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!

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

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

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

STROKE

9-27-18

S - scary, savage, speechless, surgery, surreal, sterile, sudden, seperation, stress, stitches, siblings, strong, signatures, support, syringes

T - torture, taking, tubes, timing, tearful, terrifying, trains, tension

R - rehab, ripping, relearning, restraints, restrictions, recovery, restless, relief, rare

O - overwhelming, oxygen, ot

K - kindness, knots, kits, knowledge, kayson

E - er, eeg, exhausting, eagle, explanations

9-14-18

by Kirsten Elizabeth

Anger anger anger
Anger clouds my eyes
Angry at God
Angry at me
Red vision
All I can see
How do I break free
From this emptiness in me
God I'm trying to trust
Trying to believe
Everything keeps blowing up
Something happens
Keeps happening
Where has my childhood gone
Where is my faith
My trust
In people
Twisting turning
Twisting turning
Turning twisting
Turning twisting
I CANT SEE

help help
Help help
Help help
Help me please

Anger anger
In my mind
Anger anger
In my heart

God please
hear me cry
Help me replace this anger
With peace
With love
With trust
And with wisdom

9-20-18

Just sitting here, thinking what to type.  Kalani is watching a Baby Einstein video about water, those videos are so peaceful.  Hey, maybe I should turn one on everytime the boys are fighting, then at least I might feel some of the peace from it.  lol.  She has already played outside, slid down the slide, picked up cats, got red faced, ran all over so we came in to cool off with a bottle of milk, a/c and a movie, lol.  After I finish typing, I'll make us some lunch before we have to go get Kayson from school and take him to PT.  He usually does PT on wednesdays but he had an eye appt instead so we had to move it.  Thankfully his eyes are good and healthy, although she did say he has some trouble focusing, his eyes don't come together as they should for closer things.  For right now it s something to watch, he could outgrow it, or he could end up needing glasses.  However, Chris had an appt too and he is near-sighted like his mama and is getting glasses.  I'm thankful though that I don't have to wear mine all the time, mostly if I'm feeling eye strain or super tired.  It has been a busy week and I have to get ready for a bday party on Saturday.  Kayson is so excited!  I just watch him sometimes, in awe, of how far he has come, all he's been through, that he is still with us!  That's on my mind so much, how close we came to losing him, how very close.  Y'all the other day he did a somersault, I about freaked but he did it so fast!  He scared us all, lol, but he's perfectly fine!  I don't even know if its ok for him to somersault.  We were talking about Kalani learning to roll in dance and how she's been "practicing" but won't do it in class and he just did it!  The other day, earlier this week, he went running out the door to greet his daddy who had just got home and just jumped right off the porch over the steps just like it was nothing and something he's been doing forever.  It's really super amazing!  Of course, I think all my sunshines are super amazing!  Kirsten just shines a light everywhere she goes, I love watching the young lady she is becoming.  Chris is running on varsity this year, how did that even happen, he has worked so hard!  His teachers love him!  He even got a brag note in the mail the other day from a teacher!  I love how these teachers work so hard to make each child feel special and wanted and loved.  I wouldn't choose any other district.  Cayden has came home with two "Cool Cat" compliments in his planner.  Keegan has gotten two notes in his planner bragging on him!  The older four are working so hard for the Madagascar musical they are in next month.  They are really enjoying this opportunity, I'm excited to see it!  Although, apparently Cayden fell off the stage in rehearsal the day!  He's fine!  Everyone has laughed about it.  At least it wasn't a ten ft cliff like Chris I guess!  LOL!  Well, I need to put another Baby Einstein in and make us some lunch so I think this is all the ramblings you get today!  LOL.

Kayson Strong as an Eagle ~ Big news!

Thursday 9-13-18

And we find ourselves with another trip into Dallas!  This one on a school day and guess what?  Kalani did not sleep well, so its another tired trip in!  Why does lack of sleep always seem to accompany Dallas trips for one reason or another?!?  lol  We are up early to see the older 4 off to school and Daddy is off this week so he is keeping Kalani for the day.  She got upset when we left though, she kept saying, "go, go" lol  Oh how I hate the Dallas traffic.  It scares me and I'm so nervous about when I have to drive in bc Glenn's not planning on coming to every appointment soon. The appointments so far have been pretty significant and ones He didn't want to miss but we think soon the appointments will pretty much be just be follow ups to check on baby boy's progress and not so crucial for Glenn to come so he can stay home to work.  We have been very blessed and are very thankful that he has been able to get off for everything so far!  We made it to the hospital and to X-rays, they took his collar off this time for X-rays and had him move his head up and down.  Then we went up to his neurosurg appt.  Doc said X-rays are all the same and thats what we want and that Kayson could remove his collar!  permanently!  OH MY!  Did you read that?!?  Y'all this is BIG!  Baby boy got to take his collar off and doesn't have to put it back on!!!  Hey, he actually still has a neck!  I almost forgot what it looked like!  Now we have some time to kill before appt 2.  That of course means a stop at the trains, I can't stop looking at baby boy, he looks so big without the collar!  Then a trip into the gift shop and a water basketball game for celebration.  He has been wanting one of those water game things for a while now.  So of course it had to be opened and filled with water and then in the hallway we saw his neurologist!  He was so excited for Kayson having no collar.  I told him I keep wanting to rub Kayson's neck and he said, "Don't be weird, mom!" LOL  He's a great doc!  We also thanked him for referring Kayson to make-a-wish and told him we just found out that Kayson qualifies for a wish!  Later on in the car, Glenn and I were talking about the wish and Kayson was on his iPad so we didn't know he was listening  and I jokingly told Glenn that Kayson has wished to see a polar bear, bc you know, SNOW!  LOL and Kayson says, "When, mama, when did I wish for that?!?"  LOL  oops, I got caught!  Walking out of the hospital we noticed a smiley sticker on the floor and baby boy found a dime. Also, I cried, I'm really not sure why, so many emotions all wrapped up in the collar removal I guess. We found a Cicis for lunch, then onto the second appt with psychiatry.  No changes there, everyone is satisfied that the intuniv is helping and working.  Both docs want follow ups in dec so unless something changes, we only have one dallas appt in oct, that's a first since the stroke!  and NO appts in Nov!!!  That's just an amazing feeling!  Weird too though and a bit scary if that makes any sense.  Then we made is home and daddy had cleaned for us and done laundry all while watching Kalani!  So touched!  and thankful!

crazy friday

So the day starts way to early, I am so not a morning person!  However, I do enjoy my time with Kayson waiting on the bus.  Just sitting and listening to him and his logic.  This day we took Kalani with us bc Glenn went up to the school to be a PTA dad greeter.  I think it is soooooo neat that they are getting dads involved and that dads are being involved!  She was still so tired.  When Glenn got home he said he was greeting the kids getting off the buses so he got to see Kayson arrive at school and got a video and he saw him in class before leaving the school.  So neat!  Then Kalani and I got ready and left to spend the morning running around with my sister and her baby.  First we stopped in at Hope's Closet, a local resale shop whose precedes go to help abused women and children.  So Kalani is sitting in the buggie, honestly, she's not used to that bc she's usually being carried or there's an older sibling to chase her and hold her hand but with them all in school, her life has to change some too, lol.  She was being real good, mostly, I mean she tried pulling some clothes off their hangers, threw her pacifier on the floor a few times, tried escaping the buggie too, lol, but those are expected things and I can deal with them, she wasn't screaming or upset or anything.  I usually talk to my little bitties so I was just telling her things like, mama's shopping, sorry older sibs aren't here to chase you but your going to sit, ewww don't throw that in the floor but I wasn't upset either, just talking.  All of the sudden this lady taps my shoulder, I knew she was there but she was looking at the other rack and not paying attention to us, she kinda scared me and then I realize she has a tootsie pop in Kalani's reach, who grabs it, opens it, throws the wrapper down (I picked it up) and pops it in her mouth before I can fully process what's happening!  This lady then says, "I carry these with me for the children, to help the mamas when they are shopping"  WHAT?!?  Lady, you are totally creepy, my child did not need sweets or stickies or candy from a stranger, this is NOT helping me at all and now if i take it, I'll have a screaming baby that was perfectly fine before and happy for the most part!  Not to mention, suckers are a choking hazard!  Not only that bc she slobbered stickiness everywhere, I had to practically give baby girl a wipie bath (with borrowed ones btw bc of course ours were MIA!) and change her clothes when I got to the car and it was HOT!!!!!  NOT helpful, lady!  just creepy!  Why would anyone do that?  Let's just NOT!  UGH!  Then we grabbed some lunch at McDonalds and while I was ordering, Kalani was standing right behind, she had her hand on my leg and I could feel her but as I was about to pay I realized she had let go so I turn and don't see her right away, like seconds, people!  The guy behind points and she was climbing up on a chair!  This girl!  so I grabbed her up and continued to pay, feeling most embarrassed!  Then this McDonalds only had two baby seats and one had been grabbed up by the mom that walked in seconds ahead of us, lol.  My sis was going to just hold her baby girl bc I was nervous about mine running off again but then we sat where there was a booth up next to a wall so I could sit Kalani on it next to me and she couldn't easily escape and my niece could use the baby seat, so it worked out.  After lunch we ran by Target, I picked Kalani out an outfit for her mommy and me movement class she is starting, closest thing to a dance class we can get this young, she just dances all the time!  Then Dollar Tree bc it was right there and I almost had a major panic attack right there in the store bc they have their halloween stuff out and that included rather large s-bugs that I am so very terrified off, like I had to completely avoid the whole front area of the store, honestly had I not been with my sis, I probably would've left!  It's bad!  After that, we parted ways and I headed to park day, however as I got within like 5 min of the park it started pouring rain!  Seriously?  lol.  It was a short lived shower so we still got out to visit with the other mamas and since it hadn't rain much, I didn't realize just how wet it would be!  This resulted in a second wardrobe change of the day before we left the park bc I was not putting her in her carseat like that!  But it was enjoyable to visit with my mama friends and Kalani had a good time running around the park.  On the way home, though, I realize that I didn't grab her bow and she didn't have it on still when I changed her and it was one of my favs!  I almost cried!  It was possibly about to rain and I was barely ahead of the first bus so I really didn't have time to go back and look, I was so sad!  Right as we got home, Glenn was leaving for work and I told him about the bow and the park is on his way so he stopped and looked and found the bow!  Whew!  I was soooooooo happy!  :)  big kids got home, kirsten was holding Kalani up front in her lap while waiting for bus 2 and opened her mail, a college had sent her this big poster picture of their campus and Kalani really liked that and talked and pointed, it was so cute.  Two boys went ahead and walked up the hill to home bc they didn't want to wait and it wasn't raining.  Then Kayson made it home, he had a good day.  :) Then we drove up the hill to home, had snacks, everyone competed to tell me about their days, devices were played on, ready player one watched again (this seems to be becoming a daily phenomena), Kayson left to spend the night with Papaw, dinner was ate, Greatest Showman watched at the teen girl's request and we were all exhausted!!!  That was our crazy friday!  LOL

First day of school 2018

Wed 8-22-18

I am so NOT a morning person!  But I managed to get up, I have managed to continue getting up too!, made cinnamon toast for breakfast, got meds and vitamins given, pics taken and everyone out the door.  First stop the High school to drop the teens.  They get out, give me kisses and pause to let me take another pic.  The teacher that was greeting said, "Ya'll make your mama so happy!"  :)  Then to the Jr High.  Oh my word, that is a crazy crazy line!  5 rows of cars trying to bleed into one line and the guy kept skipping our row and we had two other schools to get to after this one.  Took 30 min to get this child dropped off!  but thats how the first days go and there are a lot of kids at the Jr. High and at least the others won't get in trouble for being late and everyone is understanding and this is about the only day we deal with drop off bc they ride the bus the rest of the time but gotta have those first day pics for FB.  Ok, FB aside, yes the pics get posted, but I would want the pics anyways, I take pic of everything!  :)  Cayden asked for peppermint for his tummy while we were waiting bc he was nervous.  :( Its hard to leave them when they are nervous!  :(  Then we made it to the front of the line and Cayden got out, kissed me goodbye and someone was there taking first day pics and told him to kiss me again to get a pic of it!  Wish I had thought to ask if that pic would show up somewhere or how I could get a copy!  Oh well, just kinda neat it got taken.  :)  then he paused on the way in to let me get a pic.  Then on to I-4!  We walked him in!  Oh, he looked sooooooo nervous, almost like he was about to throw up and he was pale.  It was his first first day.  And he was so quiet.  He put his bag in his locker, I got a pic and got a pic of sitting at a desk.  His teacher assured me he would be just fine and she even called me that afternoon and let me know he was doing great and participating and no problems!  That really touched my heart!  I cried leaving him!  And we still had another one to drop off!  North Elementary!  LATE!  and we had to stop and buy him water bc we forgot his in the fridge at home!  but it was not a problem that he was late, I'm so glad everyone is so kind and understanding!  He was soooooooo excited!  He was bouncing down the hallway!  I took a selfie!  We got him to his class, he went straight to his desk and started working with the pattern blocks that were out.  I got his pic and kisses and left, or tried to leave, lol, I had to stop at the door and look back!  I cried down the hallway!  That was so hard!  Trust, I have to trust God, I have to!  Kalani was just walking down the hallway like she owned the place.  She makes everyone smile!  :)  You know, there were several people in line at the office to register their kids, I could understand a few, I'm sure people move at the last minute, have emergencies and just get back but this was a lot of people!  How could you do that to your kid, on purpose?  Wouldn't you want to have it done and meet their teacher ahead of time and not have them miss so much of their first day?  I just don't get it!  and again, I'm not talking about extenuating circumstances, we have those at times in different situations and kids adjust just fine and have a great ability for understanding and adapting but to just not register until the last possible moment just bc you just don't, smh.  Anyways, it was just kind of a shock to me to see so many and I felt sorry for the staffs having to deal with it all but they were all still super smily and helpful.  :)  Then we dropped Glenn at home so he could sleep before work and Kalani and I went to my sis's house for a cousin playdate.  The girls are so precious, they played, we talked, had lunch and then we came home for a nap before meeting the buses.  When we walked in the house Kalani started yelling for Keegan and looking for everyone!  we got a nap and then went down to get everyone off the buses.  We have two coming to our house this year bc Kayson is on the special bus.  Kalani was soooooo excited to see everyone, as was I!  Everyone had great days and stories to tell and papers to be signed.  A few days later Kayson said, "Mama, when everyone is trying to talk to you at the same time, we need to do what I do at school, we all need to raise our hands!"  lol, It hasn't caught on yet!  And the 2018/19 school year has commenced!

Meet the Teacher!

8-20-18 Monday
Oh how I have been so close to tears ALL day!  I cannot believe they will all be in school ('cept the baby) and Derr ISD is closing!  I have soooooo loved homeschooling my babies!  Watching their eyes light up with knowledge and knowing I helped that happen.  I thought I had more time with the younger boys home with me.  Oh how life can throw major curves!  So we all relaxed some in the morn and then got ready for a busy busy afternoon and evening.  We all loaded up and I dropped Kayson at his therapies and Kirsten stayed to take advantage of the quiet waiting room and work on her summer work.  She is so not ready for school to start again.  Its really hitting her that it is her senior year!  Us too!  How did that happen?  How did we get so old?  lol  Then I ran by a friend's house bc she had a lunchbox to give away, a groot one.  I don't keep a lot of lunchboxes bc the kids get lunch at school but there are a few days they need to take a lunch, like test days and since they all love groot, I thought well it might be nice to have something for them to take a lunch those days.  While I was there she also gave us three Power Ranger back packs.  The three younger boys were so excited!  Even though they already had others, two decided to use these for the first day!  Kayson has been switching his backpacks everyday, power ranger, ninjago, power ranger, ninjago, power ranger and so on and so forth, lol!  I just love to see their smiles!  Then we picked up Kirsten (she got some work done! yay!) and Kayson and headed to the elementary school for the first meet the teacher of the night.  I'm so thankful they staggered the start times of tonight at each campus by an hour, I think tonight might actually be do-able since we have three campuses to get to!  The teens won't have meet the teacher till after school starts and that makes tonight more doable too!  It's sooooooo HOT!  *melting emoji* *why don't they have one yet?* We get to Kayson's school and find a place to park, wow, there are a lot of people here!  There's a line to get in the door and we are even a bit early.  All this new, I'm not so great with new and so many people.  breath, just breath..........  Meet his teacher and her aide, he is in the inclusion class.  They are soooooo sweet.  His teacher was patient and listened to all I felt she needed to know, we had paperwork to fill out, Kayson got a smores snack thing from the teachers, it said something like we can't wait to know you smore, lol, super cute!  There were kids all over that classroom, sitting in the teacher's chair, laying on the rug, running from her brothers, I mean seriously where are their parents?!?  OH, WAIT!  those are MY kids!  *facepalm*  LOL  They really were being pretty good, not really causing any issues but they were distracting me from getting the paperwork done bc I was trying to make sure they didn't destroy anything and Kalani was all over and at one point I did have to tell Keegan to get up off the rug bc he was laying in the middle of the floor!  We left by playground so Kayson could see it and we could talk to him about how to stay safe during recess.  I had trouble getting out of there, cars were everywhere and just getting there and also others trying to leave, crazy crazy.  But someone let me out eventually and we were on to the next school.  Intermediate 4.  Have I mentioned its sooooooo crazy HOT!!?!!  Now to meet Keegan's teacher.  She is soooo sweet!  She took his pic for her board, we found his locker, checked out the library, he is way excited about that!  Cayden showed him the cafeteria too.  Then onto the Jr High!  It is still so so so very HOT!!!!!!!  The Jr High was super crazy!  I heard they have 440 sixth graders and had to redo several schedules bc they had to hire like 30 new teachers and don't even have enough lockers for everyone, and this is the old high school!  We looked for Cayden's first period bc we were supposed to go there to get his schedule and then go to his other classes.  But the little gym it told us to go to was locked, there were other parents there trying to get schedules too, we didn't know what to do and we were waiting outside and it was so hot, I was pretty close to tears again, like I said I had been all day and I don't handle the heat well and this was just horrible.  I know it's crazy and it's a lot of kids but I wish someone had thought ahead and put a sign up or something telling us where we were actually supposed to be.  Glenn tried to walk to the front to get info but it was so crazy up there, he wasn't even able to talk to anyone in the know, finally before he got back to us someone happened to see us all standing there and said it was actually the big gym we were supposed to be at!  Did I mention how hot it was??  Seriously, I felt like I could faint!  I never have from the heat but I sure feel like I can't even think or function when I get that hot. I watch other people still fine even though its hot and I'm like I don't know if I can even walk to the cooler inside.  Anyways, I called Glenn and told him, he was relieved since he wasn't getting any closer to finding anything out and we make it to where we are supposed to be and we get his schedule and locker assignment, he did get a locker, which we found and he put his supplies in that he hadn't dropped off in his classes and put his lock on it!  (This is significant bc then the night before the first day, the boy asks, "Mama, what did you do with my extra key?" Now you have to understand, this boy insisted on getting  lock key *A YEAR AGO*!!!!!  when he first started 6th but then we moved him back to 5th, I haven't thought of this key in a year!!!  WHAT?!?!  Is my kid going to be the kid who has to get his lock cut off the FIRST day????!!!????  Seriously?!?!?  Who does that??????  MY kid!  apparently!  *facepalm*  Not only that, he waits till bedtime to ask!  So we send him to bed, thinking thinking so hard, Glenn looks on my keyring and sees a key that look likes a lock key, I don't have a lock, this must be the right one, I hope its the right one!  Glenn takes it off my ring, finds an empty ring in the key box hanging by the door, affectionately called "The Birds" bc it has a pic of birds on it and puts the key on the empty ring and we hope for the best!  Turns out it was indeed the right key and we were all so thankful!)  We dropped his first period supplies in the gym, left Kirsten sitting with Keegan and Kayson bc they were so tired and hot and it was just so crowded everywhere and went to find the rest of his classes.  We got all his teachers met, supplies dropped off in the correct classes, he has all diff teachers from last year except one.  I was so hoping he would get more of the same teachers, they were so caring and helpful but these teachers seem just as great too, honestly.  We saw other peoples we know and we were finally done.  HOT, TIRED, EXHAUSTED and OVERWHELMED but done!  We did it!  We made it to each school, met all the teachers and we survived!  LOL  I did cry all the way home though but Glenn went and got pizza and brought it home, we were in two diff vehicles bc he had worked during the day and met us at the first school.  I want to give a shoutout to our teens here bc they loaned us the money for the pizza bc that wasn't in the plans.  I am so thankful for their willingness to help us out and they have such kind hearts and are so understanding.  They were paid back at payday which was just a few days away.  And we came home and crashed!  Had dinner, it was really good and we were all so hungry and then we sent everyone to bed!  Whew!

Kayson Strong as an Eagle ~ Surgery follow up

Thurs 8-16-18
This time is a day trip.  Oh but it was soooo hard to leave.  Baby girl was running a temp and not feeling well at all so a friend of Kirsten's so kindly came over to sit with her.  Oh, she cried when we left!  Victoria turned on Pink Fong, Baby Shark for her, oh how I hate that song!  but baby girl absolutely LOVES it!!!  If you turn it on in the other room, she will hear it and come running!  Then we dropped the four olders at Marmie's so she could run them shoe shopping in the am and get them to their Madagascar practice in the afternoon.  Ok, y'all we are like a super weird family or something, so I walk the olders in while Glenn waits with Kayson in Silver and Mama is asking about baby girl and we tell her how she cried but was watching Baby Shark and Mama was like what?!? so what do we do?  All of us, including me and even the teens!  We break out in the baby shark song complete with motions!  *insert facepalm emoji* LOL  Then we ran through McDonalds for some breakfast, the lady was kinda rude, got our order wrong, Glenn had to run in to get it fixed but he came out with an OJ he didn't originally order and decided he wanted, LOL.  *insert another facepalm emoji*  Then of course was our Bucees stop.  Kayson bought another gun!  This one shoots little soft foam balls!  I think this is becoming a problem!  LOL!  We also picked up a round stuffed Bucee for baby girl.  Still having a hard time with having to leave her not feeling well!  Then the traffic, I HATE Dallas!  We almost got hit!  Lord, please place angels of protection around us and our vehicle!  Then we make it to the hosp and Glenn is dropping us off before parking bc we are running a tad late bc of the traffic and all the sudden I remember we were supposed to arrive early for an X-ray!!!!!!  OH NO!  I completely forgot!  I knew I would forget something sometime my brain has been so scattered!  We get all checked in, the front desk doesn't know if there is an order for an X-ray, I almost put the security sticker on upside down *what is it with these facepalm emojis this blog*, stopped by radiology, they confirmed the X-ray order but we needed to check in upstairs at the doc first since we were late.  Finally make it upstairs and couldn't get in the door!!!!  It felt locked.  What is it with today?!?  Other docs come by and door opens for them!  They had maintenance come by and he said its the airflow restricting the door from opening when the ac is on, so I'm not completely crazy!  But now I just feel like crying and I'm having panic attacks!  Anyways, we get all checked in, get the X-ray done, it looks great!  Kayson gave me one of his X-ray stickers to put in my book of notes.  Got a note for school restrictions, this whole school thing is getting too real!  How do I let go?!?  Another appt in three weeks to discuss removing the collar.  I know thats what we want, thats why we did the surgery but seriously, it terrifies me!!!  Everything terrifies me with this child now!  Why, why can't I just put him in a bubble?!?  Anyone have a bubble I can have???  Baby boy wants Chick-Fil-A for lunch, find one in Dallas but theres NO inside seating!  What?!?  This is CFA!  Its supposed to have inside seats and a playground!  Who builds one without these things?!?  What is it with you Dallas???  LOL  So we decide to get out of the big city and then find one.  Lunch, I napped, then HOME!  Baby girl had a good day and is feeling better and liked her Bucee!  The kids were excited to show off their new shoes!  I'm so thankful for help with these kinds of things, it may not seem like much but it is!  Its so nice for them to feel good about their name brand sneakers, walmart sneakers would do but sometimes its just so nice to have the better quality items.  I'm thankful for those that care for us and help my kiddos have just a little confidence boost.  Then my sis picked up Cayden and Keegan and took them to the community pep rally (Chris was already there with XC).  We are all exhausted and it almost hurts to think, like seriously MY brain feels fractured!  But the day worked out and everyone got where they needed to be and we are blessed!

Kayson Strong as an Eagle ~ more dallas appts part 2

Thursday 8-2-18

We had a rough night with the babies, Kalani was a bit fussy on and off, don't know why, Kayson wasn't sleeping as well as usual and at one point was almost hanging of the edge of the bed.  Glenn ended up in bed with him.  We all ended up oversleeping a bit and had to rush a bit to get out of the hotel and get breakfast but we made it.  We had a good breakfast, baby girl ate her eggs with a fork as long as I put each bite on for her.  :) Baby boy's first appt was with psychiatry.  They say he is presenting as ADHD and want to start him on meds, a low dose, non stimulant, they won't consider stimulant meds without talking to his neurologist, I don't know that I would want those anyways.  Apparently they try the meds and observe him and get others observations (like teachers) before actually making an official diagnoses.  I didn't realize it took so much to actually get a diagnoses, I mean I think its good so there isn't a wrong diagnoses but I just thought we would actually have answers before meds.  Y'all I'm so resistant to meds anyways, I had promised myself when I became a parent I wouldn't let an ADHD diagnoses happen and I would fight tooth and nail against any ADHD meds and here I am, just letting it all happen.  Our life has just been turned so completely upside down, I'm so thankful for baby boy's life, so thankful!  Sometimes I feel almost like he isn't really mine anymore, like I have no say and no control, there it is, y'all, I like my control!  lol, but it's hard, so hard to have it all just ripped from your hands, when your standing in a hospital room, signing consent after consent after consent, looking at your child just laying there, not knowing if he'll even live, and your silently begging the docs just keep him alive, just keep him alive, I'll sign anything, I would give you my house, my car, my blood and organs, just keep him alive and your  praying oh Lord don't take him from us, please let him come back to us, no control.  So, now he's been on crazy meds, meds I never heard of, meds to wean of the meds that weaned him off the other meds, whats a little ADHD med now anyway? right?  Its a crazy place to be, for sure.  But he's alive! He's here!  He's still loving and silly and happy and walking and talking and going to start "real school" as my babies call it.  lol.  Ok, so back to the appt.  They were super nice, they even put us in a family room so baby girl wasn't running all over the place while we waited and talked to docs and filled out papers.  After this appt though, I felt like my brain was fried and couldn't hold anymore info but we still have another appt after lunch and we know it'll be a lot of info too.  Oh my!  Between appts we met a lady from Ragan's Hope to pick up some school supply kits they had for the babies.  That was so nice and so helpful and the babies were so excited, even the teens, I love how excited my babies get over things like school supplies.  :)  Then we had lunch at Paradise Bakery, neat place.  Baby girl is starting to refuse her bottle during the day and she opened her sandwich by herself.  Lunch came with cookies too.  Then onto appt at neuropsychologist to hear the results of his testing.  So much info!  just wow!  Some info about how the brain works and why we are seeing some of the behaviors and that he's fatigued easier bc his brain has to rewire and relearn, stuff that actually would've been helpful to know when leaving the hospital.  He is testing as a "specific learning disability" (dyslexia?) but doc is holding off on a diagnoses till he sees how Kayson does on the new meds and with specific learning helps at school.  He says Kayson will need and IEP, I don't know if I can do this.  He gave us a full report for Kayson's docs, for the school and for us.  Again with the waiting for specific answers, I am glad they want to be thorough and get it right, I'm not complaining, really, I just didn't realize we wouldn't have concrete answers before school.  sigh.  I just want baby boy to be able to learn the basic skills he needs.  And then theres baby girl, baby girl who got out the blue bags for dirty diapers (we also use them for dirty clothes) and opened them and spread them ALL over the floor and laid down on top of them and started waving her arms and legs and the doc chuckled and said, "she's swimming!" *face palm emoji* #whoschildisthis???  #leastshewasntscreaming!!!  Now that we are emotionally exhausted and have way to much info in our brains that we have to process, we can head home but not crash bc the evening is full too!  Got back to longview and dropped Glenn and Kalani off at the Mission Longview dinner for Cayden.  Then ran Kayson by Brookshires to pick up a Bobcat shirt, then to the stadium where they were taking a class of 2030 group photo!  Saw a friendly face and was so glad bc I felt so alone and out of place!  Then took baby boy to dinner at subway and then went to pick up Glenn and two babies and then finally HOME!  Everyone was so excited about the supplies and wanted to see them right away but first Chris had got home from cross country camp today while we were gone and informs his mother that the way he hurt his foot (we had been called about him hurting his foot but it was downplayed for my sanity) was falling, yes F.A.L.L.I.N.G!!!!!! ofF a 10 ft cliff!!!!!!!!   Did you catch that?!?!?  TEN FOOT CLIFF!!!!!!  CHRISTIAN DAVID DERR!!!!  WHAT?!?!?!?  Yes, I was yelling!  WHAT WERE YOU THINKING?  I HAVE TAUGHT YOU BETTER!  YOU KNOW BETTER!  I TRUSTED YOU!  LOL!  *all of this was in good spirits though, like my child is standing in front of me talking to me and I can see is just fine and I'm super thankful that he is alright but seriously a 10 ft cliff!!!!  CHRISTIAN DAVID DERR, WHAT IN THE WORLD WERE YOU THINKING?!?!?  Ok, so the story goes, the boys were jumping off the cliff into the lake and Chris went to jump too, got to the edge and hestitated but couldn't fully stop!  We are super thankful he is alright! and he ran in his time trials just a few days after and still came in eighth!  had to ice his foot after and he still has a knot on his knee and needs a new swimsuit bc the swimsuit tore and died.  CHRISTIAN DAVID, WHAT WERE YOU THINKING?????  Sorry had to get one last yell in there. LOL.  Then we all looked at what supplies they got.  They each got a drawstring bag, which they love and is super great for Cayden bc he can't carry his backpack to class at the Jr. High and only a drawstring bag.  We got out Cayden's list and marked off what he got and then Kirsten wanted to go to Walmart and get the rest so her and I made a late night trip and picked up the rest of what Cayden needed and also got generic supplies (composition books, 5 subject spirals, hand sanitizers, kleenexes, sticky notepads, etc.)  that are always needed by the teens but so hard to find by the time they get their lists after school starts.  I did that last year too and it helped sooo much!  Kirsten and I enjoyed our time and then we got home and I crashed!  lol  Wow, that was a long one, did you make it all the way to the end?  :)

Kayson Strong as an Eagle ~ more Dallas appts part 1

Wed 8-1-18
The morning started early taking Cayden to Mission Longview.  This is third year and he really enjoys it and I love that he's learning to care and help others.  Then onto Kayson's therapies.  When we got back out to Silver, there was a truck parked in the parking spot behind me but he was a long truck and not all the way in his spot and Silver is long and I had so much trouble getting out of there, I didn't know what I was going to do!  I actually almost started crying.  Somehow though I did manage to maneuver my way out, I was so thankful and then we headed home.  These are the times I really dislike driving something so big, I never expected to drive a large vehicle but I manage.  After lunch we headed out.  Lunch was good, Glenn and I had our leftover ]\ (that was Kalani) pizza from date night, we tried the new pizza place, it was great.  We dropped Kirsten and Keegan at Marmie's, Kayson (of course) and Kalani were going in with us.  Chris was away at cross country camp.  Marmie had just got back from a cruise and gave each child a keychain from Mexico.  (Ummmmm.........You know, I think I still have Chris's and he doesn't even know about it, #greatestmommoment)  She also gave Kalani an old remote and Kalani was trying to turn her TV on with it, lol.  We said our goodbyes and got on our way to Dallas.  *I would like to insert a shoutout here to my mama who picked Cayden up from Mission Longview that afternoon, kept the three kiddos for the night, got up early, dropped Cayden back at Mission Longview thurs am, took Kirsten and Keegan to the church so Kirsten could help with a make and take they were having were Kirsten helped the kids make clay bowls and Keegan made a bowl and pound cake.  Our church does such neat things.  Then she picked them up, got them some lunch and picked up Chris at the High school and took them all home and then had to hurry to her own appt!  I don't know what we would've done without her and how we would've gotten all the babies where they needed to be.  I am so thankful for all the help we get.  I can't always tell people what we need but I know any financial help and help with the kids and cleaning and food, that all helps so tremendously, as does prayers and love and support.  We are so grateful for everyone who has stood by us and continues too!  Its a long road and I'm still struggling at times (possibly more than I would care to admit).*  On the way in, Glenn and I were snacking some, he had pistachios and I had sunflower seeds so Kayson said, "I want some flower seeds." so I gave him some.  A bit later he says, "I found a flower seed with nothing in it!"  I love how he calls them flower seeds!  :) As we were getting into Dallas I happened to see this building that apparently Ive never noticed before, it had robots painted on it.  Colorful and fun.  We got to our hotel and checked and then went on an Arby's hunt bc thats what sounded good.  Baby girl was NOT happy to be put back in her carseat!  Food hunts in Dallas prove quite interesting when we don't know where maps is taking us.  First Arbys we found was closed for the day bc it was in an office building? lunch spot and all was already closed.  Oh, well, it was a cool building.  It's kinda like we get impromptu sightseeing while driving around looking for where we think we want to go.  LOL  We saw a really cool fountain at an equally cool building.  It was a downtown church.  Have I mentioned that I HATE Dallas traffic?!  But we finally found an open Arbys and had a good dinner.  :)  Then back to the hotel for a swim.  Kayson was determined we were going to swim!  lol.  He is a fish!  Kayson said, "Ive got the sun spray"  We ended up not needing it bc the pool was already shaded.  Actually there was a breeze and they had just finished putting more water in so the pool was cold and the breeze was cold once you were wet.  We still had fun and got some cool pics but we really didn't stay out long.  Kalani was shivering after a bit and we could tell Kayson was cold although he was refusing to admit it bc he did not want to go in yet.  Gave the babies a bath, there was purple water from a crayola bath bomb, Kayson loves his bath bombs!  :)  He also asked for his goggles for hair washing. Kalani threw a fit when it was time to get out.  She loves water too!  Then Kayson and I played a game of Mancala while Glenn took a shower and I was waiting to bathe.  I won.  Then it was bedtime, morning was going to come early and we had two appts to get to before heading home.  One more pretty cool thing, When I was dropping Chris off at the bus for cross country camp, I overheard another mom talk about the bobcat pride page, so I looked it up and joined it, well it happened that I was looking at a post and someone said something about a class of 2019 group.  Thats Kirstens graduating class!  So she added me to it and I added Kirsten to it and then I got the idea to look up the others.  I am now in a group for each child's graduating class except the baby's, no ones made one for her yet.  LOL.  I think if I calculated right she'll be class of 2035, I think.  So I have a group for class of 2019, 2020, 2025, 2027 and 2030!!!  I think we are going to be busy!  On that note, I think I'll end this blog post for tonight and try to get everyone in bed bc we have church in the am.  Next post, appt day!

Kayson Strong as an Eagle ~ neuropsych testing

Wed-Thurs 7/18-19/18
And the day begins with little sleep again, what is Dallas doing to me?  Keegan has been asking to come with us so we brought him this trip, he was so happy!  On the way in, I was typing a blog and the Mac was close to dying but I managed to finish my blog and publish is right before I ran out of battery.  I was so glad.  Then baby boy needed to pee but we asked if he could wait bc we had already passed Bucees (our usual stop) and we were almost to the hotel and didn't see anywhere to stop and he says, "yes, I can wait for 100 hrs bc we will drive for 20 hrs." *face palm emoji* Then dinner at the hotel and Glenn took the boys swimming and a friend came and took me to Starbucks!  She also gave me a pretty notebook that says love your life and I can keep it in my purse to take my blog and doc notes instead of the small yellow legal pads I've been using.  :)  Next morning we were up early and ate breakfast at the hotel, I really like their breakfast!  Then we took Kayson to his testing.  It was a long morning of waiting in the waiting room and filling in paperwork, pages and pages.  Next appt in a few weeks for his report.  Then headed home.  Lunch at DQ.  Made our Bucees stop this time.  Kayson picked up a pop gun that he had trouble making pop just a bit back and he gained enough strength already that he could do it now!  That was exciting.  We also found the rock bin, we collect these kinds of rocks on our vacations and enjoy just looking through them sometimes so while we were waiting on daddy to finish we kinda played in them, carefully bc we weren't buying, burying our hands, just feeling all the cool rocks, finding ones we liked.  Its good sensory input!  lol Home!  Rest!

Raw

written 6-10-18 thru 8-1-18

Oh how I hurt.
the things people have said
they bounce around in my head
what if they are right?
that I'm hateful,
     that I'm nothing,
     that I shouldn't have my family.........
          and more...........
that I'm the toxic one,
     the one they can't be around,
     the one that never tries,
           and more..........
Who will love me?
Who will help me believe in love again?
     that I can be loved,
     that I'm not so horrible that I deserve to be hated?
What if those closest to me actually believe all that's been said?
Is there healing?
     Is it possible?
Where is kindness?
I've tried so hard to run towards hope,
     towards light
     and love
     and peace
broken remains
unfixable?
     perhaps
can it really be ok again?
I want the mean words to go away
I just want to feel ok again.
I want to believe
     to be loved
           really and truly, deeply loved

One-day vacay(ish)

We always cherish the times we can get away from everything and just enjoy being a family.  This year was supposed to be a Destin year.  I'm so missing the beach!  The sand and the waves and the sounds and the fun and the love.  It makes me super sad that we aren't getting a family vacay this summer, the summer before baby girl first's senior year!  I'm so thankful for baby boys life and I know God knew all and has us in His hands and it will all work out somehow but it still hurts.  It's been a hard summer and in just a few weeks we will be enrolling all my sunshines except baby baby girl in school.  Currently we are running into Dallas about once every two weeks or so.  v   bklkn,lohhy6hhm m (walked away to check on dinner and baby baby girl hijacked my blog, again!  LOL)  So this one day Marmie invited us to her apartment to swim!  She had sandwich stuff for lunch too.  So we got up and left early that day, one of Glenn's off days too!  First we went by the clinic bc Glenn had a check up (please keep him in your prayers too, his sugars, BP and cholesterol were high), afterwards we ran by Sams where there was a big blowup ring toss on sale.  $6 and we got 5 rings of varying sizes from the smallest which was about Kalani size to the biggest which was probably just a bit bigger than a tire float and a center (which we haven't used) so we would have floats to play with.  Then after that we were all hungry bc Glenn was fasting before the doc so we ran to McDonalds for some breakfast.  Of course this thrilled the babies!  :)  We try to visit my Papa in his nursing home on sundays but Kirsten wasn't feeling well at lunch that day and so we went straight home instead, so we ran by there to say hello before heading to my mom's.  He just enjoys seeing Kalani so much and she was so happy and running all over and gave him kisses.  Meme said he was still talking about it that afternoon!  And then we made it to mom's!  We got into her apartment and all started getting dressed for the pool, I put my plastic waterproof cover thing that Kirsten had given me for my bday and I hadn't had a chance to try yet on my phone in hopes of getting cool pics which I did!  :)  You should've seen the teens and me blowing up the floats, oh I forgot to mention that they look like donuts!  LOL  Then off to the pool!  We all love to swim or rather play in the water.  I got some really cool pics.  Kirsten hadn't been swimming since Kayson wasn't able to yet so she was excited to get in the water, she played with Kayson, gave him a ride under water on her back and held Kalani and talked with Marmie.  Chris swam and floated and joked around some with Cayden and carried Kalani and took selfies with his mama.  Cayden was all over the pool and even fell through one of the bigger floats trying to get in it, all I saw was feet, LOL!  Keegan learned how to doggy paddle, he was so excited and did real well.  Kayson didn't let his neck brace slow him down!  This was his first swim since his stroke.  He actually swam from one person to another, he floated with the donuts, he is our little fish.  It was so great to see him so active and happy.  To see them all happy and enjoying each other and not fighting.  Just having fun, just being a family, laughing together.  These are the reasons we cherish our vacay/holiday times so much.  Just to strengthen our relationships, just to love and cherish one another.  To make memories!  Kalani loved the water too!  In the deeper end, like 4 ft, there was a ledge or seat along the edge and she loved running (slow run, its water!) along it.  I don't know if she was so sure about going under, she didn't cry though.  Oh but she was attached to her daddy!  Towards the end he was ready to get out and relax a bit and she didn't want to sit out of the water with him but she didn't want to be in the water with me either, she fussed bc she wanted her daddy in the water with her!  lol.  She floated a bit with the smallest float, actually holding onto it for a little.  Then she started trying to crawl out of it and that was the end of that!  LOL  Then we had lunch at Marmie's and watched some netflix and got some naps.  Then it was dinner time and we hadn't yet been to the new Chick-Fil-A bc we just couldn't seem to get us all together at the same time to go and we wanted to go the first time as a family so thats where we had dinner.  Its really nice and all brand new.  We took selfies and ate and laughed some more, Keegan took Kalani to the play area, it was so nice.  Then we headed home and finished the night off with a family movie!  Oh how I love these precious babies sooooo much!  I am so thankful for this brief time to slow down and just be as a family, even if it was just one day.  We all needed this day, together!

Kayson Strong as an Eagle ~ follow ups

Thursday
6-28-18
I didn't sleep well last night and was up early to take Chris to practice.  Glenn was sleeping as much as he could since he worked till 3 am!  We had apple sandwiches for breakfast.  Those are so great, just apple slices and PB.  YUM!  Then we headed into Dallas with baby boy.  This is a day trip this time, no overnight.  We left with time to get there but then GPS took us a different way bc of construction and we were a bit late but still got there and was able to see the doc.  She was happy with his physical progress.  We are all so very thankful for how far he has come!  She did tell us that the behaviors we are concerned about and have started seeing are consistent with traumatic brain injuries.  He may need some counseling.  She wants to see him again in a few months.  Then we went next door to Jimmy Johns for lunch.  I love their sandwiches so much.  :)  Baby boy always has one with cheese, thats all, just cheese.  lol  Then, we headed home.  I'm so tired!  When we got home, Kirsten had cleaned Kayson's room for him and organized some of his things on a shelf I had just got cleared for him, he was so excited!

Monday
7-2-18
Dallas again, I didn't sleep well again, this seems to be a recurring issue.  :( This time it'll be an overnight trip.  We made a Starbucks stop.  yum!  This time we made good time and made it to the hosp a bit early so we grabbed some lunch.  Then we saw his surgery doc.  His appt went good, his incisions look good.  Kayson did almost cry once when the doc said he couldn't have a bath till friday, he was hoping he could have a bath tonight with one of his bath bombs and his doc caught his tears and asked why, then asked if he didn't like showers so we told him that Kayson usually has baths and isn't fond of showers so he said Kayson could sit in a bath as long as he didn't soak his neck yet and baby boy was excited about that!  He wants to see Kayson again in 6 weeks.  Then we checked in at our hotel.  We tried a new hamburger place for dinner and then found a rolled ice cream place.  That was neat!  Kayson got his bath with his bath bomb.  This one was a bday one and left sprinkles in the tub, lol and his prize was a little plastic donut.  Then we rested before bedtime.

Tuesday
7-3-18
Up early to get breakfast and check out of hotel and get to his neurology appt on time.  He called Kayson miraculous!  However he does want him evaluated by a psychiatrist.  We told him some more about all our family has been through in Kayson's young life before the stroke and he seemed a little in shock.  He did say we had a strong marriage.  He wants to see Kayson again in Jan.  So far not a month has gone by that we have haven't been to dallas.  Its seems to be averaging about twice a month.  whew.  Its a lot.  Then we headed home.  We actually got home in time for lunch and it was already made, pizza, yum!  Marmie had spent the night with the other kids and brought the pizza.  Yay, Marmie!  :)  Then we had a nap with baby girl.  After Glenn and I had our date night.  Dinner and a movie.

Kayson Strong as an Eagle ~ surgery day 9 ~ HOME!!!

Tuesday
6-12-18

It's going home day!!!  Boy, cleaning the room, bc since they run on volunteers, RMH asks the families to clean their room before they leave, makes me feel like I need a nap!  lol  Before we left Dallas, we ran by the big Kroger close to RMH, they remind me a bit of Brookshires Fresh in Tyler.  They have fresh bread and pretzels, an olive bar, sushi bar, salad bar and even a Starbucks!  :)  Baby boy found Incredibles 2 goldfish, he is so excited to see the new movie when it comes out soon!  Then we came HOME!!!  YAY!!!  Rain!  Where did that come from?  lol  Oh and a big yay, Kayson hasn't had any pain meds since before we left the hospital yesterday!  PTL!  Meme came by to see baby boy.  Then Aunt Sherrie came by and brought baby boy some chocolate milk, he sure loves his chocolate milk!  And this part of the journey starts to come to a close.  Baby boy's surgery is done and a success and we are home and healing can continue and for all this we are so thankful!  There's still more parts of the journey to come but surgery felt like such a huge hurdle and the relief that it is over is immense.

Kayson Strong as an Eagle ~ surgery day 8 ~ angiogram

So, it was a bit of a rough night, not sure why, baby boy wasn't sleeping well but said he wasn't in pain but kept fussing so his daddy ended up getting in bed with him.  He rested better after that.  I wonder if he was nervous about his collar being off??? We arrived at the hospital, got all checked in, saw his nurse from he other angiogram, she recognized him and asked about baby girl.  :)  The anesthesiologist came in and spoke with us and said they were going to try different anesthesia, give extra fluids and nausea meds to try to keep us out of the ER this time!  I am so thankful that they listen to our concerns and work so hard to keep baby boy comfortable!  Then they took him back.  We went and got some lunch and when we returned to the waiting area, the doc came out and said he did great and there was NO pinching!!!!  BIG NEWS!!!!  Surgery was good and worked and oh, PTL, just praise!  Bc of the diff anesthesia, he woke sooner so they had us come back but he still had a few hours to lay still yet.  That was long, lol.  He rested for a bit, then complained of a headache, then he had to pee, he asked "how much was it?" after he peed in the urinal, lol!  Also asked, "Will I have to be still forever?!?"  Oh, this boy!  :)  Then he was bored, I tried to distract him by playing Disney music on his iPad.  He complained more about a headache, they ordered him some motrin but he's not supposed to have that right now bc it can hinder the healing/fusion of the bone so then they ordered him some oxy.  Then he asked, "What's squeezing me?" lol, it was the blood pressure cuff, you would think he would know this by now, lol!  He was feeling better and able to eat a popsicle and then he was able to be discharged.  We got to RMH and he was walking so much steadier and looking so much better than he did after the other angiogram!  He was hungry so we got a light snack then rested before dinner.  After dinner we did another movie in the family area.  Smurfs this time.  Then Glenn and baby boy rested in the room and prepared for bed while I went to the house family meeting.  They do one every monday and say its mandatory that at least one member from each family attend.  I almost hate attending them though bc the night manager speaks to us like we are all little children incapable of following the rules.  oh-well.  sigh.  When I returned to our room, baby boy wanted me to lay with him while he fell asleep and I ended up falling asleep too.  I'm so thankful he didn't throw up at all this time!  No ER visit, PTL!!!  No extra night in the hospital, we can head home tomorrow! Just so thankful!!!!

Kayson Strong as an Eagle ~ surgery day 7 ~ RMH day 2

Sunday 6-10-18
Baby boy slept all night.  YAY!  After breakfast, before it was tooooooo terribly hot and since we had to be careful about him sweating, we cut through the courtyard on our way back to our room and Kayson and his daddy played a game of connect four, a big wooden one in the courtyard.  Then Kayson got his first shower since surgery.  It was so nice to have to his extra collar pads.  After lunch there was an ice cream social with Bingo and prizes!  Kayson got lots of prizes, these squishy things and when I said, "oh, those look homemade" He said, "well, I love them, don't judge my squishies!"  LOL, grab a bubbles, those are so cool, you can catch them without popping them and they stick to everything for a bit, the floor, the wall, your head!  :)  He also got some spinners, an emoji one and some mini ones, they spin really well too.  He even got a bluetooth speaker!  and it lights.  Then he got to choose a quilt from RMH.  Its so pretty and I just love quilts and it has blue and orange, his two fav colors!  Its so kind that people make these with such love!  Then we had some rest time.  I tried to nap but my mind was spinning and my heart felt so broken from everything.  Thankful, blessed but overwhelmed and scared and wondering and broken.  Panic attacks were out in full force today.  I really hate those!  They make me feel certifiable and less of a person and like I can't handle life.  Some days, I just feel like all this is closing in around me and I'm drowning.  We've been through so much as a family, even before this with baby boy.  When is it enough?  When do we get a break and a rest from the pain?  After dinner, we did another movie in the family living room, Spooky Buddies, during which the babies at home facetimed us and Kayson wanted to show them his lego set all done so him and I walked back to the room and finished the phone call and Glenn finished the movie all by himself, lol.  Then off course baby boy was hungry!  :)  So we got a snack in the family kitchen, circus cookies!  I still love those so much!  They are so good and so fun!  lol.  Then back to the room for bed, big day tomorrow.  Baby boy decided to sleep with his collar off, which his daddy likes but still makes me nervous.

Kayson Strong as an Eagle ~ surgery day 6 ~ RMH day 1

Poor baby, I slept through med alarms!  Sigh, what kind of a mother does that?!?  Baby boy woke up in pain, I almost cried, I was so upset at myself and a little scared bc there wasn't a nurse to assure me he would be fine.  Got meds in him and sat with him as the pain eased and he was able to fall back to sleep for a few more hours.  I however did not rest well after that!  Then we all woke up in time for breakfast, PTL, Kayson was not in pain then and I had med alarms set!  We spent the morning just chillin' in the room and Kayson finished his lego set!  He was so excited.  Then lunch, it is a super blessing that RMH has volunteers provide meals!  Then some Wii, Mario and lego Batman in the playroom.  Kayson was sad though bc the playroom had a train table with wooden tracks but no trains!  Another weird thing in the playroom, theres all these plastic pineapples, like 6, and they are almost life size, like seriously who puts lifesize plastic pineapples in a playroom?!?  LOL!!!  On a different note, a part that's not so easy to type or put into words, especially for a Mama's heart but is part of his story and definitely could benefit from prayers!  Sometimes, since a little after getting home from Dallas, the first long stay, baby boy has started to say some things that breaks my heart and have some concerning behaviors.  This time, he got mad at a game, and started having an attitude so we returned the wii games and controllers to the front desk and went back to the room for a rest and as we were getting into the room, he declared he was going to take his lego set all apart and he wished he had never got it.  I thought I was going to end up giving it away if he was going to continue with those words but he took it back when I said as much.  Then though he was still upset bc he didn't want to rest but he looked tired and we were tired so we told him he was going to lay down and rest, he could watch something on his iPad but he needed to rest and he told me I should just throw him in the trash.  How is a parent supposed to react to that, I didn't even know what to say, it took my breath away a bit.  I'm sure he doesn't mean he really should be in the trash, I know he was acting out and tired and frustrated and mad but............it's still pretty scary.  He's only 7!  We talked about it and how it would hurt so much and he's not trash and he said no he wasn't trash and then he laid down with his iPad and rested.  He comes up to me regularly and tells me he's happy and asks for hugs and he's usually just so sweet.  Then there was dinner.  Again so thankful not to have figure out meals, such a blessing.  And we still have a tired boy.  We decided to do a movie in the family living area, baby boy picked Super Buddies.  He fell asleep before the end, I knew he was tired!  lol.  His daddy carried him to our room when it was over, he was nervous, he hadn't carried baby boy since the surgery.  Then we all crashed!!!  With prayers that there would be no more sleeping through the med alarms!

Kayson Strong as an Eagle ~ surgery day 5 ~ sibling visit!

Friday 6-8-18
Marmie said Kayson had a rough night.  :( But we were looking forward to Papaw bringing all the siblings to visit.  We were so excited to see them!  Glenn had to go down and get Papaw and baby girl though bc the front desk said she couldn't come up.  The hospital is redoing their ICU and moved it down to the floor we were on so Glenn just had to let them know we weren't in ICU and she could visit.  Today was going to be a big day too bc they wanted Kayson up and that meant wearing his collar again and childlike came by too to take us to the playroom.  They brought in two new sets of pads for his collar so they would be clean for his incision and we had only had one before so they weren't getting totally cleaned properly, just wiped off bc he had to wear the collar 24-7!  I was so glad to be able to get rid of that first set of pads and have two brand new sets so now we can change them out and clean them properly, that had really been bothering me.  So we got his collar on, all his IVs out and got him dressed and off to the playroom!  Chris and Papaw played pool, I played Chris once too.  The other boys played the Xbox, they have multiple screens for their Xboxes!  Kayson also played with legos.  Kalani ran all over the place and played kitchen and riding toys and little people farm and climbed in the soft play area and played basketball and watched the bubbles in the middle display.  lol.  Kayson was walking around and playing and not complaining of pain and just looking so much better, he just needed his siblings!  Then the playroom was closing for lunch so we went down to the hospital studio where they were playing bingo.  We got to go in to play and meet Boots the dog.  All the boys won a prize.  While we were doing that, Glenn ordered pizza and it was delivered to the hospital and we took it back up to Kayson's room for lunch.  After Kayson had his meds and more X-rays.  Then the boys worked some on his new after surgery lego set, Kayson also blew bubbles for Kalani.  I was getting so tired and had a slight headache, I felt guilty bc having all the kids there was so great but also so tiring, I was almost ready for them to head home.  #horriblemothermoment!  Then Glenn and daddy took them all to the playroom on our floor, its smaller than the big one but still cool.  Kalani got fussy so Kirsten brought her back to the room and put her to sleep.  While we were sitting in the room, his neuro surgery doc came in and explained that she wanted us to stay in town till monday bc he had an angiogram scheduled but since all his meds were by mouth now and he was doing so good, she felt he could be discharged to RMH!  We could leave the hospital!  and his siblings could be here to see it and timing was just so cool and amazing!  So we packed up the room, signed all the papers and we were off!  Glenn and Papaw went to get the vehicles and met us at the front door, Kayson was wheeled out, the red wagon was unloaded into Star (the Jeep), everyone said goodbyes and loaded up in the vehicle they were leaving in, Kayson got to keep the hospital pillow and she even gave him the sheet, lol, he was so excited.  Papaw and the siblings headed home and we headed to RMH.  After we got to RMH and was resting before dinner, we got called that Papaw and the kids had been involved in a hit and run!  Thankfully everyone was fine, they barely felt it bc it was a small car and there was minimal damage to Silver, PTL!  Then it was dinner time, got a text that they made it home safe, rested some, took a walk to get a snack, tried to go back through the courtyard and discovered they had locked the doors to get back in, so we could get out but none of the doors would let us in, Kayson got really worried, that made me so sad, I assured him we would be fine, we had our phones, we weren't stuck.  I saw a cleaning lady and knocked on the door and she let us in, no worries but I don't understand why they lock the courtyard doors at all, theres no outside way into the courtyard and if you're going to lock it so people can't come in, shouldn't you lock it so they can't get out?  or at least put signs on the courtyard doors stating they lock from inside at such and such time so people don't get stuck outside???  Then to the room for night and SLEEP!!!

Kayson Strong as an Eagle ~ surgery day 4 ~ recovery

Thursday 6-7-18
Baby boy did finally quit throwing up and ate some breakfast, yay!  However, he is still in pain and his neck is hurting him, I think some of it is he is nervous bc his brace is still off.  I was asking his nurse about his deep cough and how long to expect it to continue and she was saying it should clear once he's up and moving and breathing deeper but she could get him some bubbles to help with it also.  He loves bubbles and was so excited to blow them.  I didn't realize just how deep one had to breath to blow bubbles!  Such a neat idea!  After a few different times of blowing, his cough was already clearing and you could tell it tired him out which was a good thing too bc he needed to rest.  By lunch he was looking better, he had worked on legos a little bit, ate some nachos and sucked a tootsie pop to sleep, lol!  Then the afternoon was quiet, naps were taken, nurses were talked to, after dinner was ate we left Marmie with Kayson for the night and went to get some rest at RMH.

Kayson strong as an Eagle ~ surgery day 3 ~ It's time!

Wednesday 6-6-18
We had to get up so early, get Kayson special soaped again before heading to the hospital.  None of us ate breakfast bc Kayson couldn't so we decided to wait till after he was taken to surgery to eat too. They took us back to the prep area pretty quickly, they are so efficient there, Kayson got into his hospital gown, a chaplain came by and prayed with us, Child Life came by and brought him a Star wars lego set, docs came in, consents were signed, silly juice was given, after which the boy was trying so hard to stay awake and finish his lego set but he was falling asleep sitting up!  lol jjokki;8 (ummmm, beware the baby and computer when you go to get your dinner!  lol, Kalani apparently wanted to add her two cents!)  Then they took him back and Squirt (his rescued stuffed turtle) even got to stay with him.  Then the wait for us began.  We went down and got some breakfast.  Our children's pastor came and sat with us for while.  We got checkup calls about every hour or so saying Kayson was doing good and everything was going well.  Mom and I took a walk to the gift shop and outside to the waterfall.  So pretty.  Then lunch.  I was thinking about before they took him to surgery and they were asking him if he knew what was going to happen and he said very matter of factly, "they are going to fix my neck!"  He was kinda excited it seemed to get his neck fixed.  When people ask him what happened to his neck he tells them, "I had a stroke."  You should see their looks and then then they look at me like really?!?  I say yes and usually explain a bit more if they are interested.  About 3p, we met with the doc, Kayson was out of surgery and doing so well no ICU was needed!  The surgery went well.  The doc looked sooooo tired!  There was also a high school girl in scrubs following them around for the day, I think she even got to watch the surgery!  That's so cool for her!  It wasn't long before we were called back to recovery to see Kayson.  Usually only two get to go back but they let Marmie come back with us too.  That was neat.  The recovery nurse said Kayson woke up and asked her, "Where's my voice?" While we were in there he says, "something's squeezing me!" lol, it was the blood pressure cuff on his leg.  He also wasn't wearing his collar, they said he didn't need to for the night.  It was kinda strange to see him without it.  I felt like I hadn't seen his neck in months!  He also mentioned his big lego set he got to pick at Legoland before we left recovery.  He was telling everyone about it!  Then on to his room on the neuro surg floor.  He already tried to sit up, his nurse said he met his first goal within 5 min of being on the floor!  :)  He slept some more and then he said he felt weird, then his stomach started bothering him.  :(  He wanted to watch TV he said but you could just tell he was still not fully awake and not feeling the best and he had trouble focusing on the TV and his stomach was still upset.  Then he started throwing up so they had to give him nausea meds and keep his IV fluids going.  He wanted to play legos but when we got them out, he really was just too tired and not feeling well.  He would try to sleep some between throwing up.  He had a special visitor come and bring him a blue dragon, he really liked that.  At one point he said, "Mama, the effect on my voice is gone!" lol.  His daddy stayed the night with him while Marmie and I went back to RMH.  It was a rough night his daddy said.  :(

Kayson Strong as an Eagle ~ Surgery Day 2 ~ Pre-op

Up early, hotel breakfast, Kayson wanted two pancakes, he said, but I was trying to talk him into one bc I knew he wouldn't eat two but the lady heard and gave him two anyways, lol.  Pre-op went well, they took labs, he sat in my lap and didn't even cry!  Then we took the shuttle over to the hosp for his CT scan.  The CT had Mario stickers, so cool and Kayson liked that they gave me a batman cover to wear.  While he was finishing in CT, my phone rang, it was RMH saying we got a room.  PTL!  So we checked out of our hotel but couldn't check into RMH till two so we headed to Grapevine Mills.  Kayson wanted go to Legoland as his before surgery fun activity.  We had lunch at the food court, everyone ate something different, lol.  Then a carousel ride.  After, onto Legoland, except when we bought our tickets they told us that they stagger the entry times now and we couldn't get in till 2:45, it was only like 1:30, what do we do now?  So we went over to the Sealife Aquarium first.  It was neat, they had an area where you could "rescue" a plastic sea turtle, treat its boo boos, feed it and return it to the ocean.  Kayson was so excited about that but got sad when he realized he couldn't keep his turtle that he had named squirt.  When we got to the gift shop Glenn found a stuffed turtle that looked like Squirt and Kayson was so excited to get to take him home!  :)  Then onto Legoland.  Kayson loved all the legos and driving a police car around the track and watching a 4D movie (these seats stay still, so he could enjoy this one) and the gift shop where he got to pick out a lego set to build after his surgery.  Then Marmie (Hollie's mom) met us at RMH to check in and get our room.  Marmie took us to eat at Olive Garden.  Mmmm......so good!  When we arrived back at RMH, therapy dogs were visiting.  We enjoyed seeing them.  It was almost bedtime and Kayson needed a bath before surgery with special soap.  Then everyone got in bed, tomorrow was going too be an early early day!

Kayson Strong as an Eagle ~ surgery day 1 ~ into Dallas

Monday 6-4-18

Since we didn't have to be in Dallas by a specific time, we decided to leave sometime after lunch so Kayson was able to attend a local VBS for one day.  He really loves VBS!  It was super hard to drop him off though!  I know people there and I knew he would do great, he's been to this one the last 2 years or so but still it was hard.  He had a great time!  :)  Kirsten rode in with me to take the boys and Chris was weeding at Meme's when we left and Glenn was running get ready for Dallas errands so we had Kalani too.  So I decided to take my girls to IHOP for breakfast.  Yum!  :)  When we got home, Chris was home from his weeding and we had just enough time to watch one Criminal Minds before heading in for the younger boys.  Then Chris decided to ride in with us and Glenn was still in town so we picked them up and met him for lunch at Five Guys, we all love that place!  I took the younger four home after that and Glenn ran to walmart with the teens to get them some last minute necessities for their summer youth trip.  We decided we better pack now and get headed to our hotel in Dallas, RMH was full.  We left about 4.  RAIN????  Where did that come from?  A Buccees stop, of course!  lol  Then a stop at Best Buy bc baby boy needed new headphones.  He accidentally pulled the ear part off his others and was using Keegan's but the ear pads had come off of those and I didn't really like just plastic covering his ears.  His daddy ran in and found him some Incredibles 2 ones and he was so excited to get them!  We made it to the hotel, ordered pizza, watched Kubo, well they did, I took a bath, lol.  BEDTIME!  Early pre op appts in the am!  :-o

Migraine

by Kirsten Derr

Pounding
Pounding
Always pounding
Like a miner in a mine

Brighter
Brighter
Always brighter
The light seems to shine

Louder
Louder
Always louder
The voices are than mine

The heat
Heat
Heat
Always makes it worse
I could scream till I go hoarse

Will it ever go away
This aching every day
Lying in wait
To strike
On a random date.

I am me

by Kirsten Derr

I am me
I'm not society's beautiful
I'm not the worlds definition of
blessed
I am me
And that is enough
I have all the family I need
I have those few loyal friends
I am me
And that is enough

Faith

How do you hold onto/keep your faith when you feel like God is nowhere to be found, when you feel like your prayers are empty and no one hears them?  I know this is a hard place to admit when we are in after all aren't christians supposed to be perfect, aren't we supposed to have all the answers?! Aren't we supposed to be strong because Christ is strong?!  But if we are honest with ourselves and others and God, we have all been here before!  You know what?  GOD KNOWS!!!!  It is not a surprise to Him!  He doesn't want perfect, He wants us!  How can His strength shine through if we aren't willing to allow our weakness to be seen, ever?  Why do we act like God can't handle our weakness and our questions and our doubts at times?  NO, If I truly believe that God can handle life and death, if I believe that He raised my son (and I do bc the docs do not have an explanation for how he survived the stroke!), if I truly believe that God knows all and is supreme and is all powerful then I have to believe that He can handle my insecurities and doubts, that they do NOT scare Him!  That He is prepared for the questions and weakness and doubts.  So how do we hold to our faith in scary moments?  in questioning?  Yes, prayer......yes, read your Bible......yes, seek wise counsel, do not discount the importance of a true church family that will love you and come alongside side you in life.  These are all very important but I would also like to mention something else that some may see as too simple but I would venture to say, in my life has sometimes had the biggest impact of all.  That has helped the previously mentioned things really come to life.  First I would like to mention two passages of scripture.  "Seek and ye shall find" Matt. 7:7 and God in a "still small voice" from 1 Kings 19:11-12.  So, here it is, look for God!  Look for His hand in your life.  How might He be holding you, how might He be trying to get your attention?  And do not discount the small!  The green trees and pretty flowers and blue skies speak of His glory and majesty, look up!  He knows life is hard and healing takes time but you can find Him.  Kalani, our little ball of sunshine and energy and what would we ever do without her, we didn't know we needed her, but God did.  Our kitchen table is not a new example but we needed one years ago and didn't have any extra money and God touched someone's heart and we had a nice table given to us!  Even baby boy's neck brace speaks of God.  Without God he wouldn't be with us and neither would that brace!  I look at my teens and see God!  They are wonderful people and thoughtful and fun and they have a faith that only can be from Him.  With everything our family has been through and seen and dealt with, my babies are happy and loving, that can only be God!  Our property is a gift from God, so beautiful and peaceful and truly a sanctuary for us.  We have a porch, people that have loved us through our struggles and helped us in tangible ways and prayer support and encouraging words.  I have a friend that sends cards a few times a year, I can't tell you how touched I am every time I open my mailbox and see an envelope from her!  All these things that come from God!  He does provide.  Sometimes it's hard to see through the hard but I believe He understands and He's waiting for us to find Him and He reaches out to us in big and small ways.  He wants to strengthen our faith and he wants a relationship with us.  He is there for the good and bad.  He wants us, all of us, the pretty and ugly.  Seek Him and remember He is in the small too!

Prayer

Again this may not be your typical "christian" post.  Just a few ramblings of a stay home mama who loves God and has seen his hand in so much but has also lived through hard.  First, I am not an intercessor.  I pray for those who are and highly respect them and they are very much needed but I am not one, nor do I feel called to be one.  I've struggled with guilt over this for a good part of my life, feeling like something was wrong with me bc I just couldn't focus for hours at a time on prayer all by itself.  Don't get me wrong, I pray!  I pray before bed, I pray at the grocery store, I prayed at Kayson's hospital bedside, I pray as I drive, I pray as I talk to babies, I prayed about this blog, I talk to God about everything, good, bad, about things I don't understand, about how to wife and parent and friend, about truth, what is and isn't, about what He has blessed us with and what I'm thankful for.  Sometimes I don't even really realized I have prayed, almost like breathing but more like just sharing life with a friend but a friend who is always there, a friend I won't wear out my welcome, a friend that won't tire of my issues of which I have plenty, lol.  So, I think my encouragement to you would be to just pray, if your called to be an intercessor, we need you!  I'm sure there are moments in life that only an intercessor's prayers have carried us through!  I've felt them and I thank you!  However if that is not your calling, God still wants to hear from you.  Share the everyday with Him, I even have asked him to guide my grocery shopping and at least once I felt the need to put back something I was going to buy and found out like the next day that the very thing I was planning on feeding my kids when we got home, the whole reason we stopped by the store to get lunch and plans changed as I was picking it off the shelf and we bought and ate something else was recalled!  Thank you, God.  Another thought, there have been times when I felt I couldn't pray or I just didn't know what to pray and I relied on other's prayers.  Don't get me wrong, we cannot live our whole lives this way, God wants us but I believe He understands the depth of some pain, I believe He patiently waits for us to be able to speak with Him again but He still hears the prayers of others on our behalf!  So be encouraged and talk to our Father in Heaven!  :)

Can God use you?

I could answer this question with all kinds of wonderful amazing Biblical examples of simple people who did amazing things as encouragement that you too can do great things, however, I would like to go in a different direction with this post.  I wonder how God sees our everyday ordinary lives.  When He looks down on us from his majestic throne does He think, oh those little humans, running around doing absolutely nothing with their lives, don't they know they should be more?  I think the answer is NO!!!!  He looks on us in love and even laughter at times.  :) I think we all have great things in us but we don't always recognize it.  We let the world beat us down and make us feel small.  So a few reflective questions.  Is it always the BIG and showy that speaks the most to your heart?  How many times a day do think you might make someone else smile, even a small one?  How many others have blessed you just through kindness in a hard moment?  How many times has someone else coaxed a small smile from you through your tears?  Another one, is it always in person?  over text? through a phone call?  over facebook?  Speaking of facebook, do you ever feel like measuring the effective of your post based on how many likes or comments you get?  On that note, do you look at a post that made you laugh or smile and think well that only has five likes, they shouldn't have wasted our time posting that?  NO!  Well, I don't.  I'm just glad it was posted and it brightened my day, even if I'm the only one that liked it.  I struggled with these feelings a bit when I first got on FB, and if maybe I shouldn't post and then I thought, it doesn't matter, if my words, or pic, or whatever makes one person smile, if it touches just one life, even in a very small way, it was worth it!  And not just on FB either.  Any small daily tasks sometimes I would question.  Did it really matter if I took my kids to the park, did I touch anyone?  What about at the grocery store, did I make difference?  Then I thought, maybe I did.  What about when I encouraged that mom of littles that was close to tears bc her child wouldn't listen?  What about when I spoke to the cashier like they were a real person?  What about when I encourage my children to see and thank those that most people ignore, the man cleaning the tables at the restaurant, the lady cleaning our room at the hotel, the person washing the windows at the store?  So, I think my encouragement here would be that God shines through in the everyday, He shines in the small.  You don't have to "go viral" to make a difference.  God can use you where you are at!

Kayson Strong as an Eagle ~ Surgery is planned!

This week saw us in Dallas again.  This time for an appt with the neuro surgery doc that will do Kayson's surgery.  We found pretty heavy rain on the way in and almost saw a wreck!  So thankful that we didn't see the wreck and that we didn't get entangled in the mess it would've caused as we were close to the vehicles!  That was even before the rain!  We made it safely to his appt after a stop at Bucees.  :-D  Everything went well, we got a surgery date, June 6, and were able to ask any questions we had.  Here's the hard.  He's only seven!  7!!!!  Just a baby!  This isn't fair!  They go in through muscle in the back to get to the spine.  He will have two incisions bc they also take some rib.  They put in titanium screws (that will not be a problem for future MRIs).  The surgery takes 4-6 hours!  How do we do this?  Oh, this is my baby!  He will be in the hospital about 5 days and will have to stay home for two weeks after.  They said it is a painful surgery.  Did I say this isn't fair?!?  I'm still trying to fully wrap my head around all this.  I know God has my baby, I know He saved my baby's life!  It's still so hard!  I cried some on the way home and before bed.  Prayers are appreciated. Prayers for the waiting, prayers for the surgery, prayers for his recovery, for the docs hands and wisdom, for as little pain as possible, for us while he is in surgery and we are waiting, for the kids that will still be home, for safe travels to and from Dallas, That God carries us all through this time and continues to shine through.

Kayson Strong as an Eagle ~ Rotational angiogram

We arrived in Dallas Tues night and got settled into RMH.  We got the babies bathed, we had Kalani and Kayson (of course, lol) with us.  About ten o clock Kayson decided he was hungry.  He really hadn't ate much dinner, at which he lost a tooth eating a bread!  :) He wasn't supposed to eat anything after midnight so we decided a snack was in order.  Then we all tried to get some sleep.  Kayson wanted him and Kalani to sleep in one bed but she wasn't cooperating so then he decided that daddy and Kalani needed to be in one bed and he needed to sleep with his mama.  lol.  I suspect he didn't want to be all alone in an unfamiliar big bed.  :)  He got his way, lol.  Then we were up early for a full day at the hosp.  First an appt with hematology.  He had some labs that were flagged but nothing that they were worried about and no followups with them.  This was prob the best news of the day.  sigh.  Then onto radiology for his rotational angiogram.  I was so scared bc they were going to take his collar off and turn his head.  I understand needing to know if he needs surgery and find out if his neck is still pinching his artery but that doesn't make it any less scary.  They took him back, he didn't cry this time and we grabbed some lunch.  Shortly after we got back to the waiting area, the doc came out and said he did great and he was in recovery sleeping, they would keep him sedated for a few hour bc he needed to lay still but she also told us that he was still pinching his artery and would need surgery. Not the news we really wanted to hear.  Also means that if he wasn't in the neck collar to restrict his movement, it would be very likely he would've already had another stroke.  The doctors also keep talking about how massive his stroke was and that makes me think they think it is even more crucial that he does not have another one.  It is all so very overwhelming.  Then more waiting.  Oh my, baby girl was ALL over the place!!  wondering off down the hall, all over the waiting area, wearing us out!  We did find a playground and let her play out there for a bit.  She wasn't going to take a nap for us bc she had taken an early nap while we were waiting with Kayson bc we had been up so early!  Then we finally got to see baby boy!  He was waking up but still very sleepy but smiled at us and was glad to see us.  He got to have a popsicle and they gave him a nerf gun.  Then his neurology doc came to see him.  They got him up to walk, he was still very wobbly from the sedation.  This doc also confirmed the need for surgery.  Then they said we could leave so we headed back to RMH, it was already after 6!  When we pulled in and parked, Kayson threw up the first time.  They had said he might and it was normal if he did once or twice and that he would still be sleepy and needed to rest.  So we got him up to our room and took turns going down to the family kitchen to get dinner.  However he wouldn't stop throwing up, so Glenn called the number they gave us and they told us to bring him to the ER.  We arrived about 9.  He was still throwing up.  We were scared and he felt so bad and baby girl was so tired and so were we, it had already been a long day.  A friend came and stayed in an empty waiting room with baby girl!  We were so grateful!  They took us to a room, the same room we were in the very first night we arrived in Dallas!  They gave him some zofran, said he would need fluids and called his neuro doc who wanted an MRI done.  That came back good.  awhile after the zofran, he had a popsicle and then some crackers but his neuro doc wanted him observed overnight so they admitted him.  I took baby girl back to RMH for some rest but it was after 3 am before we got there.  Glenn stayed with kayson and said they got to a room about 4.  He did well, slept, ate breakfast, neuro doc said he was nervous bc they had turned his head but he could be discharged that afternoon.  We got to leave the hosp around 4 after a trip to the trains and to the gift shop to see if they had PJs bc Kayson was leaving in hosp gown bc he threw up on his clothes and we didn't have any others.  We made it back to RMH and crashed, we slept through dinner, lol and had to eat leftovers.  Then we left for home friday am.  Kayson was so excited to be home and we were so glad he was alright.  Now we wait for surgery date.