8 years 4 months

8 year 4 months

February is here and the days are getting a little longer but doubt that means I get to stay up later … I am a night owl and I have proven I can still be good at school without a lot of sleep. Mum should get this she has been a night owl forever . Daddy needs way more sleep than we do!!!

Back to normal school and therapy .. Break was nice but back at it so I stay strong and stay ahead of what they say happens with Kleefstra kids..Being RARE is a lot of work let me tell you!!! This is RARE disease month so lots of things going on to celebrate RARE .. Thanks to everyone who constantly supports me.. Makes me feel special to have so many people who love me..

One new big thing this month is I am finally able to scoop and eat RICE all by myself . I ate a whole plate of chicken rice with a big spoon, Sissy and mummy was so excited that it made me excited and kept eating till I was sooo full.. I also had 3 spring rolls…

The Hot water heater exploded and flooded the whole basement .. luckily Sissy and Miss Michelle came over and Miss Michelle played on trampoline with Kade and Daisy and Mummy and Sissy worked on things in the basement.. No hot water meant no shower for me… Ugh.. But better than a cold one. Daddy was working at Vanderbilt and he ended up having to wait and take one at the Fire house the next day….

Today we were doing math and I was adding 4+4 … I can do that easily!! Hello. I love doing my school work and making people proud of me. Mr. Greg was occupied with another classmate and it was in my time but I was not going to sit there so I grabbed all of my words and decided I would just study while my friend needed extra help.

Daddy has been teaching me to spell new words also.. Like ARMPIT! Mummy said that is gross but we think it is funny… I could be spelling Fart but that one is too easy! We are boys we are going to be gross mum! Daddy FARTS and I say on my talker “Wash Daddy bum” bc that is Gross. Or she thinks it is gross and I think it is funny to make a big deal about it..

Daddy got Baptized at Church today… it was exciting but kind of interesting seeing daddy in a BATH at the church. Daisy, her friend Trista and me stood by the big bathtub at the church and watched him.. I was sooo excited. Afterward we were all in front of the church and I was helping Terria sing .. She would give me the Microphone and I would do “oooooooo “ After realizing I could hear myself super loud figured I would grab it again to do some more sounds for everyone to hear!!! They all laughed.. What an amazing place ! Love Church!!

I lost another tooth… I have now lost 3 teeth… The bottom two came in fast the top one is not coming back so it is really hard to bite things!!! Ugh!!! But hey got a new transformer so not complaining.. and Mummy went to the store in the RAIN!!! That is BIG!! I wanted to show daddy and he was at the station!!

We had another fluffy big snow come through this evening… Mummy is goofy and went outside and took pictures playing in it and it was DARK .. I watched and laughed… I was ready for bed but figured we wouldn’t have school since it was snowing and sure enough it was canceled…

Got a few more patches this month Chief Greer gave me one of the chief patches when Daddy and I stopped by to do something .. Well daddy had to do something I was just being me… curious and exploring my new world…. Not always funny to all but it is embarrassing to daddy sometimes when I do goofy things.. ( that makes me laugh more tho)

Miss Michelle and Josh and Blake made some cool purple flowers for us to go with my Bench on the porch, That Kristi dad made for mummy for me, It looks really nice…

I love my work outs at home.. I have been doing my up and downs all by myself b/c I love counting.. 5 on left and 5 on right… Plus my big Buc-ee Cheers me on as well … we have been working on my music every morning before school thru Advanced Music Therapy , then we do DMI and Galileo . I have masking but b/c of my lungs and being sick she let me take a little break but getting back into routine now that things are settling with my illness.

Had Miss Hilary today and I keep sitting In the small desk b/c she tells me I don’t fit and I like to show her I Do fit… ..

Elizabeth I decided to make her chase me I was giggling and running.. she had me throwing the ball and catching on the trampoline I was doing good but getting wild but it was funny. She had me do some up and down lunges in the spider cage and then was trying to get me to go do jumps but she was like come on Liam and I couldn’t move I was like Mum ummm help .. and she was like come on Liam .. But I was stuck finally mummy was laughing and Elizabeth realized I was still attached to the spider cage and couldn’t move.. I am not sure if she was joking or if she was really trying to get me to get out of that mess on my own!!! They like to trick me.. Maybe I need to pay better attention on how to escape that!!!

School days I am working but being silly as usual have to make people laugh it’s my job! Non verbal doesn’t mean NOT funny! It means I can’t say words I’m thinking and you should be very glad I can’t say all I think.

Got Timeout at school for playing in the crayon bucket when I was told not to.. I really needed a break from the other kids so I got in trouble so. I could go to timeout.. Everyone knows I love time out.. Plus I like having Mr. Greg to myself..

Mummy and I are still doing my work outs in the am.. I am showing her what order I want to go and I have been braver and started trying things without mummy hand.. I am getting bigger so need to at least try new things and not be so scared.

There is a big machine still in our yard laying a big pipe.. it has made a very very big mess like I am not about to go out there and walk in that muddy mess.. I will just stay in the house and look from afar. I do enjoy watching the equipment, but don’t want to go close to it.. Mummy is sad b/c her green yard (that wasn’t green yet ) is a mud hole she said. She always says they are making a BIG mess! Daisy makes a big mess too.. Mummy got her a new scooter for her and Ollie and She came over and drove it all over the house.. unfortunately I am too big for it but doesn’t mean I won’t have fun being silly when she is running around in it at the house.. her and I love to chase each other and do things to make each other laugh.. She is a girl but loves playing with trucks and super heroes just like me.. Sometimes I get a little upset with my new stuff but we always work it out..

Had an evaluation with Mary Beth she is a lot of fun.. I have seen her before today we just played with her cool cars.. she asked a lot of questions and she didn’t make me do all of the talking but it was a good day.. we weren’t there very long but afterwards I got to go eat breakfast and then we went home. The best part is I got to skip school for it. We had saddle up that evening and that was fun.. I love my MIss Stephanie, Miss Lyndsey and Miss Leigh. It is a lot of fun .. I am learning to Trot it is a little scary but I am starting to like it. I am learning a two point and how to lean into the front and reach to go with Rita.. I tell her Walk on and Whoa… she is really starting to listen to me also.

So it is the WEEKEND and we were sitting doing Not much b/c we try to rest after school (mummy work) and therapy for me … it is a lot of running around and in the car for me during the week. But all of a sudden there was a knock on the door…… it was my Auntie Shelsea!!! Savannah … and Jessica.. They all live in TEXAS they were at my house.. I got big hugs, got group hugs and omy gosh just got lots of love. They were not here a long time but showed Jessica my room and my collection of Buc-ee as well as showed off my patch wall from all of the people who have shared their patches with me for my collection. I was sad to see them go but they were just passing through on their way to go home from being in Nashville for work. So glad she loves me so much and stopped!! ( I know she loves mummy too but was nice she really wants my love more)

Today church had a really special evangelist her name was sister Washington. She was really really good and I loved being near her and letting her pray for me. I love to praise Jesus and jump and say Jesus . I make daddy raise his hands and worship. He will even dance some with me he is learning ! Church was really long today I did say done church and eat a few times . Plus I ask for TEA a lot! Sister (Auntie Blunt). Made an announcement about my page so some of the people could follow me… So Glad we have a new Church Family… I really love going to church and having so many new people to love!

Today we went to see my neurologist Dr Carozza he is moving to Boston so I’ll see him there but at least I see him a few times here still.

Afterward Grandma treated us to dinner and I got lots of bread , ravioli and chocolate cake . I also embarrassed daddy bc I told him wash dads armpits on my talker at dinner table . Well he taught me how to spell it, it’s a new word so yes I’m going to use it! Then I told him they were stinky when he asked if he was stinky . Why would he ask me that if he didn’t want an answer . If I am telling you to wash them they have to be stinky. I also told him he had a beard . He needs to shave so his fire mask will fit if he has a fire !🔥

I went to Music and walked in and Miss Kate jumped and scared me.. I laughed super hard .. I told mummy BYE BYE it is my Miss Kate time!! I love mummy but I want to play , dance, and learn songs and have a BLAST. If she is there they talk … They can talk after I am done playing!! This is like recess for me !! Love love music.. I play all sorts of drums, keyboards and all sorts of fun instruments… I love when she plays the guitar!!!

I had Miss Hilary this am to make up the session I missed when I had neurology this week and I played around being silly again but I was making lots of neat sounds for her as well as making her laugh. She was explaining something to mummy about sounds and how hard they are for me to make and showing her some things .. While she was doing this I glued to cards to a piece of paper and drew smilie faces on the paper plus signed my name.. She wasn’t even upset b/c she was thinking it was awesome I was able to do those things.. See I can do things that are really not ok and people just think hey look what he just did!!! WORKS EVERYTIME!!

WE had saddle up tonight.. Mummy and I had to go to the red store (Target) b/c she didn’t have my jacket and the arena is typically pretty cold.. Found me a pull over to layer up and I was fine.. honestly mummy keeps our house so cold nothing bothers me (also got a new transformer that mummy and myself had a hard time getting it to transform. She and all the parents worked on it at Saddle up … … Tonight Lindsay was out but our sub was really fun! She did stuffed animals and we did a lot of two point and trotting all three of us in my group were laughing and had a really great time tonight!!! When I was finished it was nice to see they got my car to look like a car.. still don’t think it is right but it was a car so I didn’t care as much!!! Love bumble bee.

We got home and I asked for GAS and Car Wash!!! I have to go to the car wash so I can see my people… It is always nice to get my fist bump from everyone up there and Jimmy always smiles and welcomes me!! Love my WASH 37055 FAMILY a lot.. and really love helping mummy vacuum.. well I vacuum my hair and clothes and seat I mean cleaning myself up is very important !!! I think it is sooo funny!!!

Well This month was eventful with Shelsea, church and typical Liam school and therapy …..But not eventful like we went a million places and there was a lot to show you!!! I am making lots of new inch stones, milestones and have grown a lot since getting my hearing fixed March of last year!! Grateful for my people in my life that have supported me…

Love Liam www.runwithliam.org www.patchesforliam


specialneedslife #itsthelittlethings #kleefstrasyndrome #kleefstraawareness #kleefstrarunwithliamjourney #runwithliamjourney #godisinthisstory #inchstones #milestones #workinghard #SpecialNeedsMom #PatchesForLiam #Bless #asianfood #rice #Godisgood

firefamily #bluefamily #emsfamily #firekids #therapy #PT #promptspeech #musictherapy #adaptivetherapy #Buceeismybestfriend