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!
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 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!