Outside Play

Well, JT has been doing great (yay), Audrey is of course wonderful, and we are all just having fun these days.

Mom is all set for surgery 12/4 (hysterectomy). She has bunches of appointments to prep this time, which is just kind of time consuming.

JT is turning 3 12/2, so that means he is transferring to the school district (graduating from early intervention). This means lots of evals and meetings, but we're hoping the transition goes well and he ends up getting services that fit him.

We got outside last week, and mom took some cute pics of the kiddos. Enjoy!

Updates on JT and Evie

I got JT's occupational and speech evaluations back yesterday. I hate getting evaluations back... It's so easy to go day to day and see progress, and be so proud, and completely forget that he's not 'developmentally appropriate' age-wise.

So, it's never an easy day when I get the evaluations back. Even though they have always been so sweet... Saying what a supportive family he has, what a cutie he is, how sweet he is... It's hard.

These were new evals - so the third type of evals of each - that JT has been through. I start wondering exactly how many different evals they have for kids, and why they don't standardize them... But, that's a whole different story.

To simplify, JT scored at a 3 month equivalent for receptive language. Folks, that's a 90 percent delay. That hurt. His expressive came in at a whopping 7 month equivalent, which is between a 70-80 percent delay. Ouch. Overall, his language delay is around 80 percent (a combo of the two). Occupational was not that much of a delay - but keep in mind most of his 'occupational' issues are sensory - not delay - related. I think he scored around 17 and 20 months for those... And he's 30 months now. So, enough to be considered delayed, but nothing like the speech. Of course, the therapist noted that JT was sensory seeking (jumping off things, running into things, etc), and that he has a VERY short attention span. New from this report - JT has low muscle tone. Weird. He was explaining it to me during the eval - hypotonia is VERY common in autistic kids. Basically, JT's body doesn't know how to idle - his proprioceptive sense is 'off'. So, he's either going ninety to nothing or sleeping pretty much! The occupational evaluator - Rob - is going to be our therapist. He is so awesome - he gave me great ideas that The Hubs and I have been using with JT... Putting his hands on our face to get his attention, signing important words as we talk... I really look forward to working with him. JT loved him, too, which is the most important part! Hopefully therapy will start soon - I'm assuming in the next few weeks. I can't wait for him to start getting the help he needs, and to get ideas to help him here at home. He is so smart, I know that once someone who knows what they're doing starts working with him, he will respond so well!

On to the kitty... Evie is progressing, albeit slowly. She is eating very small amounts on her own (turkey, her favorite, and high in protein, which she needs). I am still syringe feeding her, and she really hates it now. I get yelled at every time the syringe comes out - or she smells the food. 'Mee-yah, mee-yah' while she's eating... Kind of comical, actually. She doesn't want to drink on her own, so I'm still giving her the sub-q fluids. She follows me in bed when I go to sleep, so she can get under the covers and snuggle. Jumping on the bed on her own... She is awake more now, so I assume the jaundice has the sleepy effect on her that it has on infants (both mine were jaundiced at birth, so they slept their first few days!). She is vomiting much much less, keeping down over 90% of her food! The only times she's thrown up is when I stuck her two days ago, and when I fed her too much yesterday... Oops. So, stress and too much food - which would make me cringe, too. She is much more vocal, back to her old 'yelling' at anyone and everyone. The Hubs is already complaining about how spoiled she is now... And he has noticed her acting much better also! So, still yellow, but yelling...

We are going back to the zoo on Sunday for Father's Day - The Hubs's choice of activity for the day! We LOVE the Nashville Zoo, it will be fun :0)

Hope all is well with everyone!

Tomorrow's the BIG Day

As in, the day the TEIS coordinator comes over and we get JT's IFSP started! FINALLY!!!

I talked to our coordinator a few days ago, and YES, JT qualifies (and will receive) ABA! I am so excited! Of course, until we go over everything tomorrow and do all the paperwork, I'm not sure how much he gets (in hours). I'm hoping for about 10 hours ABA, and 2 hours each of speech and occupational therapy... Which would take our therapy totals to 14 a week of state-provided, then I'm going to try to wrangle with our insurance company for some more speech, occupational, ABA and maybe music therapy... We'll see. I am just so excited to finally be making forward progress.

My mom was in town for a few days, and we had a great time! JT talked a lot, not sure what all he was telling her, but I'm sure he was telling on his mommy and daddy for something! Funny man!

I'll update again tomorrow... For now, I am just in the BEST mood :0)

Oh, and my dad and I are both signed up for the MS150 October 4-5. It's the Jack and Back ride, from Franklin, Tennessee to the Jack Daniels Distillery and back (150 miles in 2 days, hence the name MS150). If you want to make a donation to support me, I'll put the link up... And if you get emails from the MS Society, it's probably me begging for money!

Hope everyone is doing well... We certainly are!

Here's the latest picture of JT -

Fun in the Sun!

Well, warm weather is finally getting here... Kind of!
The kids have been enjoying the great outdoors. Our neighbors built our kids a real tire swing (how sweet!), and they love the horses and all the other animals out here.
Audrey got her first tick (at least the first one she knows about). She completely lost it, and four days later, she's calm until the word tick comes up.
JT has been eating his weight in food daily. He's ALWAYS eating! He is only about 1/2 an inch shorter than Audrey now, and definitely a few pounds heavier... And 16 months younger. He is also extremely strong, and throws a mean sidearm you wouldn't believe. WITH AIM.
We had his Tennessee Early Intervention evaluation last week. Hopefully his therapies will pick up soon here. I am having a few 'complications' with TEIS. See, our coordinator told us that behavioral therapy (ABA) wasn't covered by TEIS. Then, the lady that did the eval last week told us that it IS, and several of her clients receive this therapy through TEIS. Well, ABA is the ONLY therapy proven to actually help autism, so now I'm a little angry. Angry that she lied to me, and confused as to why she would do that? The evaluator said she would speak with our coordinator about ABA and recommend it. If it's not on our 'Plan', I'm not signing it. I have already looked up the Autism Society here in Middle Tennessee and I'll call an advocate if I have to. I don't understand why they try to screw kids with disabilities out of services the government covers... I mean, what does that say about our society? We take the weakest, and we take away what they're entitled to legally? No better than the playground bully, really.
I'm sure there will be plenty more rants about this if our coordinator doesn't include ABA in our plan. But, for now, I'm going to try to be calm.
JT's tantrums have gotten worse. I don't know if it's his age, his inability to talk, or a combination of both. He has the most shrill scream I have EVER heard... And I have worked in day cares, so I know kids screams! He did sit on the potty a few days ago. Didn't go, but it was a great start!
The Hubs loves his job! Dillard's had swim day Saturday, and The Hubs's store got first place in his division (sales in swim were over $14k just that day!). He was so pumped!
I've found my trails on the Trace. I run every other day out there... It is so beautiful. I'm always alone on the trails, and there's something about being out there with all the sounds of the birds and the trees - it's impossible to explain. It's an instant mood-lifter. I also got my bike out, and rode up the Trace a little. I'm glad I didn't try a long ride, holy moly my bottom HURTS! I have to get on it soon, though... My dad are doing the Jack and Back MS150 bike ride in October!
So, there ya have it... The Duzan family update.

Developmental Evaluation

JT had his 'big' eval done yesterday. It took all day. We went in at 8:45, stayed until 11:30, broke for lunch and went back from 1 until almost 3pm.
We had a wonderful group of professionals. We had a Speech Language Therapist, a child Psychologist, a Social Worker, and a Developmental Pediatrician. They were great with JT, and easy to talk to as a parent. I was very impressed.
We did all kinds of fun things, obviously all which assessed his current levels. They have a new test at Children's Hospital which is exclusively to test for autism and its tendencies. We did that one, too.
At the end, all of the professionals had a 'team meeting', and discussed what (if any) diagnosis they felt he fit.
It took them a total of ten minutes to discuss their results and come get us.
JT has autism. Luckily, NOT apraxia (yay!!!). He scored very low on many of the tests. His communication, both receptive and expressive, were at a 3-5 month old level. His cognitive was at 11 months. His fine motor was around 18 months. His gross motor was at 24 months. While the gross motor looks good, it's STILL concerning because 6 months ago he tested at a 30 month level... Obviously he has regressed. Hopefully it's nothing, but they, too, suggest an EEG to rule out seizures. They don't think he's having them, it's more to rule them out than anything, and it is completely possible.
Just for informational purposes, I wanted to know where they thought he was on the spectrum. They feel he is moderate. I totally agree with that...
Anyway, glad it's over, now time to move forward!