9 years 11 months

Have Music on Tuesday and I love miss Kate .. we learn so much together and I love all the music and dancing.. it is so much fun. We had to go to the dealership after music today to get mummy truck serviced for our trip to Boston …. After the truck was done , I had to go to swim tonight… Gavin is on my swim group so I have my best friend but both of us have been acting weird and don’t want to get into the pool. I swam at Vanderbilt but something is different here and I am not liking getting into the pool. I don’t want to do what they are asking me to do I want to either be out of the pool or against the wall. I can stand but dont’ care… The pool is very small and the space is very loud and I really just am not sure if I like it. But Mum makes me try. It is only 30 min but it goes by super slow b/c I really just am uncomfortable. Gavin won’t get in at all I have been getting in all but one night and it is when daddy went and I know I don’t have to do anything with him b/c he doesn’t make me. Mom wants me to learn and do everything…

I have Horses on Thursday still and absolutely love horses.. I am riding Willie now.. he is a Tennessee Walking horse .. he is very graceful and kind our souls match… although I am not always graceful .. At school today I mashed my finger in the door .. :(. it really really hurt.. I didn’t cry but I definitely hurt and let mummy know it hurt.. I wanted the Dr for this smash .. it was really bad.. my whole finger was swollen and turned purple.. like Kleefstra purple … ouch….. I don’t want anything to touch it .. I have been using my right hand to eat and do everything so I can protect it from hurting …

We went and got our stuff packed up and I am so ready to go to Buc-ees.. I love Buc-ee.. we are headed to Boston for my follow up appts. I am going to the Kleefstra Clinic and going to see my GI, Neurologist (dr. Sid) Kleefstra Neurology) and Dr. Shearer and Miss Karen . I also have to have my ears tested again to make sure they are still working correctly..

Mummy was loading the car for us to leave and I was so ready.. But she got a phone call and had to take care of some insurance adult stuff and then she went and took care of her garden before we were leaving I was like come on.. I went and got in the car but she had her keys so couldn’t start the car to show her I was serious and ready to leave..
I sat out there and she made daddy come talk to me which I was not wanting to chat I want to leave !!!

FIANLLY in the car and headed out.. and omg… she forgot something and had to turn around… we are never going to get to Buc-ees at this rate….

WE finally got on the road and things were moving pretty good and then they weren’t .. dead stopped inching and I needed to pee…. Apparently there was a wreck.. so I sat held it and really had to go to the bathroom.. needless to say they didn’t get that traffic moving fast enough for me.. there was a truck on fire it had burned all the way down on the interstate .. so I got to see a lot of fire trucks but I really wanted to pee not look at my favorite red truck this time.. We finally made it to McDonalds for me to go to the bathroom … had to change me b/c I didn’t make it completely.. :(. I tried … WE got me some food and got on the road and guess what another wreck.. not even a mile from there.. back to back accidents in Lebanon.. we are never going to get to Buc-ees tonight like this… Mummy said that is why we drive in the middle of the night… it is fall break and lots of people out.. Finally traffic moved for a while until some construction and back to one lane and slow for about an hour or so and finally made it to Buc-ees in Crossville… I was sooo happy… I made it to this bathroom.. we looked around I went to bathroom, took a picture with the Buc-ee like Buc-ee dada got me and then got my egg and off we went to Buc-ee number 2…. Finally got to Sevierville, there were little loud cars everywhere and cops all over the place the parking lot was very busy.. We went inside and it wasn’t so bad there… bathroom first… then my picture … and my egg and some shopping for me.. got a new sweatshirt since the weather in New England is cooler…

Bye by last Tennessee Buc-ee…. Got back on the road and after a long ride we made it to the Virgina Buc-ees… we don’t normally go this route b/c it is longer and traffic is terrible but I am glad I got the new bucee….

Maryland: We left here and next stop is Maryland at my GREAT GRANDPA’S … we got to his house at 8:50 am … he was shaving… I watched him finish shaving his face and he got dressed and we went out for another ride in his new car.. he took us to an apple orchard and got us some of mummy favorite apples and then we went to a dairy and he bought ice cream for them and got me a hot dog .. I don’t like ice cream.. we headed out after that and went to his house and saw my Aunt Michele. After visiting her and my Uncle James they went home and we went to see My Aunt Ilona and my cousins Paul and Michelle.. Lots of Michelles in this family for sure …. My Uncle Paul has a very secretive and fun job so he gets me really cool patches for my patch wall.. he’s a BIG deal… and he is a lot of fun.. Love my family ….

We went back to Grandpas and went to have dinner with him and then he let Mummy drive his new fancy car. She said it is like a space ship with all the technology floating around…. Grandpa loves it and he helps him remember things.. like to turn the car off when getting out.. mY great Grandpa is so cool he will be 90 in April!! 90 and he drives and does more than mummy … haha… he has a lot of energy. His garden has roses, lots of flowers, and veggies like mummy’s guess that is where she gets her love for gardening…. Although. Like to water ….

We went to my Aunt Michele’s and Uncle James to sleep over with them… My Aunt Michele is too amazing.. She teaches a classroom just like mine in Maryland .. she loves special needs and she understood me and is amazing!! I love being at their house .. I feel comfortable …. I play just chill and hang out…

The next morning we all got up and went for breakfast. Grandpa came and took us in the fancy car. After breakfast mummy finished loading the car up and I was really ready to go .. take a picture and let’s get out of here already…. Not that I was ready to leave my family .. I am just ready to be where we are going for a bit… long drive.. Although I love the travel.. mummy and I have fun. We got gas and realized I left my talker so had to go back to find it … got lucky I left it on the couch.. and really lucky were were a few blocks when she realized I left it.

Got to Highland New York and saw mummy friend Claudia and Jonas. They have a new baby and I got to see Felix he is grown up. I was being really nosey in their house and playing with toys.. They got pizza and we all ate dinner and I was really ready to go .. I need to go to the bathroom and don’t like to go when we are traveling.. I am ready to be in Waltham already… lets go chill….. WE of course took more pictures and finally on the road….

WE have traveled thru Tennessee….. Virginia…. (Forever) …Pennsylvania , Maryland , Delaware, New Jersey , New York , Vermont (only a corner) and finally Massachusetts…. (Mummy avoided Washington) this was a longer trip but we made it and made lots of memories with family and friends..

I finally got a shower and bed and when we got up , mummy was working and I was hungry so we went to Market Basket and got things for us to eat for a few days.. we leave here on the 9th b/c he had it booked the 9th … we don’t have another appt until the 13th so we are going up north east a little more for a few days because it is a lot cheaper she said..

I found some more eggs at market basket I was super excited about that.. got me some snacks and food for dinner… of course I got tea and we got some apple cider. Back to the condo for us to chill the rest of the day..

Research-Kleefstra. Day 1 Brookline - Boston Children’s .

Dr Cagri Bayraktutan Saw me looked at my hands and face and asked a lot of questions. I just wanted to take pictures so I know it’s time to go. They did a lot of looking over me , asking questions and doing questionnaires.. I walked for them and showed them my cheeky personality… Ask and you shall receive…

Day 2 Brookline Boston Children’s

Mummy sat and answered questions and I went for them to see how smart I was and to play with toys in the room next to her. These test to see how smart I am are a bit boring and honestly don’t make a lot of sense… But I will humor them obviously they make sense to them.

Next test we saw: Jada, Nya, Liam - he has same name as me!!!

EEG no thanks . But I did it and showed my dislike with my face expressions on the pictures ! It was clear but I still showed them my cheeky fun personality too . Hey all thought I was cute so it helped with my bad attitude that they thought was funny. I try to tell mum I’m funny regardless .

We packed up to leave the house and go to Maine the house we were in was not available and mum said it’s cheaper to leave the city for a few days so we went on a light house adventure , I got to eat fish and chips and drink tea so life was good. I let her go to the beach it was not a very long visit to the beach but did let her take some pictures before telling her this was not what I wanted to do all day.
We went to a light house and had lunch and of course mum made new friends and they were from Alabama and one lived in Florida but was from Alabama. They were watching the Alabama game. I ate all my food and allowed her to chat. Southern people are definitely chatty!!! We gave them bracelets I cheesed for a picture and off to look at our light house on our adventure! I like lighthouses they are always on an island so it’s pictures and back to the road

Sunday back to Boston Dr Ballal- My Gi She said I looked good.. (we already knew I was cute) but well she said my tummy felt good and I was good .. She was happy to hear the Prilosec was helping and discussed repeating the scope to determine if the cobblestones have gone away .. So we scheduled for next year check up and will see where we go.. At least I know I am good right now…

Went to do some blood work for my study an got to see Meg she was feeling better finally.. After we left from me giving like 11 tubes of blood we got me something to eat on the way back and mummy let me go get another egg at Market Basket for the long day we had….

Break day on Tuesday ad Wednesday. We rested at the house and took a break from all the craziness . WE didn’t go anywhere and stayed in the airbnb with the weird lights and walls…. I was sleeping with mum b/c the door in my room was kind of weird to her and she wanted to make sure I was close since she didn’t have chimes to tell her everything I was doing.. Not that I escape or go far from her but new area… and she is over protective of me.. Guess it is good.. I honestly don’t see danger … I never really pay much attention to cars and people . Mum says that is what will get me hurt b/c a car can hit me and hurt me. That is why I have her! She protects me from things hurting me.. I just get to live my life happy and not worry…. Worrying is for the adults..
We ordered Indian food and I enjoyed the Nan … The weather has been yucky…

Thursday I went to Waltham lab to get the last blood draw but the last lab messed up so I didn’t get to give more blood wasn’t too happy about that…. I had audiology today and passed my hearing test but found out one of my tubes was dysfunctional.. Not 100% what that means but I do know it is not normal… But I was told my hearing was good and I passed my hearing test… honestly wish it would make my sound in my ear go away!!! It is weird right now…

Friday- mum had to pack up last night to get ready for today.. We have to be out of the Airbnb by 10am and I have appt at 7:45 am in Boston and then another in Waltham at 10 am so we have to get everything loaded to head home before my first appt. She loaded a little night before and finished this am so we could get out and on our way after my last appt. We drove to Boston for my appt with Dr. Sid… he is the Kleefstra Clinic person and also my Neurologist. I sat there they talked about me as always.. I said a few things and then he did a physical on me and asked mum some more questions. I of course am. Getting bigger daily!!! I am very tall and weigh 105 lbs now…. One doctor said I will be about 5’9” so just a little smaller than dad but bigger than mum..

After we left Dr. Sid we went straight to Waltham Boston Childrens and saw Miss Karen.. I was so excited to see her… Then we went into the room and I got in the big chair for Dr. Shearer to look at. My right ear that is driving me crazy. He Told me that my ear tube is dysfunctional and that it really wasn’t doing anything anymore.. We were being recorded for TV or something!! It was exciting except I had an issue this time… so I was not real excited about that… I dont like the chairs to lay back… it is uncomfortable but finally I was ok with it. Mum explained this will help the ear to heal and Dr. Shearer got the tube out of my ear and told us that it could take a few weeks for the hole to heal .. he said my ears looked better tan they ever had and it was there first time my ears didn’t have fluid when I came in for my check up. He was pleased with them…. My hearing test he said was the best ever. So I am glad I am finally passing hearing test and making some progress with my ears.. They seem to be a big issue for me like my throat and my eyes… my head just doesn’t like to behave… I wish my brain would tell my mouth to say what I want to say.. that is the most frustrating part of Kleefstra is knowing what I want to say and no matter how I try it comes out way different.. I can spell very good tho so that helps since I have my AAC Device . When we finished I got to say hi to Teresa and give hugs to everyone and of course take my yearly picture for my story for all of you to see who is in our lives…

Mummy went to Marketbasket and got daddy a whoopie pie and I got another egg.. and finally on the road we go… We drove and mummy was super tired this trip.. WE stopped a few times for me to go to the bathroom and of course I was looking for eggs and interesting things to waste money on.. Finally our yearly stop at Niagara Falls but this time it was dark and they had some construction but the falls are lit up at night and was so neat… we took our picture and walked back to the car to finish our way down to Auntie Heathers and Uncle Brads in OHIO… we got there late but went straight in went to bathroom and straight to bed…..

WE got up the next am and went to the Pumpkin show… I got to see a pumpkin pie bigger than our dining room at home.. honestly it was bigger than my room at home.. We walked around and I ate some of the food a fried hot dog, bite of fried buckeye. And made Heather a bear for her birthday and made me a polar bear with these nice people…. I played a dart game and I hit a ballon on the first two darts and got two prizes whatever I wanted I got me a nerf gun and got Daisy a mermaid …. WE got some seeds to plant our own giant pumpkin so we can try and make one like we saw there!!! They were bigger than me… I mean they were BIG!!! They had carnival rides and I thought it was fun to sit and watch them swing back and forth and people were screaming it was soooo funny… I didn’t go on them but did enjoy watching it..

The Circleville Firefighters were set up and I got a new shirt from them. It was super cool pumpkin fest fire shirt.
Brad came and got us and we went back and he cooked us hamburgers on his grill as we watched foot ball with Winnie, Carter, Noah and Brad, mummy and Heather were people watching from pumpkin show.. Was fun sitting around and hanging out .. Winnie is so much fun.. Brianna and Bradley came by to see me as well. Bradley has gotten tall.
Finally it was getting late and I was ready to head to Buc-ees see we loaded the rest of our stuff to hit the road back home.. WE stopped for me to pee at the OHIO rest area and they had big Buckeyes there and I took a picture .. I love the maps on the wall to show were we were and Mum would show me where we came from and where we are heading.. I normally say potty so she will stop so I can look at the map .. I love maps.. I can tell you ever exit to Grandmas house.. and probably to Boston now..

We got to the First Buc-ees yippee … first potty…. Then egg mummy .. after egg picture with my Buc-ee in the truck like my one at home… Then we look around.. find a few snacks and then off we go to the next one … ;) On the road again….. we stopped at McDonalds I was hungry … should have gotten something else at Bucees b/c McDonald s was out of everything and it was gross …. So we will just wait…. Finally got to Smith Groves Buc-ee number two … mum had to get gas she wanted to get it there so she didn’t have to worry on the way home.. we have a little further but the weather has hit… it was pretty nasty out…. We went in and went potty…… Got me my egg and of course got the 10 for my Auntie Michele in Baltimore and then my picture with my big buc-ee and looked around. Little.... Got some food to get us home and off we went… The weather was bad… mum was super tired and I was trying to chat a little to help her but think she was delirious b/c she was singing Daisy songs… and just trying to see the lines on the road… Was super nice to see the Tennessee State Sign… we hit a lot of states it was a trip and I had a great time visiting with my family , my great grandpa,, my doctors, seeing lighthouses, and the beach (for mum) chilling and enjoying some quite time without routines and getting lots of chocolate Dino eggs…. WE got home at almost 5 am… mum had to move things daddy left in her parking area … I went upstairs…. She finally got backed into he garage to get some of the things out of the car into her room. Daddy enclosed our basement while we were out and now we have a 3D room and we have mummy T-shirt room… Mummy came up gave me a quick bath and put me in jammies and I put myself to bed. I was too tired… We both slept until 1pm that day… we were both sooo tired…

Massachusetts , New York, (Niagra Falls) , Pennsylvania, Ohio, Kentucky and Tennessee going home… :) STATES STATES and more STATES…

Not much recovery before back to life …. We went to bed Sunday and next am had school and then we went to Speech and OT… Daddy took me this week.. Mum didn’t want to leave until she absolutely had to.. Daddy took me to music and home. Mum canceled Dolphins b/c of my ears and she didn’t want to take me b/c she was just not ready to venture that far from the drive we just did.. dad had something that night so he couldn’t take me either. Wednesday … mum took me to school and picked me up.. Daddy had to work.. we came home after though and didn’t do much.. think we are both still recovering… Thursday daddy had something again so mum took me to horses.. I love horses and think she likes the fact is so peaceful and in the country so she doesn’t mind going out there… although I think she is still recovering from our trip..

Saturday am we had Baseball and I got to meet a really nice new friend who was my buddy … to go to Nashville for the Tom-make-a-thon for them to go over things they were working on for me … They made me a chair for me to use when we go to museums and the zoo and stuff to help me when I get tired…. I love I got to see Lizzie and Charlotte and made some new friends .. I love making new friends at Vandy..

Sunday was showcase and we went for the final project.. I got to bring home my chair and one of the girls made me pockets with Buc-ee on them … they made me a bracket for my AAC to fit on my desk and they also made me a handle to help me with standing on my Galileo to keep me from reaching and holding onto other things when. I am doing my squats and other things on the machine…

We went to Maggianos and our waiter was amazing.. he brought me cookies ,sang and gave me happy birthday wishes.. he also made sure I had a lot of tea… BEST waiter ever…

Had to see my Sleep Doctor and she said everything looked soooo good on my recent sleep study that she only has to see me yearly now… yay.. one more down to yearly from 2 or 3 times a year… Guess that means God is healing me piece by piece.. I can hope.. just get this apraxia fixed and I will be doing way better!!!

WE are finally getting back to normally around here and things have been crazy.. getting ready for my birthday and excited it is almost time to go to TEXAS and see Grandma.. her birthday is next.. Then Thanksgiving, then mom birthday… We will be in Texas for me to do Napa… Daddy can’t come b/c of work but mum and I will be there 4 weeks.. we are going to the lake for a few days.. mum has a doctor appt since the doctors here want to make her see 3 or 4 for one thing she is going back to someone she trust there that will not do that and will help her figure whatever it is out.. She has eye appt there too….

I had eye appt this week and saw a Resident Dr. King. She was amazing, energetic and was super amazing.. She put drops in my eyes after we did my normal eye exam and I had to sit in lobby for the dilation drops to work I was watching my Youtube and decided to howl in the waiting room… mum was like NO howling in here.. I was like well that is what the werewolf does.. it is halloween week mum.. I. Stopped although I thought it was really funny… the other parents didn’t laugh but they seemed uptight anyway.. Got back and saw my regular eye doctor Dr. Stephanie Jian. She is amazing.. she is so fun. She said she updated my prescription a little so I have to get new glasses… After she finished looking at my eyes I took a picture with her and Dr. King.. Hope Dr. king will stick around she is really fun..

My Birthday woke me up with Mummy singing happy birthday…. She got me my favorite donuts from Dunkin and they all told me happy Birthday.. of course she topped them with my favorite BUC-EE candles… off to school for more sugar since we took cupcakes for Mr. Greg the day before..
After school Mummy took me to Lowes and I got a new dancing toy and had Icharo noodles for my birthday lunch…. I had Horses that evening and daddy had picked up my cookie cake and I took to have a little celebration with my saddle up friends.. It was a good 10th birthday … honestly so happy not being 9 anymore …didn’t like that age anymore..

Thankful for everyone that sent me text, calls and told me Happy Birthday ..

This has been a very busy month.. I am ready for my birthday party on the 8th .. hoping Santa comes again…

Love you all … Thank you for following our story and craziness..

Love

Liam

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