Wednesday, February 29, 2012

Deacon's Language Update

I put off doing development updates for Deacon because I am always waiting for an event to happen, like doctor appointments, evaluations, medicine changes, etc., so that I can have something definite and concrete to share. I am starting to learn that if I wait for a final result the blog will never get written, so better to write more frequent updates than none at all.

In November we decided to change Deacon from his Topamax prescription to Valproic Acid due to his lack of language/communication (a known side effect of Topamax). During the transition from one medication to the other we saw an increase in his focus, vocal skills, and sound mimicking. But as he weaned off the Topamax and the Valproic Acid increased his new skills gradually disappeared. He have added a prescription of vitamin B6 to see if that helps.

The older Deacon is getting the wider the gap grows between him and his peers. Picking him up from daycare, 18 month old classmates wave saying "bye-bye Deacon" on our way out. Deacon has no idea what "bye-bye" means, or could name any of his friends, let alone his own name. He does make some sounds (ah, ga, la, ma) and can clap, but other than that the only way he communicates is the same as a baby: by crying when upset/tired/hungry and smiling/laughing when happy. Still, I thought he was probably at the communication level of a 12 month old.

In January Deacon had his re-evaluation through ECI. The therapists warned me that they had a new test for measuring his progress and not to be surprised if he scored low because it doesn't take into account vision issues or language delay. I was shocked when results put him at an 8 month old for language. (He is now 2)

Seeing it in black and white sucks. I have had a hard couple of months coming to terms with his long term prognosis, and all this extra time on my hands due to bedrest has really put me in a funk. I have been trying hard to stay optimistic, but the unknown is scary, and the internet makes things appear even scarier. Every night as I lay awake in bed, these are the thoughts that replay over and over in my mind:

Does this get better?
Will it be easier when Bennett gets here and (hopefully) develops "normally?" Or will it break our hearts to see Deacon's little brother surpass him in some areas?
What if something happens to Brian? How could I survive without him?

What if something happens to both of us, who would take on such a huge task of possibly caring for Deacon in his childhood and possibly his adulthood too?
Will Deacon need adult care or will he be able to be independent one day?
Will Deacon be in regular classes when he starts school or will he be in life skills?

After a couple of weeks of this I finally remembered that there is nothing I can do but hand it over to God. I am really good about handing things over to God, the problem is leaving it with him. I like to take it back and stress over it a little more before giving it back to Him again.

Last week a stomach virus hit Deacon that left him not eating/drinking and throwing up for 3 days solid. By the third day we were worried that he had been missing his doses of seizure medicine and went to the ER. Just like a broken car that you take to the shop and is miraculously better, so was our Deacon, who downed a bottle of water and bag of cheetos as we sat in the room waiting to be seen. It took a couple more days for him to recover, but what we noticed was, with less medicine in his system, he has actually been more vocal and focused!

We are now wondering if this illness was a blessing in disguise...maybe his dosage is too high?? Could this be why his language improved with his medication transition, but once he started taking too much it disappeared? We haven't talked to his neurologist yet, but we decided to try continuing Deacon at 5ml twice a day, instead of his prescription of 7.5 to see how it goes. No signs of seizures, but obvious improved cognitive skills!

In the past week he has already picked up so many new skills and just seems "with it." Even his grandparents have noticed the change. He will sit in our laps and play with non-musical toys like balls and blocks and stay focused for longer amounts of time. Deacon is making a couple new sounds (a-ga, s, hi) and can kiss! He even figured out how to drink from a straw! His therapist noticed today too; here is part of the report she wrote:

He is starting to imitate!! Mom would sing "la la la" and pause, Deacon would answer with a very similar sound! Then Mom would wave and he would wave back. Then we started playing a tickle game. We would tickle his tummy and back off. Deacon would laugh and if we paused, he would walk to us and stick out his belly. After a few times he lifted his shirt!! He made great eye contact the entire sessions!

We are keeping our fingers crossed that these new changes are a sign of things to come and making the most of every second he is willing to learn!

Up next: results from a recent EEG and an appointment to Meyer Center for Developmental Pediatrics in April (after a year and a half on the waiting list!).

Monday, February 27, 2012

Carson's New School

Carson has transitioned so well into his new school! I think he is most excited to be a 'bus rider.' He has met so many new kids in our neighborhood from riding, every time I look in our backyard after school there is another new child bouncing on our trampoline. Carson is so thrilled about his new ride and friends, that he now insists on riding in the morning too and, to my delight, doesn't even complain about waking up!

Carson has already participated in a couple of fun activities at school too. His class Valentine Party. (I love that the teacher already knows my guy and put him at a table full of girls to keep him on task!):

Friday was "Go Texan Day" where kids are encouraged to wear western attire. I have never been a big fan of a cowboy, but my cutie may have converted me:
Just a couple of weeks until Spring Break. I hate that I am on bedrest and can't take him to do anything super exciting during his first official Spring Break, but I am thinking he will be more than happy to hang out with all of his new friends. (And I'm sure he will make up for this Spring Break in his college years!)

Wednesday, February 22, 2012

Bennett's Bedding

We have been debating about what to do for Bennett's bedding. The set that we had from Deacon's nursery is still in good condition and already has coordinating paint on the walls. But a part of me has been thinking every baby deserves a nursery with fresh sheets that haven't been thrown up, peed on, etc. by their siblings. Plus, we would still need to purchase new bedding for Deacon to replace what we were giving to Bennett. So, we decided Deacon would use his blankets in the new room and once we move him to a toddler bed, we will get him new stuff. And Bennett will get a fresh new set!

I am not a big fan of nurseries that feel too themed. I didn't want cars or animals, just a simple, modern pattern. Because I am home on bedrest, and my checks could stop at any time, we have tried to keep a tight budget, making cost important. Also, after all the hard work Brian put into the new room, I was hoping to find a color scheme that matches the walls that we already have.

We totally lucked out when I just happened to come across the PERFECT bedding at Target! It is simple and contains the colors baby blue and brown. Best of all it was on clearance for $39.98, regular price $79.99, AND free shipping!
Deacon is splitting his nights between his new room and the old one, like when Carson has friends staying the night, or we have a feeling Deacon might be waking at night with a cough. Bennett will also be sleeping in a bassinet the first couple of months in our room, so I am not sure when we will actually start preparing the actual nursery...

Monday, February 20, 2012

Garage Conversion

I don't think I have ever been prouder of my husband and am so thrilled to finally be able to show off all of his hard work from the past few months!

After finding out we were expecting a third child we spent a lot of time debating what to do about our living situation. We have lived in our 1,550 sq ft, 3 bedroom house for five years. When we moved in we had only Carson, and plenty of room to spare. Then, Deacon came along and our spare bedroom turned into a nursery. The furniture got dispersed throughout our house and attic along with all the random junk that the room held. We have fit comfortably into our home, but started to feel a little cramped with all the stuff we have accumulated through the years. And surprise: another pregnancy! Although we have some equity in the house now, the housing market sucks. We are afraid if we sell we will only break even, or worse, be in the hole.

We love our house; it is less than ten years old and is in a great neighborhood with lots of young families. When my aunt suggested that we consider converting the garage into another room, we started doing some research. We had about $3,000 to spend and decided we would go for it. Having a handy husband, who also knew a contractor helped us to cut costs. After about two months of work, mostly done on the weekends, we are about finished (with just a little more decorating and paint touch-ups) and it could not look more amazing!

We wanted to keep part of the garage for storage, so decided to build a wall that runs parallel to the garage door, which is still able to be opened, leaving the exterior of our house looking exactly the same.

I tried to keep up with pictures throughout the project (some are taken with my phone). I thought I took a picture of the garage before we started, but can't seem to find it. So here it began, framing (cost break-down is listed at the end): When framing was finished, the contractors took a couple of days off so that Brian could run the wiring for lights in the closet (the contractors built that too) and additional electrical outlets. Our garage only had one outlet; Brian added five more.
When he finished the wiring, the contractors came back to do the taping and floating. (I learned so many new terms!)
And then they textured:

Once the doors were installed and texturing was finished, so were our contractors! From that point on, Brian did all the work, with some help from our neighbor and family. He painted the ceiling, installed ceiling fans, ran air duct and vent, and put additional insulation in the attic:

My nephew, Ethan, spent a night and helped paint the walls.
Our neighbors are absolutely amazing! They traded services with someone and got laminate flooring for their house. After installing it in their dining room, they decided they didn't like it and replaced it with a different type. Since then, the flooring was stacked up at their house not being used. When they found out about our project, they GAVE it to us!! It saved us a chunk of change and it looks perfect in the room!After telling him what I wanted, Brian built the shelving in the closet. (I love that I come up with the ideas and he can execute them!)

When the floors and closet were complete, we finished up the project with beadboard panels! They really are my favorite part of the room and make it feel homey.

All that was left was decorating and cleaning! I am blown away by Carson and Deacon's new football-themed bedroom!!

We have a few things to hang on the walls (bookshelves and the boys names), but I couldn't wait any longer to share! There is SO much room for both guys, while still having the fun of sharing a bedroom!
Carson's clothes and toys have already been moved in, but there is still plenty of space for Deacon's stuff.
I think Brian and Carson's favorite part of the room is the extra touch Brian added: a 4ft x 6ft projection screen. We had a projector sitting in one of our closets, so Brian mounted it to the ceiling and ran wires through the attic and into the walls by the closet, along with surround sound speakers. There isn't any cable running to the projector, but the xbox is connected to it, allowing the boys to watch movies and play video games on a huge screen!
We also debated about whether or not to install a door leading to the garage. Brian wanted one added so that the boys would have an additional way to get out in the event of a fire, and it is nice to still be able to access the freezer in the garage from inside the house. (Door leading to the garage on the left, entrance to their bedroom on the right)
I am almost jealous of our big boys new 21ft x 15ft suite! It is wonderful to have so much more room in our house, and I think Carson loves having his room with a view to the living room when he falls asleep at night.

We are also thankful that our project came out just under $3k.

Monday, February 13, 2012

Deacon's 2nd Birthday Party

Deacon's 2nd birthday at Little Gym turned out fabulous! Because Deacon loves music so much, we decided to go with a rock 'n roll theme and it suited him perfectly.

His party started at 5:30pm, so we were able to get two naps in on Saturday, thinking that would have him well rested. Unfortunately, he has been battling a runny nose and cough and decided not to eat very much all day, putting him in a less than stellar mood when the party started.

But, as the party got going, so did he!! He LOVES Little Gym, the music, and being able to climb on everything.

He also had an amazing turn out with kids of all ages!!

I wasn't sure if this party would be geared more towards the little ones, but it wasn't! The big kids had just as much fun, if not more!

The first part of the party was free play, where everyone got to do their own thing. Then it was structured play, where Deacon participated in his favorite activity: the parachute!
He laughed and smiled more than any kid at the party!
Since he was the birthday boy, they put him in the middle while the guests circled him and shook the parachute singing "Happy Birthday."
He was so thrilled, he had us all laughing along with him!

Then, they let the other little ones on to join him!

And the big kids got to go underneath while the adults covered them up.

After the parachute came the inflatable bouncer.
I tried to get some pictures, but with all the jumping the kids all looked like blurs.
Finally came the bubbles, and again, even the big kiddos were excited!

When everyone had spent their energy it was time for pizza and cake!

By the time the presents were opening, we only had about 10 minutes left of the party and Deacon was exhausted!

His favorite present of the evening was this cuddly tiger:
To speed the unwrapping up, we asked Carson to help, which he did gladly, along with some friends. The opening went so quickly we lost track of who gave what (and even found some gifts I hadn't seen when we got home)!
As the party ended, everyone picked up their goody bags!

Each guest received inflatable guitars, rubber spike bracelets, rocker sunglasses and pop rocks candy.
And as you probably guessed, Deacon was down for the count by the time we loaded up and got home!