Thursday, August 16, 2018

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?  :)

Saturday, August 11, 2018

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!

Wednesday, August 8, 2018

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!

Wednesday, August 1, 2018

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

Friday, July 27, 2018

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!

Monday, July 23, 2018

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.

Thursday, July 19, 2018

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.