So, things have been pretty crazy and busy in our household since the last post in October. The biggest change is that Jackson has started speech/feeding therapy. With adding ST, Jackson now has some sort of therapy 4 out of 5 days a week! Another big change is that all of Jackson's therapies, except one PT session, is now at the therapy location instead of at home. You wouldn't think that adding a new therapy and changing the location of where the therapies occur would be such a big adjustment, but it has definitely been tough.
With the changes, I've been having a hard time with my anxiety, feeling overwhelmed, and having a sense of being "off." I finally went to the doctor and got prescribed some medicine to get me back on track. Definitely ready to feel like myself again, especially since Christmas is right around the corner.
Jackson seems to really enjoy going to the clinic three times a week for his various therapies. He absolutely LOVES the big ball pit that they have in the gym! Even though it's been a tough adjustment, I like that we are getting out of the house more, even if it is just for therapy. I also like that Jackson is getting exposed to more children and adults. One of my New Year's Revolutions this year is to get Jackson out and about more. More play dates, more trips to the zoo, more out of house and interacting with others.
Speaking of play dates, Jackson and I took a trip to the pumpkin patch. We went with another mama and her son who also has spina bifida and is only two months younger than Jackson, and met Jackson's physical therapist there. I haven't been to a pumpkin patch in years, so I was really excited. It was on the smaller side, but there was quite a bit to do. I was shocked at how cheap everything was. We were able to do a lot of the activities for under $20. Jackson seemed to enjoy the tractor ride, liked touching the pumpkins, and absolutely LOVED the corn pit. He ended up getting mad when it was time to leave the corn pit and boy, did he let me know that he wasn't happy and wanted to go back in. He picked out his own pumpkin and if he had his way, would have gotten twenty more. Overall, it was a great time and I can't wait to take him next year!
Jackson and I made a trip to the zoo with a teacher friend, her daughter, and a little boy that she babysits during the week. It ended up being a beautiful day! The zoo has been doing some renovations and this was our first trip where the entrance was completed. The zoo looked completely different and I loved all the updates. Jackson stayed awake the entire time and was interested in the animals. Every once in awhile, the kids would "talk" to each other which was super cute.
Using a push walker, Jackson walked from the couch to the TV all by himself! I didn't have to cue him or anything. All I did was hold on to the walker to make sure that it didn't take off on him. It was absolutely amazing! Many, many tears were shed and loud, loud cheers were shouted. Jackson wants to walk so badly, it is very obvious and he is so determined.
Jackson had wheelchair clinic to get him fitted for a wheelchair. We got to try out three different kinds of wheelchairs to see which one fit him the best. We ended up going with a Little Wave Clik, which is pictured, but it will be Jackson sized. This wheelchair has an intuitive adjustment system designed to provide accurate, easy growth options and the Clik Offset frame allows more room for abducted position, AFO's and braces while facilitating proper foot positioning. While it is exciting that Jackson is going to have more options for his mobility, it wasn't easy by any means picking out the wheelchair. It was extremely emotional and I imagine that I'll be a mess when it's delivered at the beginning of the year.
7 months after first applying, we finally got the letter stating that insurance was going to approve Jackson's stander! A couple of weeks after getting the letter, Jackson's stander was delivered. It was so exciting! The gentleman got Jackson in the stander, got all the straps and everything perfect, and unlocked the brakes... Guess what happened?!?! Jackson started wheeling himself forward! It was amazing! It was like he knew exactly what to do, like no time had passed since his wheelchair evaluation. Ever since then, he's been wheeling himself around the entire house. He's figured out how to open the drawers and dishwasher - Watch out! There's no stopping him now!
Since the weather has finally started cooling off, the leaves have started to fall, and boy do we have a ton in our yard! Once enough leaves fell, I decided that Jackson needed to play in them. As soon as I sat him down, he started picking up leaves and letting them fall down towards the ground. After showing him a couple of times, he eventually picked up hands full of leaves and threw them up in the air. He seemed to really enjoy playing in the leaves. He is definitely an outside kiddo and loves to be outside whenever possible.
Since it was determined that Jackson was aspirating liquids, we got him evaluated for feeding therapy. Through TEIS, TN's early intervention program, Jackson started feeding therapy and since he has other things going on, they also agreed to go ahead and start speech therapy at the same time. So far, so good. It took a couple of sessions, but he finally opened up to his therapist and let his true Jackson self show. From the speech evaluation, we learned that Jackson is behind about 6 months. Hearing that he was so far behind wasn't easy to hear, especially to a teacher. I took it kind of hard, but after speaking with his speech therapist and his occupational therapist, I feel better and know that Jackson is just taking his time and doing things on his own term. While he is behind in "speaking," he's advanced in "social skills."
While Jackson isn't saying much, yet, he has started saying a couple more words! He has mastered mama, dada, bye-bye, and nana. He has learned several more signs and is great at communicating in his own way. Even though he isn't "saying" what he wants, he's great at "telling" us in his own way. Don't get me wrong, it's tough some times, but for the most part, we can figure out what he wants/needs fairly quickly.
There is a great program called United Cerebral Palsy and they have a location in Nashville. They provide services to individuals of all ages who have a variety of disabilities with focus on disabilities that primarily affect mobility. Through UCP, we were able to get Jackson a posterior walker! They have a program that allows individuals to borrow equipment, such as, wheelchairs, scooters, grab bars, walkers, bath benches, toilet chairs, specialized strollers and car seats, bed rails, prone standers, gait trainers, etc at no cost to the individual! It's absolutely amazing! Jackson and I met Courtney (PT) at UCP one day and we lucked out and they had a posterior walker that was perfect for Jackson. Courtney stood him in the walker and he immediately started taking steps! He walked for quite some time in the UCP office before getting tired.
Since getting the posterior walker, Jackson walks around the house all the time! Jackson is getting better and better at walking, but he does get tired fairly quickly. However, his determination is amazing. He gets himself stuck in corners or against the wall, so we're working on turning which he thinks is hilarious, because it requires him to pick the walker up and it always makes a funny noise when he puts it back down. :)
Jackson has become a master at climbing up the stairs without his braces/cables on. We now have to put the kiddie gate up every time that we are downstairs because if we don't, Jackson will be half way up before you even realize it. He's super fast! As with crawling, he struggles with going up the stairs with his braces/cables on, so that's a work in progress.
The braces/cables are exactly what Jackson needed to be able to walk, but they sure have been a pain in the butt since day one! With them, Jackson is much slower at crawling, which frustrates him, the belt is tight around his waist, which aggravates him, and he has broken all four rivets, which means that we've spent a lot of time at the orthotic place. We have pretty much been to the orthotic place once a week since we picked the braces/cables up. While those things are frustrating, I have to keep in mind how great they are and that without them, Jackson wouldn't be walking.
We didn't do much for Halloween last year because it was cold and raining. This year, it was hot and I wanted to take Jackson trick or treating! Jackson was supposed to be a pumpkin this year, but he wasn't having any part of it. Thankfully, my parents bought him a bikers costume last year for fun and it fit! We went over to Matt's mom's and stepdad's neighborhood to go trick or treating. Shawn, Jackson's Poppy, dressed up as Paul Stanley from Kiss. Jackson wasn't too sure about Shawn at first because of all the makeup, but he eventually warmed up to him. Shawn was an absolute hit in the neighborhood and he even walked around with is own personal radio blasting Kiss songs! Jackson loaded up on candy... It's a shame he's too young to eat candy! :)
We made the trip to IL to visit family for Thanksgiving. Jackson was much more alert, awake, and made it known that he was done with sitting in the car seat compared to last year. As always, it was a wonderful time and it was great being able to see my family. Jackson did great with there being so many people around. He even showed everyone his walking skills and how great his personality is.
When we got back from IL, Matt and I put up our Christmas tree and decorated the house. Last year, we only put up a little tree on Christmas day due to the fur babies. This year, I was determined that Jackson was going to have a tree. We got it set up, Matt taped the cord so that the cats wouldn't mess with it, and we stepped back to see what would happen. So far, so good! The cats have actually decided that they enjoy sleeping under the tree. The only time that I have seen them mess with the tree is when they are using a branch to scratch their chins. Jackson likes to look at the lights and found that it's fun going underneath the tree and circling around it. I tried putting Christmas presents under the tree, but that didn't work out too well due to Jackson deciding that they were his and that he wanted to open them. Christmas should be so much fun this year in regards to him wanting to open presents.
Jackson has four teeth on top and two on the bottom. Matt and I are really wondering when he's going to get some more teeth, but until then, he's figuring out how to use the ones that he has. He loves to brush his teeth and gets upset when I take the tooth brush away. He has started giving a "cheesy" smile that is absolutely hilarious and so stinking cute.
During occupational therapy one day, his therapist let Jackson play with play-doh and his face lit up with excitement. So, what's a mom to do? Why, buy her son his own set of play-doh of course! He plays with the play-doh on a daily basis and will get upset if you tell him "no" or "not right now." My kid has quite the temper when he doesn't get his way. Look out terrible-twos!
I always worried about Jackson not being a good sharer since he doesn't have any siblings or the need to share with anyone, like at daycare, but he is the best sharer! He shares with us and the cats! He's getting pretty good at helping with putting his toys away. However, if he doesn't want to put his toys away, he isn't going to. Nor will he allow anyone else to put them away. He will take everything back out, dump the container, whatever needs to be done to get his toys back and will make it known that he wasn't done playing.
Well, I think that about does it for this blog post. Matt, Jackson, and I would like to wish everyone a very Merry Christmas and a Happy New Year!
Warmest wishes,
Crystal
