Sunday, March 10, 2019

Kayson Strong as an Eagle ~ One year later

Wow!  A year ago yesterday we brought our baby home!  What a day that was!  I've been planning on writing this blog for weeks, at a year from the stroke, a year from getting out of ICU, a year from entering inpatient rehab but I kept not.  Honestly, its been a rough year for me.  I don't always talk about it but I have been dealing with depression and high anxiety since we brought baby boy home from Dallas.  Everytime I would think oh I'll write this blog, I would just feel so down and overwhelmed that I couldn't form my thoughts well.  This year has had a surgery for baby boy, an autism diagnoses for another, everyone in school and no more homeschooling, an oral surgery for me, sadness at church, Derr Zoo's first broken bone and plenty of other drama.  The trips to and from Dallas have put a strain on our finances and now Silver (Our big SUV, the only vehicle we own that will fit all of us in it!) is sick sick!  But this week we are camping at Baby boy's request!  I just hope that we can find our way back to a better togetherness, that we can get a bit closer to God, that we can remember the good in our lives and each other this week.  Camping has always been grounding for our family.  A year and a few weeks ago the bottom fell out to our world.  I will never ever forget that feeling as the NP came in the ER room and baby boy just laying there and she said they were flying him to Dallas ASAP bc he had a mass in his brain.  That feeling of just looking at your precious child and your heart breaking in two or more pieces, the phone calls that needed to be made, people showing up, the waiting, the uncertainty, the numbness, so numb and scared.  Then we learn that its not a mass but a stroke, a stroke!  Our seven year old red head had a STROKE!  He shouldn't have lived to even get to a hospital but he did!  They aren't sure (medically, we know it was GOD!!!) how he survived the stroke, they said he shouldn't have bc it was so very massive but it had not touched his brainstem so as long as they could keep the swelling managed and as long as he didn't have seizures that would cause further damage, the prognosis was good, so they said he needed to be put in a coma to allow his brain to rest and eventually start to heal.  My baby boy just laying there, unresponsive for days, the waiting to see his eyes, to see any glimpse of him, would he remember us, would he be scared, I didn't know it would take forever for him to really wakeup, I didn't realize just how long before he would talk again, if he would talk again, would he walk again, would he be able to learn and live, would he be able to use the restroom on his own or remain in diapers, what did our future hold???  It would be seven weeks before we would be able to take him home, walking and talking.  Now a year later, he is learning to read and he is counting to 100.  He is so silly and its so amazing to watch him continue to heal and grow.  He has been cleared to play baseball this spring and he is so excited but oh he looks so small out there and it scares me to pieces, honestly I kinda just want to put him in a bubble, which his doctors assure me I cannot do!  LOL! So here we are a year later, still trying to  process what all has happened, trying to learn what our family looks like in all this new, trying to stay a solid family unit when it feels like so much is trying to tear us apart.  Your prayers are still much appreciated!  But we are grateful, so thankful for our boy's life, so glad God decided to spare his life and let us keep him!  As I watch him run and play and learn and I am just in awe of how far he has come and how close we came to losing him.  Thank you all for your support and sharing this journey with us.

Wednesday, January 2, 2019

It's a new year

wow, 2019.  I am sitting here thinking, thinking of last year and what this year may hold, trying to hope in a better year, trying to believe feeling ok again is a possibility.  Then I feel so guilty, guilty for not feeling just thankful all the time, guilty for feeling depressed, guilty for feeling so overwhelmed that I just feel emotionally paralyzed (is that a thing?) so much of the time.  Sometimes I'm so scared to think that things could be calming down and that we could just be happy again bc something else may happen, it feels like something always happens.  I just quit typing for a few minutes and contemplated deleting everything I had just typed bc maybe its too negative, maybe its too depressing (no, that's the weather, cold and rainy, rain rain rain rain, I guess at least its not storming!), maybe its too raw and no one's business but I struggled and talked myself out of hitting that delete button.  Why? Because, it is real stuff, this is how I'm feeling, these are some of our struggles.  This is hard stuff, overcoming all that our family has been asked to overcome is hard.  I don't know who all will read this or what you may be going through too but maybe you need to know you aren't alone.  God is carrying us through, I believe that but the day to day is hard.  Moments when I reflect how close we came to losing our precious boy, this holiday season was so difficult, I kept thinking what if he wasn't here, what if we had lost him.  Yes, I was thankful, I am thankful, he is here with us and I cherish that!  I would just look at him and watch him in awe of what he has lived through, in awe that God allowed him to live, they said more than once, he shouldn't have lived, the doctors don't know how he did!  He quit breathing twice and they said he really shouldn't have made out to our ER.  Right now as I type, he is playing catch IN my kitchen with his 12 yr old brother!!!  I should stop them!  Boys should NOT play catch in a kitchen!  But I'm not (insert facepalm emoji).  I'm just going to be glad he CAN play catch, and I can't send them outside in this cold rain!  and if they are playing catch together, they are bonding and OFF devices and it's just a foam ball anyways!  Oh how we change!  Sorry Teenagers, I know I never ever ever would've even thought about letting you play catch in the kitchen!  On that note, here's a funny thing.  So, the other day I was in our room talking with both teens about life and such things and Chris mentions that sometimes he thinks the youngers need disciplined and don't aways get it.  I said, "you're right" bc, well, bc he is!  lol  When life is crazy and you are tired and feel like you are barely getting through the days and dealing with issues of your own, you just don't always have the brain power or energy to fight certain battles even if you should so sometimes things slide, certain attitudes, too much screen time at times, arguing with each other.  School makes it harder too and their daddy's schedule, we are all so tired, all the time.  Anyways, so back to the funny thing story.  So After this talk, I walk into the dining room, through the kitchen where a husband is cooking dinner but he can see the living room and couch clearly from the stove and what do I see in the living room???  The two youngest jumping, full on, standing up and jumping on the couch!!!  you can just see these two little heads popping up over the top of the couch, well one head stayed over the top was getting higher and lower, lol!  I knew I should say something but they weren't getting hurt or being overly wild to get hurt, they were just jumping up and down, up and down, up and down in their spots.  As I'm standing there watching and trying to decide to yell at them to stop and sit down but also thinking how great it is that Kayson can jump up and down even if it is on the couch, out walks Chris!  So instead of saying something to the littles, I turn to Chris and ask, "oh, is this one of those lack of discipline situations you were talking about?!?"  LOL  Of course Glenn hears that and asks, "what?"  and I say, "You're youngest are jumping on the couch!" and then he says,"Sit down on that couch!" and we all laughed at the irony of it happening right after I had talked with the teens.  #neveradullmoment

Monday, October 15, 2018

Onward

by Kirsten Derr

Onward we go on
There's no stopping us
Fighting for freedom
Fighting til dawn
There's a chance we won't go home
There's a chance we will stay
Fighting for freedom
Fighting til dawn
Since we can't go home
Til this this fight is good and done
Tell the enemy there's no stopping us
Fighting for freedom
Fighting til dawn

Saturday, October 13, 2018

An autism diagnoses

This wasn’t a surprise, I’ve suspected it since he was around 2.  He didn’t talk right away, in fact we started baby sign language with him to help him communicate and then he started speaking after that.  He also started a “hand thing” as he has come to call it, right before he was two.  He gets his hands up by his face and kinda twists them, it’s hard to explain.  I took a video of it and showed his pediatrician who assured me it was not seizures bc we could stop him, it wasn’t tics, it wasn’t a few other things and reasons why but I don’t remember it all but he also said bc Keegan is loving and engages with his family it wasn’t autism.  That made me feel better for a time but also made me leery of seeking another opinion too.  However, as he got older and research changed, I wondered more and more.  Once when he was three or four, we were in Walmart, We had ate at the subway there and I went to get what we needed while Glenn stayed with some of the kids while they finished eating.  He told me a lady had been watching Keegan and asked about him bc she was a special ed teacher at a local school and noticed his “hand thing”.  This made me wonder all over again.  Over the years I’ve kept noticing things, all seemingly small but all different from the other kids and all put together really makes a difference.  Now, I’ll pause here to add, I love my Keegan!  He is my rainbow baby (baby born after a miscarriage), a fact he really enjoys knowing!  I’m not looking to change him, seeking a diagnoses was about seeking answers and help in the areas he needs extra help to guide him to be the best possible Keegan he can be.  My goal with all my babies is to enable them to be productive members of society.  Back to those small things we would notice, he had a very slight reaction to a vaccine around 9 months, nothing I could really document, or nothing ER worthy, he was still responsive but just didn’t seem himself for around 24 hrs.  It was a vaccine none of the others had bc they weren’t giving it when the older ones were born.  I do not believe this caused his autism but rather the autism possibly caused the reaction.  But this is not a vax debate blog so I will move along.  If people are interested in my vax journey, I may blog about that at a diff time, it might be an interesting story to some, lol.  Sometimes while doing his “hand thing” he would walk in circles and be loud, like we couldn’t watch TV if he was living room bc he would get so loud!  This was hard bc we wanted to let him be who he was but it was disruptive to the others and we all have to learn to live together, but he would get frustrated if he was asked to go to the other room (this wasn’t a new thing for any of them, if we wanted to watch a family movie but someone wanted to play instead, they were asked to play in their room) bc he wanted to be with the family and that pulled on my heart!  But once he was talking good, if you sat and listened, he was telling stories.  On the topic of movies, another thing I noticed is he seemed to need the case to a movie to really stay engaged in it.  Somehow it helped him relate to the movie, I guess.  I assume it was a concrete object to help him understand the more abstract?  He seems to have outgrown that now.  We also noticed some lack of control at times and he would get angry which has escalated some as he has gotten older, hence the knowing he needs some extra help to learn to control it.  There was also this seemingly compulsion to smell his daddy’s coffee, everyday!  Occasionally he is bothered by loud noises.  However, most people are shocked when I mention possible autism and now when we tell of his new diagnoses that has confirmed what we were seeing and suspected bc he hides it in public most of the time.  Also another reason I was confused if we should seek a diagnoses.  What confirmed it for me was I had taken a recent video of Keegan doing his “hand thing” and when Kayson was in rehab, he saw a neuropsychologist everyday so one day I asked if she would be willing to look at the video and what her opinion was and she said, “get that baby evaluated, he is high functioning autistic and they get missed too much bc they can hide it!”  That was all I needed to hear.  And he does hide it, at church in children’s worship, they have noticed he walks circles sometimes but have never seen him do his hands and upon further discussion, our children’s director realized he always puts his hands in his pockets while walking his circles.  So he has learned to not show that but we never told him to do that.  School also doesn’t see it.  Another thing was once he was talking, he would always say, “me, Keegan”  I loved this.  He is also very literal in his speech sometimes, the entry to our house is “the shoe way”, a stapler was a “pincher”, his pacifier was his “mouth”.  I bet people wonder at us bc this one has stuck and we still call pacifiers “mouths”, lol!  So now we have a diagnoses, we have some answers, we have a place to start for help.  His evaluating psychologist suggest he gets speech therapy and OT and counseling with someone experienced working with autism, that we join a parent support group and seek help in learning how to help him and discipline him.  That we seek assistance through the school bc he says it’s just a matter of time before they see certain behaviors.  So now we are on this journey too.  Our Keegan does bring so much joy to us.  We do covet prayers through this time and for him as we all adjust to the reality of a diagnoses.  It’s weird bc it changes nothing but it also changes everything!

Monday, October 8, 2018

Bow Hunter's Stroke

Broken
Odd
Weakness

Headache
Unbelievable
Nausea
Turn
Eagle
Rare
'
Strong

Steri strips
T-shirts
Risks
Obstacle
Kayson
Experience

9-29-18

Monday, October 1, 2018

Pediatric Stroke

Pinching
Eagle
Dallas Children's
ICU
Angiogram
Therapy
Respiratory failure
IVs
Cerebellum

Strong
Tubes
Ronald McDonald House
Oxygen
Kayson
Excruciating

9-28-18

Saturday, September 29, 2018

Kayson Strong as an Eagle ~ Poem

9-28-18

Kayson
Adorable
Young
Sunshine
Outstanding
Neurologist

Specialists
Tron helmet
Restless
Optimistic
Nurses
Gifts

Alive
Strong

Angiograms
Newspaper

Eight
Answers
Gofundme
Loving
Eagle