Friday, September 29, 2006

Not too much going on...

We are renting a cherry picker over the weekend to prune some trees and Jeff's going to fix my tree swing.

Connor starts school on Monday...I can't believe it. I can only hope it will help. I'll post pictures then!

Monday, September 25, 2006

Funny Story.....

Last week Gram took Austin to the dollar store. The women in line in front of them was buying a bunch of plastic boxes. She was struggling to hold them all so she decided to take the cart to her car. She was using the cart to bump the door open and was causing quite a stir (and a mess). Well Austin was watching her the whole time. Once she finally made it out the door, he turned to the cashier, sighed and said "Women Drivers". Not sure where he got that from but the clerk and my Gram just laughed! Funny, but chauvinistic!

Thursday, September 21, 2006

Connor's genetics testing- Take 2

We just got the second round of results in (see 8/10 and 8/15 for first round info). They tested the lactate, pyruvate, Pipecolic acid and the plasma amino acids again. For the most part, everything was normal. The lactate/pyruvate ratio was still a little high, but because everything else was in a normal range, the Dr isn't concerned. However, we realized Connor was never tested for his very long chain fatty acids. So this will be the next step. We talked again about the Tuberous Sclerosis testing. No one wants to foot the bill, or lobby insurance to have the bill paid because there just isn't enough evidence that the mutation means something. I guess I will let it go for now.
Brian Myers

Thursday, September 14, 2006

At the end of August we did a speech evaluation for Connor. We wanted a baseline before school started...Actually because we thought he was doing so well, it was kind of a 'let's make sure' we are making the right choice in sending him to a school program.

Last November, when we started this whole thing, Connor was rated at having a greater than 25% delay in cognition and communication development. He started speech therapy in late December. We saw some great progress throughout January. In February we saw skill loss again so I arranged a visit with the pediatrician...To test for celiac's (based on development and other dietary issues- test was neg)...And with a developmental peds. The developmental ped visit in April ended with a diagnosis of PDD, pervasive developmental disorder, an autism spectrum disorder. The therapist changed his program a little and Connor seemed back on track. In June we added an OT, occupational therapist, and a once a week visit to a speech based play group. Things were looking up, however, we still decided to place Connor in a school program come fall. We also started genetics and metabolic testing. Perhaps there is an underlying cause for all this. He did have some high levels, particularly lactate, pyruvate and their ratio. We are currently (ANXIOUSLY) awaiting the most recent results.

Summer zoomed by, lots of progress, lots of happy therapists and it's time for a speech eval. We were all so happy with his progress, everyone kept saying maybe we're jumping the gun on the diagnosis and school...and then he was tested. Reading the report is like trying to watch a ping pong ball game...he's all over the developmental map.

On receptive language he did well, was able to identify objects, body parts, clothes and understand verbs both in context and pictures. He doesn't get/use pronouns, plurals and -ing. On expressive language he was again able to identify objects, use 2-3 word combos, answer what and where. He had some skills way above age range (counting), but lacked many at age range tests (plurals and -ing).

They did a language sample also. The Mean Length of Utterance (MLU) for a child aged 27-30 months (he was 30 mos at test time) should be 2.0-2.49 words. Connor's MLU was 1.34, which is consistent with a child 19-22 months. Add to that he is very soft spoken and doesn't understand how to adjust his loudness based on ambient noise, instead he increases pitch. Also, he has a bad habit of imitating inappropriate intonation. If you speak in a sing-song voice, he'll use it back at you. The other major concern is jaw weakness, which would affect his speech.

The one bright spot is his articulation. He has mastered many sounds beyond his age level. So what he says, he says very well. But he just doesn't say enough. In the end he was 'rated' at having a greater than 33% delay. So not only is he not doing great, he's actually slipping even further behind. My amateur explanation is that between the ages of 2-3 most kids are in the middle of a learning explosion, so while he is making progress, it's just not enough to keep up with other 2.5 year olds. Whether that's true or not, who knows, but it sounds good.

So, I am anxious for Oct 1 and the start of school to roll around. Perhaps being immersed in a learning environment 2.5hr, 3 days a week will make a difference...perhaps we'll get something out of this next round of metabolics tests...perhaps he is just a 'silent genius' (There are two other boys he needs to talk over)...either way...we'll keep plugging away, keep telling him to 'use his words' and eventually, I have faith, we'll break through....after all, it's only been 9 months. It took 2 YEARS for Austin to catch up after his seizures robbed him of development. I think my boys want to see how much I can handle at one time.

Speaking of Austin, he finally has his OT in place. Julie will begin working with him next week. I almost feel like I am wasting her time. I think the issues that were concerning us at the end of the school year are mostly gone...or maybe that in context to how far he has come they seem so trivial...regardless, let's see what she has to say and go from there. Also, I am working to schedule his next EEG and ERG in Boston. Knock on wood, he's been seizure free for 10.5 months. Hard to believe that it was a year ago, at his 3rd birthday party that he started having clonics after 14 months of being SF.

Back to Connor real quick. I'll be meeting with someone from the County ARC (Assoc of Retarded Citizens- I hate that) and we'll be working on getting Connor's eligibility papers from OMRDD (Office of Mental Retardation and Dev Disb) so we can get him on the Medicaid waiver. I am hoping, like Austin, this will be something we will rarely need, but it's better safe than sorry to have it in place, should it be needed. Once Connor is on the waiver, he's approved for 7 years before you have to prove medical eligibility again (financial elig. has to be proven every year).

So I guess that sums up the medical stuff for the two kids. Oh, I should really add something about Ben. He LOVES school and my MIL says he's doing well...or at least he's keeping his clothes on, unlike another child.

Ok, I'm really done now. Later....

Tuesday, September 12, 2006

Sosme of my favorite pictures from this weekend.

Jessa & Daddy
Jeff L & Vince

Ben, Kenzie & Ally swinging
Summer & the Birthday Boy

Ben, Connor & Jessa watching Thomas the Tank Engine

Ben & Aunt Cindy

Austin & Jessa- what cuties!

It was a great (BUSY) weekend!

Thursday, September 07, 2006

I guess Ben had a GREAT first day. He's not a big phone talker (what boy is!), but he said he had fun and he wants to go again!
Ben's First Day

Ben was SO excited when I picked him up at Karen's this morning. So excited that on the minute and a half ride to nursery school, he must of said "I am going to school" 10 times. And when we got there, he ran right past Mema and into class. Here is his and Austin's cubbies, Ben playing in the sandbox and playing with Play-Doh. Austin starts tomorrow. Can't wait to hear all about Ben's first day!

On A happier note...I paid $2.72 for gas was a nice change!! I filled my tank for under $50!! For the was at the Cumby Farms on High Bridge Road.
Rem Party photos

Cake for the Birthday Boys- Chris & Austin

Flippy Cup
Jeff & Jeff

Wednesday, September 06, 2006

What a long few days it's been...

Jeff and I had Friday afternoon off so we decided to hit the track. We though we were going to be late only to realize they were doing twilight racing. We stayed through the first five races. Normally we lose every bet, but I got lucky and hit an exacta. We still ended up down for the day, but not as bad as it could be. We even took the time to hit the outlets in Lake George and have dinner as well. It was a great start to the weekend. Note: the Log Jam has the BEST prime rib.

Saturday we had the Rem end of summer picnic. We got extremely lucky and the rain held off all day. I took a bunch of photos but forgot to bring my camera to work to download. I'll post them another day.

We didn't do too much the rest of the weekend. We are trying to get all the house projects finished in time for Cindy and Andy to visit, and for Austin's party Friday. The remaining cabinet for the kitchen is taking shape and SHOULD be hung by Friday.

Yesterday I finally got the chance to use my Kimberely's GC for a facial. I think it was one of the most relaxing hours of my life. It was GREAT! Thanks M&D Smith for buying it!! Now, when can I get another facial....I'll have to work that in my schedule!

Ben starts nursery school tomorrow and Austin starts Friday. Connor doesn't strat until October 2nd.

All for now...

Friday, September 01, 2006

How is it possible...where has the time gone?? Austin is going to be 4 tomorrow. It seems just yesterday that I was in labor for an entire weekend and still had to push for 2.5 hours before we could welcome Austin Michael to the world...all 9 lbs 10 oz of him. It's definitely hasn't been a stress free four years, but it's been an amazing roller coaster ride. I can't wait for the next year to begin. Here are some of my favorite photos from over the years.

Happy Birthday Austin, Mommy & Daddy love you!

Mommy's sleeping angel at just a few weeks old. I think he lived in his sling!

With Mommy on his first vacation to Disney World. He was about 7 months old.

Just over a year old...wearing Daddy's sneakers and waving to Mommy.

Just after his 2nd birthday. We went apple picking so we could make apple sauce...YUM!

Our big 3 year old.

With his brothers this past August.