I love my Dry and Store!

1. Noah is learning to drink from an open cup. He has yet to figure out that you have to "untip" the cup when you take it away from your mouth. So although he always takes a successful first sip, the rest ends up down his front.

2. We are sick of having to search for Noah's CI if it falls off while he's playing so he always wears a Dino Clip or an Ear Gear. Now when his CI falls off it either hangs down his back or across his chest until we retrieve it.

3. Noah is finally tall enough to reach the table now, but sometimes mommy forgets this.

4. I didn't finish my glass of water from supper last night so I left it on the table for later.

Can you guess what happened?

When our audiologist told us that we should invest in a $100 piece of equipment (plus refills!) to dry out Noah's CI I though he was crazy. I know it's humid in VA, but the Dry Aid dessicants always worked fine with his hearing aids. Our audiologist said that someday something would "happen" and then we'd be thankful. I'm not sure that this exactly counts as the something - it really wasn't THAT wet, and the Harmony is water resistant. We got to it right away and it was still working. But it certainly was nice to have that piece of mind. Better safe than sorry!

And I though our NICU stay was rough!

http://www.chron.com/disp/story.mpl/nation/5480465.html

A Decision?

We're thinking that we will be asking only for vision instruction and orientation & mobility through the school system. We currently plan on not sending Noah to preschool at all next year. Instead of preschool, Noah will go to:

- weekly Sunday School and Jr. Church
- weekly Cherub Choir practice
- weekly story hour at the library
- monthly Toddler Tuesday at CMOR

In addition to these activities we will continue to have weekly feeding and AV therapy and whatever therapies the school system gives us. Sounds like a busy schedule to me!

This will give Noah another year to learn (hopefully!) to go potty and (hopefully!) to self-feed and (maybe?) to progress to eating some type of "real" food. These things will allow him to be a better fit at the private school where we would like him to be. Rather than pushing him this year into a situation that really wouldn't work we're just giving him a little more time. He doesn't really need a special ed environment, he just needs help and accomodations. I think the biggest way we can help right now is to give him just a little more time to grow up. For the first time I feel really good about the choice I'm making. Hopefully I won't look back later and regret it.

IFSP

Today was Noah's final IFSP meeting. Noah started in EI two years ago, one month after he came home from the NICU. He was evaluated at 7 months (3 mo. corrected), 19 months (15 months corrected) and today at 31 months. Wow - talk about progress! Here are his scores from each of his 3 IFSPs. All that's left to do now is a transition plan. IEP, here we come!

Cognitive
7 mo. old: 3 mo.
19 mo. old: 12-15 mo.
31 mo old: 30-31 mo.

Expressive Communication
7 mo. old: 3 mo.
19 mo. old: 10 mo.
31 mo. old: 30-31 mo.

Receptive Communication
7 mo. old: 1-2 mo.
19 mo. old: 8 mo.
31 mo. old: 27-30 mo.

Gross Motor
7 mo. old: 2-3 mo.
19 mo. old: 12-15 mo.
31 mo. old: 24-25 mo. (stair climbing & balance beam 18 mo.)

Fine Motor
7 mo. old: 2-4 mo.
19 mo. old: 12-15 mo.
31 mo old: 24-25 mo. (block stacking 18 mo.)

Social/Emotional
7 mo. old: 3-4 mo.
19 mo. old: 15-18 mo.
31 mo. old: 30-31 mo.

Adaptive
7 mo. old: 3-4 mo.
19 mo. old: 15-18 mo. (atypical feeding)
31 mo. old: 28-30 mo. (atypical feeding; toileting & dressing 18 mo.)

We didn't meet all of our goals for gross and fine motor skills this year (mainly the block stacking & stair climbing parts), so we've kept those goals and added a new goal for dressing. Our OT thinks a lot of the delays at this point are vision related, although Noah also has some pretty obvious balance issues as well as some tone issues. Noah is no longer officially 25% delayed in any major area, although we're still eligible for services because of his vision & hearing loss. Way to go Noah!

Paragraphs

No eat that one! It a orange rectangle. Yucky! Here a blue circle.

If you had told me a year ago as we were going through the CI evaluation process that Noah would be speaking in paragraphs at 2 1/2 I'd have thought you were crazy. The audiologists told us not to expect much because Noah had multiple disabilities. They said it was our "best hope" for communication since he'll likely never sign fluently but that there were no gaurantees, especially for kids like Noah.

By the way, I wasn't going to eat the rectangle. Noah was licking a red oval so I guess he thought I was joining in. But I'm not stupid - everyone knows not to eat the blocks with sharp edges.

Feeding Therapy

We had our first appointment with our new feeding therapist yesterday. I like her and I think it's going to work out. Eventually.

Noah was nice enough to finally reach the grittiest of all grittiness plateau with his purees the last week with our old feeding therapist, leaving our new therapist with nowhere to go but chewing. She managed to get to where Noah would open his mouth and let me press a puff'n corn in a piece of mesh onto his molars. He wasn't upset. I think he was perhaps a bit shocked that this total stranger was telling his mommy to put that yucky mesh in his mouth. He kept looking at Carol and saying "Bye bye. See you later, gator!" (in the middle of the meal). Nice try, buddy. She also had us work a bit on self-feeding which will be amazingly wonderful if it works. He was still a bit hesitent and wouldn't actually hold the spoon, but he would put his hand on my arm while I put the spoon in his mouth so I guess it's a start. Successful feeding therapy session, right?

Until we got home.

If Noah was talking in paragraphs I'm sure he would say something like:

I was willing to put that mesh in my mouth while that crazy woman was there. I didn't want her to hurt us, Mom. She was crazy! But if you think I'm going to put that yucky mesh in my mouth in the comfort of my own home when there's perfectly good purees right here and no crazy lady, then you're crazy too.

Instead he just threw a major fit. He kicked and screamed and cried and begged, "No popcorn, mommy. Puuuuleeeeeease!" He covered his face with his hands and whimpered. He gagged and retched. He thrust out his lower lip and pouted. I still touched the puff'n corn to his molars, but only until one puff'n corn had melted to mush. At the next meal, same thing. Today I'm going to give him a morning break and then try for just one meal this afternoon. If the same thing happens I'll have to put a call into our new therapist and see what she wants me to do. Perhaps she'll recommend that we relocate to Austria to continue sessions with our old therapist? Not likely, I know.

Big Boy

My SIL & BIL are due with their first baby in June so we've been pulling all Noah's old stuff down from the attic in case they want any of it. Today I was putting the cover of Noah's bouncy seat (which didn't live in the attic) on the frame (which did) and Noah sat in it and started bouncing. I pulled him out pretty quick since I doubt the weight limit goes up to 27 lbs 1 oz, but I couldn't resist taking a picture. Please forgive the fuzziness of the shot. I think someone's been licking my lense again.

Here are some old favorites of Noah in the same bouncy seat (February 2006, 8.5 months old).

Check out what else my big boy is doing. No more crib!

Options

Our options for next year are as follows (these all assume that private AV therapy and feeding therapy continue):

1. standard special ed preschool in county with related services (probably NOT speech, specifically O&M)


2. "special" special ed preschool in another county focusing on blind/visually impaired students with related services (probably not speech)


3. private auditory oral preschool in another county with related services in county (specifically O&M)


4. private Christian preschool in another county through the school where DH works (and I used to) with related services in or out of county(specifically O&M)


5. private Christian preschool in another county through our church with related services in or out of county (specifically O&M)


6. Noah stays home with me with related services in county (specifically O&M)


7. We move away, join the circus, or go into hiding

Note: options 2, 3, 4, & 5 are all in different counties (all about 45 minutes away except option 3 which is just over an hour away).

The issues: Noah is more or less age appropriate for speech, congnitive abilities and social skills, but is delayed in gross & (some) fine motor and self-help skills. He also needs O&M to help him learn to navigate new environments. The county we live in has never worked with a child with a CI and currently has no hearing impaired children at the preschool/elementary level. They have had a lot of turnover the last few years and than concerns me. The private preschool that I want to send him to requires the 3 year olds to be completely independent with potty training (including getting dressed/undressed).

I think right now I'm leaning towards options 2, 4, or 6, although some days option 7 seems pretty appealing. Less than 2 weeks until our final IFSP - I'd better narrow down my choices...

White Cane

Today Noah had his first O&M (Orientation and Mobility) evaluation in preparation for transitioning to the school system from EI. According to the evaluator he definitely needs O&M, and she recommended that he start learning to use a white cane ASAP. The first time those words came up I was so sad. I didn't want my son to be stigmatized or singled out as different, and a white can makes it pretty obvious that there's a vision issue. Somewhere, somehow my viewpoint has changed. I'm not only ok with a white cane - I'm excited. Noah's going to learn to not walk into walls. Fewer bruises and head injuries: that's a good thing! When he's older he'll be able to go to a movie theater with his friends and not have to worry about tripping on the curb in the parking lot. He'll be able to go to concerts and parks and the grocery store to buy a tomato - all on his own. A white cane doesn't change who Noah is, it just gives him more independence.