Week of Progress

 

 

Deacon deserves to celebrate!! He has kicked butt this week by accomplishing two HUGE milestones!!

 

First up, feeding himself with a spoon:



 

He has been practicing at therapy, and this week Deacon blew us away by grabbing his spoon and getting all of the food in his mouth with each bite!  He was so proud as we cheered him on!

 

 

Now that he is sleeping well in his new room with Carson and also knows how to climb in and out of his crib, we figured it was time to convert him to a toddler bed.  Look how huge he looks standing next to it:

He had no problem climbing in and out

...or jumping!!

 

 

It brings tears to my eyes to see how far he has come!  There are so many unknowns with his autism and epilepsy, that no milestone is promised.  It feels amazing to be able to check a couple off the list.

 

 

Way to go Deacon!! 

 

(PS- Have you noticed what a ham he is for the camera!?!)  

Bennett: 2 Months

Bennett- You are already 2 months old!!

You weigh 13 lbs. (86th percentile), are 2 feet long (90th percentile), and have a head circumference of 16.5 inches (94th percentile).

You wear 3 month clothes and size 2 diapers.
Your firsts this month: smiling, cooing, staying in a hotel, and sitting in your bumbo.

We love that your personality is starting to emerge. You are very easy going and are starting to smile and "talk" more frequently when you are awake.

Night times are still spent in your car seat, which you love. The amount of times that you wake up vary, but typically only once to eat and a few time for us to put your pacifier back in.

While you are awake you enjoy your swing, being held, looking at us and around the room, your pacifier, baths, and holding your head up. Your little neck is getting stronger and stronger. You have been a noisy little guy since being born! You snort, grunt, hum, and coo, but amazingly, your cries are fairly quiet and don't happen unless you are hungry or gassy. Your upset stomach is almost like clockwork, between 7pm and 9pm. Luckily, it is already starting to subside. We are looking forward to your spitting up disappearing. I think most of our family and friends have been a recipient of your little milky "gifts" on their clothing.

Eating may be your favorite thing to do! You drink about 6 ounces at a time, every 3-4 hours. All those bottles are filling you out, making those cute little legs, arms and cheeks nice and chubby!

Having you as the baby of our family is so fun!! My only wish is that time would slow down a little so that we could enjoy each second a little longer.

ABA Therapy

Deacon has been going to ABA therapy; today was his 7th day! We found a place accepted by our insurance, that is Christian-based, and about 30 minutes from our home. Deacon goes from 9:00 am- 3:00pm Monday-Thursday and 9:00 am- 1:00pm on Friday. The first half of the day is spent in a preschool setting with about five other kids in his class, then is one-on-one after lunch.

This was Deacon after his first day:
Each afternoon we are given two thorough reports about his day, one looks like this (I know it is kind of hard to read):
We also get his artwork, and although it is done hand-over-hand, it is much better than the artwork he brought home from daycare that you could tell the teacher completed all by herself.

To say these first few days have been amazing would be an understatement. They are miracle workers and worth every penny we are paying!

The most obvious change we have noticed is at mealtime. Example: The week before Deacon started therapy we ate dinner at a Mexican Restaurant. He takes a chips, eats one little nibble, then crushes the rest while throwing the crumbs below, along with his drink, silverware, etc. By the end of the meal we have learned to have clean up time under Deacon's high chair. Two and a half days into therapy we went out to eat again and were blown away by the drastic changes in his eating habits! He would take a bite of his food and hold it to his chest until he was ready for another bite, careful not to drop anything. When he was done eating or didn't like something he has tried he placed it nicely back on the plate or table! As we were leaving we looked under his highchair to find a half of a chip. That's it! Our carpet and car already look so much better without "Deacon droppings" all over!

The therapist has also been working on getting him to stay seated in a chair during class and lunch. He is now able to stay in his seat for meals and snacks at school! This is huge, because he is already tall for his age he will quickly look ridiculous squeezing in a highchair.

Another huge accomplishment is with mouthing objects. I don't know if I have mentioned his obsession with putting his mouth on everything... I could post a whole blog with pictures of him and his mouth where it shouldn't be. I think he started because of his vision problems; the mouth is more sensitive than hands, so allowed him to identify things easier. It has now turned into a "stem" where he is obsessive about it. His therapists are working hard on breaking the habit and although he hasn't completely stopped, it has decreased considerably.

Speaking of stems, he just started walking on his toes. His therapists said that once it becomes a habit it is very hard to break and suggested for us to buy him heavier tennis shoes instead of his sandals, so that it would be more difficult to walk that way. I told her that shoes have been an issue in the past, because of his vision he only likes wearing light shoes, but that we would give it a try. Deacon is now a sneaker-wearing kiddo and the toe-walking has stopped!

They are working on so many other goals with him as well, here are a few:
-language: receptive and expressive
-playing with a variety of toys appropriately
-interacting with peers
-increased eye contact

We can't wait to see what new "trick" he will come home with next!

*Thank you to everyone who has donated to help pay for his therapy, we will be forever indebted to you! I promise to post updates as often as possible so that you can see that your money went to great use.

Autism Report: The Good, the Bad, and the Ugly

I met with Deacon's autism doctors, who recently tested and diagnosed him, to go over their report. They were very nice and wanted to make sure I didn't have any more questions. They skirted around the issue when I asked what end of the spectrum he was on, saying that they didn't like to put a label on it because children with mild autism needed intervention the same way those with severe autism did and didn't want to send a mixed message to parents.

They handed me the 15 page report. I asked if I could stay in the room to read it, since my wonderful neighbor was watching the boys and I wouldn't have any interruptions. I obviously am not going to type all fifteen pages on here, but at least want to sum it up.

The Good:
Social Interactions- Deacon has improved eye contact, will play in the vicinity of other children, will initiate physical play with family, and displays appropriate range of facial expressions.
"When the examiner entered the room, Deacon didn't acknowledge her, but eventually approached her to touch her id badge and play with her hair. He transitioned to the examination room with minimal prompting."

"Deacon remained seated during the entire test without problem. He seemed to enjoy watching the toy car roll across the table and occasionally pushed it back towards the examiner."

"Deacon enjoyed participating in activities such as peek-a-boo, free play, and being lifted and tickled by his mother."

Communication- Deacon appears to understand some simple and/or gestured commands, like clapping and waving.
"Deacon reacted to loud noises, but his response was somewhat delayed. He also turned and coordinated listening with sound."

Repetitive and Stereotyped Behaviors- Deacon does not show a need for routines or upset with transitions.

The Bad:
Social Interactions- Deacon does not engage in parallel or initiate play with other children, doesn't initiate spontaneous joint attention (which means looking at an object that someone else is looking at or pointing to), doesn't respond to his name and is hard to get his attention, and doesn't engage in pretend play.
"Deacon appeared to be less engaged during tasks that required interacting with the examiner or engaging in pretend play."

"It was difficult to catch Deacon's gaze during the assessment and he rarely directed his gaze towards the examiners face."

"Deacon did not respond to his mother's attempts to make him smile until she physically touched him."

Communication- Deacon shows delays with receptive language, does not show, point, give, or bring items to others.
"Deacon did not appear to recognize his name, familiar words, or inhibitory words. His expressive communication consisted primarily of vocalizations. He made few vocalizations that were mainly vowel sounds, without any consonant reduplications. He did not point or gesture to indicate preference and it was difficult to catch and maintain his gaze."

Repetitive and Stereotyped Behaviors- Deacon shows an intense interest in musical toys, engages in repetitive behavior of dropping items on the ground, tapping surfaces with his hands, flaps hands when excited, mouthing objects, eating non-food items (dirt and paper), and visual inspection of toys.
"Deacon was observed to engage in self-stimulatory behavior with a water bottle (eg. mouthed, bit, and rubbed on his face and feet). Deacon approached his mother, showing sensory interest in her feet and sandals. He was also observed to repeatedly jump while flapping his hands coordinated with high pitched vocalizations."

"Deacon dropped the majority of items on the floor in a repetitive manner. He was not able to grip a pencil or crayon and attempted to eat the paper. Deacon licked multiple test kit materials throughout the evaluation."

The Ugly:
Because it was so hard to administer tests on him due to his deficit in communication and vision and difficulty engaging, his scores came back horrible.

Visual Reception- 6 months. He was able to coordinate problem-solving and fine motor skills to look for a hidden object and retrieve a distal object by pulling a string to bring it closer. He did not show interest in a book or attend to pictures. Also, he was not observed to look for an object hidden and then displaced.

Fine Motor- 10 months. Deacon used appropriate pincer grasp and two hands together to manipulate objects. He was also able to take blocks out of and place them into a container. He did not bang objects together, place pennies into a slot, or imitate simple lines drawn.

Receptive Language- 3 months. He showed the ability to attend to his environment, including listening and turning, responding to faces and voices through vocalization, and coordinated listening with looking. He was not observed to enjoy a reflection of himself in a mirror, recognize familiar words or names, or attend to words and movement.

Expressive Language- 5 months. Deacon laughed, made vocalizations, and played with sounds. He was not observed to babble, or produce three consonant sounds.

Autism Spectrum- The ADOS test results indicate patterns of:
1)Moderate to Severe Concern
2)Mild to Moderate Concern
3)Little to No Concern

Deacon's score was consistent with a classification range of Moderate to Severe Concern. :(


The report also gave suggestions of things to work on at home, and goals for teachers, therapists, and even IEP goals for when he enters school. It also again suggested ABA therapy, but more, 25-40 hours each week. We have worked out the insurance information, and will have to pay a $30/day co-pay. What's hard is that Deacon still needs naps each day, so it's not like he can have an 8 hour day of therapy. I think we will start with 3 days a week of like 6 hours a day, but we meet with the clinic on the 25th and will decide then.

Bennett: 1 Month

Bennett- You are one month old!!

You weigh about 11 lbs., wear 0-3 month clothes and size 1 diapers.

This month's first: bath, trip to the zoo and Grapeland

You love to eat! You would be happy if the bottle was attached to your lips at all times, but are happy to drink about 6 oz. at a feeding every 3-4 hours.

I don't know how it is possible, but you look even more like your dad than your brothers!

You are still waking up about 3 times a night to eat, and then a few other times when your pacifier falls out. Because you spit up when we lay you down flat, you are sleeping in your car seat in our room at night. During the day you sleep mostly in your swing.

You love snuggling, your pacifier, taking baths, and sleeping.

Your coordination is improving; you can hold your head up and maintain eye contact for longer periods of time.

You have been such a fun addition to our family! I had already forgotten how nice it is to hold a baby and how sweet you smell. You are easy-going and have made the transition from two to three kids much smoother than I imagined.

Terrible, Horrible, No Good, Very Bad Day

Yesterday sucked. Bad.

After four hours of testing at Texas Children's Autism Center, Deacon was diagnosed with Autism.

Carson fell at recess and broke his collarbone.

When it rains, it pours.

Doctor appointments for both tomorrow. Will write more when I have the energy. Please pray.

Meyer Center Appointment

Deacon is one in a million! It seems every doctor we meet is stumped by him. Today's appointment at the Meyer Center wasn't too much different!

Our appointment was scheduled at 8am this morning, where we met with Dr. Voigt and a resident, who is also a neurologist. They spent most of the two hours we were there asking questions and testing Deacon for his evaluation. Both doctors were extremely nice and interested in all information we had to share. Deacon was in his normal state:laughing and climbing, and would participate in the activities that interested him (anything having to do with the bells, clinking blocks, or lights) and ignore the non-stimulating stuff like the pegboard or coloring. He showed off his ability to follow the commands "no," "sit down," and "jump" (when I sing the Yo Gabba Gabba jump song).

Dr. Voigt said he was in about the 12 month range in most areas (10 months for speech, and 2 years for gross motor). Which is a slight improvement from his last evaluation. We discussed the professionals who initially thought Deacon had autism upon meeting him, who usually changed their opinion after further observation. The doctor agreed that it was so hard to tell because of his vision issues which have symptoms that really mimic autism (less eye contact, echoing words, delayed communication), but agreed that throughout our visit, Deacon initiated play, laughed, and made lots of eye contact.

He said we are doing everything right for Deacon with his therapies, and that he would benefit the most with ABA Therapy. From our understanding, insurance doesn't typically cover ABA therapy unless there has been an autism diagnosis. The doctor said that he didn't want to be unethical by giving him a diagnosis that he wasn't sure really existed, so is referring us to a neuropsychologist for further testing. (We both got the impression that the doctor doesn't think it is autism [yay!] but doesn't want Deacon to miss out on therapy services because they are so expensive without insurance. It looks like just by the nature of the test, that doesn't take into account vision issues, he will "qualify" as having autism on paper.) Dr. Voigt is also referring Deacon to a genetics specialist to see if they want to test for anything else, and also find out more information about his sodium receptor issues and their connection to everything. He wasn't able to give us a prognosis, saying each time we visit it will give him more information on how much Deacon has grown from the last visit, allowing him to track progress and project for the future.

So, we left the visit with not much more than what we came knowing, but somehow still felt satisfied and optimistic. It's nice to hear we are doing all the right things and to also have another set of resources to refer to.

Have I mentioned how one-of-a-kind our little fella is??

Deacon's 1 Year Seizure-Free Anniversary

Yippee!! Tomorrow marks a year since we saw Deacon's last seizure!

I was able to get in touch with his neurologist today about his recent EEG too! He was blown away by the results. He said that the last EEG Deacon had in October was "horrible" and is amazed that this one showed no seizure activity, especially with the types of seizures he was having and his sodium receptors being abnormal.

I also discussed with him the changes we noticed in Deacon's communication when the dosage was decreased. What I haven't written on here, is that most of the words he picked up during that time have since disappeared again, leaving us with only a couple of sounds again... Dr. Foster was encouraged that he improved during that time, and suggested that we lower his dosage again and see how it goes! Between the wonderful EEG and the news of improvement with a decrease in dosage, Deacon's doctor thinks it is possible that whatever triggered the epilepsy may be gone and he could be free of it! We won't know anything for sure until we continue to decrease, and do more EEG's and MRI's to see if there is a change in seizure activity, but it is nice to have a glimmer of hope, especially with the loss of language the last few weeks!

Tomorrow is our appointment with Texas Children's Meyer Center, where we pray more optimism comes our way!

Happy Anniversary Baby D!

Deacon's Latest EEG

Deacon after his recent EEG

Deacon had an EEG back in February to see how he was responding to the change in prescription to Valproic Acid and B6. His neurologist and I have been playing phone tag for the past couple of weeks, so when I was in the area today picking up Deacon's B6 prescription (we have to special order it from a compounding pharmacy near his office, about 30 minutes away), I decided to stop by and at least get a copy of the report to hold us over until we can talk.

With a year of neurological research under my belt, I am definitely no professional, but have come to understand a lot of what is written in the reports. Before I share the results, here are parts of his previous EEG's. They are pretty wordy, so I tried to summarize, paraphrase, and define as much as possible.

January 17, 2011
Patient with abnormal EEG. No evidence of occipital rhythm, indicating disturbance in cerebral function (reason for his vision problems). In addition, there is 3-4 hz high-voltage slow wave activity (high voltage & slow wave is the worst to have) mixed with spike and sharp wave activity in occipital (vision) and temporal (speech/memory) regions. Epilepsy diagnosed.

October 5, 2011
This EEG is very abnormal because of multifocal spike wave discharge (seizure activity in multiple parts of the brain), but mostly in the left-mid temporal lobe (speech/memory). Poorly organized, not well-sustained, medium-voltage (5-6 hz) activity (which means some improvement b/c medium voltage is better than high voltage) seen symetrically. No clear focal slowing seen (also better).

February 18, 2012
Well organized, well sustained 7-8 hz (see how the number is getting bigger each time, that is good) activity seen symetrically. Sleep stages normal. This is a NORMAL awake and asleep EEG!!

Again, I haven't talked to the neurologist about his impression, but the report looks optimistic. Praise God!

Will update again when I get more information.

Deacon's 2 Year Update

Deacon- You are TWO years old!!!

You weigh 27 lbs. and are 34.5 inches tall.

You wear size 4 diapers, 2T-3T shirts, 18-24 month pants, and size 7 shoes.

You take 5 ml of Valproic Acid (switched from 7.5 recently) and 1 ml of vitamin B6, both twice a day. You are the pickiest eater! Your favorite foods are ice cream, french toast, quesadillas, and cheetos, and you will eat some other foods that are sweet or have breading. You don't really like any fruits or juice, hate noodles and most meats. Dinner time is always an adventure with you, because one night you might eat something we give you, and then the next time we serve it you spit it out and want nothing to do with it... You still prefer to eat with your fingers, but will use a spoon if we put the food on it first.

You have become increasingly vocal each day and are starting to mimic sounds. You can say "mama," "dada," "bubba," and can make the sounds "h," "s," "la," and "ga." Now that you have learned to make kissing sounds, wave "Hiiiii," and blow raspberries, we are laughing with you all the time!
I think you may be our future musician! You love music, so any shows that have lots of songs are your favorites (Fresh Beat Band, Backyardigans, Mickey Mouse Clubhouse), but you get so mad at the tv when the song ends, that we will sometimes rewind for you to listen again.

You love playing in the bathtub, swinging, jumping on the trampoline with your brother, and any other activity that allows you to be outside. You are such a happy guy, we have nicknamed you "Smiley Face" because that is what you are always doing! The only time you get upset is when someone enters or leaves the house and you don't get to go outside (which is more frequent now that Carson and all his friends play together every day)!Sleeping is still one thing you do great! You are usually in bed by 8pm and will sleep until 9am, and then will take a 2-3 hour nap during the day. We are surprised that with how much you love climbing that you haven't tried to escape from your crib. You actually love playing in there and are perfectly content until we get you out. Some mornings/evenings we will lay in bed cracking up at the sounds we hear coming out of the monitor as you "talk" to your toys.

Physically, you are a superstar! You love to jump, throw (well, more like drop) toys, slide, wrestle with the boys, clap, and just figured out how to make yourself dizzy by spinning in circles. Climbing is your favorite activity, with your favorite spots being the tv stand, bathtub, toilet, and dishwasher door. We can only run the dishwasher while you are sleeping because you also like to turn the knobs on it while it is running.You are becoming more social, will follow us around the house, and come sit down next to us when you get tired of playing with toys. You will raise your arms to be picked up and have no problem stealing the spoon away from Dada when he is eating ice cream. You love girls who wear hairbows or anything sparkly, and last week you even played chase with a girl at Little Gym. We are working on having you look at us every time we say your name and clap twice when you want more of something.

I know they say two's are terrible, but so far we beg to differ! Your second year has started off with a bang, making us pray that this year will be renamed the "Terrific Two's"!!

7 Month Pregnancy Update

How far along? 30 weeks

Mood: Rested! :)

Maternity clothes? Yes, along with my bellyband because even maternity clothes are having trouble covering my growing tummy and I refuse to buy more just to wear for two months!

Sleep: Still having trouble getting comfortable, and now also waking multiple times at night for visits to the bathroom, but other than that sleep is good...lol

Energy Level: Short spurts throughout the day.

Best moments in the last month: Getting to relax and enjoy my last few months of being pregnant and having a family of four.

Movement? You can see movements from the outside of my tummy when Bennett gets dancing!

Cravings: Milk, Big Red, and Bluebell ice cream

Baby purchases this month: All this free time has given me a chance to shop online! Baby bedding, a couple of ties for newborn pictures, a baby sling, mattress, and picked out a new double stroller today that my fabulous aunt is getting us!

What I miss: My coworkers and students

What I am looking forward to: Being able to resume normal activity!

Look how much my belly has grown, even from just last month!!!

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!).

18 Month Deacon

Deacon, you are 18 months!!

You are 34.5 inches tall (97th percentile!!!), weigh 24 lbs. 11 oz. (37th percentile), and have a head circumference of 18.5 inches (31st percentile).

• You wear 2T/3T shirts and 12 month shorts! We finally found shoes you will wear: 18-24 month leather soled pedipeds. That is the largest size they make, so once you outgrow those we are praying you will wear regular shoes.

• You have a definite sweet tooth! You love all sugary goodies, but have grown to like most other foods too. Your fine motor skills have also grown! You are able to feed yourself almost any food with your fingers and drink from your sippy cup with no problem! We are now practicing using utensils.
  



• You are great at using those little fingers to find every little particle on the ground and putting them in your mouth. Your favorite non-food meals are paper, mulch and grass, which we find ourselves removing from your mouth often. Yum!
  
  



• Last month you started a new daycare and we are all in love! They agreed to place you in a class based on development and not age, so you started in the 12-17 month room. Within two weeks the director asked if you could be moved to the 18 month-2 year old room because you are doing so well!! You get excited every morning when we arrive and there is even a little girl in your class that makes "ah-ah" noises at you during breakfast.
  
  



• You LOVE being outdoors! The only time you ever throw a temper tantrum is when we open the front door, without letting you go outside. We are thrilled that it is finally starting to cool off so that we can play in the yard more!
  



• You also LOVE music! Your favorite toys and shows are the ones with a tune and you will sometimes even jabber along.
  



• Climbing is probably your favorite obsession. You have a blast at Little Gym every week and have learned to be very careful when getting on and off objects. You are not picky, and will climb on ANYTHING, but climbing inside the toilet is probably your happiest hang-out.

• Just like your brother, you waited until after your first birthday to start sleeping through the night. We have been well rested for a couple of months now!
  



• We are in the process of switching your seizure medication from Topamax to Valproic Acid to help with your language skills, since one of the side effects from Topamax is a loss of word retrieval.
  



• These past six months have been such a roller coaster, but we have been blessed beyond belief with your progress and thank God every day for you!
  

Fabulous photos by Carey Anne Photography

Our Testament

March 29th was probably the most difficult for Brian and I when dealing with the overwhelming feeling of having no control in Deacon's future. It was our rock bottom.

It is in that time when you get to a place that you throw your hands in the air and give up doing things on your own. We finally realized that we could do all we could as Deacon's parents, but the most important thing was to give our struggles and desperation to God.

That day this verse became my mantra:
"Have faith in God. Truly, I say to you, whoever says to this mountain, 'Be taken up and thrown into the sea,’ and does not doubt in his heart, but believes that what he says will come to pass, it will be done for him. Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours."
Mark 11:22-24

Our pastor summarized with: Don't tell God about the mountains in your life, tell those mountains about God.

Around this time my Aunt Bonnie mailed us this book, after the family visited her church:

They wrote about their healthy daughter becoming ill and needing to have her heart removed. She was hooked up to a machine that was outside of her body and worked as a temporary heart while they waited in an out of state hospital for months for a transplant. The family was split apart, had days with poor prognosis, but continued to stay strong in their faith.

I started reading this book on April 4th, after my students finished their state testing. On April 4th Deacon stopped having seizures and we haven't seen one since. It has been 4 months!

Coincidence?? Deacon had been on the same prescription for a couple of months and had no changes in it. This was also less than a week since our "rock bottom." Believe what you will, I have no doubt this was God.

Need more proof of the miracles we have experienced:

Diagnosis: Seizures
February 17th - We were told Deacon had Infantile Spasms and a 90% chance of being mentally retarded, and high mortality rate.

March 29th - Doctors told us they were wrong after 23 hour EEG, Deacon did not have Infantile Spasms, instead Myoclonic Seizures. Myoclonic seizures had about the same prognosis, the goal being to reduce number of seizures, but complete seizure control would be difficult.

April 4th - Seizures stopped!

Diagnosis: Vision Problems
January 10th - Deacon needs glasses.
February 24th - Vision specialist told us Deacon does NOT need glasses, but that he has cortical visual impairment.

June 24th - Vision Specialist can hardly believe Deacon is the same kid! Told us all fixing, following, and visual attention had significantly improved!

Diagnosis: Developmental Delays
February 1st - Deacon qualifies for ECI services for developmental delay. At about 12 months of age, he was at the development of about a 6 month old and had regressed in some areas and platued in others. He could not feed himself, had no interaction with toys or people, language had completely disappeared.

July 20th - Deacon's re-evaluation. In six months, Deacon has had 6 months of progress! He is now developmentally at at about 12 months is drinking from a sippy cup and feeding himself, plays with toys and people, and is making sounds again!

Diagnosis: Autism
June 14th - Neurologist diagnosed Deacon with Autism.

July 12th - I haven't even shared this with y'all: DOCTOR RETRACTED AUTISM DIAGNOSIS!!! He said Deacon was much too affectionate and interactive for him to believe that Deacon had autism like previously believed.


So let me remind you of God's promise:

"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 1:12