7 years 9 months

7 years 9 months …

This year is flying by…. Today mummy worked in the yard and when she got finished daddy, mummy and I went swimming.. Mummy finally got me to drop my legs and stand .. I really didn’t think I could stand in the water but I can. So I went back and forth to mummy and daddy and then they put me in my Buc-ee Raft and I went back and forth and mummy sprayed me with the water hose making me fly to the other side and soaking me. It was a lot of fun… I want to go back now. WE went to eat and a bad storm came and lightening struck our neighbors tree. It is in the yard .. not a little tree like a massive tree. One even fell across our road. We didn’t have power for a little while but that goodness for battery back up I had wifi … :)

I am starting to think Miss Elizabeth is not coming back.. I really miss her. Mummy said she had to take care of her baby, BUT isn’t she grown up enough yet so she can come back and play with me… its been a long time since I got to play .. if she will come back I promise to try something new .. just come back please…

I have been riding the big horse more now his name is Baron.. it is super exciting and I even trotted. I mounted myself with very little support from Margo… I have learned and grown sooo much in Adaptive Therapy at Saddle up.. So glad I get to do it again starting in August.

Off we go 4 pm late start…. I really was upset to find out we weren’t going to Texas to see Grandma!!! But mummy said she would make a small detour to make it worth the trip. So off we went . Tennessee down… now Kentucky. Well Kentucky was my highlight. BUC-EE!!!! Yay… I got my Buc-ee snacks and a color Buc-ee, And off we go again… OHIO took forever it seemed but I did take a little nap until we got to Cincinnati and then I wanted to laugh at the traffic . Finally cross into Pennsylvania and I’m going to sleep I typically will stay awake but just a nap to make it go faster … mummy is starting to get sleepy now . Didn’t think she ever got tired ..

Woke up to mummy on the phone with 911 bc of a crazy driver decided this was worth watching. That person was going crazy and braking in and out of traffic and I thought it was soooooo funny . He almost hit like every car that passed him and went flying and was so close to 18 wheeler we thought that was it!!! Entertainment for an hour ….we had to deal with him into New York… finally he wrecked !! Mummy definitely awake and alert now… But glad we finally got passed him. State trooper called and told us he finally had him too. So everyone out there you are good now on highway 90 eastbound!! Lol. (Heard her say that 4 times with cops haha)

Well mummy drives and drives and drives and she decides at 7 am hey Liam let’s stop at a State Park! Really!!!!! I don’t care to run and play after being in a car for 15 hours and we aren’t done! But hey I’ll humor her! This park is called Niagra Falls and honestly I was pretty interested once I saw the water . It was BIG. We didn’t stay long but mummy said bucket list Niagra Falls check!!! Pretty neat!!! But time to get on our way and back to the agenda !!

We crossed over into Massachusetts and Mummy was trying to get checked into our room a day early (since we didn’t stop somewhere along the way we are a day early). … Yes we didn’t stay over straight thru. She is a power driver let me tell you….. they couldn’t accommodate us so we went up to New Hampshire so I could get another state and we can explore since we have one day of play , made it to New Hampshire for the night Finally…. Ordered me noodles and they didn’t give us any utensils and I didn’t want to go to the lobby so I ate with chop sticks. Well mummy got it on and helped me of course .

Woke up at 8:30 to rain ugh. But sure she will find something for us to do. She is always finding things for me. She drove up to Maine… another East Coast state down!! We went to York and Kittery I Saw the beach but it was raining so I got out said cheese and ran to the car. Saw it been there done that mum.
We stopped at this place with a BIG submarine when we crossed back into New Hampshire.. it was so cool I was a little unsure about going on it so we looked around outside and got me new patches for my collection they had there . Then onward we go toward Boston for a busy medical week.

We drive thru lots of little towns . It was raining pretty hard so we didn’t do much. Finally got to hotel and went to grab some drinks and food for the night. Got settled mummy was really tired . Not me …. I wanted to watch traffic out the window and jump up and down! But settled down and rested for her to rest .

Woke up early and mommy always makes me go potty ugh hate the bathroom.
I ate a little but really wasn’t hungry I laid back down and took nap We had to wait for a Uber … parking is limited where we are and mummy paid a lot to park there for the week so needless to say we are doing Uber to prevent not having a place to park when we come back .

The first driver was interesting he was from China and hasn’t been driving in the USA long but we did survive the trip without an accident. At the swallow study I had a really cool person named Carolyn helping me. I didn’t want in that chair. But will say once I could see what they were doing I was a little interested not that I would tell them that bc it still ruins my oatmeal cream pie like I ate it because I was starving but it was just not ok to put that junk in it. I would drink and I could see it going down my throat it was actually pretty cool . I took a big drink and held it in my mouth she was like swallow but i wanted to make sure I saw it all . So I sat there and held it and finally swallowed. She added some Kool aid to it and made it sweet . Would prefer sweet tea but ok whatever . We finished and I was calmer after I realized it wasn’t bad. They were super cool with it and got a lot of pictures and videos of me swallowing. Said I was doing good. Glad I did good bc I was trying to get it over with so I could have real food.

After it was over I said bye super easy and took a picture for all to see!! Poor Buc-ee had to do it too. But he’s recovering from the nasty marshmallow stuff .

We headed out and waited for the next ride back to our room . Her name was Mary and she was soooo nice she kept telling me how cute I was. She wanted to squeeze my cheeks she said. She asked if she could follow me on social media. She was the nicest driver and safest I’ve felt in one of the Ubers . She said she would love to follow us and stay in touch.. I really liked her!!! She wanted a hug!

Well yesterday was fun until it wasn’t!!!! Going to Kleefstra center that’s fun. Zoe is always fun! She loves me I love her!!! No tape, no gunk just love up there!!!! But last night I had a sleep study . I like to sleep , but yes I snore, yes I kick , yes I’m restless and everywhere. But that gunk, those wires ugh. I worked really hard to squeeze out tears to try and make them feel bad. Mummy told them I was faking! But Dawilsa felt bad. She was super pretty and so sweet but having all that stuff and tape on my head was not amusing me. I said bye bye not that anyone was letting me go bye bye!!! She wrapped my head afterward like a mummy and well I had to get into bed! Good thing Buc-ee was with me bc it was pretty annoying , glad I had a friend!!!! I went to sleep and don’t worry I didn’t roll or move my head would have ripped right off and I wasn’t taking that chance! 6 am rolled around and they woke me up and I helped Dawilsa gladly to get those things out of my hair and off my head!!! Afterward I was glad to smile for a picture and give hugs!!! She was very sweet I just didn’t like the process of the procedure for sure. Let me just give blood!!! I hip hopped back to hotel and was very quick to strip down for a bath to get that stuff out of my hair!!!

I decided to take a nap. Mummy probably needs it more but honestly I’m tired bc I couldn’t sleep comfortable bc I couldn’t move last night or my head would fall off.

She woke me up and we went for half hour walk to my next appt. She said two today and two tomorrow. Technically one ended at 6 this am so 3 today bc yesterday 2nd one went into today. Dr Katz was amazing. We talked and played with Mr Green and Miss Red and talked about me and what I was like. Then she talked to mummy and I played games. But she was so kind. No poking or prodding , no stickers or things on my head and no being confined just relaxing. Definitely a great appt…. Best of the best. She also wants to see me again but said she will do a virtual in October . I want to see her again.

Next we went outside and waited for a ride to our other appt way way out it seemed but I was excited bc the traffic was soooo crazy and I love traffic Jams!!! We got to this appt and had to do some insurance stuff so I sat and waited but waiting this week has just become part of it. We got in and met with a nice nurse and she asked a lot of questions . Mummy needs to record herself and just hit replay. Glad I can’t talk … sometimes it is a lot. The doctor came in she was so nice and truly acted like she understood my needs and what I needed to help my tummy. She felt my tummy and checked me and is giving me some more vitamins to help me with my tummy issues . She was sending me for some labs to make sure our dosing would be normal as well. Mummy was happy to find someone that understands Kleefstra and not trying to give me an adult medication that would hurt my body!!!!! Always nice to see a doctor that you are NOT the only Kleefstra kid or one of two! When they understand I feel I get what I need … We went back to the waiting for a ride back area and the girl was so nice but traffic was pretty busy. I loved it again laughing at the stop and go… took us about an hour to get back and we stopped off at the 2nd floor and got me some food so I could eat before going to the room for the night.. been a long day our appt for today was hour there and hour back b/c of traffic…

Next day….. 8am appt.. ugh… let me sleep already!! I stayed up late!

We met with the Laryngeal cleft specialist. The two sweet ladies doing height weight were soooo nice . I met one person name Allison she looked in my ears and answered questions . Then Dr Hseu came in and checked my ears and throat and pulled out ear wax… she said Right now she just wants to follow me.. I have a lot of followers so ok!!! Said right now things look good she doesn’t want to jump to surgery. But said she isn’t ruling it out. Swallow studies are good but not always 100% bc it’s 30 min not a whole day she wants to see how i do and how my control, function and tone continues. Since I have hypotonia it Can cause me issues. She also wants to see how my chest and everything is thru the upcoming cold season! So as of right now I am ok… I am just being watched … so continued prayers for no aspiration… I don’t want surgery. But Boston is pretty cool and fun for me and Mummy…

Next we went for me to do another hearing test. My hearing test was NORMAL….. my first “Normal” I’ve had of probably anything but it was my second hearing test to pass in the last three years but this was my first NORMAL hearing test!!!! So now I can maybe learn more sounds and speak better for others to understand.

We went back to hotel to get things together and headed to my next appt at another location . We had my new friend Miss Mary come get us and take us today. We got to our appt and I had lab work first . Lab work way better than some of the things . Blood work doesn’t bother me. The lady put the band on my arm and there the little needle into my arm and here goes the blood it’s kind of cool. Mummy doesn’t think so!! But I think it’s really no big deal I just don’t like the bandaid afterward. Hate things stuck to me!!! She let me take the bandaid off finally Thank goodness. I promise I am not going to keep bleeding take it off!!

Got up to next appt and Miss Karen came and greeted us. We got hugs and mummy was so glad to finally meet her… She and Zoe are the awesome people behind the scenes that know how to make things happen…. She helps make my appts with people I need to see!!!

Next I got to meet with Miss Theresa and asked her to check my ears. Then Dr Shearer came in. He’s mine and mummy favorite and he checked my ears and I stuck out my tongue for him. He gave me the tasting sticks … I love him. He said I looked great and he just wanted to see me again in 6 months weather dependent of course . It’s nice when an appt is good. And nice when I don’t have anymore afterward. . Yay me. This has been an exhausting week I’ve been a little whinny and ready to be done but we made new friends and. I got lots of tea!

Miss Mary picked us up and asked if we were hungry! I was starving and of course asked for tea . She took us to eat at a nice pizza place that was known in their area. She’s super nice mummy always meets the nicest people. We now have a nice Boston friend. She is following me now too and I gave her a hug and kiss… :) She said rides for Liam hugs! I can do that all day for rides and ravioli..

Finally time to go home!!!!
On the road we stopped and saw my Kleefstra sister Julie And her dad Mike, Cathy her mom and her aunt MaryBeth. We went to the fire museum and saw firemen playing with water and lots of old fire trucks. I got a toy of course . And mummy doesn’t like the dog I got. Bc it’s yappy she said. . we went and had burger and fries afterwards and took pictures .. bet you didn’t expect my mum to take pictures but of course I am use to cheese!!! . My Kleefstra sister Julie is a math wiz and just graduated with a bachelors degree! Hope I am able to be as smart as her when I grow up. She also has a Frameshift mutation and is only missing one little piece like me. I have hope!!! She’s amazing!!!! Her dad is so much fun!! I truly had a blast!! BUT time to be back on the road… We headed out of New York went and ventured into Vermont for me to see another state and add to my list for the East Coast being complete now :)
Back into New York and onward we go to Michigan to see my Kleefstra Sister Marissa and family. Mummy was getting pretty tired when we got to Ohio and we were going to stop but every place she tried didn’t have any rooms available so we went to a store and the guy there told her to take a nap in the car and told her were to park so he could see us and we were in a camera view. Apparently that is the spot most of the Fire/EMS and police go so I got to see a lot of them for 45 min. She took a little nap and got an energy drink and we go back on the road to try to find a place but no luck!! Finally got to Michigan where we had a place to stay but they wouldn’t let us check in until 3 without management approval. Mummy called the people and they kept trying but the guy refused.. honestly I went inside with mummy and I DID NOT WANT TO STAY THERE .. I told her Bye bye a million times something about that place was OFF the guy was weird and it was hot in there… So glad we ended UP not staying there b/c I honestly felt something was really wrong with that hotel!! WE went over to Monica house and Mike made us Breakfast… I was full from donuts mummy enjoyed some toast and I played with toys and made myself right at home.. was so nice to be out of the car for a little bit and play! Marissa and I went outside and played in the water. wE both love water. She is super sweet .. Mummy fell in love with her.. But she loves most kids!!! Her and Monica had a blast talking and playing … was a GREAT stop wish we would have had more time to hang out but we needed to get home before dark and I had Buc-ee on my mind …. WE got on the road around 1 ish … mummy started getting tired again and we stopped at a place to grab some food.. Don’t know what happened I missed something but the sweet lady Jen .. put the food on her and gave me toys and a crown … she even joined our page … We love new friends and people to support Kleefstra … Getting the awareness is the biggest thing… and Mummy sure makes friends everywhere we go and of course I make them fall in love with my amazing silly personality….

After we left there it was downhill for me b/c I decided I am over this 31 hour day and I am going to sleep till Kentucky… so bye Michigan… Glad to drive thru you Ohio and HELLO Kentucky!!! Buc-ee Bound!!! We stopped and I jumped around got daddy some fudge and some more butterfly gummies for me. We got a BIG tea!!! Yasss nothing like TEA and Buc-ee tea is the BEST!! Gas time since mummy had literally 3 miles to empty trying to get to Buc-ee she never goes below half tank but didn’t want to wake me and we of course were almost here!!!

WE made it finally to the Tennessee line and home!!! Yay!!! Unloaded the car and I went upstairs while mummy was unloading and went to bed all on my own.. who cares I will skip the bath today I am going to bed… we left Boston at 6am Saturday and got home at 10pm Sunday… and NO we didn’t sleep!! Mummy did for 45 min at that gas station on Saturday.. she is like a machine!!! Energizer bunny doesn’t even top my mum!! But glad I am home…

I went to see Miss Hilary Monday I really missed her and I was very cheeky but I mean I needed to make her work since she had the week before off from me lol…. And she was going on vacation so she needed a little challenge!! I got my first normal hearing test so let’s see what you can make me do!!

No music this week… mummy didn’t want to drive anywhere anyway… and Saddle up canceled my last appt because it was too hot for “Baron” my horse to work today.. so we went to open house at my school and I got to see Ms. Kyrstin, Ms. Deloras, Mr. Gregg . Ms Thorah and Officer Liberty.. I was sooo excited .. and Ms. Sara was dressed up like Mario.. I was so excited to see everyone .. They really changed the classroom up a lot. School starts next Tuesday….
We went into Nashville for me to give some blood and I had to pee in a cup… that was sooooooo weird.. but it was all for Kleefstra research.. mummy thought her and daddy had to do it to so she made daddy go (on’t think he wanted to go) But it was just me … But whatever we can do to help my Kleefstra family… even though it isn’t a lot of fun. It isn’t a big deal as long as they leave enough blood for me too… Good thing I drink lots of water!!!

I have chilled a lot around the house and tried to relax since getting home .. My tummy is always al little off after travel b/c I eat foods I don’t typically eat at home since mummy can’t make things as easy on the road.

But we are home… Safe … and Boston was a GREAT visit with lots of positivity although now I have to work harder to learn more to show I can grow up and be all everyone could imagine me being… Hopefully mummy will recoup from the drive soon… she has had to work and hasn’t had much down time…

WE are still doing my patch collection so anyone that wants to send a patch … please do … I get so excited to see them come in… will submit a list soon… I know daddy has been notating them as they come in as well. Mummy is trying to get the thank you out too… thank you for helping me build my collection… hoping sissy will get a place painted on the wall to start getting them all put up soon… We also still have shirts we can make for anyone that would love one…

1st GRADE here I come.. Can’t wait to share..

Love you all .. thanks for following… Caring and the support.. we couldn’t do all of this without each and everyone of you!!

Love,

Liam www.runwithliam.org