7 years 10 months

7 years 10 months

School …. Well was excited . Then I wasn’t . Change I don’t do change ! I can adapt .. I had to adapt when I first came … but The division confused me! . there is a divider and this used to be where I could roam in a mood or get into yellow and take a nap… . No escape now. Just well school work and not sure how to deal… When you get out of kindergarten is this what happens you have to work!! I survived the first day but was hoping not to relive it . Day 2 I decided to protest I sat in the car and begged officer Liberty and Miss Misty to buckle me back up and not make me go in. Miss Kyrstin came out but I knew it was a trick to get me out… Officer liberty finally made me a deal I couldn’t refused and offered to let me do security check on all doors and cameras with him! OK. And knew mummy was there …mummy hung out for a while in the office she loves miss Kelly , Sara, and Cindy, so I figured she would chat while I checked things out. . My sister she had to go to office at school all the time and at least I wasn’t in trouble … I don’t think I was anyway. Mummy picked me up before lunch and I went home and seriously retreated to my room didn’t care to hang out today. Been a rough week!!! Day 3 got up late so music on way to school (on good note got out of PT) routine is not something I’m in the mood for this week. It’s a mess!!! I got new shoes don’t like them. I’m moody and not myself! Honestly giving blood is more fun than this week . . Miss Deloras came to get me today and that was a good sign but didn’t really want to go but I did mummy and daddy gave me hugs and I just wanted to stay with them but it was a little easier . School is cool again. I’m starting to feel it. Glad everyone loves me enough to help me get my groove back. I decided I gotta learn and I’ll stop making mummy feel bad . I love my class and teachers ! She knows this! Mr Greg and Miss Thorah play with me and I just honestly wanted to play games at home learning takes a lot out of me. But hey Mr Greg let’s me work out and walk so I’ll take it. Miss Rebecca is teaching me to write my last name, it is super hard but daddy and mummy were so proud of me. So I am trying more and more.. I have been able to write Liam but now I am writing McDonald and I don’t have to trace.

I am back in music … surely missed my Miss Kate.. when I go to Nashville I know where we go and want to see her!!! She was so silly this week and she seriously put on my shoes!!! Oh my gosh she is so silly .. Can’t believe she can wear my shoes!!! She even put her boot on me .. I looked so ridiculous but was sooo funny. She knows how to make me laugh for sure…

So we were sitting home and Daddy said some special people wanted to come see me … not sure who it is but apparently someone from California (LA City Fire Department UFLAC Local 112) fire department and a Maury County a local station wanted to come visit and bring me some patches and things… I was sitting outside and so shocked when here comes a really nice SQUAD !!! They pulled in and Ryan, Savannah and Sydney got out with all kinds of cool things for me. Patches, coins, stickers, shirts , hats.. I was a little shy but then realized they would let me jump and play and they even let me show them how things worked on the truck I rolled up their windows b/c it was going to rain and saved the Squad from getting a little damp. I am so helpful. That truck was super nice. Ryan let me jump and I tried on the shirts and took pictures with them all and gave big hugs. Even showed them my big buc-ee it started raining so everyone even buc-ee had to get inside quick… it was a really great visit I was so happy to have new friends and people who wanted to see me and be apart of our journey and our village…

Saddle up back in … I don’t have Barron anymore pretty sad I went backward from my BIG horse to a pony. I brushed Sampson I still love the pony just want my Big horse again I was mounting and doing so good took a break and I’ve gotta prove myself again. Miss my friends too I got hugs from them and we all enjoyed each other a lot . My volunteer is stephanie she’s super sweet and have a new instructor named Corina. I love Miss Stephanie!!! Really love her. she is so sweet, soft spoken and sweet to me. I miss Miss Margo but glad I still get to see her. I am learning that as you grow you get new people in your life and you have to let people get to know you! Very hard lesson but I am starting to grow because of it.. I was being a little grumpy and mummy explained now I have to just suck it up. We went for a trail ride guess I need to show them what I can do they don’t know me . But super hard for me . New beginnings are hard. School was hard the first week and now it’s great guess I need to just get in my new routine and this will work itself out as well.

Miss Sara is friends with the Mayor of Dickson County and she was able to talk to him and he did a proclamation and declaration and he has declared September 17th is Kleefstra Awareness day for all of Dickson County… he was so sweet.. he let me play with his hair and I thought it was super funny when he would button and unbutton his jacket. He also had a tie that I was playing with. He was one of the coolest adults ever. His name is Mayor Rial and he is a BIG deal in our county he makes the big decisions and he thought I was special enough to make a special day for me and my Kleefstra family. I love our town, county and school.. they truly love me and are soooo supportive.

Sissy and Daisy came over and played and she made me get on the 4 wheeler… honestly not a fan and she always makes me try it and says you have to try things and be a normal kid… well I am not a normal kid and NO THANKS.. but I do it… she forces me to try new things… guess it is good or I would just watch and never try things b/c watching is way more fun.

Gavin Birthday party was today we went up and I got to splash and throw the ball at the kids in the pool .. I think it is so funny to splash and throw things at them in the pool. Plus I got to hang out with my best friend.. and mummy got to hang out with hers and leave me alone to play ..

I got to go to Maury fire department and see Beautiful Savannah … she is so sweet. She showed me the trucks and I gave her a Run with Liam shirt for coming to see me and bringing me patches for my patch collection. Was sad that Ryan and Sydney were not there but I left them a shirt to wear on Kleefstra awareness day for me… I hope I get to see them for the fundraiser on the 28th of October. They are having a big Fire Department Fund raiser and mummy said we could go. I am excited they are my new friends.. the fire chief was super kind as well.

We had to spend the week at Vanderbilt for a 48 hour EMU it was hard.. they put the super glue in my amazing hair again.. (I HATE THAT) and had to wear the head wrap and I didn’t want to move my head again b/c again I felt like all the cords and wrap would make my head literally yank off my body…. I kept telling all the nurses bye bye. The best part of the 3 days there was the sweet Chaplan came by with her puppet Sacatush. He was so funny. She even let me hold him on my hand . He made me smile and laugh. They made me my own name tag and also got me a picture signed by my new friend. The doctor came by and said my EEG was amazing! Said they had never seen a kid with the activity I had last year just vanish!! So apparently my very special brain is very almost normal on the test results and I don’t hear normal a lot but normal hearing and normal EEG apparently is a GREAT thing!!! So I guess I will take it… and hearing I don’t have to repeat that glue next year I will for sure take it!!!!

Of course this week coming up we have pictures so hope these sores heal and this glue is gone by then. Ms Kyrstin came over and brought some stuff to try to help get it out and sissy came over and finally cut my hair and go most of it out for me. I am feeling a little less stuck together…

Back to school and I am doing well. Super sad b/c now Miss Rebecca left .. we all got to loving her and she had to go somewhere else. I do have Miss Kyrstin back on my side and Mr. Greg and Thorah.. it is weird having sides only because I can’t just get up and walk all over like before but it is all good and I am getting used to it.. But mummy said life is full of changes and to just embrace it and learn something new. So ok although learning new things doesn’t always make me happy … proving myself isn’t something easy for a non-verbal kiddo..

I got my new Buc-ee Grandma paid for … Mummy close friend Michael ran and got it for us and mailed and I love to turn him on and off. He is a halloween one and is about 6 foot tall and watching him deflate cracks me up. Mummy hooked him up to a special plug so I can push a button so I won’t electrocute myself unplugging again…

My friend Kade has been coming over to my house and working out with the Galileo … he is in my class and is only a few days younger than me. Nice to see mummy have a friend she lets me do my thing and doesn’t make me work as hard … I just want to play with Buc-ee…

I have had so many appts lately but Mummy said we are just about done for a while so thank goodness…. Mummy was sick and went to hospital I was very confused why they were checking on her and not on me but I was happy she was ok. I sat and was so good. All the nurses were talking to me and happy to meet me . They work with Daddy and apparently they all knew me.. had no clue how famous I was!!!

We took a road trip to Arkansas to see my nephew Ollie and we got to see my Aunt Teen Teen and my uncle Vaughn and Kevin. It is always fun playing around at her house and Ollie and I were definitely being cheeky and having a lot of fun. Him more than me of course but I did think it was all funny… We all went to eat at McClards afterward in Malvern .. it was good I ate all my burger.. then we headed home b/c daddy and mummy had a contractor finally coming to give an estimate on an add on for my therapy room. BAD part about this road trip is NO BUC-EE.. Road trips just are not ok without stopping to see my beaver!!!

Had my follow up from the GLUE appt with Dr. Carozza so sad he will be leaving Vandy and going to Boston but glad I still have him there with Dr. Pearl and Dr. Sid. He said he can’t get over how amazing my results were and said my brain showed no abnormal activity anymore SAID MY EEG was normal.. what the heck.. normal brain… normal hearing… I am coming right along since my trips to Boston!!! They are piecing me back together it seems… now fix apraxia!! Ugh!!!

Still on a Pony at Saddle up a little disappointed to have to go backward but I really love Miss Stephanie!!! She is soooo sweet… I miss Margo but Carina Is really working hard with us as well.

Well … it has been another month full of appts… birthday’s and busy bee time but it has been rewarding as well. Can’t wait to see what September holds can’t believe it is almost my birthday.. don’t know what I want to do for my birthday but sure it will be Buc-ee related somewhat..

Have a GREAT week… and more to come for SEPTEMBER!!! KLEEFSTRA AWARENESS DAY IS SEPTEMBER 17TH Remember to wear Purple, or your Kleefstra shirt and tag me… if you need a shirt let us know..

Love ,