Friday, January 18, 2013

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.

Wednesday, January 16, 2013

Plastic surgeon follow up

Zadie had another follow up with the surgeon who repaired her palate. It's hard to believe that it's been more than 8 months since she had the surgery!  He said she looks great, and in particular, he remarked on how good her lower jaw is looking. He said that he's glad we never did anything surgically to it.  Her lower jaw was recessed when she was born (a hallmark of Pierre Robin Sequence), and it was a major reason she had trouble eating and breathing. If she had been born in another hospital, she might have had jaw distraction right away, and she might have avoided the trach. But, she was born where she was and they don't really do jaw distractions at St. Barnabas. So, she ended up with the trach. A plastic surgeon at CHOP later suggested a jaw distraction in order to get rid of the trach, but we weren't positive that it was completely necessary, and we decided to wait and see what her jaw did on its own.

It's possible that she will still need some kind of jaw surgery in the future, but right now, she's looking good! We're hoping to get rid of the trach in a few months and just keep moving forward.

Tuesday, January 15, 2013

Knocking on wood....

Zadie's been really healthy!  (knocking on wood).  Her brother has been feverish on and off for the past two days, so I'm afraid of her catching whatever it is he's fighting.  But meanwhile, she's been great.  I've been trying to work on the Passy Muir Valve (speaking valve), but she's such a little stinker that she doesn't want to keep ANYTHING on her trach at all.  When we're out of the house, I'll manage to get her to keep the HME on most of the time, but she still pretty much takes it off constantly.  And when we're home, she pretty much downright refuses to wear one.  So when I try to put the PMV on her, it's the same issue.  She'll keep it on for a minute or two and then pull it off and hand it to me.  I talked to the ENT's office today to get suggestions on how to get her to wear it longer, and they just suggested distractions (like TV, iPhone, etc).  Any trach moms have any other suggestions?

Thursday, January 3, 2013

Busted balloon

I really look forward to the day when Zadie doesn't need any foreign objects in her body to help her live. There's always the concern of her trach or Gtube coming out. Today, her Gtube popped out as we were leaving soon. It's held in her body with a water filled balloon. Occasionally, the balloon will pop or get a leak. I realized that was the case this time since the balloon was almost completely deflated.  This is an illustration of the type of feeding tube Zadie has, a Mic-key button.

We have a backup tube, but it was at home. I decided to pop the broken one back in and tape it up. The closest thing I could find was Scotch tape. Not ideal, but fine for the two minute drive home. Somewhere between school and home, the tube fell out again and I haven't found it yet! When we got home, I put the new tube in. By now, this is old hat for both me and Zadie. I took a picture of her belly with the button in to share here. 

Cute Zadie belly

As I said, I look forward to the day when we don't have to worry about this stuff!

Wednesday, January 2, 2013

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.