9 Years 4 months

I love birthdays… I love saying Happy Birthday now and .. I have been memorizing birthdays.. I love birthdays a lot.. Bubba birthday is next and I tell mummy 100 times a day Bubba happy birthday.. and then I tell her when everyone else’s is .. you can say someone name and I can tell you the month.. I am pretty good with remembering and learning!!!

I am writing more and more at school… I really don’t like to write but. I’m doing it and making everyone proud. I do get excited when people are proud of me.

WE are getting ready to go to Boston for me to have a few procedures.. I have to get a triple scope .. it is a little scary. I don’t let mummy know that b/c she will worry so I am brave but I do feel a little scared when they wheel me down to the room.. But when I wake up mummy is always right there waiting on me. And My Buc-ee always gets to go with me. I am taking something off my printer this time b/c I am making things but of course I will take my hospital Buc-ee as well…

I had to go to the bathroom at school .. I made it to potty but it was close.. I don’t typically go to the bathroom at school but this day I couldn’t hold it like normal.. I hate going to the bathroom at school …. Mummy kept me home to make sure I was ok and we got my blood work done for my procedure in Boston next week.. I am so excited I get to go to Buc-ees this weekend. I get to go to 2 in Kentucky…

I got up very quickly today mommy was saying Buc-ee day and I am so excited I could barely go to sleep. I get to go to my favorite place and see all the beavers. I started seeing the sign and kept saying BUC.-EE! I brought my Lake Jackson BUC – EE for the trip this time since that is where BUC – EE dada lives , that is home for the original BUC –EE ! He’s going to go with me for my procedure. I took a picture outside of the store, holding my hands up because I was wanting Mum to get a picture for Daddy or uncle Steven to be able to make a 3-D print for me with Buc-ee. Mummy and Uncle Steven tried hard to get my picture in Texas but I couldn’t stand still for Uncle Steven to walk around me 50 million times.. that is a long time for anyone to hold their hands up .. you try it!!! They said it was only 45 seconds but it felt like an hour or more at least… I will do it at Buc-ees in front of my beaver friend ….. I showed her I could do it everywhere but where she wanted me to.. She just laughs .. I am funny like that … After 2nd Buc-ees we got back in the car and it was time to play games b/c I had no more stops except rest stops for me to go to the bathroom.. I don’t like other stores they are nasty .. The rest areas are always nice and I can jump around a little….

We were trying to get to Wooster OH to drop my device off but they closed so we didn’t make it …. My device fell off my desk at school and broke the screen.. I don’t want to part with it but guess we will have to mail it .. Mummy said she will try to take it on our way back if we make before they close.. They close early…

We decided since we were in Ohio we would go visit and Stayed overnight with Auntie Heather… She and Brad took me to The Circleville Fire Department and I got to meet all other firefighters and see their brand new truck they had not even used yet… They took a picture with me and my Rock Buddy and gave me a cool patch for my collection…..

Brad and Heather bought me noodles from an asian place in town.. Sooooo good.. Stopping was a GREAT idea b/c I got yummy asian food.. much better than road food.. Although I like my Chicken nuggets from McDonalds … Nice b/c I get TEA!!!!

We got up early and had to fill up and the rain started… we didn’t get out early enough but honestly I was excited and couldn’t sleep therefore didn’t allow mummy much sleep.. of course when I fell asleep it was time to get up and I was not wanting to get up….

We went a different route to try it out from Circleville so we went thru more states.. it had a lot of mountains this route.. although we typically travel at night so not sure what it looks like so maybe there are mountains the other way too…. No telling.. I just like to play games and laugh at traffic. And of course we stop at the welcome centers and enjoy getting to know what states we are in.. This route I didn’t get to see Niagara Falls.. We were in Pennsylvania a LONG TIME this route… and Mummy was making new friends at every stop it seems... next was New York… Connecticut and then Massachusetts yay.. FINALLY.. I was jumping around with Joy we are almost there!

We arrived in Waltham finally… we got to the house and I took my shoes off found my Buc-ee Slippers and was sooo happy to got to my space for the week and chill!!! Mummy unloaded and we made our beds . We went out and grabbed me some dinner I wanted nuggets of course…. And then we got settled in took our baths and got some sleep…

Sunday we got up and went to the store.. it was really crowded but they had lots of amazing food.. Mummy picked up food for us for the week so I would eat better than Nuggets… and she is not big on the fast food scene.. We got a lot of groceries and of course I got some oatmeal cream pies .. have to have my cream pies!! I was putting things in when she wasn’t looking… She never notices until we get to check out and well then it is too late..

Back to the house so I can relax.. it has been a long weekend in the car.. Although I love road trips.. Most trips always have a Buc-ees… glad I get two coming and two going home…

Got up early Monday and mummy had breakfast already ready for me .. Today I had to go to see the Audiologist to make sure I was still passing my hearing test.. She was really nice and I love playing games… Although I keep looking for the teddy bears to light up .. They don’t do that as often for me now.. Guess b/c I am older and Boston doesn’t have the boxes like Vandy does for the Bears.. they have lots of other things and it is fun to play the games.. After Audiology I got to see Dr Katz.. I love love love her!! She is so kind and sweet.. She asks me to do things like squeeze her hand and wants to see what all I know.. I know a lot … But sharing and showing people well.. I don’t like to brag about my intelligence so I just play people sometimes.. But Dr. Katz sees through my silliness.. She is amazing!!! When we were leaving there was one my my new Kleefstra Sisters waiting to be seen and I got to meet her.. her mummy gave my mummy a hug.. My mom makes friends a little too quickly.. She said Liam she is your kleefstra sister we are all family.. She was very cute… Wish I could have spent a little more time getting to know them but they had an appt and we had another at the main hospital.. We left there and headed to Boston to see the Hematologist- This is going to be my favorite… well I thought it was, but they didn’t take blood so I was a little disappointed.. Blood work is one of my favorite things .. They put this thing in my. Arm and my blood comes out .. I think it is sooo funny to watch it.. The only part I don’t like is a bandaid.. those things are like stickers and I hate them.. please just wrap me and mummy will take off at the car… But no blood work :( She was super nice liked her a lot better than the one I had to see at Vandy.. She explained what a Factor 7 was to mummy .. apparently it is a rare blood disorder I have . Leave it to me to be Totally rare!! But it is what makes me special. We headed back home after this appt and mummy made us both dinner from what she got from the store.. I can’t take my vitamins b/c I have a procedure so I have to eat very good!!! She even gave me prunes.. haha. They were not so bad…

Tuesday- procedure with Dr Hseu, DR Tracy (filled in for Dr Ballal, ). Dr Rollins Pulmonologist since Dr Thomas couldn’t come .. I love Dr. Thomas a lot but Dr. Rollins and everyone at Boston is always amazing.. they always talk to me and tell me all of the things they are going to do. Lots of people kept coming in to meet me and Buc-ee…. After they all came to meet us and have mummy sign paperwork the pain doctor came in (not that I feel pain) but he said he had to put in an IV and asked if I needed to have it done after I went to sleep and mummy was like no … I showed him where I wanted it and he used this thing that helped them locate a vein.. I showed him where it was but he said he wanted to be sure. They put this thing on top of my arm it made a popping sound and the iv was in .. wasn’t like when they pull blood. But I just watched didn’t even jump or flinch I am not scared of that kind of thing like mummy she is a baby and hates needles.. I am fascinated with it.. After that we all walked down the hall… well I rode down the hall.. mummy prayed with me and told me she was going to wait in the waiting room for me while I took a little nap. I woke up and was soooo thirsty and wanted TEA… Bucee was with me the whole time and mummy was standing there when I opened my eyes.. they said I had to drink before they would let me leave and they had no TEA so had to have juice..not my favorite but if it gets me out the door ok!!! Got in a wheel chair and quickly said bye bye!!! No delay there and we went downstairs to get medicine at CVS and the gift shop so I could get chocolate rabbits .. Because it is almost easter and I can find them right now… Cheaper than AMAZON… We left and I told Mummy I wanted TEA so we went to McDonalds.. Also wanted nuggets although she said I shouldn’t eat that but she bought it b/c I demanded that is what I wanted… I ate all 10 of those.. I was starving had not eaten in 24 hours … remember I don’t feel pain like everyone else and I was hungry… after I ate I went and got in bed.. I didn’t want a bath today. I just wanted to lay down … I was tired, dizzy and just wanted to play my game and have some peace and quiet..

Wednesday-breakday - today was a day that I did NOTHING.. literally.. Mummy made food at the house and we stayed in so I could rest for my big brain test tomorrow.. I played games, and asked mummy about my black bear over and over bc it was funny.. I knew it was coming in or was at the house.. she FaceTimed daddy and asked him to show me the black bear. So I know it is there. But I am still going to ask about it and tell mummy I want 2 Buc-ees on the way home… Buc-ees is my reward for being good.. Although she takes me on any road trip and will find one b/c she knows I love them so much….

Thursday- Amber -cognitive test /Neuropsych. Testing .- WE got up super early today to go to Boston Childrens for my testing . I met Amber Mummy talked to her for a little bit and then she went to the lobby while I got to play games and do learning… I did a lot with her and told her my talker died so she went to show mummy , it didn’t really die.. I just wanted to see where mummy was.. After she showed her I tricked her we went back to finish the testing.. it took a long time but I did it .. and participated.. it was like being in school but a little different .. When we got finished we went and parked and walked over to the Inn and ate at the Inn at Longwood’s grill to pass some time before my swallow study at the main hospital.. I made friends with Jason and Maria they have been at the grill for as long as I have been coming to Boston , they said longer but I remembered them. They talked to us and brought me all kinds of tea and goodies while we waited.. After a while we walked over to childrens and got checked in .. Mummy and I sat and played games we had a little wait b/c we were early and they were running late.. I love swallow studies though it is really neat to watch my food go down on the screen. I ate my oatmeal cream pie that they always ruin with that nasty stuff.. they tried to give the rest to me after and I wasn’t falling for it.. trash it and give me one in the wrapper…. I drank the juice and we were done in about 10 min if that long. Afterward mummy looked at the time and said let’s run we have to get out of Boston before 5…. She made it and we got back to the house before all the traffic got nuts… We chilled out it has been a very long day today… I took a bath and went to my bed area and desk and played Minecraft ..

Friday- Dr Sid , Dr Shearer and Teresa and my Karen- Got up this am and had appt with my neurologist on Telehealth he had to move to Telehealth b/c he had to be out of town unexpectedly…. I made sure I said hi and visited for a bit but then I went to do my thing and let mummy answer the questions. We had breakfast at the house and then we went to see Dr. Shearer and I got to see Miss Karen who I truly love.. she is always so sweet and makes sure to always greet me and give me a hug. Theresa.. and Dr. shearer checked my ears and said they looked good .. Wanted me to do drops a few more days for the blood in one side. They discussed something more permanent at a later date but these tubes are supposed to last a lot longer than the other ones they had put in .. We left here and went to Boston Children again.. .mummy went over and got me McDonalds so I could have nuggets and tea before hospital food for a few days.. Got to Childrens and went to cafeteria to eat and people were loving my Buc-ee guess they had never seen a BEAVER… They are really missing out up here!! They were finally ready for me and we got our badge so the elevator would take us up to the floor we needed. You have to have a badge or the elevator light won’t light up to go to the floor you need. We got up there and checked in.. The nurse was sooo sweet… and the techs came in and put all the wires on my head.. I just laid there for them to put all of this stuff on my head again.. so annoying to have all those wires and wrap on my head .. I look ridiculous…. Mummy took pictures.. of course.. I would look at myself in bathroom mirror and was not impressed.. But at least they didn’t super glue them like Vandy does… Dr Carozza came by and saw me .. I was surprised but yet excited to have my neurologist since day one with my Boston Team now.. He left Vandy.. I still have Dr. Reddy there but I love Dr. Carozza..
I had quite a few nurses over the weekend but Courtney and Annalissa hung around a little longer .. there was one I had two days and I didn’t write her name down but she was so sweet and I took a picture with her.. :) I do like they let me sleep in Boston and don’t come in and out all night…. My blood pressure was a little high and so they had to start taking it manually but still allowed me to sleep overnight and let me rest.. Dr. Carozza came by again and said everything looked really good. I was super glad to hear that b/c I won’t have to do this again for a while.. it isn’t bad just annoying to have all that on my head!!!

We left and went back to our room and mummy started packing and I took a bath to get the rest of this stuff out of my hair although the lady at Childrens massaged my head and washed my hair really good to help.. I took a bath there but wanted a real one at the house with my soaps…

Jill came down and hung out with me for a little while she is so sweet.. I love her!!! She went out and got me fish and chips for dinner and brought mummy some chili and refused to let us pay her back.. said it was her treat to treat us… they offered to help mummy load too.. She brought me a Bentley soccer shirt too!!! So excited… I finally went to bed around 11:30 …

Mummy went to bed after me so we didn’t get up as early as she had planned to leave for home b/c she was tired. We left about 7am and she grabbed me breakfast and we were on the road home.. Buc-ee bound..

I did really good coming up in underwear… and I am in my big boy underwear going home!! I have this … I even held it until she could get somewhere.. I am learning .. I definitely know I don’t like to be wet and realize I better wait or I will be miserable until we get there and then embarrassed to have to go inside like that to change somewhere…. She tries to help me change in car but it is so hard b/c my head hits the ceiling now.. I am so tall… so I will hold it…

We drove for a long time and finally got to Niagra Falls… Mummy and my stopping place… we went and the water was moving very fast!!! It was nuts… the wind literally almost knocked me down . I was having a hard time walking… I went inside they are normally not open when we arrive but they were today and I got a bear for me to make at home and got a shirt. And of course Grandma another puzzle b/c she loves them like me.

We got back on our route home and of course the device place was closed again so we have to mail my device.. they close early and even without stops would not have made it to get it fixed.

There as a big place just off the road where they filmed a famous movie and we stopped and took pictures and looked at it.. it was getting dark and that place looked al little well haunted… apparently it was a prison of some sort… it is called the OHIO. STATE REFORMATORY…

Next stop is Buc-ees and not just one but we are going to TWO!!!!!! We stopped at Richmond Kentucky first .. and I am not taking a nap I am staying awake until I get there… I can do this and will keep mummy laughing and company on the trip… I am a silly boy and do all sorts of things to make her laugh.. At Buc-ees this time I wanted her in the pictures with me so we both took pictures in front of the truck … I didn’t want just me I grabbed her hand and made her take it with me . She is rarely in pictures b/c she is always taking them…

I got some new swim suits and house shoes from Buc-ees .. rare to find things I don’t have and needed the swim stuff for swim on Saturdays.

We detoured and mummy took me to the Crossville Buc-ees instead of the other one in Kentucky.. it was nice to go back to the one that gave me a staff shirt… hate I didn’t get to see Wes or Dane or Ashley… Dane is in Kentucky but wasn’t in when we were there..

On the road the last part of our trip … we had to get gas again and bathroom again… and then finally we pulled into the house.. whew that was a long 24 hour drive but we made it safely .. Glad to be home .. mummy is tired and unloading .. I am running around saying hi to my bucee and daddy was in basement watching as we backed in.. guess he missed me ..

Mummy and I went and took a nap.. I slept for about 2 hours and mummy for about 4 and she got up and finished some work since she got home later than planned.. and she was grumpy and was ready for bed that night.. I am not grumpy with a few days of no sleep but mums need sleep ..

Wednesday we got up and I went to school… not sure I was ready to go back to school… but we are back to life….

Thursday Daddy got me to bed and mummy went to the airport and got Auntie Shandy!! She had something for work in Nashville and came in a day early to see me!!! So excited to see her tomorrow…. I got up and Shandy was asleep and I had to go to school :(. But She came with daddy and mummy to pick me up at school we went to sweet Charlotte and looked around.. Daisy was with us as well… and we got popcorn and food. For me and daisy… Afterward we went and got Banana pudding at the bbq place in town as well.. showing her the locals.. went back to the house and hung out for a while. Daisy, daddy and me made things in the basement… Shandy had to go back to Nashville and I had to tell her good bye but so glad I got to see her.. I showed her all my stuff I make!!! Everyone wants Liam Rock Buddies and Shrocks..

We went to Daisy Ball game Saturday.. I was not impressed ONLY because it was raining.. watching daisy be silly on the field is funny and I don’t mind that…. I do love hanging out with Bubba!!! And Sissy!!! We left after Daisy had a home run b/c of the rain…

WE went to church and I was a little off but I went to the front and showed Sis Blunt who needed prayer … I was ready to go afterwards I was really hungry.. we went and had Mexican with sissy and daisy.. I got fish it was good… and veggies and daisy fed me … she seems to like to feed me so I humor her b/c it spares me figuring it out!!!

Back to horses … truly missed Toby…. I love Toby hopefully I will keep him as we move on… he and I are a lot alike!! Both chill and laid back…

Music - I still won’t allow mummy back that is my time with Miss Kate and I have sooo much fun dancing, singing, laughing with her…

I Went to swim and love my instructor she has been working with me on tummy, back and trying to get me to put my head in water. I hope we get to continue mummy said there is only one more left after this one and I hope I get to do it more..

Mummy was working on the basement cleaning up and using the blower to get junk out off the floor and walls.. she was teaching me how to use it .. I thought it was funny and loved helping …. But when I was done helping I was serious ready to go hang out on my own .. but I did check in with her to make sure she was ok throughout the day .. like she does me… :)

Ended out the month starting Pals Bowling.. Mondays will be busy for the next 6 weeks. School, then speech, OT , PT and bowling!!! Then home.. I will be tired or should I say my parents will be.. It takes a lot to make me tired… Jack is going to be on my team again.. and Bree and Davina are on team right next to me … so all my friends are there.

This month was full of medical and travel… I am always up to something and don’t ever have a boring normal life .. BUT what is normal.. This is normal for me even though it doesn’t seem normal to others …. I don’t complain.. it is all I know!

if you have Buc-ees and support life is good.. :) got to go to 4 Buc-ees this month and get another in two weeks for the Kleefstra BBQ … so life is good ..

Love you all..

Liam Love you all. Liam www.runwithliam.org Facebook: Run with Liam (group) Insta: Kleefstra Run with Liam Tik Tok: Kleefstra Run with Liam

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