8 Years 8 Months

School is out and it is chill time for a little while before travel. Went over to the park and hung out with my friend Sawyer family. They had their whole community there and were very welcoming. I met a few new friends and enjoyed watching the water flow and the guys and girls throw foot ball back and forth. They invited me to play and also gave me hugs.
Mummy was taking pictures… I did talk daddy into taking me to get some tea… I love my tea… Daddy hasn’t felt well with his shoulder.
This month has been a little chaotic.. woke up and Mummy and Daddy were not here.. mummy said she had to take daddy to doctor but I didn’t know that mean I was going to be alone well with my sissy Joy.. not that it matters b/c she is a grown up but it is very different not having mummy or daddy around.. So I played my game and called Grandma to talk to keep my life a little normal for my odd day… Sissy was tired b/c she got up really early to come stay with me..

Our church family was so amazing and after Mummy and daddy surgery they brought us yummy food for days . So grateful for all of them!!! Thank you to Kendell Dixon Corlew Shonnett Sparkman CorlewTammy BaskervilleMin Yvette, Lafronda Blunt Rochelle Lewis Diana NicholsCynthia, Becca, Ralph Outlawand Melissa , Quincey Jones, Ardasha Shelle Jones and Brandon for making sure I had yummy things to eat while my parents were recovering … spared me having to learn to cook super quick! I’m only 8 they would have had to eat oatmeal and mini pancakes without y’all..

Daisy is at the house a few days now b/c school is out. Bubba Walker cut my hair for my trip to Boston for my appts. I love getting my hair cut.

Daisy went to therapy today with me and she played with toys while I worked with my therapist. I was working hard with Hilary but also being my typical silly self b/c if I am too serious then I have issues with people thinking I’m losing my spunk. I am learning to tie shoes and how to slowly I am sitting in a swing and bouncing on a ball. I am starting to think they want to trick me into hanging on in this thing But so far they have kept me low enough to the ground I have not had to worry to much about that. I can always say all done and escape. Miss Elizabeth has been doing a few obstacles and I always take my super hero b/c he helps me on my therapy. After therapy we take her to Bubba work since he gets off work at 4 and then Mummy and I went to Red store to get things for our trip coming up.

Music I am working on learning how to use the keyboard .. I am working on playing Twinkle Twinkle. It’s a lot of fun to play with Miss Kate. I always tell her that I don’t want Mummy to come b/c I want to play and have her by myself. If mummy stays they talk, this is my time!

Travel with mummy time yay!!!! You know what happens on travel dates… BUC-EE!!!!! We started off and up the highway we go! And my favorite thing TRAFFIC … mummy says Liam traffic keeps you from Buc-ee longer. I was still laughing b/c it is funny. She found a way around thanks to Uncle Larry… he directed us around it. We stopped and got me something to eat and Auntie Danielle came and met up with us and Mummy gave them food so we didn’t have to throw out things since we were going to be out for a few weeks. Mummy hates throwing food out.. BUT she doesn’t mind throwing away all the stuff that is junk around the house.. She definitely doesn’t like clutter and stuff laying around.. I try my best to help. After we left we drove on .. we finally got to Buc-ees and got a few snacks for the road. I found a sleeper Bus-ee I didn’t have yet.
I stayed awake and played games and laughed and somewhat chatted with mum on the travels. We stopped so we could go to the bathroom a few times. Driving at night there isn’t a lot of traffic so the later it got the less traffic there was around. Lots of states I wore daddy underwear the whole time !!! I am trying but still not sure about going POOP in the potty. We stopped at Niagara Falls again … I ran around and stretched my legs it was nice to get out of the car.. I even humored mummy for a pic!! Then I danced and walked around having silly moments … Gotta shake the sillies out for the rest of the trip. 🙂. It is always slower when we have already been driving for like 13 hours!! Seems we slow way down or stop a lot more!!

WE finally got to Portsmouth New Hampshire and I went inside and mummy unloaded the stuff inside the door. I helped push it in as she sat it there .. WE were able to back right up to our door so it was nice and easy for her to unload . She ordered me FISH and Chips it was sooo good and she had Lobster Roll since it is NEW ENGLAND.. Food was great… WE both took showers and laid down. She was having a Charlie horse in her leg and my legs were very restless. I think it was the sitting. But we both finally fell asleep and got a little rest.

WE got up and loaded the vehicle and mummy and I returned the key to the front desk. She talked of course b/c they asked about me and what my disability was and she just goes crazy about that kind of question… I was like just give my website and lets get on the road (going to program that into one click on my device to help her out in the future.!! … BEACH TIME… lets just go it was really nice outside and I was ready to get out and play a little since I had a lot that was going on this week. I am not always the best at being outside but the weather was very nice today.
The Portsmouth manager and staff at the hotel were super nice. I gave fist bumps and was glad we were getting going!

WE headed down the road and mummy stopped a really nice place and took a few pics of us and of course pics all around.. she loves taking pictures good grief.. should be plenty of me for all to see. Never a missed moment for her!

We stopped a few places looked at the rocks and walked around and finally at the Hamptons I found a great Asian place.. Was so excited I finally got some noodles.. I ate almost all of my noodles they were yummy .. the egg rolls were so hot I just decided NO thanks … Too hot tooo long and not worth the wait..
We left and went down to Salsbury MA where I met an awesome officer he was a Lieutenant His last name was Leavitt and he talked to me , gave me a police badge sticker and told us he would send me a patch and get with some of his other officer friends and get us more!! I am so excited. He was the best part of the whole day!!! Of course mummy liked the sand on her feet.. I just liked watching all the kids play and the waves crash.
We left the Boardwalk and drove down to Gloucester MA and I FINALLY made it to my CASTLE … Hammond Castle, we tried taking some pictures and a guy told mummy to please wait so he can get some scenic pics. So we went inside. We walked around and I DID not like the spiral stairs and the tight rooms.. I loved the castle in the open places and outside looking at it but really, was ready to get back outside.
We met a nice older couple (grandma type so I loved her) and they took pictures of mummy and I with the water behind us.. It was really beautiful but that is mummy thing.. I like exploring more than enjoying the scenery.
We finally finished at the castle and were headed to Waltham where we would be staying for the next two weeks for my appointments with my doctors.

We arrived and the place was nice I helped mummy a little to unload but I wanted to go explore the house and let her bring the stuff in. This one was neat b/c we were able to park at the door so I didn’t have to walk in and out with her .. Which I HATE!
We settled in and took a shower to get ready for my first appt with Dr Harris.. she is the audiologist I saw that checked to see if my ear tubes were put in correctly since apparently from overhearing my ENT in Tennessee didn’t communicate what he did on me.. Mummy isn’t too happy about it but I can hear so I am not worried about it . Sometimes I hear more than I care to!! We got up early and went to the appt …. Mummy messed up b/c it was at noon not 8am.. good grief I could have slept in… hurry hurry Liam …. We went and saw Miss Karen and talked to her or mummy talked and talked and talked and I said bye bye bye bye over and over after I got my words out . We left after the long Chat had breakfast at a Cool diner in a Train car… it was good I got French toast .after we went back to the room for a little bit. Finally time for real for my appt. Saw Dr Harris she was a lot of fun. She checked my ears and said they looked perfect with the tubes inserted, said they were flowing and working correctly but there was some blood in there that she wasn’t too worried about but would document. I went into the sound booth ad played games I was looking for the animals like at Vandy … She finally lit them up to make me happy! Afterward we got our picture for mummy little whatever she does so she would be happy “CHEESE”.

Tuesday we didn’t do a lot, Mummy got caught up a little on work and then we went to the grocery store and I have made some friends there .. Daddy was going to be flying in today so we will go eat with him when he arrives.. Mummy got caught up on work and I played and talked to grandma. We went to Enzina Pizza in Waltham and I had Peach Tea it was super good , there was another family there that also has Kleefstra .. I met another Kleefstra Sister named Hannah she was super sweet ! She was older than me but she was so sweet and her mum and dad were also very nice. Daddy arrived and we ate and then went back to the house for the night.. SHOWER TIME..

Wednesday mum worked and got somethings done and daddy walked down and went to CVS to get his energy drinks he loves so much. We tried to get him stuff at the store but he likes his CVS or Gas station drinks .. Guess they taste better than the ones at the grocery store. He drives mummy crazy.. maybe that is why he does it b/c it is fun to torment mummy !

Thursday was. A CRAZY day.. left the house super early to drive what seemed like a long way for my appt with Dr. Ballal my GI. She was super happy with the way my stomach felt and said that she was glad we were using the MAG 0 7 said she was going to bring that up to me when we came in. She said that next time we are there she wanted to try and do a triple scope to get a picture of my GI just to have it and be on safe side of things but she was happy with my progress. The MAGO 7 is nice and doesn’t cause me to cramp but does cause me to have a good poop… mummy wants to me to go in potty just not sure about that one …. We left there and drove to Boston and mummy went around and around a million times it seemed .. its as all the stuff I used to see when we walked but she couldn’t figure out correct traffic or something b/c she never got anywhere she wanted to be. She finally stopped at Whole Foods and Daddy and I ate Pizza.. Mummy didn’t get anything she helped me eat … I still am not sure about cutting or getting things lined up my mouth, but am getting a lot better than I was …. We finished there and went over to see Zoe, Haley and Meg. Meg is new… Daddy and I gave a Skin biopsy for some Kleefstra Study…. After that I went upstairs to see Dr. Katz … Love Dr. Katz she has a kind voice and is super sweet. We talked to her ,gave hugs and then had to head out to get to the hotel for the conference to start.. I didn’t feel like going but mummy wanted me to but Daddy didn’t want to go so she went alone.. after she went she was so sad I didn’t go to be apart of all of the kids and pizza party. Dr. Kleefstra and Dr. Sid. But I knew we had two days to see everyone.

Friday we got up way too early.. ate food and went to hotel hung out with everyone in the dining area and everyone ate. Julie came over to eat with me and Hannah.. Wynne and the whole Lockwood Family were next to us as well. There were a lot of our Kleefstra family around.. I ate my food and Hannah and Julie had breakfast at our table they are grown up sisters with Kleefstra . They love me! We went to kid care it was super hot in the room so they moved us after daddy and mummy went to conference . I didn’t really want to be in the kid room and went into the bigger kid room to hang out with Ben I made a bag and snake and put grandma car space ship on my bag . I love my grandma I always talk to her about her car, French fries , spaceships and the car wash and of course uncle Steven!!! Mummy came and got me and we went upstairs to grab lunch.. they had sandwiches and I don’t typically eat stuff like that so I ate all of the chips and some snacks. After lunch we went back to play some more in kid care and mummy and daddy went back to the conference when it was over I seriously wanted to leave. Mummy went to the room and got me my game to play for dinner time and also got me some chicken nuggets until it was dinner time we had a little time till dinner and since I didn’t eat lunch really I was cranky! Honestly was just ready to go back to the room. WE had dinner and it was really good . We hung out with friends.. I called grandma and we ate.. we hung out with Jen. Jon . Jayla (my Kleefstra sister ), Kiante ,Marlon, my Kleefstra Brother Hezekiah, and his sweet sister.

After dinner we went back to our little house and someone was in mummy spot .. it was really yucky outside so daddy and I went inside and she went to find out if they would move for her to park.. she made friends.. Good thing , it was the girls Bently Soccer players living upstairs and. I would have never met Jill and Jenna if it had not been for them parking there!! New friends are always the best.

Next morning back to the hotel and we ate at the room so I would be full and mummy packed things for us to eat for lunch this time. I played with everyone in kid care and enjoyed hanging out with the big kids.. I got a picture with Dr. Kleefstra she is very sweet. And we took a big group pictures. There were a lot of kids like me… our group and my brother and sisters are getting bigger.. I was still a little cranky and wanted no part of the kid events in the evening. I feel I did kid stuff all day and didn’t complain … in the evening I want to just be with my people and not have to entertain and be fun BUCEE Liam.. That is what I am called now … Buc-ee Liam.. My friend Maja and Wynne (kleefstra sisters) always looks for me and calls me Buc-ee Liam 🙂 Can’t imagine why anyone would call me that but I am happy with it .. 🙂. WE took loads of pictures and I was like so over it all but I kept going back… I was pulled and tickled to try to get some fake smiles haha… I honestly don’t have to be in them all but they seem to think I am the STAR or something.. it is like a Paparazzi with my mom … Waiting for the evening event I wish we would have left but honestly mum knows me well b/c she knows I would not want to come back… I just wanted chill time so I sat in a chair and played some games and Daddy was watching me .. or should I say I was watching him snore in the lobby of the hotel… lol.. Mummy was there talking to friends so we were good ..

Sunday we didn’t have to go to the hotel for more conference stuff so we decided to go into Boston to the aquarium since Daddy was here.. well traffic was awful of course I think that is so funny… so I laughed non stop as we inched our way into the city. We finally got a parking place in a garage and walked down. Apparently they have times and it was super hot outside with the humidity.. Daddy wanted to go for a walk and I didn’t want to go for a walk but did .. on way back I decided I had enough of the heat and the humidity and I wanted to leave.. Of course they already bought tickets to the aquarium so I gave them a lot of issues to get back to the doors b/c I wanted to leave. I was hot and miserable and didn’t want to see fish anymore. I kicked off my shoes, I sat on the ground and daddy kept trying to reason with me and mummy said “told you so”. Which in all seriousness was super funny , because she did tell him , but he didn’t like that haha.. I didn’t laugh b/c that would require me to give into my fit and allow someone in this situation other than myself to win. I finally stood up and hit my head on a little shelf under a foot trailer where I decided to protest! I finally got to the door at the aquarium and we worked our way to the gate … I needed to go to the bathroom but was still being a monkey (we should have gone to the zoo I probably would have fit in better) and I was not going to the bathroom I didn’t even want to be in the aquarium that was also HOT by the way!! Was not cooling down and was not in the mood.. I walked and did enjoy some of it but wasn’t going to let them know I might actually be enjoying it so had to fuss some.. we got upstairs and told mummy I really needed to go to the bathroom but I wanted the stairs and not the elevator.. we got downstairs and the bathroom was at the entrance.. we never saw another bathroom in the whole place.. I didn’t want to walk to entrance b/c that means I might not get to leave. I went out the exit and well needless to say I couldn’t get back to the bathroom b/c we went out the exit … mummy was very upset b/c she wanted me to get to go the bathroom but we had already entered for our time and could not re-enter the aquarium.. We finally made it back to the room and I was able to relax and be happy self.. I was definitely happy to be back.. I really like being in my little space where I can chill. Heat is not my thing.

That evening we went to eat at a cool place downtown Waltham on Moody street I loved watching the Baseball game on the screens and I got yummy fish and chips…. It was sooo good…. WE got some food for my friend Jen,Jon and their sweet little girl Jayla she was cute and mummy loved her!! (Another Kleefstra Sister). So mummy dropped us off to rest after dinner and took them their food …. I went and was so tired from the day I just wanted to crash and of course call grandma..

Monday we got up early for me to see my Laryngeal Cleft Specialist Dr. Hseu. She wants to be apart of the scope my GI and everyone wants to do.. I have no clue but I know these people up here have my health and best interest at heart b/c they are always telling mummy things she didn’t know and they always take care of me without giving me lots of drugs…. I always ask them to check my ears b/c I love my ears getting checked. Probably because that is what I had the biggest issues with over the last few years.

After our appt we went and had breakfast at Wilson’s with Maria .. I sat at the bar and then finally gave in and went to the table with daddy and mummy. I got pancakes this time and they were really good …
We went down town and ate dinner at Da Vinci Italian restaurant It was so good. I was so grumpy when I arrived b/c the Waitress Courtney helped me with getting me sweet tea (she made it specially for me ) and did what she could to cheer me up. Ravi the chef brought my food out himself and he heard me ask mum for watermelon and brought some out just for me … He even allowed me to see him cook and made fire… it was sooo cool…. They were the best and the Food was amazing!!!!! Want to go back there when we visit for sure ..

Tuesday daddy was leaving for the airport today… mummy had to work but after work we went to this cool place Called outer limits it was downtown on moody street as well and was a cool toy store with toys from way way back when mummy was a little girl.. they were super old but I thought they were super cool.. Found a new action figure from Fortnite I had to have so they got it and we went back to the car. Mummy just can’t let me have too many days off from PT she had me jumping the cross walk.. I of course aced it!!

Got daddy to the train station and headed back to Waltham and went to grab a few more groceries for the week.. I like the grocery store there and have made friends there of course! You know me… always making friends.. unless I am hot or over the day!! Hahah

Wednesday i had neurology we went to Boston childrens main for my appt in the Fegan center … got up there and they got me checked in fast.. lots of weight and height last two weeks.. amazing it was not changing from each day but they still took it at every appt. They talked to us and gave me a new rescue medicine that was easier if I had a seizure.. found out I get to keep Dr. Carozza that is moving from Nashville back to Boston where his family is. I am sad to lose him in Nashville but glad I keep him in Boston. After the appt we went to drive back and traffic was super bad b/c apparently there was a Red Sox game that happens to be a few miles down from hospital if even that and well took us over 2 hours to drive 3 miles mummy was frazzled and I was cracking up.. so it made her laugh.. then theres as a guy Jamming out and she was dancing and I was dancing and he rolled his windows down and so did I and he saw us dancing and we all made friends in traffic and were all dancing to journey “Don’t stop believing”. Guess that is one way to make traffic time sitting pass other than my cracking up .. We got back to town amd what kind of trip would it be without fire station visit ??? we went down to Moody Street and the fire department doors were open so mummy parked, we went in and introduced ourselves and the guys we’re very nice we fist bumped hung out, took pictures of course with my mum!! I looked in the truck and a really nice lady. stopped by and brought a patch for me for my collection and one of the guys had a special patch from the police department he gave us.. I had a lot of fun playing with our family in Waltham Massachusetts! Thank you

Ryan devane Sean azadi Mike fitzsimmonds Paul quaranto Mark wills for allowing us to hang out for a little bit before your next call!! Thanks for the patches, hat , coloring book and most of all your time ! I told mummy I wanted McDonald tea ( there’s no sonic in New England) so I got nuggets of course and wanted happy meal b/c wanted a minion!!!

Thursday was a chill day we did nothing and I was so glad to not go outside at all … I talked to grandma some she has been sick so she sent me some videos to give me some grandma time when she couldn’t talk. Thursday evening Jill and Jenna came down they talked with mummy and she gave them a lot of food we couldn’t take with us when we left so it wouldn’t go bad. I hung out and made Jenna wear my new Waltham Fire hat.. I of course gave hugs and took pictures of the me with them to prove I was with them. And met the Bently girl soccer girls .. 🙂. they were amazing!! And they are going to help me get some new patches and stuff for my collection .

Friday we had to pack up it was leaving day!!! Time to push it hard and get home… but had to see my amazing Dr. Shearer.. he is the reason I can hear now.. and I can breathe.. He looked me over used the tongue thing that taste good and helped to make a plan for coming back in November for my scope. He is always so caring.. Mummy said he is very kind and really cares about his patients.
After the appt we got out of Boston and got on the road to hit a lot of major traffic… we drove very slow for a very long time.. of course got to giggling again!! It is so funny not sure why I think it is funny but it is… and me being silly makes mummy not think about it so much!! We finally got out of Mass and made it to New York. It was a lot smoother in New York for sure. We stopped and I went to the bathroom a few times. I made it there without accidents so determined to make it home…. I was so ready for Kentucky and Buc-ees.. WE drove and drove mummy told me to take a nap and it would go faster so finally I did.. WOW she was right about time passing little faster that way but I hate missing things.. we got out at a few service plazas and walked around some so I could use the bathroom and mummy too. I always wanted more TEA and that helped me stay awake and watch for the Buc-ee signs.. Although they are not everywhere up here like in TEXAS!!

We finally got to 1st Buc-ees and I took my picture with my friend and got some butterfly gummies… mummy got some jerky and that was all we got minus using the super clean BATHROOM….
Next finally we got to Dane’s Buc-ee.. he was off .. I was soooo sad!!! BUT I got a new BUC-EE and shirt and then of course a shirt for me to match my new friend and new store!!! Got a few other things at this one and we finally were almost home… Made one quick stop at Danielles to give her something and we got home about hour and half after that.. I was super glad to be home… mummy unloaded and she pushed thru … we went back to town got gas , food and went through the car wash since I spilled some snacks … I helped her vacuum my mess , I am a GREAT helper.. (of course when I want to help). I do carry my toys I bring downstairs up every night to help tidy up for the next day.. makes no sense but I help mummy so she can have a somewhat clean house with two boys.

We went to church today.. It was a shorter service than normal… we were both a little off from the long drive but it was a good service and I got prayed for of course … love prayer… and I have to help Sis Blunt start off the anointing process! She likes my help! And I like to help keep things on a schedule for her! Plus like seeing my sweet Terria do announcements… (that also means it is time for lunch) daddy is in Texas at Grandmas b/c she had been feeling bad and we wanted to make sure she was ok. I don’t like to talk when he is there b/c he takes my Grandma time. But she tries to talk somewhere else to let me have my talk time.. she tells him I don’t want to talk to him .. I see him at home all the time .. I never see her and she talks to me like I am 8 years old not 2. I can say hi dada all day and bye dada .. I want to talk. About carwash, French fries, uncle Steven taking his bath or sleeping, also about the space ship I want … I don’t want to say the same thing over and over I can already say!

I got to see Miss Hilary YAY… I worked hard today… of course she asked mummy about the trip so I got what I wanted to work with and got it all out for her … She was like well Liam guess this is what we are doing today!!! She knows she will work with what I pick.. I am too cute for her to say NO to… Wish mummy and Daddy would think that .. I get a lot of NO’s… well not a lot but I do get NO more than I want as an 8 year old. Miss Deborah was out so had a sub we made a flag for the 4th of July coming up. Almost time for fireworks…. Miss Elizabeth and I played I was a little bit Cheeky today and kind of avoided working , but in fairness I was still tired from the last few days although I did sleep well..

Tuesday I had music today was very different… I was with Anna Laura (love her) but Mummy didn’t tell me Miss Kate was gone so I was a little confused, but I played and showed her how we do things when Miss Kate is around.. I even showed her I was learning Twinkle Twinkle on the piano!!! I am almost there.. and I am proud of it .. Love how I get to play with everyone there!! We had a student with us and she was a lot of fun as well…. Play time at Music is always a blast…

This has been a very full month of Doctor appoints , reunions with my Kleefstra family, travel and just a blur… Sorry for the longer than normal month and I am sure we have left out important things and people but it has been crazy!!!

Love you all thank you so much for the love, support and for following my journey!!! I mean at least I am a good read and not boring.. always something going on with me…. Even when I am quiet I am up to something …

Liam

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