Friday, February 23, 2018

Kayson Strong as an Eagle Day 29 and 30

Saturday 2-17-18 and Sunday 2-18-18
Our babies are here!  We love them all so much and miss them to pieces!  We took them to the Perot museum today.  That is a neat place.  My fav part was all the gems and minerals.  So pretty!  Wow, God!  His work is so amazing!  His hidden treasures bc you have to search and mine to find them.  Papaw stayed with Kayson.  He stood at the sink and washed his hands with Papaw and they played outside, Kayson hadn't been outside to play since before his stroke!  I don't even know if he remembers the snow that week before that he got to play in.  Then watching the kids all together, I love seeing them interact and care for one another.  They love each other so much.  We had hugs from Kayson and a dancing session complete with a small robot that was bought at the Perot gift shop.  Kayson even handled the controls some.  Then we all went to see the playroom and Kayson wanted to give Kalani a ride so she sat with him and he held her tight on the way to the playroom.  Then on Sunday am Papaw stayed with him again and got him a honeybun out of the vending machine while we took the other kiddos to IHOP for breakfast.  Then we came back and we all went to the cafeteria and played Apples to Apples Junior.  It was so nice to play a game all together again.  Well, except Kalani, she just ran around and went from lap to lap and played with toys we brought down for her and then fell asleep in Papaw's lap.  :) Then it was time for them all to go home.  We get so sad to see them leave.  We were so tired too that we went back to Kayson's room and all took a nap!  I stayed the night with him, at bedtime he needed the blinds closed.  The apartments across the street stay somewhat lit up and the open blinds cast shadows on the wall at night and he says thats creepy.

Tuesday, February 20, 2018

Kayson Strong was an Eagle Days 26 - 28

Wednesday 2-14-18
MOVING DAY!!!!!!!!!  I rode with him to OCH (Our Children's House) in the ambulance.  He remembers this ride and it was my first time riding in an ambulance.  Marmie stayed with him his first night here so Mama and Daddy could go out for Valentine's.  That was so fun, we went to Dave and Busters and I had never been before.
Thursday 2-15-18
Busy day with lots of therapy assessments and chaplain visit who gave him a prayed over stuffed sheep.  so cute and soft.  He wrote his name!  We got a tour of the new facility, cool playground!  He is out of his restraints and doing great!  They came by and gave him a heart pillow that he loves.  He also cried when Glenn left for the night, tears and everything!  Broke my heart!  He wanted a happy meal for dinner.  We went to the playroom and he played with duplo legos and a huge connect four with his daddy.  Watched some olympics before bed.
Friday 2-16-18
fed himself his yogurt.  Loves his new light up batman tennis shoes, stomping!  Got pull-ups for him to wear instead of diapers since he's going in the potty more and more.  He got to swing in PT and kicked a ball and he's walking more and more.  He started moving his wheelchair on his own, he liked that.  gives him a sense of control I think.  This was a hard a day and I felt like crying most of it.  I got mad at the speech lady's attitude and her rules and she had his food come already cut for dinner and another lady told Bridge that "seven year olds DON'T have strokes!" when we were trying to get an appt taken care of.  Bridge made her look at the page and everyone else in the office was crying or close to it.  The lady never apologized.  some people.  BUT the nurses really like my detailed charting for Kayson bc we have to write down all his ins and outs and I'm pretty detailed.  They want to use my notes to show other parents what they need!  lol, that made me feel good.  So thats a good note to end this post.  :)

Kayson Strong as an Eagle Day 25

Tuesday 2-13-18
Today he ate crackers and drank from a straw for speech!  Its so exciting to see him eating!  Luna the therapy dog came to visit again.  She is so pretty.  We talked to her handler and learned she was a rescue dog.  Kayson also told his daddy to go away.  lol  I was sitting with him and let his right hand be free and he used to to take the restraint off his left!  Such a smart boy!  He also chewed up his aspirin for the nurse.  Another step to remove that pesky tube!  He ate a bit of pizza and tortilla with butter for lunch.  Also he was getting super fidgety and we were trying to get him to communicate what he needed to us and we figured out he had to teeter, he did not want to go in his diaper so his daddy carried him to the potty and steadied him and he went in the potty!!!  He also started things for fun.  again, BOYS!  LOL!  We also had a visitor from church come and take us out for a bit while Marmie stayed with Kayson.  It was nice to get to go to a new place for lunch and we found an antique store.  I love walking through those and thinking what the stories of each item might be.  I've also decided that I am going to start a button collection.  I kept seeing all these buttons for sale there and it kinda made me a bit sad bc I love buttons (I don't know why) and I used to have a pretty cool although small collection and the kids (those precious little people God entrusted to my care) lost them all years ago.  So I decided something this day!  (This is not where we all say uh oh). At the church youth garage sale in the fall a very large (biggest one I've ever seen) mason jar was donated and I fell absolutely in love with it and bought it!  This is going to be my super button jar!  I am going to collect buttons starting as soon as I get some, lol and my grandchildren will have a button jar to enjoy when they come to grandma's (Lollie's) house. I got so excited at my decision in the store and Glenn was just laughing at me!  He was like you're so silly and I was all like so I don't care!  I'm going to have a button jar and this makes me happy so there!  LOL  Can you imagine, all those shapes and sizes and colors, my brain just goes into this sensory happy place, lol, I just want to run my hands through all my imaginary (for now) buttons!  I know, I'm weird.  Think of all the coolness I can do with the buttons and my future grandkids, sorting and counting and learning colors.  :-D

Kayson Strong as an Eagle Day 24

Monday 2-12-18
He looks so cute in his new Chewy PJs from the Disney Store.  Everyone likes them.  lol.  Speech fed him some pudding!!!  Woohoo!!  They put him on a soft diet.  One step closer to real food and no tube!  He told the floor doc Good Morning!  It is so super exciting to hear him talking more and more everyday!  His daddy stayed with him overnight and I drove myself to RMH.  I haven't drove anywhere these last three weeks and I hate dallas traffic and parking garages!  not just driving in the garages but just being in them.  They are so creepy!  So I get to the hospital and can't find a spot to park!  I drove around for about 25 min before I called Glenn to come rescue me.  He gets down there and still can't find a spot either, we ended up just using valet bc we were anxious to get back up to baby boy and not leave him alone too long.  I get upstairs and he won't talk to me, I think he was mad at me for leaving.  Glenn said he did ask for me once through the night.  Then they say that bc his left eye was droopy this am they want to do an MRI just to check.  so we have more waiting.  This is such a roller coaster and the waiting is so hard but we were glad when he came back that he did not need any sedation.  Later that evening we found out that the MRI was good so that was a huge relief.  He also got to have music therapy, that is so neat!  and he sang Jingle bells, batman smells for them!  LOL, BOYS!!!  He told me he was hungry so we ordered him some smashed bananas, he didn't like them.  Then he fell sleep.  We were kinda getting cabin fever so Glenn went down to the gift shop and bought two decks of cards and we played golf till he woke up from his nap.  We tied!  We sure love to play games.

Kayson Strong as an Eagle Day 23

Just laying here with my boy, feeling him breath.  Concentrating on the rhythm of his breaths and feeling so grateful for this chance!  Later as I'm sitting working on thank yous (I think) for the ICU nurses, I hear something outside the window and look out and it is sleeting and if you look real closely you can see tiny snow flurries.  Glenn hooked our computer up to the TV and we got to watch some of our church service.  That was neat.  I miss everyone so so very much!  We have such an amazing Jesus family!  They have come alongside us and loved us so very completely.  Everyone needs such a a wonderful Jesus family!  Marmie came and visited and washed his haired brushed his teeth and brought him new clothes and I clipped his nails and he was all fresh and clean.  :)  When the head neuro doc came in to see how he was doing, Kayson told him to go away!  The doc was soooo excited!!  He did tell us that Kayson will be on aspirin long term if not for the rest of his life.  He also has this chew stick thing from speech therapy to help him work on those muscles so I wanted to show his Marmie how he could chew.  So I stuck it in ice bc they said the cold helps wake the mouth up and the stick is hollow, well when I let him chew, I heard a crunch!  He got a piece of ice that got caught in the chew stick thing!  He liked that!  :)  and he crunched and swallowed it!  Victory!  Then we had our first fun trip out of the room.  We went down to see the trains.  He seemed to like that!  He also has been saying more and more.  Said I love you!  started laughing and sticking out his tongue!  being silly again!  Answered Whats your fav color?  "blue" said kiss to me for a kiss without being prompted!  Kirsten came to see him for just a little bit since she didn't get to come yesterday.  Papaw brought her and she brought her art pieces so we got to see them!  I am so proud of the beautiful young lady she is becoming.  It is so exciting to watch her grow!  Kayson also slept well through the night.

Sunday, February 18, 2018

Kayson Strong as an Eagle Day 22

Saturday 2-10-18
My daddy came and picked those of us there up at RMH, I'm so not used to everyone being so spread out!  We like to keep everyone close!  Then we drove through Mcdonalds for breakfast and took it up to the hospital, we can all eat together in the room now that we are out of ICU.  Last night when the kids got there, Kayson and Kalani were seeing each other for the first time in three weeks bc she couldn't be on the ICU floor, she was so happy to see him and it sure sounded like she said, "Hi, Kayson"!  Daddy stayed with Kayson while we took the other kids to rainforest cafe for lunch.  We were NOT prepared for the cold!!!  We were sent a prayer shawl and were super glad for it bc it covered Kalani on the way onto the mall!  Sooooo COLD!  There was an hour wait for the table so we walked the mall a bit.  Bought Kalani some pants so her legs would be covered bc she only had bloomers and then she leaked all over those right as we got our table and had to be put in PJs that we found in her bag!  Then she wasn't eating anything, just throwing it all on the floor, even the tomato!  Till I gave her a piece of my hamburger and she took off the bread and chowed down on the meat!  We let them choose something from the gift shop, Keegan was so excited to get a build a bear!  I didn't know they had those in the Rainforest Cafe gift shop but they did.  Also found a rubber snake for Kayson that I thought would be perfect to keep his hand occupied.  He didn't put it down for like a whole day!  Then we walked some more of the mall after.  Found a sale at the Disney Store.  Saw these guys selling these things called dragon balls that were candy froze with liquid nitrogen and would make you blow smoke.  That just doesn't seem safe to me.  We got dippin dots!  When we were leaving it was starting to drizzle and if you looked real real close you could barely see little itty bitty snow flurries!  Then it was time for my daddy and babies to head home.  It is so hard to say goodbye.  Kayson gave us a thumbs up though.  I didn't realize just how long it takes for the brain to really wake up.  Oh and he spoke to us!  The Doc was saying not to expect it yet but he did!  He said Mama and Dada and yes and no!  Oh it was soooooooo special to hear his voice!  Everything has been so iffy and so scary!  But he's here and alive and knows us!  He knows us!!!!!!!!

Kayson Strong as an Eagle Day 21

Friday 2-9-18
This child was up at 2 am watching guardians, AGAIN!  lol
The pediatrician on the floor thinks his fits were withdrawals from the methadone.  They are weaning it very slowly trying to prevent withdrawals.  She could go back up on the dose but that would slow the wean that already takes a few weeks.
Massage therapy came in today, he really liked that!  Fell asleep for her.  How many therapies does this hospital have???  LOL  It is so amazing all the things they do to make it a happy place.
He started laughing, oh what a precious sound!  His daddy was tickling him!  :) He also winked at us with both eyes (one at a time).
We got awesome shirts printed for our family outings with an eagle on them, kinda feels like we can take a bit of Kayson with us now.
He took a few supported steps for PT.  They had to hold him up but he initiated the steps.  He is supporting his trunk better though and moving his left arm a lot more.
Hid daddy covered him in all of his stuffed friends, turned on Disney music and he slept that way for a nap.  His nurse laughed so hard when she walked in.
Papaw and the other kids (minus Kirsten who has an art competition) arrived.  Keegan wanted to stay the night at the hospital with Kayson and daddy and the nurse said that would be ok!  He was sooooooo excited.
I had Kalani, Chris and Cayden at RMH with me.  Cayden flooded the toilet in our room and we had to clean that up!  *eye roll* seriously?!? *sigh*