Monday, March 26, 2018

lunch blog

As I sit down to a lunch of leftover enchiladas at my own house! I think oh I'll type a blog, its been a few days.  However I can't find my book of blog notes!  Sigh!  Now I don't know what to type!  lol  See, I had a book with topic ideas and then I blogged Kirsten's essay and then I blogged all about Kayson, so now its been so long and we weren't home for forever and I have no idea where to look for it after I looked every place I could think of that I might've put it.  So I guess I will just see where this blog goes and what comes out of my head and it might be a very boring post or an interesting one depending on what my fingers do.  LOL  If I'm honest, I'm a bit scared to type a post without a clear direction, I'm a little concerned I would be too negative.  My house is such a mess, the laundry is behind, I sooooo miss my vehicle, we didn't get our sams trip this year so we are running out of stuff, I feel so overwhelmed a lot of the time and I miss Keegan.  Then theres the worries too.  Will Kayson need surgery?  Is Keegan really adjusting to school ok?  If Kayson is dyslexic, will he end up in school too?  Can we figure out Kirsten's migraines or will she end up needing to see the neuro in Dallas?  but I don't want to wallow in all that, I really don't.  I try to focus on more positives, it's still hard and I totally lose the battle sometimes and just want to sit and cry but I try and I pray and I do know that God is with us and has us in his hands and is so super amazing!  So my mind turns to spring and Easter, I love Easter!  I love thinking on new life and new beginnings and this year that has an even deeper meaning as I look at my Kayson.  The world is green, new green and yellow (but that's neg again so maybe we will skip over that!  LOL) so back to the green and purple and so new.  The sun is peeking through the clouds as I type.  I think of my babies, my precious babies!  I need to make sure that the others know how special they still are to this family too.  They are all miracles, every baby is, specially formed by our Creator, miracles!  Kirsten just amazes me with her thoughtfulness and her kind heart.  Chris amazes me with his academics, I think he's totally smarter than I ever was!  and I love to watch him be a part of a team and excel in his running.  Cayden, my Cayden, may I be able to guide him without crushing him.  He is definitely my freethinker and independent and he thinks he knows it all, that worries me with his peers sometimes, I hope he can tone that down and make friends!  I know God has plans for that one!  I know He has plans for them all, really.  Keegan!  I just love how they all add so much to our family!  We would be lost without any one of them!  Back to Keegan, He really is so very caring and compassionate.  He has a hard time with self control at times but his heart is so sensitive and he loves Kayson so much and has a special bond with Kalani.  Kalani, I don't think I have to worry that she knows she is super special!  LOL  She knows!  She thinks she rules the house!  She just got in my lap and is falling asleep.  I think that means it is nap time!  must locate a pacifier!  So I will say goodbye for now.  Maybe I will find my blog topics soon, in the meantime I will start a new list of ideas, on my phone, lol.  I am open to suggestions.  :-D

Thursday, March 22, 2018

Kayson Strong as an Eagle ~ Adjusting

Sorry I have been MIA for a little.  We are adjusting to all being under one roof again.  The almost two weeks we have been home have been awesome and stressful and full of joy, thankfulness, fear, uncertainty, changes, appointments and so much, well, just, life.  Where to begin?  CHURCH!  It has been so wonderful to worship with our Jesus family once again!  There just aren't words strong enough to describe the love and the joy and the belonging!  Glenn has went back to work.  We are currently trying to juggle all the places we need to be with only one vehicle as our family one is so sick and in a car-hospital with very kind people trying to help it live for us.  This is making baseball season super interesting.  Games have started.  I love so much that Cayden and Keegan get to play this year!  We had some very generous benefactors pay for their registration and everything they needed (including new bats bc the rules changed this year!).  Also other wonderful peoples have provided rides to them when needed to practices.  Speaking of sports, Chris is running track this season, he has to be at the school at 6 in the ams for practice!  Oh my thats early for this mama!  We also enrolled Keegan in school to keep him from getting behind.  With all Kayson's therapies and Dallas trips, I was worried about keeping him home still.  I sure do miss my Keegan though!  Kayson has had his evaluations for his therapies and we are waiting to hear when they will all start.  We will also be in Dallas most of the week of Apr. 3rd.  He has an MRI on apr. 4 and an appt with Hematology.  Then on Apr 6 he has an hour long evaluation with the doc that will do his dyslexia testing.  He is also being referred to an audiologist to test his hearing.  Kirsten is still dealing with her migraines and daily headaches.  If her pediatrician can't help her get them under control, he is going to refer her to Kayson's neurologist in Dallas.  We have so much going on and I feel so tired, sometimes I even feel all alone, I know I'm not really but it is a feeling occasionally.  My mom brought us dinner once this week.  That was such a nice treat, I am so bad in the kitchen and feel like when we are running so much that I fall so short of feeding my family well.  Some of the medical bills have started arriving, wow, some of those numbers are mind blowing!  Thankfully our insurance is really covering the vast majority of it so our part, though not so small to us, is very small in comparison to what they have and are paying.  My house isn't so organized like it was and I don't know where anything is anymore and I feel like I can't keep up with the dishes and laundry and everyday mess.  This year was supposed to be our 10th annual Sams trip and that hasn't happened.  We are out of so much and I don't see us being able to get it all.  Thats hard bc then we will have to think about all that throughout the year and somehow fit it in the budget.  I've gotten so used to not having to worry about paper products and cleaning supplies throughout the year.  lol.  But Kayson is doing so well and we are still so thankful.  Please continue to keep us in your prayers as we navigate through all the crazy scheduling and try to meet everyones needs and get everyone where they need to be and still enjoy one another and support one another.  I just feel like my brain is so fried.  lol

Wednesday, March 14, 2018

Kayson Strong as an Eagle Day 48

Friday 3-9-18
GOING HOME DAY!!!!!!!!!!
7 weeks!
3 1/2 at the big hospital, two of which were in ICU, 3 1/2 at rehab!
WE ARE GOING HOME!!!!!!!
Daddy and Keegan drove in to help us get everything home.  We got discharged, we ate lunch at RMH and the boys got to see the playrooms and playground for a short bit.  Then Keegan rode with us to be with Kayson.  They were talking and laughing and so excited and looking for games on the iPad.  Brothers!!!!  It was so great to hear and see!  We got to the edge of Dallas and I cried!  Oh the feels, oh the emotions, they were everywhere!  like, I almost couldn't believe it actually happened and we were actually headed HOME!  We stopped at Texas Best and the boys picked a snack.  These normal things that we took for granted and just getting to watch Kayson do them again, they aren't really words.  We picked Kalani up on our way through longview and then we arrived home.  The school kids were already home.  Meme and Aunt Sherrie both stopped by.  The boys played Legos and we watched Annie, the new one.  Kalani signed all done at dinner.  Oh, HOME, have I mentioned we are HOME!  All together under one roof again!  The joy and the fear and just the deep deep emotions, some of which I absolutely didn't expect!  I wanted to cry and laugh and cry.  Kayson's "room" is now right off of our bedroom, it's what was our "sitting" room, although it was never used for "sitting" LOL.  Him and Keegan always slept together before so they did this night.  I can already tell we are all sleeping better.  Then Cayden of course didn't want to sleep in their big room all alone, so he is on our floor.  Kalani is still in our room too.  Why do we even have a multiple room house?!?  LOL  Now the readjusting begins................

Monday, March 12, 2018

Kayson Strong as an Eagle Day 47 and 48

Wednesday 3-7-18 and Thursday 3-8-18
Baby boy is in underwear today!  Also they took his wheelchair back!  We had our care meeting today and they said we can go home friday!!!!!!!  I may or may not have actually done a happy dance in the hallway!  HOME!!!!!!!  They also confirmed that he will need dyslexia testing.  This was visible pre-stroke, I was in the process of trying to figure out why he wasn't reading or counting too high yet although he is so smart and halfway through 1st grade.  He will continue therapies outpatient, OT (occupational), PT (physical) and Speech.  Kayson made pizza with childlike cooking group.  Its so neat they do all these cool things with the kids.  We went to Northpark mall again looking for a new carseat for Kayson.  They said he needs a 5 point harness.  I really like browsing that mall, I may actually miss it!  lol  Even if I can't even dream of affording half the stuff their!  We walked into Neiman Marcus.  Oh my those prices!  $2000 shoes, $300 dollar little girl ballon dress and an oh my goodness beautiful $26,000 mirror!!!!!!!  We didn't find a carseat but we did have fun!  :)  However they said Kayson was so sad the whole time we were gone.  He really is so ready to be home!  He made it clear he didn't want us to go together to find him a seat.  So I posted asking if anyone wanted to go looking with me and instead got recommendations for a seat, looked it up online and really liked it, wanted one but needed it local, no time to ship, and another friend found one online that was in stock at a local store!  So Glenn went and bought it!  Such a blessing, another look at God's grace.  The Acadian Operations Manager also paid us an apology visit!  That was just so nice and he also let us know they looked into the situation and someone in dispatch didn't do what they should have and were supposed to have been picked up in twenty minutes!  He said they have such a good relationship with OCH and he wanted to personally apologize.  Wow!  Our (Kayson's) (lol) nurse came in ad went over discharge papers with us in preparation for the next day.  So many appointments!  Learned he also had seizure meds ordered for just in case.  Thankful he hasn't had one but just having the meds is scary.  This was also the first time I saw all his diagnoses in print.  That was something.  Feelings I wasn't expecting.  Baby boy has been through so much, has survived so much!  Oh thank you Jesus again that he is still with us!

Saturday, March 10, 2018

Kayson Strong as an Eagle Day 46

Tuesday 3-6-18
After the laundry fiasco, I still needed to get the laundry dry and it took till after midnight to get it dry.  There was another mom in there and we talked for two hours!  It was refreshing and she agreed I only had one load, lol.  Kayson is really starting to get homesick and the hospital staff is starting to notice.  Honestly, we are all homesick.  This is hard.  His Neuro Psychologist even let him call me to say hi bc I wasn't there yet bc I slept in.  Later after I got there, he was almost crying and wouldn't really talk to me so I asked him if he wanted to see pics of home.  We sat there and looked at pics of his siblings, extended family, the house, everything.  He was smiling soon.  Seriously though, I almost started crying too.  Glenn is anxious to leave.  Just feeling closed in.

TIRED
tired of measuring his pee
tired of constantly being watched
tired of writing down all intake and worrying if its enough or the right stuff
tired of being separated (can I just sleep in the same building as my husband again?)
I want my things
my control
my people

Glenn's napping, I feel discouraged.
Kayson had an appt with the neurology clinic today.  It went well, the doc is very impressed with his progress.  Things still feel quite overwhelming, more appts coming and more tests.  Still uncertainty.  He is still in the at risk for recurrence time frame.  We have to get rid of our trampoline.  The doc did day that they have a scale to 10 for deficiencies and Kayson scored a two.  He said prestroke, he prob would've been a one bc of his possible (testing likely this summer) dyslexia, that I was already seeing and he was struggling in school before but now he is a a two.  This is good bc he's so close to prestroke already and his physical symptoms (weakness, shaking for fine motor activities) that is putting him up to a two.  Then we waited 2 hours for transport to come get us!!!!  OCH even had to call us to find out where we were and we were like we are still waiting and then they had to call Acadian multiple times and finally someone showed up!  Thankful for a vending machine to get snacks bc it was dinner time.  Thankful I remembered Kayson's iPad.  It was dark when they got there but we finally got picked up and back to OCH.  I had to heat Kayson's pizza back up for dinner.  It was crazy.  Life is an adventure.  I started imagining cherry trees to sleep in around the waiting room in case we were left overnight (I knew this would not be the case!) LOL  Yes this is an Anne of Green Gables reference!!!

Thursday, March 8, 2018

Kayson Strong as an Eagle Day 44 and 45

Sunday 3-4-18
Oh how I miss church!  Kayson is doing so well though, he started snapping his fingers, he helped us with laundry, they have family washers and dryers here at OCH.
Monday 3-5-18
Speech took him without his wheelchair today!  We went out to the playground again, trying to take advantage of nice days and get soak in Vitamin D.  Honey watched youtube videos all afternoon and worked Kayson's new Rubix cube.  lol, He's obsessed!  However it was a pretty rough day all around.  Glenn had a guy be very rude to him over the phone, so much so that Glenn spoke to his supervisor to complain.  Not something Glenn does a lot of!  Kayson had a hard moment in the playroom, threw a fit over losing a game of connect four and not being allowed to cheat and then he ended up being the winner anyways but not before he ended up in my lap in tears!  How do you discipline a hospitalized child?!?  Then when I went to RMH, I did the laundry there and the washing machine broke with my clothes in it and a lady that works there griped me out, said I broke the machine and almost caused a fire all after she very rudely (in a rude way and mean tone) asked if I spoke english like I was stupid if I didn't (again, NOT my opinion on language but how she acted) then she said "you're a grown woman you should know how to do laundry!"  I was almost in tears.  I went over to the machines she had split my clothes into (they were previously in a super load washer) and started to take the dripping clothes out and said I'll take them to the laundry mat.  She was like I already split them for you, heres new laundry pods you don't have to do that.  I told her I didn't like how she spoke to me and they needed to keep their machines in better repair.  Then she led family house meeting that night (they have one every monday and every family is required to attend) and she said how she didn't want anyone going to the laundry mats around here and how they were unsafe and I was just sitting there up front looking at her the whole time.  I think I made her nervous when she thought I was actually going to take my dripping wet clothes to an unsafe laundry mat bc of her rudeness.  I felt like going to Lowes the next the day and purchasing a new machine and putting a big bow on it and a note with her name: Since you so kindly pointed out last night that I am a grown woman, I would like to replace the machine you claim I broke, bc I take responsibility very seriously.  but I didn't.  Oh I was so hurt and mad.  It was hard to stay there and not go running back to OCH and Glenn and make him stay the night at RMH and go to family meeting.  but I didn't do that to baby boy, he likes his daddy with him!  and I did go to family meeting and I held my head high and looked her straight in the eye as she led it.  RMH has been such a blessing but I will not do laundry there again unless they take better care of their machines, if they are going to be that rude when they break.  The machines are not commercial grade machines, they are home ones, they run all day and sometimes all night, they are dirty and the dryer lent traps are broken, I previously almost cut my fingers on wire when I was trying to clean it.  I am still super thankful for RMH and a place to stay and we have met some wonderful people there and it has been a huge blessing all in all.

Sunday, March 4, 2018

Kayson Strong as an Eagle Day 43

Saturday 3-3-18
Baby boy kept his pull up dry all night and all day!  ('cept for one thing in the evening)  This is so exciting, maybe we can try regular underwear again soon.  The guys brought us donuts for breakfast. Then we went down to the cafeteria for some activities they were having bc construction was going on on the second floor.  We played bingo and won lots of prizes, Kirsten won like 5 times so we gave two of her prize chances to other little boys.  Kayson wanted to keep playing and we figured out it was because he hadn't won yet (even though he had chose two prizes at least, one of his daddy's and one of Kirsten's) bc he wanted to win on his own!  LOL so the lady calling the numbers looked specifically for his number and called it so he could yell bingo and pick his own prize and we could go do something else bc we had been playing for like an hour and Glenn and Keegan and Cayden had already quit and went outside, lol.  Then we all went to the playground.  The boys had fun playing together.  We also watched a crane lift one of the huge ac units onto the roof and Cayden tripped over a ball as he was trying to video it and not watching his feet.  We all laughed!  :) Then we took the other kids to Medieval Times.  That was so neat!  The chicken was great and the show was fun and exciting, Keegan was on the edge of his seat by the end and Kalani loved the horses.  We had front row seats.  When we got back, we heard Kayson threw a bit of a fit and wasn't so nice.  When we got to his room, he wouldn't talk to us at first so we deduced he was mad at us for leaving.  :( He got over it pretty quickly and showed us a cape he got and was excited about his goodies we brought him.  After we said goodbye to everyone, that's always hard, Glenn laid on the couch and got a nap and Kayson and I sat on his bed while he watched netflix on his iPad and I played on my phone.  It was a great day.  I just love to look at this boy and my heart overflows with thankfulness!  Oh how much we really do take for granted.

Kayson Strong as an Eagle Day 42

Friday 3-2-18
He had a visit from a different dog today, a golden retriever named George.  OCH had a spa day for caregivers this afternoon.  They had someone come and give short chair massages.  I had never had a real massage before.  It was nice, short but nice!  :) Then they had a room set up with a calming atmosphere where we could relax and make a sugar scrub and color and refreshments.  It was really nice.  After we took Kayson to the playground, it was such a nice day outside.  We left his wheelchair in the roman he walked there and back!  woohoo!  We also met another family.  It was so nice to just sit and visit and watch kids play, there was a time I wondered if that luxury was gone forever for me.  We started talking bc they asked about Kayson bc they saw him in a wheelchair just a few short weeks ago and walking today.  He really is super amazing!  Then our other kids got here!  I always love seeing them!  Minus a Chris who stayed home for his first track meet.  We missed him super much but are so proud of him and he ran great!  We made a decision this week about Keegan and told this evening.  He took the news well and is even excited.  We are going to enroll him in "real" school, as he calls it, when we get home, after spring break.  This is big for me.  I love having my babies home!  I know though that things will be busy with Kayson and adjusting to Glenn's new schedule and being home again and baby girl and I don't want his schooling to suffer.  Please pray for a smooth transition for him and that he'll make friends and love his teacher.  I'm so thankful that he has been able to continue his schooling with a church family while we've been separated.  I just don't know if there are words enough to express my gratitude for all that has been done for our family during this time.  I just don't know how we would've made it without everyones love and support and prayers!  The people God has allowed us to to know and do life with are amazing!  Keegan was also quite excited to tell me he was able to finish the wimpy kid books.  I'm so glad he likes reading.  as do my others.  Hopefully we can figure out Kayson's reading issues and help him get to where he can also enjoy it.  Then Kirsten got to stay the night with Kayson and me.  She slept in the bed with him, he liked that.  Oh, I love my babies so much!  All of them!  Kayson was a bit restless through the night but I think it was bc he was weaned OFF his methadone!  Now he is fully off all his meds cept the longterm aspirin.  We are so glad to have him off those meds!

Friday, March 2, 2018

Kayson Strong as an Eagle Day 41

Thursday 3-1-18
Hello new month.  You find us still here in Dallas and not home.  And you start out stormy!  We found out this am that Kayson will be screened sometime after discharge for dyslexia.  I knew he seemed to be having problems with reading (he's not yet) and counting.  I feel a bit relieved at this though (whether I should or not, I don't know) bc others are seeing the struggles I've been having with him school wise and couldn't quite put my finger on bc I know he can remember things and is super smart!  He came back from his first T as we have taken to calling his therapies, and wanted to watch The Emoji Movie again during his break even though he knew he didn't have enough time to watch the whole thing.  And why is POOP so funny?!?!?!  *eye roll*  BOYS!  When PT came to get him, they left his wheelchair in the room!  When childlife was working with him cried bc he got frustrated at the numbers.  She was working with him to build a small lego car but he had to tell her the number of the step and it was hard for him.  He was glad when he got it done though and got to keep it.  Then Glenn and I went to get lunch and were gone longer than planned bc the mall ate us!  We found Northpark mall, the RICH mall!  LOL  They had valet and a Lego store and a Vera Bradley store and a Tiffany's (first time I've been in one!) (I even asked what their cheapest item is, like in the movie and it was a $45 bottle of body wash and I even got to hold it and get a pic with it!) and an Apple store (another first for me)!  I took selfies!  I take more of those than my teens!  LOL  When we got back to Kayson we found him in the hallway with another little boy both in their wheelchairs and both in neck braces playing the Wii on a portable cart thing!  So cool!  They were both having so much fun!  He smiled and waved at us and went right on playing.  Then it was dinner time and we took him and his dinner down to the cafeteria bc they had a family dinner and were feeding the parents.  It was neat to all sit at a table together.  :-D  It was a good day.  So much to be thankful for!

Kayson Strong as an Eagle Day 37-40

Sunday 2-25-18
He finally got his lego sets from the tooth fairy for the tooth that dental pulled in ICU.  He liked that! :) He got a flu shot too.  He did not like that!
Monday 2-26-18
more vaccines!  he was somewhat behind and we had already been talking to his pedi about catching up so they said they could do some here.  He colored a batman picture for OT with his left hand!  so cool.  He also took a nap and didn't eat the best, I think maybe he wasn't feeling 100% from the flu shot.  Glenn decided he needed out (lol) so he ran to some gun stores.  Kayson and I went out to the playground, I hadn't taken him out by myself yet.  Then we looked at pics from the aquarium, he liked seeing the fish.
Tuesday 2-27-18
We played guess who 3 times!  He loves that game!  Marmie came to stay the night with him so Glenn and I got a date night.  We went to Simply Fondue for dinner.  We love that place!
Wednesday 2-28-18
Honey and I slept in a little and went to IHOP and stopped by Sams, then he dropped me at a big Half Price Books and ran across the street to a REI.  It was so nice to get out for a bit.  Then when we got back I had a headache so I laid down for a rest before Glenn left for the night and to go to a college basketball game.  It dawned on me while I was dozing in and out that Kayson won't be eligible for military service, he wouldn't be able to get the doctor clearance now.  I'm not sure how I feel about that.  A bit relieved as a mother but a bit saddened too bc it is such a big part of his family history.  Because now he does have limits, you know, we tell our children you can be anything you want to be and now I can't say that to him.  It's a different feeling.  Not that he has ever shown interest in military service so it may not even be a big deal to him and I'm certainly not going to make it a big deal, he currently wants to be a scientist, he has said that for about 2 years now!  Currently I have one that wants to be a PTSD counselor, one that is considering the Navy, one talking about being a lawyer  (bc his mother, whoever she is, said he would make a good one!), he says, "Mama, when I become a lawyer and make lots of money..............." :) another one is considering being a police officer like his daddy and the one wants to be a scientist, the youngest can't talk yet!  lol That evening his daddy went to an SMU basketball game and got to shake President Bush's hand!  Kayson watched the Emoji Movie twice!  *eye roll* lol Then he laid down on his own and went to sleep without me having to lay in bed beside him.  As I was laying down trying to sleep I was thinking of home.  We are so ready to get home but at the same time I'm a bit scared too.  I feel like there are so many uncertainties and so many ways life will be so different.  I know somethings will work themselves out on their own but its still hard.  How will we just do life now, how will school go, do my boys need more than I can give?  What will other people say whatever decisions we make in this area? (I know these are our children, we will not base our decisions on others but on what we feel is best for each child and how we feel God leading us but others words can be harsh and can still hurt) Will he be able to play baseball again (the docs say most likely!)?  How will I be able to let him play again without freaking out?  Will we still be able to have date nights?  How will I be able to leave him with his teen siblings and not worry (they are fully capable, it's not the teens)?  Will I ever make it to yarn group again? Will we get our Annual Sams trip done to get the things we need for the year?  What will his therapies look like?  Will they be in longview or at home?  Do we need to sell or give away our trampoline bc how can I ever feel safe with him on it again?  Is that fair to the others?  Will he be out of pull-ups or still in them?  How do you re potty train a seven yr old?  I'm sure we will just have to take chances and he will just have to have some accidents, do we start that before we leave?  How will I ever be able to let him just play at Park day again?  How do I not worry about every little thing?  Every little stumble?  And this neck brace, and the possible surgery and how do I pray?  Do I pray he needs the surgery?  Do I pray he doesn't and then how do I trust he really will be ok?  I will pray for God's will and direction for the doctors and His grace for the future whatever it holds and for Kayson's protection whatever it looks like.  The doubts are hard, I know they can't consume me but they come up sometimes.  So I will leave them here for now and watch my son play on this playground on this super pretty day after so much rain!  (I am writing a few days later so.........)

Thursday, March 1, 2018

Kayson Strong as an Eagle Day 36

Saturday 2-24-18
Our babies are here!!!!!  Breakfast at Chick-Fil-A!  This CFA even had spinners for sale!  Everybody (well, all the minors) got one cept little baby girl got a cow instead, lol.  :) Then to the Dallas World Aquarium were we also met some close friends.  I love these outings with my babies!  I miss Kayson but I am also thankful for these opportunities to enjoy my other precious babies too.  I love being a mother, I love the different stages we are at.  Each child just adds so much to our family, I just can't imagine life without any of them!  Whatever sacrifices we have to make individually or as a family bc there are so many of us are worth each and every child.  They are all my miracles and my sunshines!  There have been days that these preciouses are the only reason I get up, my reason for pushing through, the reasons I seek a way to be ok even in the moments I feel like there is no hope.  My babies, my light, my God-given miracles!  The aquarium was so neat!  Such beauty!  God is so amazing!  His art is just, wow!  The fish and the coral and the colors, wow!  I love the photo ops.  Oh and I bought a fidget spinner pen for myself!  I'm actually sitting here spinning it when I need to think about wording or what to type about next, lol.  It's orange, Kayson's "second favorite" color.  Then we headed to the Magic Time Machine for lunch bc Kirsten is the only one who's been and she wants us to experience it so bad but it was already getting late and there was an hour and a half wait!  So we ended up at Friday's (It's been years since I've been there and we've never taken the babies there and actually we can't remember ever eating there together, how does that happen? lol!)  When we walked in the hostess asked about our matching shirts so I was able to tell her about Kayson and she almost cried and the lady who came to take us to our seats listened too and the manager even came over and asked our story.  I guess that's where we were supposed to eat that day.  Then we went back and the kids got to visit with Kayson for a little bit but they left when he got a headache.  It scared me, even though the docs had said he would still have them and pretty much confirmed that they are migraines.  I just about wanted to demand they take him for an MRI.  I knew he wasn't acting like before/during the stroke but was acting like it was a migraine, like the ones before.  He got some tylenol and had a nap and woke up ready for dinner and a shower.  I was so thankful.  I know I will be jumpy every headache or stomach bug for awhile!

Kayson Strong as an Eagle Days 33-35

Wednesday 2-21-18
He got his tube out!!!!  His tube is out!!  There is nothing in his nose now!!  How many different ways can I shout this?!?  We are so excited!!!!!  He also got to participate in a cooking activity this afternoon.  They do so many neat things here!
Thursday 2-22-18
Another dreary, rainy day.  blah!  He got his Hulk arm today.  It is a cast for his right hand to make his left hand do more and get stronger.  We had a neurosurgery office visit at the hospital too.  They transported us there and back.  They are all amazed at how well he is doing!  The head doc even came in to see him!  Kayson used his prayer shawl for cover bc we don't have a jacket here for him and it was cold!  This Texas weather can't make up its mind!  lol Also we got these buildable robots on sale at the gift shop and they are super cute but boy were they a booger to get together!
Friday 2-23-18
More rain!  ugh!  Oh my this boy is hyper today!  He got to go to a bday party this afternoon and had so much fun!  Then his siblings got here!  We love their visits so much!  Then a friend of mine came to keep him company for the night so Glenn and I could both be with other kids.  He was so excited, she brought him a cake and a light bright (he's never had one) and a glow batman and a guess who game!  He super loves that game!

How blessed I am to get to type these blog posts!

Kayson Strong as an Eagle Day 32

Tuesday 2-20-18
1 MONTH!  Today marks a month since our nightmare began.  One month since I had a healthly boy with no health issues aside from his mild migraines.  One month.  One month of hospitals and meds and docs and being away from home and other children in others houses.  One month.  As I sit and reflect on this one month mark, I also think of Kayson's story.  Everyone keeps saying oh he has such a story now, he has such a testimony, and let me tell you, I do not dispute or doubt that at all but you really have to know his whole story, bc he has so many layers and he's only 7!  He already had pretty amazing things to be told before all this too.  I do not pretend to be able to accurately interpret all the pieces to his story or explain them all, I just know what is and that's what I will write here.  When I got pregnant with baby boy, I did not have insurance.  I applied for and got on pregnancy medicaid.  (This is where I have all kinds of explanations and things running through my head to type here bc I've heard the judgement before and I know some people reading this will form their own opinions, I will not feed into that here, this post is about baby boy so I will refrain.)  Here's the deal, this ended up saving my life!  Baby boy saved his mama's life before he was even a year old!  Shortly after he was born and even a bit before, I began getting sick off and on but consistently.  I would not have gone to a doc if not for him, in fact I almost didn't even mention it at my six week check up, but I did and my ob said you need to get that checked, I think it's your gallbladder.  So I did and it was and the surgeon that removed it said it was the worst one he had seen!  Another thing, we are big on making sure our babies have names with strong meanings, so as we were in name discussions we posted on FB for suggestions bc we were having trouble deciding on and finding a name within our parameters that we could both agree on.  Our parameters, you ask?  1) middle name = family name, that one was easy to agree on, Pierre, my daddy's middle name and it means rock but 2) the first name has to start with K sound, it can be a C or a K but has to have the hard sound and a good meaning and I always want a good spelling.  For some reason I can be very picky about name spellings.  So we posted.  A close friend (she knows who she is!) posted his name spelled Kayson and I fell in love with it.  I knew Glenn would like it bc he had already suggested it spelled different but I didn't like the spelling so when she spelled it like this I loved it!  Then we looked up the meaning and it means wait.for.it....................HOUSE!  Really strong, right?!? right???  lol, but remember his middle name? Rock!  So my baby boy is House on the Rock!  Now that's a strong name!  Another layer to his story is one that I don't have answers for, God knows, this is where I do not pretend to have all the interpretations or answers or anything but I will tell it like it happened even though I don't know the why.  My grandma lost her first baby to SIDS and that has always been a fear.  While I have always prayed for protection over my infants, this time was different.  This time I felt I needed to pray for angels specifically with each child by name and specifically for the angels to watch for the child's breathing and make sure they do.  Also I have continued to pray that prayer nightly for his whole life until recently.  I don't know what all this means but I know we serve a big, huge God who has my precious baby boy in His hands!  Another more recent aspect to Kayson's story is just a week before his hospital stay started!  He and Cayden saw Papaw (my daddy) fall nine feet from a ladder.  First Kayson comes in and informs me Papaw fell (I didn't know how high he was up) but that he's fine.  Then Cayden comes in and says the same, he says Papaw is up and walking and said he was fine so at this point I'm not worried and I can hear daddy outside walking around and talking.  Well, about 15-20 minutes later Kayson returns and he is very puzzled.  "Mama, did you know Papaw fell?" "yes" "Well, *pause* he keeps repeating himself *pause* over and over."  still very puzzled and at the point I can tell he is somewhat concerned.  "He keeps asking the same questions over and over" At this point I get concerned and decide I better see for myself.  An hour and a half later I have finally talked my daddy into the ER and he is diagnosed with a sprained ankle and a concussion.  They sent him home with orders not to sleep for 24 hours! and not to return to work for at least a week and get a doc's clearance before!  Keegan and I stayed up all night with him and Kayson made it till 2:30 ish.  Then teens took the day shift.  And daddy is still with us!  God's grace!  Just God's grace!