8 years 6 months

Well.. this month started off CRAZY!! EASTER EGG hunt ! This is the 3rd Annual Egg hunt at our house and My MUM is crazy.. She says , “GO BIG OR GO HOME”. Sissy, Miss Kyrstin, Elouise and Isac came over and helped stuff eggs.. they literally put out 1600 eggs.. I loved it.. I did it by myself and Bubba Walker helped me some too. But I filled up my basket and had soooo much candy.. Now I have never really eaten much Candy.. Jelly Babies, Chocolate Buttons and Butterfly gummies from Buc-ees but not really candy.. Needless to say I realized that candy is really pretty good so I have been getting into it when Dad isn’t looking and well I got caught b/c I left the wrappers behind! OOPS… He didn’t feed me lunch just pancakes so figured hey I will feed myself that is what you have been trying to teach me right…. WE had so many people come.. Gavin was there and his family, My friend kade and his mom that is always doing fun activities with us .. and his grandma that is super sweet .. Mummy says she has the same name as my Nana that I didn’t get to meet b/c she passed away before me. Mummy new friend Heather came, and her new BESTIES… Lisa (and Alex) and Kyrstin and(Elouise & Isac) Bubba Walker, Sissy Joy and Daisy were here and Myron (OG)came all dressed like the EASTER bunny.. I thought it was funny… Daisy knew immediately it was OG . He let me wear the rabbit head and I walked around everywhere .. I loved it… Sissy and Bubba friend Daniel and his girlfriend and kids also came.. We had so much fun..

Sunday at Church we had service and I alway type CHURCH / Jesus first then TEA b/c I want tea after church but today we went outside and had what they call a CANDY RAIN.. It was a special day at church b/c it is the day Jesus came back to life … I love everyone at church .. they all pray for me and I show Sis. Blunt how to anoint Mummy when we go up for prayer.. she always puts the oil on my head and then I show her where to get mummy at.. she just smiles and says Ok Liam :) but she sings a lot too.. She is so sweet I love her so much… we went outside and all the people in the church were helping us to get candy .. Sister Tammy husband helped me a lot he was finding candy and putting in my bucket.. I really was enjoying just watching them throw it.. Now that I know what candy taste like wait till next year I will be all over looking for candy!! I really love our new church and how all the people are so nice to me.. Terria of course is still my little crush!!

We were supposed to go to school Tuesday but mummy was confused and took me Monday and there was no school… was really weird getting to a school and theres as NOBODY there.. she was like well silly mummy totally forgot and she honestly was talking about it over the weekend… I did get to go to Speech, OT and Pt and see Miss Hilary, Miss Deborah and miss Elizabeth.. So at least some of this week is normal …. And daddy took me to get TEA…. He drove all the way home I was like DAD CAR WASH!!! He said Liam we aren’t washing the truck today.. well I stayed in the car and said CAR wash… AGAIN! So we went… of course we went.. Dad knows I need to see my CAR WASH friends!! And then I talked him into going to BIG Lots so I could get another action figure!!!

Tuesday we didn’t go back to school because of tornadoes .. didn’t even get to see Miss Kate… so I have been home for 7 days… She said I had to go back for real tomorrow :) I Love my teachers and truly love to learn.

Back to school was ready this am.. My mum is always so silly we play music, sing and I praise as she drives.. Then she does silly stuff and I tell the cars to move.. we laugh…. She said are you silly Liam and I told her Dada was silly not me.. . Got to school I put my backpack on and said bye bye mum… I was ready for some structure this week.. Home gets a little boring over time ..

We had therapy today.. apparently there is thing called an eclipse going on. Not so sure what it even means.. mum gave me the iPad to play on to go to therapy so I wouldn’t watch the airplanes today.. I started bowling with my PALS group again so we are bowling on Monday nights I have a cool pal named GAVIN.. I can remember that b/c of my best friend Gavin… I would type it on my device but it always shuts down about this time of night. Wish mummy could find a way to make it work longer or I had something else that would let me talk. But I bowl and still show my silly side …

Daddy went out of town this week and so it was mummy and me all week.. we just did typical therapy stuff and chilled a lot.

Thursday is Kleefstra reunion pack up and head to South Carolina day to see all my Kleefstra Brothers and Sisters. What fun!!! BUT the best part is I get to go to BUC-EES yes I said it BUC-EES and not just once but twice there and twice home there are two in Tennessee and remember we have the biggest store in the US in Tennessee right now!! So excited!!!
Stopped at my home store in Crossville and met Beth and saw Jenny she is the new manager now that Delaney went to Texas ( will see her in September when I go to Napa). WE got a few snacks and of course bathroom and got me a few shirts for the weekend and back on the road.. Stopped again in Seiverville at the BIG Buc-ees and went to bathroom again and go ready for the last part of our drive. That Store is so big … I just SAY BIG!!! And of course I go get my picture with the Buc-ee in the truck b/c he is the one I hope to have one day … .

Finally arrived in South Carolina … mummy and I were up so late … I crawled into bed and sat there barely 10 min mum said and I was crashed out asleep it was like 4 am I was tired. Mummy worked!! No thanks you can stay up I am going to sleep.

Friday am the computer was still giving mum some issues but we got up and went to eat with Brandon, Mande , BeBe and Little Liam who doesn’t want to be little Liam anymore so now he is Liam and I am Buc-ee Liam which is ok. We went to the park later on for Dinner with our Kleefstra family. Ellie gave me a neat gift bag and I had a cool robot and stuffed toys. Dukes Mayonnaise sponsored our meal and it was a good meal. I loved a lot of the stuff they had. We hung around for a little while and headed back to our room for some rest for the event Saturday am . Of course we stopped at Walgreens to get a poster board and I wanted to look at Toys… what kid doesn’t want to look at toys.

WE got back to the room so we could get ready for bed and get some rest …Danielle , Mallori, Jaxon , Gavin and Larry were across the hall from us at the hotel so they would come back and forth and hang out. Julia came too and I said her name. Everyone was so impressed… hey I can say some things.. just a lot easier to say things on my talker where I know you will be able to understand better…

Saturday am mummy made me get up so I went to breakfast in my buc-ee outfit .. Don’t care.. I was tired…. We ate with Gavin and family, and Brandon and Liam came down, Maria was there her girls got to sleep in I was so jealous… wish I could have had my grandma there she wouldn’t have gotten me up to eat a breakfast I really didn’t eat.. . But all is good right… We went back upstairs and got dressed to go back to the park. We arrived early b/c mummy wanted to get the poster board to Ellie. (Too early but all good). Took pictures but I know none of you reading this would expect anything less of my mum when it comes to pictures… I sat for some of the day and played on my game. Tried to FaceTime grandma but wouldn’t work but my game did. Mum went and got these cool smore bites and I had 3 they were sooo good. After a bit we got up and went to the area up front where the music was LOUD and hung out for a few minutes and then guess what MORE PICTURES!! Took some new picture of all of us together and then a picture with me and my Kleefstra brothers and sisters… I went back and realized lots of cool new people so started somewhat asking for their names and asking them to throw me and pick me up and play with me. Mummy was saying Liam stop but they said it is ok!! So see I am good to hug and play with the other adults around mum….

Sarah , Jessica , Jordan, Lee and Alex played with me for about an hour. Some are apart of CB events they are the ones that helped put the event together

After the even we went back and ordered Chinese food later for dinner I got my favorite noodles and spring rolls and WE picked up for Danielle and them as well so we all had a semi- picnic in each of our rooms since there was no table to sit…. Danielle came and hung out with us for a little while I kept going into the bathroom and flushing the loud toilet b/c it was loud and funny!!! I was making Danielle laugh super hard with my silliness … when I get really tired I get really silly ..

I am ready for bed b/c when I wake up I get to go to Buc-ees… mummy had everything lined out and ready to go so all we had to do is load and go. We got up with it raining the guy at the front desk helped us get our stuff out and helped by letting mummy and I move the car under the covered area. We got parked and he brought everything out for her and helped out. Nice some people are still kind to others. Everyone was really nice to us there.

We made it out of South Carolina and North Carolina it was raining and yuck. Almost to Buc-ees and I wasn’t feeling great and puked .. Mummy pulled over and cleaned me up but I didn’t have another clean Buc-ee shirt. Was not happy about that at all. Got on my seat belt cover as well. We got to Buc-ees and found me another seat belt cover , blanket and shirt to help me get home. We got to parking lot and I was stripping because I wanted my Buc-ee Shirt back on… So she changed me and then Mummy let me go thru the car wash too.. it was soooo cool had this neat logo that reflected into our car with my favorite Buc-ee on it. It was colorful and really neat…But still love my car wash at home.. Wash 37055 and Wash 37062 are my family now…

We went to the next Buc-ees and right before there I woke up to find chocolate on my hands and wanted it off….. Mummy helped and we washed our hands at the bathroom when we got there … Then off to see my Buc-ee in the truck my happy place. Got to see Wes was so happy haven’t seen him in a while… Miss Dane.. but I know we will see him soon at the new Kentucky Buc-ee and it is closer to the house … but Crossville will forever be important and in my heart .. :) We got back to town and went to church .. I was a little tired and cranky and was starting to get upset so we left… Mummy and I went to bed at 7:30 we were so tired…

This week was a little crazy being so tired from travel I wasn’t myself at school b/c everything is the same and I still have school therapy and need a week of rest.. But I endured and moved thru …. Mondays are long days and my device is giving us some issues again.. my word find disappeared and. I was very upset b/c I couldn’t talk or tell them what I wanted. Mummy did get it fixed but was not happy I couldn’t use it while she was fixing it..

I had to see my beautiful Pulmonologist on Wednesday she is sooo sweet and kind…. She checks my ears when I ask too and just talks to me. I talked a lot to her as well .. I really like Caroline.. I can spell her first and last name. They were talking about my scope they were doing soon … hopefully I don’t have that junk in my chest again.. After we finished I was ready to do my blood work for Dr. Lana but mummy told me we had to go to childrens to see my cardiologist and we would do it there. So off we went and they have changed Childrens.. I had to walk a very long way b/c the security guards had all of the handicap and close parking blocked off. it was not a lot of fun trying to get inside we parked on the 7th floor way back.
When we finally made to the hospital they have changed the entry and now they have the big machines to scan us when we walk in and lots of security .. it was very confusing and leaving was confusing too. The people honestly were standing around like they had no clue and mummy and I had to figure out where we were supposed to walk to get in and out. TERRIBLE. Used to love childrens but this is very scary and very confusing compared to coming into a nice welcoming childrens hospital today I wanted out of the busy lobby and didn’t want to exit that way but had to.. Next time I will make mummy go thru the bottom floor and we will just walk and not deal with all that next time .. I will protest and sit outside and make her go down stairs b/c that entry is horrific now..
Got in finally up on 5th floor and checked in. Went back and Missy did my echo and then our sweet nurse assistant was also a EMT and used to work on an ambulance did my EKG. I got to see Dr. Kavanaugh and she did a lot of research on Kleefstra.. mummy was excited at all she knew and some things she taught mom…. She is super sweet.. I took a picture with her and she sent me home with a heart monitor for 24 hours. That I was NOT happy about.. I did it and was ready for my blood work… I was not wanting to keep that on. But here we go mummy said it is just 24 hours Daddy did it too. We went to the 6th floor and finally time for me to get blood work.. I was waiting for this b/c that means we are done … we left and picked up food and Mummy let me go to the red store (Target ). Since I had done so much and I was sooo good. But I am always good..

I had to go to school with the heart monitor.. not happy it is weird and I don’t want to go to the bathroom or move. I just sat in my desk and was still as much as allowed .. Sure the teachers were confused but I didn’t want to drink b/c then I would have to deal with cords and a mess to pee.. I will just not drink and wait till I get home….

I didn’t think that home would get there quick enough today. I am ready for Rita and Saddle up b/c I get to get this thing off of me.. I was not in good mood about it. It makes me feel like my body is going to come apart if I move wrong and the wires will rip me apart. I would rather give blood a million times than have wires all over me. We got to saddle up and I was not in a good mood , daddy took the stickers off and the monitor off but now I have these stupid sticky spots all over me . Ugh if not one thing another let’s just go inside and let me ride !!!!

Finally Friday …. Weekend yay!!! But we aren’t doing much this weekend mummy and I need a break for sure !!!! We rested most of the weekend. Sunday we had church and then daddy had a hang out at one of our fire family’s houses so we went over to hang out. It was fun … I helped with corn hole, played with the puppies , watched Grace jump off the big wall (which was so funny) and Derick and Shelby were letting me get on their backs and spinning and hopping around with me.. it is always so much fun and I love hanging out and laughing ….

Today in therapy I worked hard but was a little cheeky … Of course Hilary makes me work but she also allows me to be myself and act a little crazy…. I get the sounds out for her so me being goofy doesn’t phase her. Deborah I worked very hard for but when we went for the play time I was NOT climbing that ladder. The put my super hero up there and I didn’t care.. he was a superhero he could get his own self down I wasn’t climbing the ladder I know they just wanted me to go up those little pegs to get him NOPE not doing it.. I will just jump on my tire. Miss Elizabeth was out today so I got my red headed buddy Sharon. We did shaky plate and taps, then we went out on the bike and walked a lot of stairs.. that was fun!!! Back to bike and I pushed her on the bike and was trying to show her when to turn… we then went in and played in my favorite the balls!!! She wanted me to fall in but it is a little scary but super funny when she does it. It was fun but I was ready to go .. Monday’s are long days. When we got back to town we went thru the car wash and then it was time to get to the bowling alley for bowling night. We had a great time bowling . I get a little crazy. My friend Jack on my team was helping me with the ball trying to show me how to throw it and not drop or kick it down the lane.. but I like kicking like a football/soccer ball. Or even just rolling.. it is slow but I manage to get some pins every time…

My device died b/c it doesn’t charge good with the charging cord in the back of the vehicle plugged in and we have to run the cord from the very back to the seat and having a cord all the way thru the vehicle is terrible and makes it hard to pick up to use b/c it won’t pull easy and I get frustrated . When we got home finally after therapy, bowling daddy plugged in and it kept restarting and wouldn’t ever load. Daddy took me upstairs b/c I was upset I couldn’t tell him what I wanted so we went to shower and mummy worked on it. I fell asleep before she got it fixed. But she did get it fixed.. She said that it took over an hour to get it fixed she had to google the name of my device and steps to fix a restarting window device for accent 1000 b/c apparently the company support is really bad . She said she found a link to walk her thru but with how hard windows is to work with and the device glitches it was restarting before she could finish the steps and she kept having to start over. So glad she was able to get it fixed. I really didn’t want to go to school without it. :(. I need my device.. I really love it when it works.. Just hate when it takes a long time to say what I say and when it shuts down or glitches it makes my talking very hard and frustrating.. Wish I could talk so I didn’t need it .

I got three packages this month from Dukes Mayonnaise .. They sent me shirts, hats, socks , flag and some of their awesome products… (those are for mummy to use to make yummy food ). Can’t wait to try it all . She has gotten crazy about DUKES since they sponsored our Southern Roots BBQ reunion for raising funds for IDefine for Kleefstra Syndrome. That is what I have and makes me so amazing…

This month as all my months seem to always have lots of busy days with lots always going on. I do treasure my weekends doing nothing but playing with my super hero and playing games… we need to get our garden planted hopefully this next month will give us a little time to get things done..

Love you all …. Thanks for always following and supporting me!

Liam

www.runwithliam.org

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