10 years 11 months

10 years 11 months Road trip to see family. Always exciting b/c I get to stop at Buc-ees on the route.. Since they opened one in Virginia I now have 3 on my way to Maryland to see my family there.
We arrived in Maryland on Saturday early am and went over to my Aunt Michele & Uncle James house and got settled in . We had a Crab party with some of their friends met Debbi and Bob and Eric (Mr Wise). Guess because he is wise and of course fun….I had chicken and veg and let them get all messy with the shelled fish… Mum isn’t sure if I can eat it and I honestly think it looks kind of interesting so don’t really want to eat it…. Sunday we went over and saw my Great Grandpa Tommy and hung out. We had a big lunch.. of course seafood we are by the ocean and fish seems To be the main course here…. We got back to the house and hung out and did fireworks with them and the kids next door watched from the back yard.. I loved watching them shoot out.. Monday we went and saw Grandpa and then Hibachi with Aunt Michele…. It was good and I truly enjoyed watching them cook… The fire makes me pull back and make silly faces they said but it is neat… THE food is sooo good.. Uncle James has a sense of humor and I love picking on him and making him stay alert.. I rearranged his medicine cabinet and moved some pictures around to see if he would notice.. I had him laughing.. they tried to play a joke on me and opened all the cabinet doors but joke back on them b/c I showed them whatever that is ok.. I will just go back in here and play on the recliner or the rocking chair b/c that is just not something I want to deal with.. They left it all night and think it bothered them more than me b/c they finally closed that mess up…

We went to the school where Aunt Michele works and all her kids colored me a Bucee sheet and had a big pizza party for me. They had a sign welcoming me , with purple everywhere… it was sooo cool.. I got some of the kids to rub my back… I am so good at making people do things for me….
After we left the school we went by and mum needed to do an update on her computer.. She got it done and we took pictures with BEA & George.. Always a State Farm journey… and headed back to the house to have dinner with Uncle James and Aunt Michele … Mum is still working on the trip so we do most things in the afternoon when she is off. While she works I rock in the rocking chair on the front sunroom and find ways to irritate uncle James.. :). it is my job as an amazing Nephew….

The last day we went and saw Grandpa again and had lunch at a dinner.. he showed us the finished basement at the house and all the neat things he has done over the years.. He is amazing.. he has pictures of my GREAT GREAT GREAT Grandparents from like 1905…. Things looked so different back then….

We got up early but not super early and headed out to go up to Boston and get settled for the appointments coming. We stopped and saw my Kleefstra sister Monica on the way up.. she lives in Pennsylvania.. Mum likes to meet and stop a little to visit and get us out of the car but always make meaningful visits as she says… :). Not just gas station stops we get to see people who mean a lot to us..

We arrived later in the evening in Boston.. The rain hasn’t hit us yet it was a nice drive.. WE went to Market Basket first and got my EGG. I was adamant to go there and get the EGG I had been asking for days… So glad to be here.. mum got us some drinks and snacks for the stay so we had a little something …. We got to the hotel and unloading was a lot for mum and I honestly was looking around and didn’t help much.. . She got it.. She is strong and able… Even though she told me to stay with her and pay attention a million times.. They put us on the 8th floor I loved it a lot…. I got to watch going up the glass elevator.. mum looked at the door I looked out the window.,. I am not scared of heights she doesn’t like elevators already and that really made her want to look the other way.. We were too far up for stairs this time mum…

Sunday we got up and drove to Rhode Island to see my Auntie Danielle and Uncle Kurtis and My Kleefstra Sister Ava and family.. they were having a celebration for Danielle Birthday so we went and partied with them.. you know I am anywhere there is CAKE!!!!!! I bought a cake at the store b/c it is my birthday month and I wanted cake cake and more cake.. I played in the Recliners and Kurtis helped me eat.. I suckered him into feeding me.. I am soooooo convincing … his dad and Step mum are super sweet.. I felt very relaxed and at home with all of them…. It was raining so it was not a pleasant drive back th the city and a ballgame let out so traffic was horrible but our visit in Rhode Island was worth the traffic to see our friends:)

Boston Day 1 Dr Sid 1st appt …. Neurology.. he is the Kleefstra Neurologist and he did a lot of note taking and then checked me out… Told me I was doing GREAT…. When we were finished with this appt we had a little wait so we went to the cafeteria and ate some breakfast since I didn’t eat before we left b/c traffic is a little nuts around here so we left early for our 8am appt.. mum even went to the wrong facility and realized that Dr. Sid moved us to the main hospital b/c we had another appt there.. she was thinking it was where we normally went….

After we Finished eating we went back up to the GI floor to get ready for my 2nd appt with my sweet Dr. Ballal , she is amazing and truly trying to help my gut feel better…. She has helped me get somewhat regulated .. Guess If I would lay off some the yummy things I sneak might help too…. She looked me over, felt my tummy and talked to us for a bit to get a game plan for the upcoming scope she was doing.. I played my game while they talked.. I was done with my part minus the yearly picture….

We tried to see our Friend Karen and Kleefstra Brother Clyde but they were still in appts and I couldn’t catch up with them at lunch so we were going to catch up after appts.

We went back to Waltham for our 3rd appt of the day…. DR KATZ… she is soooo fun… I have seen her for a while and she always has games and things cool to do.. this time mum let me go alone at first so we could chat without mum answering all the questions.. Mum came in for the end of the appt , they discussed…. WELL ME of course… and all I have done for the last 6 months since chatting on Telehealth… you know they are hilarious… they said I am in puberty whatever in the world that means..

If it means I listen to music and want to be left alone some well guess I am in puberty but honestly I always like hanging by myself and listening to music.. my mum loves music and she said my GRANDPOP was a big music person as well… Guess that is why I love music therapy so much…

After all of my appointments and pictures with everyone we went back into Boston and wen to see Karen and Clyde… The Caseys are sooo laid back and allowed me to be my typically new nosey self.. I am into the exploring phase of my life… I explore to learn…. I got to meet my kleefstra Brother Clyde we are very close in age … he was really tired but did get up long enough for us to take a picture together… They were leaving the next day so we wanted to see them before they headed back to chattanooga… yes we both live in Tennessee but had to actually meet in Boston… WEIRD how that works out… But we all connected especially Karen and Mum so sure it will be road trip there soon…

Day 2 Kleefstra Natural history study-Sophia, Alexis , Mya , Caitlyn ,…..We headed to Boston 1 1/.2 to go 9 miles but mum was pretty calm and collected for the traffic Jams .. we got there and hung out with the whole team.. it was so cool .. they asked a lot of questions.. I was starting to get board so they took me into the hall to hop and run around… I even got to take off my socks… I was having fun playing around… They took pictures of my hands, feet , face, ears .. Guess they want to see how I change.. They even videoed me walking to see if I walk the same next year I guess…. I got to see Mya for the EEG wet cap.. ugh. Not my favorite to have on my head but I hung out and held Sophia hand and watched the movie as mum and Mya sat outside FIANLLY we got to my favorite part… Blood work… yes. I love blood work… They took all 15 tubes it seemed liked and realized they needed two more but I was pretty hungry and little pale so decided to wait for the next day which was fine since I don’t mind it..

We headed back and instead of going out to eat we ordered in tonight… I got raviolis and mum got lasagna it was not the best she didn’t eat much but I enjoyed the bread…. I ended up taking a nap I was soooo tired I got enough and honestly was ready for a shower and bed….. Aunt Misty is coming tomorrow and I am sooooooo excited…

Took nap and we decided to eat at the hotel tonight b/c neither of us wanted to really leave again….

Day 3 Natural History study kleefstra Sophia met us and Caitlyn and Alexis came by as well… They all wanted to hang out the few days I was around…. We tried to do blood work but they couldn’t do it that morning.. So we went to do the other part.. I met Izzy and she played with me while mum answered some questions for her…. Later mum came in and she was watching what they were doing with me.. I was playing and interacting with toys and pretending with her …. After we were finished Mya brought her the picture of me with the WET CAP. It is ridiculous and my face tells you all you need to know but mum likes to save goofy things like that to show how much I change over the years… We went to do blood work at the end and they were going to send someone else to help and I was like I have this I can do it myself come on y’all you don’t need help … I am good at this….

We had one more appt today with Dr. Hsea in another place … it is a place I had not been.. we had some time before the appt but we got there and went to the cafeteria and ate while we relaxed and waited… We went upstairs and I was able to finally get her to check my ears… they are of course filled with fluid like I had been telling them but nobody ever listens to me…. fI took a picture with her and she put notes in for Dr. Shearer to check my cleft at the procedure next week….

EXCITED .. AUNT Misty should be here anytime…… Finally she arrived I was very silly and giggled … she was copying my eyes and I would cough at her… WE loaded up and went to have pizza at our favorite place in town it was good… we all must have been hungry b/c we ate a lot…

Day 4 — Got up early to deal with the fantastic Boston Traffic.. Seems like the only good time is leaving at 6 :45 for an 8am appt b/c 9am and 10 am are still a very slow inching traffic situation …. I could literally walk to my appt faster than we drive …. We had Dr Amber.. I love her she always has a lot of energy.. Although the last time I tricked her she figured me out for this one .. She had two Fellows helping they were super fun… it was interesting to have them with us.. they asked a lot of questions for mum and then mum and Misty went to wait while I did testing and played some.. I came out for two breaks but I was really working to do what was needed….
Dr Amber (Graham) Fellows - Parker & Yves

Day 5 - FINALLY medical BREAK. We headed to Maine for a few days to go see some trolls… it was like hunting paddington but this time it was BIG trolls … We stopped and took pictures by the Ocean and went to eat at one of our favorite places along the way…. We explored and drove off the main highway to see some of the scenery … Aunt Misty was taking a million pictures.. I see why her and mummy are best friends.. good lord they are a like with the camera… I wanted to sit by her everywhere b/c I never get to see her… and I like to make her laugh with the silly things I do… she thinks I am hilarious… I should grow up and be a comedian… :)

When we arrived at the campsite.. we had to wash clothes… they had a nice laundromat there where we could make puzzles.. Aunt Misty did the puzzle I shopped on Amazon…. We got up the next morning went to McDonalds it was an old house and was very interesting but same food… We went to LL Bean and realized really quickly it was way tooooooo expensive to spend too much time in so we went to a few other places in town and I found some neat books, and a hamster I wanted…. We went to the Whoopi Pie shop that was an experience… never seen so many flavors… I like the regular ones but the mini chocolate are really good…. I don’t eat them like mum and Aunt Misty they love them more than me.. I like my ding dongs…. WE left Freeport and went to Boothbay to find the Trolls. we hiked and looked all over and found 5 BIG trolls.. Afterward we went back to Freeport and we found a British store… Jaffa Cakes… yay… Chocolate Buttons yay….. so yummy…… Daddy said hope you bring some home.. we told him we would try but no promises… We went to eat at a pub behind the store and of course I had fish and chips… I sat with my Aunt Misty b/c I never see her.. I kept her laughing the whole time.. I was very silly…. We went back to our little campsite and chilled the rest of the evening…. The next am we walked over the campsite did hop scotch, went and I watched Aunt Misty and mum play air hockey it was funny …. Went to the little store and there were two awesome people there Robert and Brodwynn they are from the UK … So awesome to meet them.. Hope we get to go back to the campsite and hang out again.. they are only there for the summer and going back to the UK…. AND the fun for the weekend comes to and end.. nice to get a break from the hospital visits..

Monday back to life as they say. Mom worked and we went to have Mexican(!!!!) in Waltham “New England “for lunch ! Aunt Misty and Mum are crazy! The food was good !!! AUNT MISTY TACO was as big as her face… and she ate it all… CRAZY the food is better way up and over here than it is in the southern states.. or we just don’t eat it as much anymore b/c it is everywhere so we enjoyed it not sure….. I ate chips and tortillas.. if you can make a good tortilla I am happy….. We went to Market basket and I got another 3 eggs.. Mum has allowed me to get eggs for appts something to reward me for all of the medical appointments… Although I enjoy my doctors they are all pretty amazing… .

Tuesday. I had to get a vitamin K infusion for my procedure . Mum and Aunt Misty came with me… it wasn’t all that bad.. I was good as always and showed the nurse where I wanted it.. needles don’t bother me.. I am a big kid… much braver than mum…. We were done pretty quickly and met up with Danielle and Ava.. We all went and had lunch and Danielle brought me all these super cool patches from Rhode Island.. she is still trying to find me more for my patch collection , Danielle also brought me my favorite NOODLES.. she works for a Asian Restaurant… that is my kind of job right there all the noodles my heart desires.. She is the best… I love them..Ava My Kleefstra sister is really cool as well.. She talks better than me.. But seems most of the girls do… After we hung out of course mum and Danielle took pics and we headed out and Ava had appt with one of our doctors …. We went to Market basket afterward to get me some eggs for having to get an infusion… I know I have too many but they don’t cost a lot and they truly are cool… we went to Home Depot afterward and looked around … they have all kinds of cool dancing toys.. I got a new one for my collection and to drive mum crazy going home… Also found Hilary something cool.,.. GRINCH is out yay…. Back to the room I am sooo tired and ready to rest some… We ended up getting the flat bread pizza later than evening so we didn’t have to leave again… we were all slowing down….

Wednesday - procedure day…. I had to bet at the hospital at 10:30 - I can’t eat and that is the worst… Mum let me play my game and stay up late so I could sleep in and not feel the horrible hunger pains.. Her and Aunt Misty didn’t eat since I couldn’t eat.. Aunt Misty is leaving today I am sad about that but she went with us to the hospital for me to get checked in and her to see me up until almost going back… I was scheduled for 12:05 and she had to be at the airport at 12:30 so she left a little earlier to make it to check in on time.. Before she left she cried… I didn’t b/c typically I just don’t cry about much.. But I was really sad she was leaving we all have a great time and laugh a lot when we are all together…. My habit of coughing at her isn’t so smart for others… they don’t laugh like her when I act silly…. I miss her when she leaves she is funny… Misty, Mum and Liam time is the best… They came in and asked a lot of questions and explained things.. they asked if I would allow them to give me an IV and I just showed them where to put it… they always act so amazed that I don’t get freaked out.. good grief it is ok… They gave me the IV and said it would make things easier when they have to give me the sleep medicine…. I was like whatever lets get moving already… ready to hear …. Not sure about a biopsy and them removing part of my esophagus but we shall see what this will do.. hopefully I can still have bread.. last time they said that I was ok.. but gluten is pretty much something I really enjoy…. So they asked if I would be ok going back with them… I looked and mum gave my I love you and hugs and went with my team that I do trust I feel a lot better with this team than the ENT team at home that truly doesn’t tell my mum much and last procedure I was really made to feel like I was unable to communicate or like they didn’t care about me as much as my Boston team.. NOW the Pulmonary team in Vandy is amazing.. Dr. Thomas and Dr Lana are the best…. It is just my ENT. He always makes us wait hours for appts and is horrible at telling mum things.. he is also the reason I had NO hearing for 4 years by ignoring my mum and making her feel stupid for begging for the procedure.. WAs glad mum took me for a second opinion in Boston and my ENT team was able to get me some hearing and first time ever to pass a hearing test… Amazing how people sound when you aren’t full of fluid .. I was hearing like I was under water .. Boston ENT, DR SHEARER .. Said I would have issues probably most of my life with fluid and my ears.. Not what I wanted to hear, but super glad to have a doctor that cares about me as a person and not a text book… ANYWAY back to the procedure… I was wheeled down the hall and mum watched… She went to the waiting room to wait on me…. (Sure she got a snack but It is ok… ) I was asleep before I knew it.. Crazy how you just wake up and don’t remember anything…. I woke up and mum was sitting there waiting on me as always…. I instantly told my sweet nurse I wanted the IV out and I was ready to leave and get TEA…. She told me I needed to wake up a little more and I was like ma’am I am awake… discharge please….. We got out finally and of course I went to the store at the hospital and had mum buy me a loud COW!!! ( typically easier to get things when you had to do things like I just did). We left afterwards and went to Market basket and got me more eggs… Got a few things to take on the road trip home and back to the hotel to get some rest.. I was still sleepy.. We ended up ordering the flat bread pizza again for dinner.. honestly I ate but wasn’t as hungry as I thought… mum finished packing and organizing our things for us to get up the next morning and go to my last few appts before hitting the road…. (Aunt Misty helped mum load most stuff before she left which will hopefully keep me from making a million trips from the 8th floor)

Thursday - mum worked as she did most of the trip early am while I slept in…. We got up and went down to get some breakfast before it was over and grabbed a rolling cart.. Took the car. Upstairs and I played a game and watched TV while mum loaded the cart tight so we only needed one trip down…. We went down , I sat in the car and mum played Tetris loading to make it all fit for our trip home.. .we had less going back or should have but for some reason we had to lower a seat to get it all in … mainly b/c mum doesn’t like blind spots and wanted th snacks for us to get to easier for the trip…. We took the cart back in and checked out… Went over to Childrens in Waltham for Audiology and I got to see Kate.. she is the BEST… she signs and has loads of fun energy… I was able to play games and they tested my ears.. I was wearing headphones.. I am all into headphones right now…. After we were done we said goodbye to Karen she is the best and always helps me to get all of my appts lined out…. We got on the road and had to pull over at 5:30 for Dr Pearl , my last appt he is my seizure doctor in Boston he wasn’t really excited to see me looking around .. seemed like all the doctors were concerned. But I just wanted to look up and out the side of my eyes… it is just different and interesting and for some reason I just feel like doing it and they are all so crazy about it… -After that was over we went inside the service area, got a snack, went to the bathroom , topped off the gas in the truck and headed on our way.. WE finally arrived in Niagara Fallsl where mum and I stop every year for a picture…. We took our picture it was 11:30 at night and decided we would stay over since it was so late and mum was pretty tired it has been a long few days… . We got to a hotel and there were a lot of people arriving same time as us at midnight even a big bus so took us forever to get up to our room…. - But we made it and again mum was put on the 6th floor.. These people love to put her high up but it was nice b/c the view was pretty good looking out to the water and you could see the steam from the falls. I was so tired but I wanted a bath so hopped in the bath and ready for bed….

Friday - WE got up early and went to the Maid of the Mist- WE went to the 9am ride … we were able to go to this peer thing and took a big elevator down to the bottom of the falls and got on a big party boat with a handful of people .. the boat wasn’t full but it was nice to have some room to move around. There was a nice couple and of course we took turns taking pics so we didn’t just have selfies… looking at the falls was pretty cool but then we entered what the announcer called the horseshoe falls over Canada side sort of however you divide a lake between countries but ok.. the rainbow from the falls was cool to see but the water hitting my glasses well NO THANKS .. told mum I needed a bath and change of clothes… she laughed … but glasses being wet isn’t what I signed up for.. Guess that is why she was adamant about me wearing the pink breast cancer rain poncho… glad I had it on … I would have been soaked and let me tell you we are in UP STATE New York …. It isn’t TEXAS so with that being said it was COLD it isn’t hot here …. .So wet and cool makes you Cold…. THE BOAT… decided it would go in circles in the horseshoe waterfall and it was like a down pouring rain…. It was crazy… Mum thought it was great.. I was ready to hide…. But it was over pretty quickly and the boat returned to the dock and we were off and going up the elevator… one more picture and back to the car we go… of course after I went to the store to get a token to remember this wet adventure.. Had to get dad a shirt … can’t not get him something he had to stay back at home and work…

Back on the road …. Next stop… OHIO……………………….

Traveling to OHIO can’t wait to get my hair cut with Bubba , I HAVE TEXT AND told sissy, bubba and mum a million times haircut bubba.. so excited and I get to see my nieces I miss them soooo much…. We arrived and Sissy, uncle Brad, Darley, Daisy, Bubba and Auntie Heather were all there… of course I started on my hair and Bubba said tomorrow I don’t have my stuff. Was sad but I will get it tomorrow so we will survive…. I took a shower and was kind of ready for bed but we talked to everyone and hung out … Bubba, sissy , daisy , Darley left and were coming the next day to go to Pumpkin with us and hang out.. Darley wasn’t feeling well.

Saturday- pumpkin show- Sissy and Bubba haven’t showed up but we decided to go ahead and go that was fine with me b/c I know after I get my haircut.. we looked around… got some food .. and looked at the people around and the BIG pumpkins… it was starting to get crowded.. I got me a tea and after about hour 1/2 we went back to the house … Bubba and sissy showed up and wanted to go to pumpkin show… Darley had a double ear infection… felt sorry for her b/c I know how that feels.. mum kept her and they went back to the pumpkin show… I was done.. I was watching all those crazy people on the TV no thanks too many people for me now… . I stayed behind and hung out with Auntie Heather and uncle Brad and mum got Darley to sleep… They got back and were hanging out watching Football now…. Hang out and “hurry up and wait for hair cut . Bubba walker was tired and I felt like I waited all day for him to cut my hair . But I was patient . Uncle Brad and Heather took me for dinner to help pass some time and when we got back he cut my hair and made me look good ! I love spending time with him and love him cutting my hair !! I kept saying Bubba cut hair and thank you over and over b/c I was so excited and happy he cut my hair… They headed out and we all said goodbye .. that was hard.. I really miss them… ALOT. I listened to One more light took a shower and went to bed… I know I get Buc-ee tomorrow….

Sunday- got up a little early but not tooo early… got the car loaded gave hugs to Uncle Brad and Aunt Heather and hit the road… next STOP Buc-ee’s.. glad mum got gas when we arrived I am ready to be there…. Got to Buc-ees and Grandma sent me money to spend.. Got my egg.. got me headphones with Buc-ee on them ….. we took pictures and back on the road for buc-ee number 2… out of OHIO and into Kentucky…. Buc-ee number 2…. We had a little detour on my routine b/c BUCEE was out hanging with everyone so we talked to him took pictures and then went to bathroom and got the egg and took pictures around our little spots…. Got Gas and back on the road for Bucee number 3… this is one of our favorite stores b/c DANE is here… but he was not working he was actually headed to TEXAS guess he can tell everyone hi from us there…. Missed seeing him though… Wish he was going to the new store so I could see him more…. I will see WEs though he already let us know he was ready to see me…
FINALLY the TENNESSEE state line… been a month and finally back to my state …. The new sign isn’t all that great miss my state sign that looked like my state…. This one looks like some AI generated Wild West thing.. we took a picture but it was blurry… looked better blurry than it looks y’all aren’t missing anything…

HOME!!!!!!!!!!!!! I went straight inside and checked out everything… mum unloaded… Dad helped me.. nope.. went to bathroom…. Looked around and was just happy to be home… I did help a little once the stuff came in and took to my room …. Got all my headphones around my neck and went to enjoy being home….

Lucky for me we have no school tomorrow because of teacher in service so I can sleep in…. Poor mum has to work her normal shift she didn’t get a lot of time off either early am or in evening so she could stay caught up while we were gone… this is my birthday week……

Back to school on Tuesday…. Wednesday .. Thursday… Mr. Greg birthday… Cupcakes and funday… I had horses that evening … Always excited to go and see all of the new things going on… can’t wait for the new building to be done … I talk about it all the time…

BIRTHDAY…. I had to go to school.. I am 11 I don’t want to go to school… but I went… after school had a doctor appt.. yup on my birthday.. Dr. Lana wasn’t ok with my eye movement and got another neurologist to look at me … they were concerned and sent me across the hall for leads and EEG … EEEEEEK. .. on my birthday…. Ugh... but didn’t complaint .. just took a nap instead… We left there and went to Chuys that is what I wanted.. Tortilllas for dinner on my birthday… When we finished we went over to the mall and I built me a birthday bear at build a bear and got a cookie from the cookie company.. we went home and it was kind of late and no candles so we had cake the next am.. birthday was a little off this year.. I did get a few cool presents … a new took from Lowes for my tool box and a few new dancing toys.. love my new sloth and dancing pickle… those make me laugh and I love to dance…. Dancing and music.. my favorite things….

This month has been a lot more than most but most Octobers are with our Boston follow ups.. I truly enjoyed the family time with my grandpa, and aunt and uncles..in Maryland….

Thanksgiving and then Christmas.. not far aways… thanksgiving with cousins … Love y’all

Liam

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