Thursday, June 30, 2011
Saturday, June 25, 2011
I don't know if your movie theaters are doing this, but they have started providing a variety of free flavored popcorn seasoning in Texas. What a marketing scheme! It is so good that I was searching for movies to go see just so I could have this snack for dinner! Then we noticed they started selling them in the grocery stores, but of course, not our favorite flavor:
This led to me googling for the best price. Being the thrifty shopper that I am, I went for the 6 pack...and also found a new flavor to try...yes, the 6 pack too.
To enter, just leave a comment with your name on this blog.
(You don't need to be registered with blogger. Only one entry per person)
Contest ends June 29, 2011.
1 winner will receive (1) 3 oz Caramel Seasoning and (1) 3 oz Chocolate Marshmallow Seasoning.
Check back on June 30th to see if you won!
Friday, June 24, 2011
We had no idea how many resources were available to Deacon because of his "legally blind" diagnosis. I feel like we are just beginning to get our feet wet, but this is the perfect time to share what we have learned this far, before we have so much info that it is overwhelming to write (and for you to read).
The street sign above was the easiest to obtain. Our street is adjacent to the entrance to our neighborhood. Frequent traffic and fast drivers have been a complaint of many parents on our street, so I figured a sign might slow some of the speeders down. I called City Hall and asked who I needed to talk to for getting a "blind child" sign posted. They connected me to the right person in Public Works. Within a week or so a sign was up, no documentation needed or anything.
I have said it before, but Deacon's VI (visual impairment) Teacher is a-mazing! She has taught us so much, and now that she is coming to our house for therapy for the summer, we are learning so much more! The craziest thing is that Deacon is much more receptive to new items if you introduce them to his feet first! lol She compares putting new objects in his hands to going inside a haunted house where they ask you to stick your hand into a box with an unknown object inside, kinda scary. It is much less intimidating to place it on his bare feet first, then he will reach down and touch it with his hands. She has also showed us Deacon's motivation for anything with movement and light, which explains why he has always liked the television. This has helped us pick the best toys for him to play with, and she even found spots in our house that he goes to most often to place the toys. Yes, our house looks like a playground!
She also connected us with Texas Division for Blind Services, part of DARS. We just met with them last week, so I don't know everything they can do, but they told me that they take children and their families on field trips/vacations to places that cater to visually impaired, and they will also purchase products suggested by VI Teachers. They just ordered Deacon this goody, for close to $200, at no cost to us:
These two items work together, helping Deacon to turn electronic devices on/off easily. The switch plugs into the power strip. When the button is pushed all items that are plugged into the power strip turn on. This will allow him to turn on the radio, help with cooking in the kitchen, and operate any other electronics associated with daily living.
Deacon loves banging, all things metallic, and noise; this is so perfect!
It has a suction cup at the base and a large lip on the side to help with scooping.
Miniature Disco Ball
We went to the skating rink this week and Deacon started crying when they turned the disco ball off!
This would go great with his new power strip!
Saturday, June 18, 2011
Tuesday, June 14, 2011
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.
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:
Please continue to pray.
Friday, June 10, 2011
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.
- 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!
- 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!
- 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.
- 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.
- 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.
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!
Thursday, June 9, 2011
Saturday, June 4, 2011
Friday, June 3, 2011
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.
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. :)