. Joseph is going to require home health care until we are trach free. That means we need skilled nurses to come to our home everyday and help us out with our amazing boy. Right now, we have two day nurses, but with Jerod's crazy schedule, we still need night nurses.

So how can you help? Well we are looking for nurses who are familiar and trained with a trach and a ventilator. Joseph is vent dependent and also has a G button. He's one year old and has a ton of personality. His favorite hobbies include sleeping, painting, playing the maracas, and flirting with the ladies. Have I convinced you yet? Maybe you need another picture. 


Come on, don't you just want to come hang out with this kid? If you or someone you might know is interested in applying to be his night nurse, please contact Chrissy with Advantage nursing. The number is 618-659-2209. Tell them you would like to apply to be Joseph Henderson's nurse. 

If you have any questions, please message me or email me at teachinginsweatpants@gmail.com. Feel free to share this post and help bring Joseph home! 

Love, 
The Hendersons

p.s. Thank you to Kristin Fanning for capturing the day! 


267 Days

Wednesday, February 17, 2016



267 Days. That's how long we called Cardinal Glennon home.  For 267 days we walked down this hallway. 




These room brought us so many firsts. First bath, first diaper change, first sneeze, first shots, first bottle, first Christmas. 



It also brought us a lot of firsts that terrified us. First fever, first cold, first ventilator, first desat, first heart rate drop. 
But on January 28th, we left everything we'd become comfortable with and headed to Ranken Jordan Pediatric Bridge Hospital. You might think, "Yes! This is wonderful news!" And yes, it is wonderful for him. This means that Joseph is healthy enough to get out of the hospital. It means that we are closer to home then we have ever been. It means that he's basically been a rockstar since the tracheotomy. 

But, it doesn't mean that I wasn't scared. 
For 267 days we have developed relationships with doctors and nurses. Those doctors and nurses loved Joseph like their own and became a part of our family. I am not sure I will ever be able to thank them enough. 

This journey has been long and at times rough. We couldn't be there every single minute of every single day, but these women were. They were there to answer our phone calls at any hour and put up with my momma bear attidtude when worry and stress had taken over me. These nurses listened to me vent, cry, laugh, and hold me up when I lost hope. 


I have watched them cuddle Joseph and love him, and I have also seen them save his life when he decided to stop breathing. These women mean more to me then they will ever know. They gave Joseph a better life and never gave up on him. They never gave up on us. 


Leaving that day was incredibly hard, but so rewarding. It took a small village to pack us up (you accumulate a lot of stuff in 8.5 months!), but Joseph was ready. In fact, he loved the attention, the ambulance ride, and his first breath of fresh air. 




We have been at Ranken for a few weeks now and his progress has been incredible. He received his helmet a few days before discharge to help reshape his head. He spent too many days checking out the cute nurses and has developed a right side preference. Doctors predict he will only need it for a few months, but as always things could change. 

Right now, Joseph is receiving amazing daily speech, phsychial, and occupational therapy at Ranken.  He also has enjoyed new visitors, meeting friends for the first time, and amazing activities the hospital puts on for their patients.  He is able to move about in a stroller and we can roam around the facility as we please. Just to see him in a stroller is such a joy.


And he's getting special perks like puppy grams. Yes, that's right, it's a real thing.



He is still not sure about his little sister, but we're pretty confident they are going to love each other.
 

We don't know how long we will be at Ranken. We do know that we are closer to home then we've ever been and it feels really good. There is always a chance if he gets sick he could end up back at Cardinal Glennon for awhile, but for now, this is our new home. We are so proud of Joseph and we could not be more thankful. 

January was a busy month. With the transfer of Joseph and the birth of our daughter Eliza, Jerod and I are incredibly thankful. One year during a bible study I chose to focus on the word JOY. I cannot believe how much joy has come from just in one year's time.  This year has been a roller coaster and unpredictable, but worth every single moment. God is so good. 


Lots of love, 
Ashlie