UPDATES!!!

Wow!  It has been a long time since my last update to the blog.  Declan has made such strides, it is truly amazing.

First off, he is no longer using his walker.  He walks and runs (!) totally independently.  He has conquered steep hills (both up and down) and is even taking stairs on his own here and there.  His mobility has progressed far beyond what was ever expected and he is only two and a half years old.

Declan is all boy and is kicking balls and throwing everything.  He still enjoys wrestling tremendously and continues to torment his sisters with attempts at choke slams and pile drivers.  They have been given a break, however, with the arrival of his John Cena pillow, who now gets the brunt of his maneuvers.  However, nothing is safe… he has yet to meet a stuffed animal or baby doll that has not been given an ‘AA’ (a move that he now says and has perfected).  He has, thankfully, developed some other interests outside of wrestling, including cars, minecraft and Scooby Doo.

We continue to work on Declan’s tone, as his hips and legs, as well as his arms continue to exhibit spasticity.  He is a trooper though, allowing his therapists to contort him in any way they see fit (for certain periods of time, of course).  He is going to be getting new, shorter DAFOs to help with issues with his left foot, which continues to turn in and drags as he becomes more fatigued.

We have been working very hard on Declan’s speech, something that has been growing by leaps and bounds lately.  It seems he has a new word every day.  Some of them only we understand, but most are very clear.  Examples include, car, deer, buck, pig, juice (very clear!) and please.  He even says the ‘pl’ blend, instead of ‘pease’, as most young children do.  He knows his colors and, based on how often he requests it, his favorite seems to be green (geen).  His imitation is fantastic and he will typically attempt to say any word you ask him to. He has even begun putting together two works, such as ‘all done’ or ‘I’m in’.

He has become much more affectionate, as well, asking for hugs and kisses and requesting to cuddle.  He still loves his Rey-Rey the most and is often by her side, something that I feel has really helped his progression, as she doesn’t let him take the easy way out.  His sisters are phenomenal.

All in all, I cannot believe everything he has accomplished sometimes.  I am often brought to tears by his sheer will and determination.  I used to fear so much, and now I know there is no reason to.  Declan will be just fine.

Updates

There really isn’t much more to say right now, except that Declan has been getting up and walking on his own more and more…with and without his braces and shoes.  He still isn’t speaking much, but is making great sounds.

We took a month off from therapy, to give up both a break and we’ve switched up some of the therapists, as Declan seemed to begin recognizing some of them as ‘work’.  We’ve had far fewer tantrums and more actual work put in now that he has a few new therapists.

Otherwise, he’s doing great.  He is getting better at self feeding, drinking from an open cup, with some assistance, and still all about WWE.  We are currently watching the Scooby Doo/WWE collaboration movie.  Next, we will watch the Flinstones one. Someone save me from WWE!!

Declan went to a WWE wrestling match!

As part of his Christmas present, we bought a few tickets to a WWE match being held close to our house.  Declan’s favorite, John Cena was going to be there.  We got seats that were right along the walkway where the wrestlers walked out to the ring. Declan loved it!  He was so excited as soon as he saw the ring (so I’ve heard…I wasn’t there, my husband and his friend took him).  He flipped out when Dolph Ziggler came out, he recognized him and his music.  On his way back, after his match, he gave Declan a high-five.  He was also very lucky to get a little time with both Uso brothers, one of which you can see in a picture below.  John Cena was the last of the night, and by that time, Declan was a bit sleepy, so he wasn’t as excited about seeing him as we would have hoped.  And, unfortunately, he didn’t interact with any fans going to or coming back from the ring.  But, Declan had a great time!

IMG_6980 IMG_5207

He has started standing up in the middle of the floor and imitating the wrestlers, which leads to a few independent steps.  He is working on stepping up using something his PT put together – just some magazines stacked and taped.  He can step up on them, or walk up and over using his walker.  He’s learning and doing so much.

We have been working on the communication device, but so far, he still sees it as more of a toy and he likes to just push the buttons and hear the noises.  I have gotten him to use it to ask for a lollipop once.  It will take time, there’s a learning curve for me, so I can’t imagine how hard it is for him to grasp.

That’s about it for now.  Hope everyone had a happy new year!

Speech Evaluation and Declan’s love of Wrestling (mainly John Cena)

Hello! I am a little overdue with this post, but I didn’t have too much to add since the last one.

The Sunday before Thanksgiving, we set off to Pittsburgh (about a 3.5 hour drive) to meet with speech evaluators at the iCanTalk clinic. They are a wonderful group of people who evaluate individuals over the course of a few days to determine if they would be good candidates for a speech assistance device.

After dropping his sisters off with their grandparents, Declan, his father and I set off on our journey. He did fairly well with the ride…only crying for a short period before he put himself to sleep. For the rest of the ride, he played with his wrestling action figures, which required me to turn around and try to get them off the floor several times. They like to fly.

We got to the hotel and settled in, nervous for our appointment at 10:30 the following Monday morning. We weren’t sure what to expect, but had been told we should leave an hour early for what is essentially a 10 mile drive. I’m glad we did! We hit almost every red light on the ride in and had to circle several blocks to check out the best parking situation.

Once we arrived, we were told that they would essentially be evaluating Declan just by playing with him and watching him. They observed his motor skills, asked him to pick items out of a line up and attempted to grasp his sense of understanding of language. For example, there were two baby dolls. The evaluator called one ‘hers’ and the other one was ‘Declan’s’. She asked him to give her the baby that was ‘hers’. They also observed the sounds he made, signs he does, and the few words he does say (at this point he says, ‘mama’, ‘dada’, ‘ball’ and ‘ray-ra’, which means Regan, his sister).

After a few hours, we were sent back to the hotel to eat and allow Declan a nap (he declined), and an evaluator met us in our room several hours later to show us some iPad apps that could be used instead of a dedicated device. There are pros and cons to using an iPad. One pro is that you don’t have to go through insurance, and if you already have one, the only cost is the language app. Also, most children are familiar with them at a young age. However, they are not loud enough, necessitating the need for special speakers, the apps are very expensive, and children are familiar with them at a young age…essentially, they already associate them with game playing, not as a tool for communication.

After the evaluator left, we were on our own for the night and decided to check out the mall across the street. They have a nice little play area for kids, so we let Declan crawl around in there for a while, then had dinner at Red Robin. The balloon he received at the end (he just called it ball) was the highlight of his trip.

The next day we returned to the mall and met the evaluator and a Doctor at the Barnes and Noble to show Declan the dedicated Augmentative and Alternative Communication (AAC) Prentke Romich Company (PRC) device. The apps we were shown on the iPad used pages and pages of words, so essentially, the child would have to continually scroll to find the word they want, and making sentences could take a substantial amount of time. The PRC device uses a system that relies more on hieroglyphics. There is a main screen with a customizable number of buttons (dependent on the child’s fine motor skills and ability to hit smaller or larger buttons). One Egyptian Hieroglyph could have many meanings, decipherable by the others around around it. So, if Declan were to hit one of the pictures on the main screen, it would open a second screen that would have buttons related in several different ways to the first one, making it easier to put sentences together.

We bought Declan a cookie and sat down for a demo of the device. Within minutes, he was able to say ‘eat cookie’ using the device. We decided to go with this device. Of course, it requires several letters to be written requesting it, letters of medical necessity and then a lengthy insurance process. He may get one in several weeks.

I find this whole process a bit infuriating to tell the truth. My child cannot tell my he loves me (with words, he does hug), and I feel communication is a basic human right and there simply shouldn’t be so much red tape and run around to afford a child the opportunity to state his needs, wants and feelings. State capital, get ready…I’m on my way.

So, that was the higher points of our trip. We made it back, picked up our girls and headed home for a nice Thanksgiving meal with friends.

Now, on to Declan’s obsession with wrestling. A few years ago, we decided to buy the Royal Rumble pay per view because I heard The Rock was coming back. From then on, we watched every Raw and Smack Down and Declan grew more and more fascinated by it. I actually credit it with helping him with some of his motor skills. He climbs his dad and tries to wrestle his sisters. It keeps him muscles loose without such a need for traditional stretching.

His main love in wrestling is a wrestler named John Cena. Declan does not give kisses. I have tried and tried to show him how to blow kisses and tried and tried to get him to give me kisses. No dice. But, you know what he does do? Every time John Cena comes on the screen, he pops up, dances a bit and waves his hand in front of his face, imitating John Cena’s ‘You Can’t See Me’ gesture. When we were in Pittsburgh, we were able to watch the Survivor Series pay per view because we have the WWE network (of course). Here is a video of Declan reacting to John Cena.

Every morning, after breakfast, he requests to watch wrestling.  He does this by putting his hands in fists and raising them up in the air (like a body builder making muscles).  Or, sometimes, he points a finger and puts his arm up and down over and over in the Daniel Bryan ‘Yes’ movement.  I apologize to those of you who don’t watch wrestling and have no idea what I’m talking about, but this stuff gives Declan life.  I think in a year or so, we will take him to a match.  They come to an arena close to our home.

So, that’s what’s been going on with Declan.  Hopefully we will have his speech device in a few months.  In the meantime, I’m thankful for multiple televisions and netflix on my phone, because, while I love wrestling, I don’t love it as much as my son does.

New Walker

Declan received his very own, made to size walker this week.  Within a few minutes he picked it right up and was off all around the house, down the sidewalks and in everyone’s yards.  He quickly discovered how to lift it up to get over slight bumps and, as this one has rotating front wheels, he can turn with no trouble.  It has a safety feature that keeps it from going backwards, so if he stops on a hill and lets go, it won’t just roll away from him, leaving him to fall on his butt.

How well he is doing pretty much speaks for itself with the below videos.  The first video is his first day with it.  The second is a few days later.

 

Shoes…Again

I can’t believe I forgot to point out his shoes in the walking post that I posted earlier today!  I meant to.  I decided to take Declan to a shoe store to try on some Vans.  People had told me that they worked fairly well with the braces because of their width.  Well, the store didn’t have many in at that time and the salesman told me that he’d seen people have luck with Converse.  Good old Chuck Taylors.  I can’t believe that I didn’t think of trying them before.  The upper parts of them are pretty much just thin (but durable) fabric, so I just have to open them up wide, pull the tongue the whole way out and then pull the sides up one at a time.  They fit very well.  I was able to get him a toddler size 6, which is the size his braces are, so he isn’t tripping over shoes that are much too big, and they look like regular sneakers because I am able to tie them completely, whereas, with the velcro shoes, I can’t get them fully closed and they look bigger than they are on top.  So, there you have it.  I will be getting him Converse from now on, I think.