Kayson Strong as an Eagle ~ 2 years

As I sit here watching my miracle boy do his math homework all on his own, I am reflecting on his journey.  Two years ago today, he was still in PICU, still not fully awake, not talking, not walking, my daddy had brought all the siblings to visit and it was so great to see them all.  It was such a scary time for us all and my heart hurt at seeing him just laying there in that hospital bed and not being with my other precious babies during the week.  That was such a long 7 weeks away from all.  Today he is thriving in school, just went to read chap 5 of his book to his daddy for school.  Baseball season will start this month and he is so excited to play again.  He moves up to kid pitch this year.  I am a bit freaked out at the idea of another kid throwing a ball at my boy but I am assured he cannot live in a bubble and all will be fine.  LOL  He is up to his full dose on his new migraine meds.  Doc said it could take up to a year to really notice if they are working well but I did notice the other day that he got a bad migraine, right at dinner time, he tried to eat, he did take Tylenol and ibuprofen, they said he needs both when he gets a headache, then he said his stomach was upset, I put peppermint oil on his tummy.  He laid on the couch and was fussing bc of the pain and that scared me but then he fell asleep for a little while and was some better when he woke.  A little while later he went to bed for the night and was just fine the next am.  Any other headache lately, that didn’t have to be even that bad, would have had him throwing up, resulting in an ER trip.  This time we avoided the ER!  PTL!  I hope hope hope that is a sign that the new meds are working.  The doc said he will prob still get the headaches with throwing up and an ER trip but the hope is to cut the ER visits to once or twice a year instead of almost every other month.  Precious boy is still as silly as ever!  And that red hair!  So so so thankful for his life and his incredible story.  He is now gathering everyone for night night prayers, he loves doing night night prayers and I love his heart!

A crazy week

So I am going to try to write something, this has been a crazy week and my brain is not in a super great place right now.  Dealing with the boy's attitudes and the baby screaming bc I took the iPad away bc its not time for kids tube right no, I feel so mentally exhausted all the time.  Monday I spoke some blog notes into my phone while driving, some of them are super confusing, LOL.  I feel like such a failure as a mother, the kids get so angry sometimes and say such mean and rude things to each other.  I have to fight just to get them to get some basic chores done, the house stays a mess, even when I try to have a place for everything.  Sorry, off track, told you my brain was in a bad place tonight.  Anyways, sometimes it takes me forever to write a blog again bc I think of things to write while I'm driving but they all leave my head before I get a chance to sit down and type them up.  So I realized I could speak my thoughts into my phone with Siri.  However I only have notes for about halfway through mon and the rest of the week will have to be from memory, lol.  Also there's no punctuation in the notes I have so that's interesting too.  I can't believe my baby is almost three!  Another side track, she just walked in here and looked so big and it made me think of that.  Monday am when I took Kalani to dance, she refused to wear her bow and instead insisted on cat ears she had found saturday while we were out at the Hwy 80 garage sales.  Before dance was two parent/teacher conferences, one in person, one by phone.  I missed getting a conference for cayden with one of his teachers bc I didn't read and respond to the email soon enough, sigh.  Anyways, Keegans teacher was over the phone, she said he is doing excellent and they all wish they had like 20 more of him.  That was so great to hear!  Kayson is doing excellent as well, making straight As which is absolutely amazing considering where he was just a year ago!  Then I met Chris at the bank and he opened his own checking account.  My babies are growing!  Then we went for lunch, he chose panda express.  When we got there and were walking in, Kalani spotted the panda and said, "Awww, cute care bear!" lol!  Then We did some grocery shopping.  Tuesday my precious oldest turned 19!  Glenn and I went on a date night that evening, we ended up stopping in at Sams to renew our membership and walked around a bit which led to us finding an arcade table that looks like the vintage pac mans, so we sat and played a game of pac man!  Anyone want to get us an arcade table, its only $500!  LOL  Wednesday was eye appts for Chris and I and those went great!  Chris's eyes are the same and mine actually got a bit better.  Then some Arbys for lunch and another appt and church that evening.  Thurs was a drive into the dentist for all the kids (not miss 19, I'm an adult now, LOL) and that went great too!  No cavities!  Then I took them to fresh for lunch and let them play on the playground there.  We ate outside, it was a beautiful day.  That evening we had french toast for Kirsten's bday dinner and gave her her presents.  Then today kalani and I stayed home and had a lazy day!  That was nice.

hello, its been awhile, I'm sorry

I haven't sat down to type a blog in forever!  My brain feels so jumbled, I don't know what to say here, I'm not sure what I should say here.  Some days are still so hard, and like I know if I try to write something it will just be not great bc my brain is not in a great place.  Or I think about blog topics and think it all out in my head while driving and forget later!  I'm not sure this day or this moment is a better clarity moment but its been so long since I typed anything so here I am, eating pizza for lunch, sitting my room all by myself, not watching Chopped bc we had to get rid of DirectTV, listening to the TV sounds coming from the front room, even with my door closed, feeling completely and utterly alone and forgotten.  So, How's the Zoo these days?  Let me see what my fingers decide to tell you.  Kalani is in dance and loves it, she dances everywhere, the gym, the grocery store, church, our yard, XC meets, everywhere, lol.  She doesn't even always need music.  She still isn't potty trained, its hard bc we never seem to be home consistently enough to work on it well and if there is a day full day we stay home, I'm so tired and mentally exhausted, potty training just isn't happening.  Kayson is loving second grade and doing so great!  He is making 100s on his work and is doing so much different than last year, he's got up to grade level!  its amazing the growth he has had.  He did have two ER visits this summer, everything checked out so that's good but every time he gets a headache and starts throwing up he has to be seen.  It makes me scared for him to get sick at all but I know he can't live in a bubble but oh how I want to put him in one.  Keegan is loving 5th grade and has friends.  He has his own room now bc we were told he needed his own space, that put Cayden back sharing a room with Kayson though.  Keegan also has started counseling and loves having someone to talk to just for him.    He also has been discharged fro his Occupational Therapy.  Sometimes though the words he says are so mean, I don't know why he thinks it's ok.  Cayden is a teen now!  Half of my children are teens!  He has a phone and started running XC, he also wants to kiss me goodbye before the bus reaches our drive in the ams.  A story about him, we were at a local church the other night and saw someone we knew and Kalani and Kayson started up the staircase that was right there!  Neither Glenn nor I were close enough to get there quickly and Kalani started to trip backwards, I was so scared!  Next thing I know Cayden gets there and catches her head right before it hits a step!  I was so proud of him and thankful for his attention and quick thinking!  Chris is my senior this year!  He's in the top 10% of his class, still running XC on varsity, joined the debate team, looking for a job!  Both older teens got their licenses this summer and they both have cars.  Kirsten Started college and got a job.  I'm so proud of my babies!  jhkjvjhwekjfdjruhvksdrhvkwjsnfkejrgelisuhr (oops my fingers went crazy for a second!  Can fingers have a nervous breakdown? lol) We could still use prayers, Silver (fam vehicle) has some maintenance issues, our main fridge is out, the stress is so high and I struggle still with anxiety on a daily basis.  I guess I better go for now, bus is about to be here with three of my boys!  I meet them so they don't have to walk up in the heat.

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.

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

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

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!