7 Years 5 Months

7 years 5 months

This week we dressed up for different things at school ! Honestly I don’t pay attention but Mummy does!!! We had super hero day but I didn’t want to wear my cape!!! Then we had something else but mummy had me wear my rare shirt bc it was rare disease day and we all know I’m rare so that’s why she had me wear it. Then it was tiger day so I wore the shirt she made me for school spirit . Then my favorite dress like daddy day! Got to wear my bunker gear all day at school and therapy!!! It was fun bc I got to take a picture with my favorite police man.
Officer Liberty! He’s the best ever. I miss getting to high five and see him on the way into school but I have a routine with Miss Maddy! Sometimes I hate waiting bc I can walk to my class by myself I don’t need them to come get me but guess it’s part of the rules!!! The weekend came and Walker Mum came in and her and mummy at big buddies . Briana and Bradley came too so we had a house full of craziness!!! We went to the candy store in Charlotte and saw Miss Michelle and then we went to the Amish store and got chips and lots of fun stuff for the birthday celebration!! We jumped on trampoline and I let my new cars go everywhere outside it was soo fun! We had a lot of outside time and mummy cooked for two days lots of yummy food. It was my brother Walker birthday so it was lots of chips, cake but I didn’t like the cake it was ice cream NO THANKS!!

It was wild , loud and well Sunday was nice to have quiet but miss Heather and them here to play with me .
We went to eat at Colton’s and at the bar I saw Santa Mummy wouldn’t let me go talk to him but he got up when we were leaving and hugged me and even had a bag of toys and let me pick one! I had no clue Santa would be vacationing in Dickson but so glad he was !!! Monday thought I was going to school but nope!!! Roofer came by his name is Dalton and he brought me a cooooool dinosaur truck. I love it. I wasn’t feeling great my tummy was kind of hurting !! But after a bit I felt a little better . Daisy came and we left for my appt at Vanderbilt. Never excited about childrens but what choice do I have I’m 7 !!!!
We went upstairs and they called me back for my weight then I had to wait in the lobby . I played Minecraft while daisy was up, down and everywhere.
Bouncing here and there. They finally called me back and someone escaped the ER so this loud annoying speaker

Hematology with daisy! Took blood daisy cried … I could not figure out why she was crying I had a needle in my arm and my blood was leaving my body . I couldn’t figure out why my niece was so upset. She was fine when we left and we went to Maggianos and she was having a blast eating all of mummy ravioli. Mummy had to eat her butter noodles since she ate all her food . Daisy is a growing girl …
Daisy went to music with me the next day we had a dance party it was soooo fun. We played with ribbons and bubbles . We wrote a song and played drums, shakers , ukuleles guitars 🎸 it was a lot of fun. I didn’t mind sharing my miss Kate for one session. I even allowed mummy to hang out and play!! Thursday Miss Elizabeth and I did treadmill it’s scary going on it but I did it because she did it with me. My bike wasn’t there and the balls were gone but I ran, balanced , played on the slide, and vacuumed yup I vacuumed I love the vacuum!! My therapies go soo fast I feel I get there and it’s time to go but I have been improving in so many areas . I am sitting better on Mr Chip!!! I am now helping brush, and learning how to saddle him up. Not there yet but learning . When I ride we do all sorts of things to help me learn to hold the reins , and to sit up straight I’m trying to say walk on and whoa to stop. When we are done with riding I help unsaddle and put up all of our supplies . I’m not quite tall enough but they are teaching me where things go and how to take care of my pony. I love my pony.

I got invited to a Birthday party for my Classmate Sawyer. It was a lot of fun. Mr. Greg / Mrs. Deloras were both there and my classmates. We all bowled together and had a blast… 🙂 Mummy met a lot of other parents and they all talked and were making plans to find ways to do other outings with all of us. I love getting to do things with my friends.. It is nice to have friends … School is GREAT.. plus I get to take naps and walk a track and use a timer for things.. Sunday I had another birthday party so got to BOWL again for Lucy another classmates birthday. I got a little tired and didn’t bowl as much but the cake was FABULOUS! 🙂

Brother Walker came over and helped get my hair cut .. the clippers are so relaxing and nice to get a trim before the big trip . Hoping when we get this done I will be able to stand on my vibration plate without my ears itching .
Miss Hilary has been trying to help me with new sounds but I like to tease and steal markers and write on her desk. She always has some really neat games , I love it when they go flying . Miss Elizabeth and I have been working on me learning to ride a bike. I am starting to be able to pedal better if I could learn to steer I’ve got it. It’s not like driving the fire truck or car to end of driveway. Love learning new things sad I won’t see everyone for a few weeks but we are getting to go in a big road trip and see new things . We haven’t been able to travel to do much in a long time but getting to travel to my appt will be a nice experience and I get to get some new states !!!

My journey and trip day is finally here . Mummy loaded forever as always she packs the whole house. She packed my Buc-ee and new surgery shirt for my trip.
We left in the afternoon and stopped to see Auntie Shelsea and auntie Victoria and all the She Will Sisters they fed mummy and prayed for me ! And then prayed for others there . I loved it a lot and being in the middle was so exciting. After about an hour we got back in the road .. and mummy took me to Buc-ees and I got surgery Buc-ee and Easter Buc-ee. Delaney had everyone sign my shirt for me. My friend Dane was traveling setting up another Buc-ee store so he couldn’t be there but mummy said I would see him on our next trip in a few weeks. Next we got to driving and our first state after Tennessee was Virginia. We were in Virgina soooo long I decided I would sleep bc it was not ending and no Buc-ees. The bathrooms were terrible , Mummy was having to clean every single one before I could go to the bathroom. Finally we started doing the state road side parks they were way cleaner but still not Buc-ees. Now I see why she stopped there on our Texas trips . If all other places are as gross as where we were I totally see why Mummy didn’t stop at any place but Buc-ees in TEXAS. We finally got out of Virginia and it was getting daylight finally and we crossed over West Virginia , Maryland and then into Pennsylvania. Mummy was super sleepy so we stopped at the rest area and walked around and she sat for a few min to rest and then back on the road over into New Jersey and oh wow she got stuck into some major traffic couldn’t get over and was stuck I thought it was soooo funny . I love traffic it’s funny . We stopped for gas in New Jersey and mummy was going to pump but apparently they aren’t allowed out or able to pump in New Jersey so a guy came and pumped her gas ⛽️ for her was so strange . But back on the road and across a big crowded bridge into New York. Mummy said she never wanted to drive in NYC but there she was like a pro making it thru as I laughed at the traffic and at her for talking to people who honestly can not hear her. Other people were honking , screaming and throwing their hands out and up. It was quiet comical to watch adults act like total idiots . After New York we got into Connecticut … that was my first time there . Lots to see . Finally Massachusetts almost to Boston . Got there and mummy was upset and tired and they said they didn’t have our reservation somehow they got it fixed and we went to get our stuff and no matter how it was loaded it fell off . She was very off her game and so I tried to be helpful and laughed when it fell off instead of getting upset . Everytime I laugh she can’t help but laugh. A really nice guy helped us load it back up and get us into the elevator and then when getting off a couple was like oh wow you need some help and helped us to our room. God sent her angels to help bc she was at her end !!! And of course I had so many naps I was ready to play. We got settled and went down to eat . Noodles everywhere loved it . Got me some noodles and orange chicken. I enjoyed eating back at the Asian place .. I like seeing our silly fortunes 🥠.. Tuesday we had to go to the hospital and get my height , weight , and I had to give blood . Everyone sends a crowd of people in for blood work …. I don’t need an audience . I know I’m awesome and know watching me being cute and silly is fun but an audience for blood work is so weird . It’s a baby needle and super cool to watch it come out . I just let them get it and go in. As long as they leave me some for me I’m all good sharing . The nurses said I was the easiest kid ever for blood.
After they finished all their stuff and got their technical issues sorted we had to go for a Covid test . Yuck! Why they didn’t do it when they were doing the other stuff I have no clue. Mummy let me go to the gift shop and I got a firetruck before the Covid test We walked Down into a parking lot in the garage and that is where they had me sit outside in the parking garage in a chair to do the Covid test. That is where you park a vehicle not take test but ok whatever they say we will just go with the flow. Got back to the hotel and had lunch at the grill. It’s cool bc I eat free and get free dessert!!! After lunch auntie Shelsea arrived and we went for an evening walk and played with the geese and walked along where a lot of really nice schools were including Harvard Medical school! Mummy said that is where the best of the best go and the hospital doing my surgery was part of that. She said I’m in the best place in the US for surgery. We walked around some more and had dinner and then walked back of course with those two taking more pictures . I just said cheeeeeesssseee and made them smile and laugh knowing my cuteness would make them laugh. Back to the room and eat eat eat bc I can’t eat after midnight they said .

Surgery day!!!!
We rushed over to to the hospital , got my vitals put me in tiger pajamas and we waited . Of course mummy and auntie Shelsea wanted more pictures . They came in and Dr Shearer explained everything to mummy again. He’s super nice . He told me he would fix my ears so they would stop hurting . Please please fix them. Back I went I was a little confused mummy always goes everywhere with me . She explained but I still was a little confused . Surgery Buc-ee went back with me to surgery and helped hold my nebulizer . Dr Shearer and the other doctors and nurses all signed my shirt too. When I got finished and woke up Mummy and auntie Shelsea were sitting there waiting. I was hurting and very confused . Mummy just sat there held my hand . My nurse Deanna was super nice and caring . We moved over to a room for overnight and had nurse Sarah she was nice too. I had some super nice caring nurses and they also signed my shirt and took great care of me and made sure I had pain meds and got me pancakes !
Mummy got me noodles from Maggianos and raviolis . I love I can have all the jello I want. Still hate ice cream!!! Mummy said my breath smells terrible I am brushing promise !!! They said it’s normal. Zoe from the Kleefstra clinic came to visit me and brought me a card . I took pictures with her and cheesed . We got back to the hotel and the medicines make me sleeping so I rested a lot. Mummy even took naps with me she was exhausted too. And auntie Shelsea helped mummy and loved on me. I loved spending time with her.
She left later the evening after my surgery and mummy and I spend a few more days to make sure I didn’t have issues and there was some medicine the hospital had to order that I needed before we could leave. After everything was sorted and my script was filled . we checked out of hotel told Miss Giselle bye and we were back on the road again to see more states and sites . Detours took us a little time to get out of Boston … but got onto the interstate and saw Massachusetts during the day… on into Connecticut and the rain came in yuck!!! Makes it where I can’t see all the traffic as well… but does mean I get to go to car wash eventually !!! I love the car wash. Next New York and we stopped at a service stop to get gas and go potty…. Lovely nasty bathrooms. Can’t get back to Buc-ee country fast enough. But mummy wanted gas before New Jersey so she didn’t have to wait for someone to pump for her: New York we had to deal with the the traffic , tolls and George Washington bridge . We did the lower level. It was so neat . I was enjoying the traffic again laughing at the silliness . Got into Jersey and then Delaware (again a new state). Yay. Got to Maryland and went to My Great Aunt Michele house and Uncle James. We hung out there I ate a lot of jello, oatmeal and she made mummy dinner too. It was fun hanging out and Uncle James let me play his iPad. The next am my great grandpa came to see me. So glad I got to see him he is 87 years old! And still drives .
Afterward we got back in the road and went to Washington DC then into Virginia and west virgina then Kentucky and guess what is in Kentucky! BUC-EE!!! Yay! I was so happy to see my beaver !!! I had never been to that one so we got Kentucky Buc-ee for my collection and got me some blueberry muffins to eat ! Got me a new therapy roller with Buc-ee on it too. After we got done the next state was Tennessee!! Yay almost home! Officially have been to 27 states and 5 countries !!! Mummy said she’ll update on the medical stuff !!! I was groggy and sedated so can’t really update on that side !!! The medicine version might be a bit weird!!

Love you all Liam