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!).

ECI Update

While we wait for Deacon's 24 hour EEG (scheduled April 4th), we are definitely utilizing his Early Childhood Intervention services! The picture above shows some of the goodies they have given us for Deacon to use. The item around his neck is called a chewy tube and is basically a baby chew toy to keep him from gnawing on his clothes while he is teething. On his hands are thumb splints. One of the things we have learned is that many children with neurological issues have a habit of tucking their thumbs inside their fists, which interferes with fine motor skills like pinching and grasping items. The splints keep him from tucking his thumbs in, but allow him to hold stuff. He is supposed to wear these at least 8 hours a day, but he actually likes them (he must think they are another item to chew on, and with 2 new teeth arriving this week they have come in handy). We have already seen improvement in him holding cookies and his bottle.

Deacon's newest service, Vision, is provided by our school district, but they keep in close contact with ECI. We were given district enrollment paperwork and it feels so strange to be filling it out for our 1 year old, instead of our 5 year old!

I have heard fabulous things about his VI teacher, who services some children at Deacon's daycare, including the directors grandson. She already knew who Deacon was, and has peeked in on him a couple of times before he was officially added to her caseload. Last week she did her formal observation and sent me an email about her first impressions:

Wanted to let you know that I worked with Mr. Deacon this morning. First of all, he is so precious! I worked with him in the "barn" and noticed some great things. I will, of course, write up a report that I will send to you, but wanted to give you some quick things that I noticed. First, I noticed that peripheral vision on left side seems somewhat delayed which could account for the bumps on the head most often on that side. [It amazes me that she said the same thing the neurologist told us about the spasms happening in the right side of the occipital lobe, where left vision is effected.]

Next, he appeared to be most interested in toys with lights when the overhead lights were off. In this unfamiliar environment of "the barn" he was not quite as willing to walk around like in his familiar classroom. That's okay and can work towards his benefit. Since he's not sure of new environments, this behavior will keep him safe....that smart boy has figured that out.

Also, I noticed a sudden "drop down" where he was standing and got on almost all fours in a very quick motion. I don't feel like this is balance, but him trying to figure out where he is in space and feeling most comfortable with this constant contact (think of being on a cliff and looking over, you would drop to all fours to keep a better sense of where you are...I'll explain this one in person).

When she called, she said that Cortical Visual Impairment is a spectrum and he appears to be on the better end, especially in that he is walking and many kids with this don't. She also told us that with intervention other parts of his brain can learn to compensate for his vision and we will see a big improvement.

She will also be referring Deacon to the Orientation and Mobility Specialist, who helps Deacon learn to move around safely. If he qualifies, he will be up to FOUR visitors each week! I can't even begin to say how completely grateful we have been to this program and the information and suggestions they have given us already.