Class Pictures

I love that the boys daycare did class pictures, and they turned out adorable!

I realized I haven't updated on Carson's relationship status lately! Last time Carson was still planning to marry Maya, but oh how things change in preschool! One of the little girls in their class told Maya that Carson had another girlfriend, so she broke up with him! haha

It didn't take long for Carson to move on. Remember Alyssa?? She is the new "woman" in the picture. Carson has now decided to marry her instead! (Not sure how this long-distance relationship will work, seeing as Carson withdrew from daycare and they won't be going to the same elementary...lol)

2 steps forward...

1 step back.

Well, more like a giant leap back.

Today was Deacon's check-up with his neurologist. Dr. Foster is the 5th neurologist we have had experience with, the first who wasn't connected to Texas Children's Hospital, and the only one we have loved. He shows a real interest in Deacon and strives to find a cause, even when the seizures seem to have disappeared with medication. The doctor said he has thought about Deacon since his last appointment because his case is so perplexing. He still doesn't fit into any cookie cutter epilepsy diagnosis, so we are going to do a few more genetics tests.

Dr. Foster asked lots of questions about development and was most concerned with Deacon's speech. I told him we had been waiting for his hearing test, and when that was completed we hadn't heard anything about the Speech Evaluation from ECI. He suggested Deacon be evaluated and start receiving services.

He asked if Deacon had been diagnosed with autism before. I told him about our first visit to his pediatrician when this all began and our original concern for autism, but with the epilepsy and vision issues, they seemed like a likely explanation for the autism symptoms. He said that with Deacon's limited vocabulary, verbal, and non-verbal language; lack of initiated interaction and imaginative play; and some repetitive behavior leads him to believe Deacon has AUTISM.

Ugh.

It seems like the visits that the initial bad news has been given are the times that I tell Brian not to bother taking off work, and I take Deacon alone.

The wind was knocked out of me.

Dr. Foster thinks the autism is caused by the epilepsy, so there is hope that his improvement will exceed that of a typical child with autism who has no other symptoms or cause, and by the time he is 8 or so he may not have any issues. He was impressed with Deacon's eye contact, smiling, and improvement since the seizures stopped.

When I called Deacon's ECI Case Manager after his appointment, she was surprised by the news, especially with all of the vision issues, so I am eager to hear from his Vision Specialist and Neuro-Opthamologist as to their opinions. We are also about 6 months in on the one year waiting list for Meyer Center for Developmental Pediatrics where Developmental Specialists will weigh in.

The news sucks, but my faith couldn't be stronger. The first thing I did when we got in the car was open up the Bible App on my phone, to the verses that have reminded me of God's promise:

My friends, be glad, even if you have a lot of trouble. You know that you learn to endure by having your faith tested. But you must learn to endure everything, so that you will be completely mature and not lacking in anything...God will bless you, if you don't give up when your faith is being tested. He will reward you with a glorious life, just as he rewards everyone who loves him.

James 1: 2-4;12

God has gotten us this far and I have no doubt that Deacon is exactly as he should be. I also know that Deacon has conquered all other labels assigned to him and continues to amaze us every day with his improvement.

Please continue to pray.

How's Deacon?

We get this question pretty often from our wonderful friends and family, and still haven't figured out how to answer it.

I've been waiting to give an update on here of Deacon's progress. Waiting on what, I'm not sure... Maybe for a professional to tell us he is cured? Or for him to hit every milestone that his peers have?

There is no algorithm for predicting his future, only time will tell. So more wait and see? You got it.

But, I can share Deacon's accomplishments and things we are still working on, along with feedback from his therapists (doctor appointments are later in the month). The gals, aka his therapists, say that as long as he continues to show improvement, they are optimistic, it is when his development plateaus that they get concerned.

Fine Motor:

• Deacon is holding his bottle while in an upright position much more often! We have found that he can hold on to the smaller bottles much easier, so while in his high chair or car seat he is rockin' it by himself! Therapists introduced a sippie cup with straw this week to start working on.



• Mealtime has been more fun too, now that he isn't such a picky eater! After getting over a 3 week stomach bug (which may be an allergy to bananas, but I am scared to test) Deacon has started to really get into trying new food. His pincer grasp (thumb and pointer finger) has improved, but he is more successful with larger snacks like fish sticks, cookies, corn on the cob, or french toast sticks, all of which he loves!



• I don't know if this should go under fine motor or social, but Deacon is starting to PLAY with toys!! His therapists are so impressed that he doesn't just put toys in his mouth now, he shakes rattles, pushes buttons for lights and music, and as you have seen from a previous post, pulls off his diaper!
  
  Social/Emotional:


• This is what gets me so excited! Deacon's demeanor has changed so much since the seizures stopped! He laughs all the time now, especially when being tickled, bouncing, playing in the bath tub, or just watching other kids.
  


• He also makes lots of eye contact and smiles so much! His face will light up when he recognizes someone, and he has gotten very interested in observing people around him. He still doesn't have stranger or separation anxiety, but he does seem to notice when he is left alone, especially at bedtime.



• Deacon gets enjoyment out of so many more activities! He loves music, making his favorite show The Fresh Beat Band, which he watches while clapping and dancing. He also found a love for sprinklers just in time for summer!

Gross Motor:

• Deacon has never had a problem in this area, but he continues to excel! He is quite the adventurer and has moved on to climbing on any and everything. He loves the trampoline he received for his birthday and spends most of his time climbing on and off, hanging from the side, flipping it over, and every once in a while, actually using it for its intended purpose: to bounce. Our little explorer has also discovered how to climb in and out of the bathtub and onto the couch.
  


• At the suggestion of his vision therapist, last week we signed Deacon up for Little Gym, where he is learning to climb stairs, roll, walk on balance beams, run, throw and jump! He LOVED his first class.

Language:

• Lots of sounds and words are coming back now, and Deacon practices making new noises every day! He says "mama" constantly, but will also say "dada" and "bubba" and is more verbal around us, instead of just when he is alone.
  


• His favorite place to practice talking is in our bathrooms! You can hear him on the other side of the house yelling from the bathroom, and the only reason we can think is that it kind of echos in the open space.

Medical:

• Okay, well I said Deacon's social abilities are the most exciting, but I'm thinking medical trumps it! Deacon's days of seizures stopped on April 4th, since then Brian and I haven't seen a single one, while his daycare reported seeing around 5 or so total during the past two months and that was during the time that he had the stomach junk and wasn't able to take/keep down his medicine! We are elated!! No more bruises on his head or need for helmet consideration!!
  


• Vision. In the midst of all the diagnosis and mis-diagnosis we received, I realized that I never really spelled it out for y'all on the blog: with his CVI, Deacon is diagnosed LEGALLY BLIND. Looking back, it reminds me what state of mind we were in. Our child being diagnosed BLIND wasn't even a glitch on the radar with all the other battles we were dealing with. I remember Brian and I thinking early on that with all of horrific prognosis given for other diagnosis, him being blind was one of the best-case-scenario explanations. His doctor did say his vision would improve significantly when the seizures stopped, and we have seen that, but we are interested to hear how much improvement there has been during his appointment on the 24th.

Have I mentioned how grateful we are?? We have not taken a single accomplishment for granted and praise God every day for the miracles He has given our family. I am thankful to have the summer off to help Deacon meet his potential, whatever that may be. Our main goals are responding to directives, like coming to us when called, more fine motor skills to help him eat independently and drink from a cup, and initiating contact with others.

Whew, I guess I won't wait so long next time to update; I had lots to say and still have much more to share!

Our Little Barry Sanders

Carson had one heck of a first season in flag football! Not only did he receive the first MVP award, but his team, the Steelers, beat out 7 others to be named Superbowl champions for the Peewee Division!!

Here are his stats for the season:

Rush Touchdowns: 1

Extra Points: 1

2 Pt. Conversions: 2

Points: 11

Rush Attempts: 10

Flag Pulls: 4

They're Coming...

As you may have noticed my blogging has slowed considerably... With the end of the school year, two kiddos, and a scanner needing software to be reinstalled, I have been slacking! Now that summer is here, I will be playing catch up! Lots of stuff to post about the boys, incredible resources we have found, and other miscellaneous stuff. I'm pretty sure you will be sick of me by the end of the month.

Bright & Shiny

Guess who learned how to take his diaper off??

Summer Reading

Let me start with one of the most overused phrases ever: "Don't judge a book by its cover"

Now saying that, I still have such a hard time practicing this. Publishers spend tons of money creating covers for books to grab your attention from the shelves. I am an avid "Chick-lit" reader, so when I search the library for a new read I hit up the fiction section looking for bright colored spines and cutesy cartoon-esque illustrations. If they don't jump out at me, they are overlooked.

A friend of mine insisted I read this book:

ummm...not necessarily screaming "read me." It sort of looks like a cheesy romance novel.

I took it home not thinking I would waste my few minutes of quiet time at night cracking this snore-fest open.

The school year started wrapping up and my friend asked if I would be reading and returning her book before summer. That night, while soaking in the tub, I figured I would at least give the first chapter a chance.

Life changing.

Besides the bible, it is the best book I have EVER read. This novel has made me want to be a more forgiving, less judging person, as well as a stronger Christian.

(I'm obviously no author, so I'm warning you that my description will not give it justice.) The story takes place during the Gold Rush of 1850 with Angel, who has had a tough life and because of this is unable to trust men, and Michael, a Christian who learns that Angel is the one that God has called him to love. It is a biblically-based fiction novel that illustrates unconditional love, the importance of forgiveness, and the changes that happen when you surrender to God.

As soon as I finished the last page I immediately got online and ordered three copies from amazon to give as gifts and am now waiting for them to arrive.

For those of you looking for a good read, here it is. :)