Early Intervention Annual Review

Zadie had her annual review yesterday for Early Intervention.  Early Intervention is a state program that is designed to help kids with developmental delays catch up in time for school.  She's been receiving services through EI for over a year now.  She gets speech therapy and occupational therapy.  We had two meetings to update things yesterday.  During the first one, a test called BDI (Battelle Developmental Inventory) was administered.  The therapist asked me a bunch of questions about different things that Zadie could or couldn't do and gave Z tasks to try to do, like stacking blocks and using nesting cups.

Little Z did great on the test!  She improved greatly since the first test was given over a year ago.  All of her scores improved.  In fact, based on that test alone, she does not qualify for EI.  However, since she has the trach and the related speech delay, they used a clinical assessment to determine that she is still eligible to receive services.  She'll continue receiving speech therapy once a week and occupational therapy will be reduced to once a month.  She babbles a lot and she is starting to say words.  The three big ones right now are mama, dada and baba.  She is starting to mimic sounds we make, and she said "duck" yesterday with the therapist while looking at a book with ducks.  She's still signing pretty regularly and still picking up new signs, so all in all, she communicates pretty well.

Happy New Year!

Zadie's 2012 consisted of too many ER visits, five bouts of pneumonia, one very nasty case of RSV, two surgeries and a lot of learning and growing and fun!  We got great news when I checked the mail on Christmas Day (mail that had been delivered the day before) and got the letter from the insurance company that our second level appeal had been approved and Zadie was now back to 16 hours a day, 7 days a week of private duty nursing.  We are in the process of trying to get the shifts staffed.  I look forward to sleeping in a real bed, since my air mattress seems to be losing air quicker and quicker every night.  It might have to do with the 90 pound dog that likes to join me sometimes or the cats that like to jump around on it.  I also look forward to Zadie being able to be home during the day, rather than coming to daycare with me and Jonathan.  It's nice for her to get some socialization, and it's really nice to see her all day, but her health is more important right now, and I'm afraid that she will have a very rough winter if she continues to come with us.  

Zadie learned all sorts of stuff in 2012.  She learned to walk and sign and she even gained back her voice!  It's not 100%, but she can get very LOUD when she wants to express herself.  She can also say mama and baba meaningfully.  She got her palate repaired back in May, and can drink like a champion.  

By 2014, I would love it if Zadie could lose her trach and her Gtube.  I won't get my hopes up or put too much pressure on anyone, but it would be great.  For now, she is happy and healthy and that's all we can ask for.  

No news is good news...

I realized I haven't really written an update about Zadie recently.  The main reason is because she's doing really well and there haven't been any major developments.  She was sick, but seems to be just about over that by now.  She actually started getting sick the day before Jonathan's birthday and I ended up having to take her to the doctor the day of his birthday, which was also the day of his party.  Luckily, that didn't really put a damper on anything, and she got to enjoy the party a little bit.

She has been eating pretty well.  We offer her a sippy cup of milk at almost every feeding (other than when it is a nurse feeding her - the nurses need orders for EVERYTHING, and the written orders right now are to put everything through the tube) and she does really well.  There have been some meals where we haven't had to tube feed her at all!

She's also thisclose to walking.  She lets go of couches or tables for short times and has started bridging distances without holding onto something in between.  No real unassisted steps yet, though.  Soon, I'm sure!  She's doing so well that her occupational therapy through Early Intervention has been reduced to every other week instead of every week. We love her therapist, Patti, and we look forward to her bag of toys every week, but Zadie really doesn't need weekly OT.  We will continue with weekly speech therapy, though.  Zadie still can't make any noise around her trach, so we're working hard on signing with her, so that she has a way to communicate.  It's the cutest thing when she signs!

Zadie signing "more"

Why my baby is so quiet!

This is kind of an FYI for anyone who doesn't know much about trachs or hasn't come into too much contact with anyone with a trach.  I would say that describes most people!  It definitely described me before 9 months ago.

The comment I notice most when strangers are remarking on Zadie (other than how amazingly adorable she is!) is how *good* she is because she hasn't made any noise!  I always debate about explaining to them why she's so quiet, but usually I just nod and smile and say thank you.

Zadie is a good girl and she's generally very happy and content.  She doesn't cry often, but she's a baby and she does cry sometimes.  However, because of the trach, she doesn't make any noise except for the stuffy, congested noise coming out of her trach.  It's a pretty sad sight to see your baby crying her lungs out, tears streaming down her face, with no sound.  I can only imagine how frustrating it is for her.

A tracheostomy is an artificial airway.  The hole goes directly from the neck to the trachea, below the vocal cords, so the vocal cords are completely bypassed.  Some people can move air past the tube and up through the vocal cords.  I've heard that kids start to figure out that if they block the trach with their finger, they can make noise.  There's also a special valve that can be worn to allow the trached person to make noise.  This is a Passy-Muir valve.  Zadie has one, and we tried it once, but she didn't do well with it.  She has to learn (or be able to) blow air out her mouth and nose, and she hasn't done that in over 9 months.  So that will take some getting used to, as well as growing on her part, so that there's more room around the trach tube.

Zadie gets speech therapy weekly, and we're encouraged to talk to her a lot even though she's not babbling back at us.  We are also starting to sign with her, so that she has a means of communication until she gets decannulated (gets the trach removed) or is able to tolerate the Passy-Muir on a regular basis.

Needless to say, we can not wait until we can hear our little lady babbling, talking, screaming, whatever, all of the above!