Jul 7, 2011

Upcoming ENT Appointment and 4th of July

Yikes I'm in a crappy mood today. Perhaps that's a sign that I need to blog. I guess it started when I got an early morning phone call that our ENT had a cancellation for this coming Tuesday(I was on the wait list). I should be happy since the earliest appointment I could get months ago was August 30th. With the new appointment perhaps if he wants to "do" anything there will be time before the end of summer. I know the minute Ainsley goes back to school she will catch a virus, and that makes scheduling any procedure (such as a laryngoscopy) under anesthesia dicey at best.

I guess I've been in my head all day thinking through all the possibilities and options. I would love to be optimistic, but I don't expect much to come from this appointment. In my fantasy he would suggest an airway surgery that would fix her airway and the trach would come out this year. I'm expecting more "wait-and-seeing". If nothing else it will be nice that he can scope her and see if the Prevacid changes have done anything to help alleviate the leftover airway swelling. The pharmacy wasn't properly labeling her prescription, so we are now giving it on an empty stomach as it should be. Thanks to my friends on the trach forum for giving me that information.  In addition we switched to the Solutabs which have a reputation for being more effective. She is having an easier time forgetting that she's wearing her cap. And she has been eating more. Since you can't see the airway the only way to know for sure what is going on is to stick the camera down her nose and look. We shall see. So stay tuned to see what the results are next week.

On a positive note, as I said, the med changes have caused enough of an improvement that we've seen a dramatic increase in her ability to swallow. I didn't want to say anything until I knew it wasn't a fluke. Now it's been nearly a month of her drinking a fair bit of her blenderized formula from a cup and straw. It's the consistency of a smoothie, but not quite as tasty because it's healthy and contains chicken and veggies in addition to the fruit and yogurt (and other ingredients). She's also become much more interested in table foods. She will put food deep into her mouth, even biting off pieces and spitting them out. She doesn't know how to chew and swallow them yet but she is enjoying the food and that is the main thing. We are probably still light years away from getting her to take all the necessary calories orally to maintain a healthy weight. But it is a massive bit of progress after years of frustration. Here are some images from the past month.

 This may be another factor. On 6/9 we taught her to spit food out. Counter intuitive, yes, but actually it gives her a greater sense of control now that she can get food out of her mouth by herself.

Over the past month she has developed a serious love of pizza crusts and will bite them into pieces (still not swallowing them though).

This is actually a bit of a problem because she's a tall girl and can now get into the pizza boxes by herself. 

And do this to the pizza. This does not make her brother happy.  Plus she is demanding of crusts. This is okay if you don't like the crust, but annoying if you do. Especially while you are trying to enjoy your pizza while she's mad at you because she wants your crust.


 



On 6/20 she completely wowed us by eating Yoplait peach yogurt which, by the way, has CHUNKS in it. Chunks which she has previously found difficult to swallow without gagging.





She even spooned it all by herself!

 Signing for more each time the bowl was empty.

Until she'd eaten then ENTIRE 8OZ!!!!!! WooHoo GO GIRL!

 She's demanding some of EVERYTHING we have to eat  at EVERY meal. This includes SALAD, which she really likes to put in her mouth now. 

One day the kids and I had a real tea party. Ainsley drank real tea from a china cup. Impressed?

She especially likes tortilla chips and popcorn but will put the "used" soggy ones back in the bowl if you aren't watching.  

On the 4th of July she impressed our family by biting a hotdog into pieces (still not swallowing obviously). Of course Nathan's are DELICIOUS. That shirt was cute and clean when I put it on her, I swear.

While I'm at it I guess I'll share some more 4th of July pics. We had a great time and it was fun to host since we live in one of the few areas still allowed to have fireworks, being in unincorporated King County.

Evie planting pinwheels.

Ainsley enjoying the lounge chair with Grandma Glenna.

 Our pergola decorated for the occasion.

The kids loved taking turns wearing this goofy hat.

Everyone had fun playing bocce. It's great to have a lawn bigger than a postage stamp.

We celebrated my mom's birthday which is actually on 7/5.

 I helped Ainsley do a sparkler. She LOVED it! And signed for more.

 As far as I'm concerned sparklers are the best. I'd be happy just with that.  But we did get other fireworks.

When the sun went down we started with the "flowers" in the street. Ainsley had fun sitting on the boulder with Daddy watching. 

Then Steve let off the rest in the backyard, mostly fountains.

Yikes. There were a few aeriels in the box but luckily we didn't catch the shake roof on fire. It's not quite like the big shows but still fun.

I feel a little better after blogging. Stay tuned for ENT appointment results next week. And pictures of Ainsley's push style wheelchair which we finally get TOMORROW after months and months of waiting. Hooray!

4 comments:

  1. It's awesome to see Ainsley doing so well with eating! Love the pictures and love your new house - all that space is fantastic. Hope the ENT appointment brings you better news than you expect - wouldn't that be nice for once. xoxo

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  2. What!!!!! she is kicking butt!!! ! Wow!!!! Way too go Rock Star!!!!! I am so excited to read this!! What a huge step!!!!! She is sooo cute!! as is your entire family!!! your new house seems to be fitting your family well!! we should get together soon!!

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  3. Susan!
    I checked my calls this morning, I missed your call last night ):
    We had a hospital appointment yesterday and well you know how those go? Hours and hours.
    We were all in bed so early.
    Tomorrow we have another appointment, call Thursday, let's catch-up.

    I love the "eating" pics! You just wait, she will be swallowing before you know it.
    I am so happy that you posted that image of Ainsley standing to reach the pizza. Okay that is exactly how Gage's feet turn in, inwards, kind of like a collapse. Best thing would be supportive shoes? What is your opinion?

    I love the pergola! I love fireworks, we awoke the children late one night and went to see fireworks. HA! The fireworks lasted maybe 10 minutes and I am more than positive they were thinking we sucked. "You woke us for that?!"
    Next year not doing it.

    I love your new home! I love all of the beautiful space.
    I miss you so much, and I hope you are all well and healthy!
    xoxoxo
    All the love in the universe from me to you.

    ReplyDelete
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