Wednesday, July 10, 2013

Yay, The Lights Still Work!!

As we continued along, we knew we had to do something. Have you ever had something go down the wrong pipe and cough? Your eyes water and it just feels kind of awful. Well, this is what Aviana was experiencing. I felt like this was happening to me more than normal, so I would know exactly what was happening to her and feel the urgency.

Often times, I have to admit...I would start crying. It was an insult to injury moment. Why? Because eating is a basic function of life. Eating - something she loved. Eating - something she couldn't successfully do anymore. Poor eating = even poorer quality of life.

To the layperson, they might just simply look on and say, "hey, that child isn't eating well...just pop a tube back in her" and call it a day. Again, our shoes are not anyone else's, and while yes of course part of us wanted to do that, no decision is ever that simple.

In the beginning a tube wasn't an option for us (until UCD told us to give her a chance), but again - the things we have gotten used to...we must always take a step back and question ourselves once again. As I have said multiple times on here...for us - her quality of life is a key component. Is going back to a tube part of a quality life? We were between a rock and a hard place - in so many ways.

1. She was eating her food by mouth and tasting all that we were making, but she was coughing and getting tired of eating.

2. She often times, doesn't like to open her mouth.

3. Feeding was taking anywhere from 30 minutes to 1 hour, and often times could only be done by certain people...mostly Dave or myself.

4. She would be going through another surgery, and as part of keeping her comfortable, we're trying to avoid surgeries.

5. Guess who they wanted to perform the surgery? Yes, that doctor. I would never have let that happen, but that office would have been involved, and I would have had to come face to face. Talk about emotions in motion.

6. We've had the tube before and while it's not that bad, we just didn't want for her, or us to have it again...that is - if we could figure out a way to avoid it. In our experience, as careful as we were, they leak, get clogged, the stoma site was a little interesting, and the durable medical equipment department at Kaiser was no picnic.

No matter all these things, because she was struggling to eat, we realized she shouldn't have to - and neither should we, or anyone else who fed her. There had to be a better way!

In the meantime, we decided to have my cousin's daughter start watching Aviana a little bit here and there so we could go to dinner, etc. We could only go between meals though, as we didn't think it fair to either of them to have Sydney feed Aviana.

Thankfully, a lightbulb went off over Dave's head one night. He looked at me and said, "What do you think if we blend up Aviana's food like we used to for tube feedings and have her drink it through a sippy cup?" He went on to say that it would most likely stop Aviana from coughing. Sydney would also then be able to feed Aviana and we would be able to stay out longer. I was shocked! A tube feeding through her mouth?!? What?!? Why had we never thought of this before?!? It was absolutely brilliant! Would it work? It could solve every single one of our problems.

1. She would still be tasting the food through her mouth, but she wouldn't cough!

2. She would probably open her mouth!

3. The feeding time would be a breeze!

4. She wouldn't need another surgery!

5. There wouldn't be any worry of who's doing what!

6. There wouldn't be any tube to worry about! No clogs, leaks, DME, or stoma site to worry about!

* It would add some quality to her life, because she wouldn't be coughing - yet it would at the very same time take some away, as she would be drinking her food : /

We dusted off the old Vitamix and got back to blending! We were excited to see if all this would work for the comfort and ease of everyone involved!

Avi sweetheart...would you like some liquid gold? 

And the verdict is...Avi sucks each meal down in less than 5 minutes! And she doesn't cough. And everyone can feed her with ease now! And, everyone seems much happier about the feeding situation!

Actually, I shouldn't say everyone. There's one certain little pup that's not too happy about the new feeding arrangement. She's no longer in demand. Her 'clean up crew' services are no longer in dire need. I know she'll come around though...she's highly adaptable. I've upped her treats : )


We can't believe this didn't dawn on us sooner, but at the same time - I'm just so happy Dave thought this up. 

When I really think about all makes perfect sense to me. It's a strange concept when you're on a full blown mission of recovery and then have to change gears, and scale back on everything! It's almost like you are in reverse, yet moving forward. I tried to wrap my brain around what I just wrote. So yes, it takes time. There's so much that goes into every single solitary decision involving Aviana and her care. It's like cities built upon other cities; so to understand - one would have had to walk all her streets. Isn't that what all of us are like? I have a feeling : ) 


  1. Whenever I see a pic of Rainey, I want to grab her face with both hands and kiss it to death! She is a doll.

    I'm SO glad Dave thought of that and it's helping Aviana! I hope it continues to work for you guys. Sending good thoughts always!

    1. I fully understand ; ) And I do too!!!! I'll tell you what...I'll take her sweet little Rainey face and do double time - for you and me ❤

      I hope it continues to work to, Avi can be a tough cookie! Thank you so much!!

  2. SO,SO happy for all of you! Just a ? Can she have a variety of foods through the sippy cup? or is it all the same, just wondering :o)
    The pic of Avi, she looks GLOWING! You guys are amazing!!
    Tell rainy I love her pose :o)
    Cindy from NC

    1. Hi Cindy!

      Thank you so much!

      Yes! She can have whatever we throw in the blender : ) We have still been pretty much sticking to what her diet was to control seizures and good health, but have been adding in some stuff to give some good flavor. She hasn't complained yet, but if she does...we'll definitely make some modifications. At this point in her life, it's all about quality, so we are willing to go with anything she likes...we'd be open to giving her whatever she likes that doesn't make her sick or increase her seizures.

      I'll be sure to let Rainey know. I actually snapped about 8 pictures at that time. She looked adorable...sitting with her little leggy to the side...and all beside herself : )

  3. Avi looks great :) so glad you guys found a good feeding solution

  4. That's awesome! Maya would not eat as a baby. Since we were living in Guatemala it was fine but I didn't think she could live on formula. She ended up getting rotovirus and was basically having starvation diarrhea. Seemed bad at the time but thats when I came up with food bottles. She would drink anything, so I would blend up anything and everything and she would drink it done, it was awesome. No more wasted home made baby food. So glad this is working for you as well, not another surgery.

    1. Oh my gosh, that sounds rough. I would have been pretty nervous if we picked Aviana up and she wouldn't eat! You are so smart to have thought of that!! It must have been a lifesaver! It certainly is for us : )

  5. So glad you posted. I've missed you. I'm celebrating with you that Dave came up with the 'sippy cup meals' and Avi responded so well to them!

    1. Awww...thank you so much! Thank you for celebrating with us! We are surely over here doing some happy dances : )

  6. Woohoo - that is such great news! What a relief because I know how stressful the feeding situation was. That Dave, he's a keeper :^)

    Sending you all lots of love ♥

  7. Awesome! So glad for you all.

  8. What a wonderful answer to the food dilemma and to Avi's coughing/discomfort! And it does give her back the control. 'From what you've said, Avianna does sometimes like to be the one in control. She can suck as fast as she wants...or not. She's doesn't having to open her mouth when she doesn't want to, when the spoon is there in front of her. Another reason Dave is a are YOU, Jen! I can see how you must all enjoy her mealtimes so much more, now. You gave Avi yet another gift, in that she can enjoy food/tastes, and she can savor or gulp as she chooses.
    Nancy in the Midwest

    1. Hi Nancy!

      Yes, she sure did love to be the one in control, and she doesn't have any of it anymore. I tried to give her back some by letting her take the bus to school. This is where I have struggled the where to give the most independent child I have ever seen or known...some control. Control in closing her mouth for feedings was sure not where it was at! Thankfully, mealtime is not a struggle anymore. One less thing.

      Dave's brainiac ways are one of the absolute frontrunner reasons why I fell in love with him. He's always pulling stuff out of nowhere. I couldn't be happier about this latest and greatest one ❤

      Thank you so much for your compliments.

  9. This is so great! Isn't it funny when an answer just comes sometimes? I'm so happy Aviana is enjoying her food more, and I hope you and Dave get lots more date nights! :)

    1. Yes it sure is, and you think, "what the heck...why didn't we think of that ages ago?" But then, I suppose we understood why. But still, it sure would have saved us a whole lot of frenzied feeding!!

      Thank you! It has already... : ) : ) : ) : )

  10. My daughter had a huge problem with eating until she was five. She would only eat puréed baby food. Any chunks and the gagging would start. She had no medical reason that we could find. Just did not like to eat, period! We had two options, feeding tube or baby food. It was a battle on a daily basis. We chose eating by mouth because she could eat. She just did not want anything other than liquids. It never once dawned on me or my husband to put it in a sippy cup. Wonder how much easier life would have been for us all. The baby food ended when she went into kindergarten. Peer pressure, maturity, not sure, just am so grateful she figured it all out. She is now fifteen and is still just as opinionated and stubborn as ever. We love her to pieces and that stubborn streak is what has helped her survive having three older brothers. Food still has to look, feel, smell and taste just right before she will eat it. But alas, she does eat and all is well. Congrats to you and Dave and Aviana for figuring this out! I know it is a huge relief. Happy sipping Aviana.

    1. Wow! That's interesting. Yes, like you said, it sounds like it has shaped her into the person she is in a way ; ) I find it fascinating though how she still carries it with her, how it was very real - not like a stage to grow out of completely, but more of a food evolution of some sort.

      My cousin's son is somewhat like that. I wonder if he will carry those traits into adulthood? Your comment has caused the wheel to turn ; )

    2. Hi Jen, I live in Saudi Arabia and I really enjoy your blog. I have fallen in love with your family through your writing. What a wonderful gift you share with us. I am about to come to the states to get my daughter ready for boarding school. They have great craftsman ship over here. I am having something made for you that will be a nice keepsake. I would love to send it to you. I am sure you don't want to give out your address on the Internet. Is there any place I could send it and still allow you to keep your privacy?

      Thank you

    3. My email:

  11. 1) Aviana looks so beautiful in that photo!
    2) Rainy has seen happier days. She's clearly mopey about no food clean up.
    3) I would have never thought of blending the food so that she can drink it through a straw - my brain just doesn't problem solve that well.
    4) Your husband = BEST PROBLEM SOLVER EVER!

    1. Thank you!

      I completely agree! He pulls these problem solving type things all the time! I'd have to say, he's a good one to have around : )

  12. This post makes me so happy. I love you guys!!

  13. Jen,
    I know how important this is to you guys! Oh my word, what a little miracle thought. I am so thrilled for all of you! I knew you married Dave for a reason. :)
    BTW- I hope your Anniversary was great!

  14. Jen my girly ;-) it never surprises me that you and Dave can figure it out for OUR girl! I will never know the hard road you travel but I cried to know that once again it is you two who know what is best. You never give up you just back up a little and look for a new way. Thank you God for the new door that has opened. I hope by now that you have taken time and gone to dinner and out to the movies. Sydney and Aviana will have a great time together and spend quality time that baby girl needs.
    What a wonderful Sunday to see this beautiful story!

    Julie n Texas

  15. That is soooo kick ass!!!! I know how feedings were draining you in every way possible. I'm SOOOOOO glad you (well, Dave) figured out something! YAY YAY YAY!!!! So happy for you!!!

    And I'm so sorry that I suck at commenting. Since I lost google reader I just forgot to read blogs. Trust me, I think of you all the time (hence my emails and texts to you) but I completely forgot there was something such as a blog that people used to write about their lives! I know, I'm an idiot. I also know you understand :)

    I love you and I'm sooo glad for you!!! So is Beya, she was the one to tell me what happened. She clapped with joy when she read me this post :) Give hugs to your mom and your family {hearts} {hearts} {hearts} {hearts}

  16. So glad you found something that works! Just when we think we have things figured out - these kids change something on us... It's actually true of my typical kids too - something I'm so glad is typical of our brain injured kiddos - sometimes they're just so, well, typical! Hugs!

  17. Woohoo! I am so glad ya'll found an easier & better way. Go Dave!