Monday, November 24, 2014

AAC Device Vocabulary Selection and Customization.

We have been in the process selecting a new AAC vocabulary for Ainsley's NovaChat7 AAC device.  I have spent countless hours on the computer researching, testing, and mostly editing over the last month.  What started out as me editing Ainsley's existing vocab and adding new pages morphed into a major editing. After spending a 3rd weekend in a row doing little else I want to explain why with a video. First you need to understand the underlying shift in thinking that is explained in this excerpt from the blog PrAACtical AAC. I've underlined the points I want to emphasize.
Among the many changes that the AAC field has experienced in the last decade is the notion that core vocabulary is (or should be) an integral part of any AAC system. We grew to understand the limitations of AAC supports that consist primarily of nouns and descriptors, realizing that those kinds of communication displays restricted our clients to requesting and labeling. Our field realized the inadequacy of providing only prestored messages (e.g., limited the client’s ability to communicate anything novel, not flexible enough to meet most communication needs, etc.). In essence, we realized that without core vocabulary, we were imposing a ceiling on language development.
Read the full article here.
If the only way to provide the ability to truly communicate in a way similar to speaking individuals (assuming the choice of an AAC over other options like ASL) is through an AAC using a word based sentence building system (rather than a phrase based one) then that is the direction we need to go for Ainsley. We want that for her. The big question is when to make the switch. I got a bit of pushback from some of the school staff but I'm holding my ground and we are making the change now. I understand their reservations. Initially I didn't think she was ready to take on a more complex system because she has primarily used her device for requesting and labeling. As I thought more about it it dawned on me that there is no way for us to know if she was ready to build sentences because her old vocabulary didn't have the capability and limited the things she could express with it, simply by its design. She would never be able to demonstrate capability with a device that isn't capable.

Although there is logic to the idea that "if it aint broke don't fix it" how do you know it "aint broke" when your child can't tell you or show you? There is no reason to wait until she is frustrated by the limited AAC. Certainly there is no question that there are things Ainsley would like to express that she couldn't with her previous vocabulary and that will only increase over time because the old vocab had a limited number of words and phrases. Although we could expand it again, as we have in the past, that would just delay the inevitable and still leave her with a limited AAC without working on sentence building skills. I think the real the question is can she learn to use a more sophisticated system. I say YES! I know it will take time and work but she is capable. The reason to do it now is that lately she has shown a real increase in her desire to communicate. This is a mindset shift.  It is not just that she is much more interested in her AAC but also that she is asking questions using body language and signs as well as trying to comment about what she sees going on around her, using the limited means she has. In other words she WANTS TO COMMUNICATE. She is eager and ready to learn and that is why I'm working so hard to try to give her a means to do so.  The video below explains and shows the reasons we selected the new vocabulary and why we are taking on the huge task of customizing it.


Monday, November 17, 2014

It's Snot Been Fun Around Here!


Literally!

Ainsley returned to school last Wednesday after missing 11 school days in October and November. I tried to finish this post Friday but had a busy weekend programming her AAC device for a new vocab we implemented today. Though it's feeling less relevant I still want to finish the post anyway because although it borders on TMI for some, I do have some readers with kids that are trached who may like to hear about our experiences as they are considering whether or not to decannulate (the medical term for taking out the trach) their child. I have to emphasize Ainsley has NEVER missed this much school ever! And yet she wasn't all that sick! How is that for perplexing? At least when you compare it to how she typically handled a virus while trached. Going into decannulation we had been warned there was a chance that she would struggle when ill and may even have to be retrached. This post is really about how things went during her first real post-decann illness, but it is also about the pros and cons of the trach vs. decannulation with CPAP, now that we've made it through her first real illness.

Before I get into it I want to explain why I snapped a photo instead of wiping her nose since one person already felt compelled to comment about that. First of all I was in the driver seat (I pick up the middle-school carpool twice a week) and had to get out of the car to wipe. She just sneezed as I pulled into the parking lot. Thankfully. Since it's pretty difficult to wipe a kids' nose from the front seat when they are in the back and you are driving 40 mph on a long stretch of country road. I had my phone in my pocket so it was the natural thing to do since taking pictures is what I do.  At this point she'd been home with me for a week and a half and I thought she was doing better until this came out from hiding from within her nose. I had planned to send her to school the following day but sent my handy photo to her nurse and we agreed to keep her home.

Speaking of nursing: Ainsley got a continuation of nursing services for a 90 day period post-decannulation as we adjusted. Although her airway isn't perfect we feel more confident in her safety as we'd observed her working through difficulty times breathing over that period, and so we did not apply for a continuance. That's okay for a few reasons. Private duty nursing is a double edged sword. Trust me. Some foolish people thing it sounds awesome like free babysitting but it isn't. No body wants to need it. Those of us who have it would give anything for a child healthy enough to get by on their own. We have had some bad nurses over the years that I am happy to never see ever again. However Ainsley's primary nurse has been with us 2 days a week since Ainsley was two and she is great. However having someone in your home regularly is an intrusion through no fault of theirs. In September her nurse made the switch to work 5 days a week to help out as Ainsley adjusted at school to a trach-free life. She assists her with many things throughout the school day: mobility around the school and classroom, assist with the bathroom, gives a water bolus, assists her eating snack and lunch(she is more at risk of aspiration and choking), keeps her safe while accessing the climbing equipment and using her walker on the busy playground during recess, assist her with communication, her AAC device and educational materials. It's a full job even without the trach. She no longer comes into our home. That means when Ainsley doesn't attend school she misses work. We joked that she should have taken a trip to Hawaii. The biggest difference is that she isn't there in the morning to help get Ainsley ready but I've managed. What is most difficult is that we don't have as much time to talk about Ainsley's school affairs but we started a communication journal to help with that.

Now that it has been awhile we are feeling more confident about her airway and have been able to leave her with Evie and/or Adrian for periods of time. Having the flexibility to do that is really great so if I need to run to the store to pick something up I could without feeling like I am risking Ainsley's safety, or leaving my older children with too great a responsibility. At this point I think she could be left with family members.

Although there are advantages to having no trach while sick there are also disadvantages. During this illness she was far more snotty because she has air flowing through her nose for the first time(while sick). Trached the runny nose was very minimal (unless she was able to wear her cap, which she seldom was). However the snot, know by trach parents everywhere as trach-snot, was simply directed to a different point of output....the trach. I was plenty happy that the snot shown in the picture wasn't shot from the trach at the back of my head while I drove. Believe me it happened. Many times. I am really happy not to be cleaning up trach snot from my car windows, TV screens, floor, furniture, glasses etc. in the 3 months Ainsley's been trach free. I might be the best part about a decannulation. I also LOVE not having to do emergency trach-snot catches with my bare hands (preventing it from sticking to any of the previously mentioned places. So those things are good. 

On the flip side of no trach snot, Ainsley still has a pin prick stoma (hole) in her neck that oozes secretions. I have to clean it multiple times a day even when she is not sick. With a trach you have to clean the trach multiple times a day too. When sick the problem is worse and either way (trached or not) if you don't deal with it promptly and constantly her shirt will accumulate quite a lot of snot which is not a good look. I've found that for some reason Ainsley's hair seems to stick to her neck snot more than the trach snot.....like it's been glued, literally. So having two areas to keep clean when sick means double the wiping. If she makes it through this cold and flu season without having to be retrached then they will surgically close the hole which would be really nice.

Coughing has been interesting. When Ainsley was trached and developed a cough, it would often be uncontrollable and lead to bleeding. I believe the cannula (the inner tube) would rub against the trachea and cause an abrasion that would bleed. That would then lead to fever. I do not generally medicate a fever (unless it's severe) for two reasons. First because I know they are more likely to rest with a fever and second the fever itself kills off bacteria and shortens the length of the illness. This time she did eventually develop a cough but there was no bleeding and no fever (100 or higher) until the last few days when she started to develop an ear infection. So I do think these are the reasons that although she wasn't nearly as sick as she's been in the past with the trach, it did drag on longer. Throughout all of this she had a pretty decent energy level most of the time, so she basically watched videos day and night. 

Another thing about her cough is that both trached and decanned her airway seems to shut quite forcefully when she coughs. When she was trached she could still breathe, but decanned she struggles to breathe. She works through it and recovers but I worry about what could happen if the illness was worse. If she panics and cries, then that is the worst of all because the same thing happens to her airway when she cries so it's extra forceful and uncomfortable. In addition crying causes a lot of mucous which she has difficulty managing. It's the perfect storm and it is hard to watch when that happens. Poor kid. 

During the 2 week period there was one scary incident. I put her in bed for a nap. She didn't want to use her CPAP (but needed it) and had a coughing and crying fit that dropped her oxygen saturations into the 80's (unheard of for her) and she actually turned blue for the first time in years. I was a bit scared but treated her with a bit of oxygen which we still have on hand at the house and got her to calm and wear the CPAP. She was better after about 20 minutes and the oxygen was turned off. Honestly we didn't know how she would manage illness because of how her airway reacts under pressure. Her Pulmonologist told me he was expecting that she will end up in the hospital at least once during cold and flu season. Even though she missed a lot of school it is a good sign that she made it through this illness without being hospitalized, yet I say that with a word of caution since we haven't hit the worst illnesses of cold and flu season.

CPAP was extra awful during her illness. The airflow on her CPAP is fairly high pressure, and it flows in her nose and mouth. When she is snotty that means the snot is pushed into her the back of her throat. It then oozes out her mouth and into the face mask. That breaks the seal and interferes with the effectiveness of the CPAP. So while we are sleeping I will hear through the doorway that she isn't breathing well so I get up and clean out the mask and her mouth and put it back on so she can sleep. This can be necessary multiple times a night. Then there are times it's bad enough to wake her and she sits up in bed. Or she simply pulls the mask off in the middle of the night. There have been many times she removed the mask and we find it off in the morning. Other times she actually desats and the alarm of her pulse-oximeter wakes us up. Steve and I take turns nudging each other over who's turn it is to get up.

It's all very much like having a newborn baby if you are a parent you surely remember those days and know what I'm talking about. It's been like that for 8 years. In reality it's kind of a toss up and either way, trach or not, we have a lot of disruption to our sleep. It's much worse either way when she is sick. When she is well we get up in the middle of the night anywhere from 1-5 times. When recovering it is usually 5-10 and if she is really sick 8-15.  It's not uncommon that we climb back into bed just to have the alarm go off again. Even though her sats are 94+ on CPAP she breathes noisily. With the trach she slept peacefully with sats of 97-100. It was easier for us to suction her while she slept than it is for us to clean out and replace her mask. Thankfully usually in the deepest part of her sleep cycle we get a few hours without a waking. Still our sleep is very much effected. I can count on my two hands the number of times in the past 8 years that I've slept away from Ainsley and had a normal night's sleep. Comparing the two, it was quite a bit easier when she was trached than with the CPAP but we are still well prepared for having a child on CPAP by having had a child with a trach. We've lived with poor sleep for a long time now. It's just a matter of degrees.




Aside from being sick her breathing while sleeping has gotten somewhat better in the 3 months post decannulation. The above photo was taken on the morning of Nov. 11th (Veteran's Day) when she was still a bit sick. When I went to wake her up her head was completely covered by her blankets and yet she was satting at 97%. Look what the mask did to her face. At night when she falls asleep on my shoulder she can go several hours before she needs the mask. It's in the deepest periods of REM sleep that she has to have CPAP. This is good because it means I am less worried about times that she falls asleep on in the car while driving like she did this day. Still, we do need a plan for a power outage. Being technology dependent for a basic function like sleep is a bit frightening. The trach felt safer to me than this does.



Eating is an area that can be affected by a trach. I haven't seen a huge change in Ainsley's ability to eat since her decannulation however she'd improved a lot by July so I think the difference just isn't as apparent. She's eaten well in the past 3 months, as she had prior to that (for a tube fed kid who is a new eater). Although Ainsley made a lot of progress eating off and on over the years one thing was consistent. She would ALWAYS regress when she got sick. Although Ainsley wasn't terribly sick this time (not like the flu or RSV) she did still eat. This is the first time during an illness that she was able to get by without any tube feedings when sick. Of course she ate a bit less like any kid does when they are sick. But SHE DID IT! And that I would have to say is because the trach is gone.  Presumably she was better able to eat and breathe even with nasal congestion. In fact I wanted to show you this. Eating Chinese food, with CHOPSTICKS, WHILE SICK! I think this makes it official....

My girl is a real eater!




Speech is an area that can be affected by a trach, but since Ainsley was capped while trached decannulation hasn't made a huge difference, since the cap allows the air to be pushed through the vocal cords for vocalization. The source of Ainsley's inability to speak is due to the complexity of the motor planning required for speech and her difficulty with that motor skills and motor planning due to Cerebellar Hypoplasia, and was likely additionally impacted by the complete lack of a voice for the first two years of her life. This was due having a trach and an airway too swollen to wear a valve or cap(until she was older). We are expecting her to need a touchscreen AAC device for communication for the rest of her life trach or not.

You might wonder how Ainsley feels. I can say for sure that she would much rather sleep with the trach in than wear the CPAP. She slept better too. A month or so ago we had a blood draw to check her electrolytes to check for CO2 retention. It was very normal so we know the CPAP is working even when her breathing sounds bad and she'd been pulling off the mask. I do think she likes having no trach during the day. Honestly we've really just traded one set of problems for different problems which we knew going into this.

My trach mom friends are fantastic. I wouldn't have made it through this journey without their support. Many of their children moved on to decannulate over the years. I have been told that it is not uncommon to have a rough time the first cold and flu season. Only time will tell for sure. 

Tuesday, November 4, 2014

October 2014 Recap

I always know that when we reach October the rest of the year will become a blur, there is so much going on at that time with a short break before we head into the holiday season. At the beginning of the October we always attend the Salmon Days festival and after that I have to get ready for the rest of the month's events. This year:
  • Ainsley's 8th Birthday on the 18th
  • Our wedding anniversary on the 19th (18 years this year)
  • The end of soccer season
  • Taylor Swift's album release (much anticipated by Evie)
  • Halloween
This year thanks to Evie (and Trader Joe's) we celebrated October with pumpkin foods galore. 

It was very fun. Though Adrian grew tired of pumpkin quickly and reminded us of it at every opportunity. 

We took this and this and made..... 

...Pumpkin ravioli with Alfredo sauce sprinkled with nutmeg served with mixed greens with pumpkin cornbread croutons, Parmesan cheese and spiced pumpkin seeds with a balsamic vinaigrette. 
Yum! It was fun and seasonal. Quick and easy too!

*****
Against my better judgement we decided to throw a party with a week's notice since Ainsley's birthday, October 18th, fell on a Saturday this year. We have a thing about 18's. Steve and all 3 kids were born on the 18th of a month, (May, February, July and October) along with many of our friends and family.

So was born the theme of our party, Celebrate 18 Octoberfest, a mixed party to celebrate:

18's
Fall and all things October.
Ainsley's 8th birthday on the 18th. 
Steve and I's 18th wedding anniversary.

And though I didn't tell anyone it was also in a my mind a little bit to celebrate Ainsley getting her trach out. This month on the 21st it had been 3 months. It hasn't been easy. I'll post more about that later.

Of course Evie helped me with the welcome boards. We had a great time making die cuts at Ben Franklin. 

We served pumpkin macaroons, pumpkin seed brittle, mini pumpkin pies, pumpkin spice cupcakes (a few vanilla and chocolate too), pumpkin cheesecake, pumpkin candies, toffee and mixed nuts.

We had German cheeses and spiced apple goat cheese with pumpkin cranberry crisps, Utz pretzels, hummus and veggie/flax seed chips, a veggie plate, salt and pepper chips, assorted bratwursts with onions, roasted potatoes with bacon, Cesar salad with pumpkin cornbread croutons and spiced pumpkin seeds (I really wish I'd taken more pictures but it was too busy). 


We served root beer for the kids, an assortment of Oktoberfest and seasonal beers, a variety of hard Apple Cider, wine and cocktails.


 My color selection for the party of blue, orange and white was based on these beautiful hydrangeas that I had an abundance of in our side yard. I've always wanted to make arrangements with them and thought they turned out beautifully. We enjoyed them for a week after the party. 


My birth father painted this for us. Isn't it beautiful?! 18 years of marriage is no easy feat, especially with the extra demands of 8 years caring for a medically complex child. We love her like crazy though. 
I think she had a great time at the party with the people who love her most.

After most of the guests left we played charades. Ainsley always loves that and tries her best to play along. It was a fun night full of lots of drinking and food, good friends and family.

Thanks to whoever gave us the idea to use our left over brats and potatoes for breakfast.
Our anniversary is actually the 19th so we spent the day cleaning up and hanging out with the kids. 
Ainsley finally got to open her presents.
 From Adrian.

 From Evie.

 Adrian photo-bombing their hug.


 Ainsley cracks me up. For not being able to speak she sure is able to get her point across a lot of the time. 
She loved opening presents.
 We got her the Calico Critter grocery store and a washing machine.

The grocery store comes with so many stickers to apply and parts to put together it's going to take me days to fold all those food boxes(not shown). The hundreds of parts is why we didn't buy this set sooner. 

More than anything though I think she liked the balloons. Evie and Adrian blew them all up because they know how much she would enjoy them. 


*****

I braved the rain to attend Adrian's final soccer game of the season. I decided to leave Ainsley with Evie. It's nice to be able to do that now that she doesn't have the trach. 3 months later I'm feeling more comfortable doing that for periods. I've missed a lot of games over the years because of Ainsley. There is just too much mud to get her wheelchair through on anything but the nicest days. It is beautiful there.


There was a crazy amount of mud due to the heavy rain that week.  Areas around the fields were the worst.

*****

For weeks (and months) Evie has been looking forward to the release of Taylor Swift's new album. She'd been begging to skip school that day and insisted she had to buy the digital version (with her own money) because she couldn't stand the thought that she might have to wait a few hours to hear it. She is nothing but persistent. Finally we agreed if she went to bed early we could wake her up at midnight so she could listen to it. I knew she wasn't going to sleep anyway until she'd heard it. Better that than her possibly staying awake all night and morning in which case she might be in no shape for school. I was so glad when the e-mail came, at 10:00 because we're in the Pacific time zone, announcing it was available. I went to her room. Of course she wasn't asleep. What a change technology makes. Sheesh! She was SO excited she nearly burst. 


She'd baked special 1989 (the album name) cookies that she'd saved for the occasion. We let her eat them in her room while listening to the album on her IPhone with headphones. I think she's already learned the lyrics to all the songs. She sings them all day. 

*****
We had a fun night of pumpkin carving at home. 
Although we'd been invited to a couple carving parties, we just couldn't make it work.
 It was so fun to see Ainsley with her hands in the goop.

Putting the finishing touches on our Grumpy Cat and Taylor Swift 1989 Album Cover pumpkins. 


*****

Ainsley stayed home sick from school and we had a nice morning watching the Heffalump Halloween movie before heading to pick up the carpool kids. 

I made our traditional pumpkin alphabet soup, with a modification to so Adrian's could be vegetarian (it's been 5 months and I'm SO tired of it already). 



Evie is at the age when she wants to be with friends so we compromised and she invited a friend over to stay the night. They had an awesome time. Adrian and Ainsley still got to be with their sister. We were all happy.

Ainsley's becoming such a strong eater. It's taken SO much work over the years. It's been nearly a year now but I could still practically cry when I think of it, and see her eating. And enjoying it.

Amazingly we (I) did better getting the food on the table earlier so they could get out earlier.
Less stress that way, which was nice.

Ainsley's homemade minion costume (The hat, gloves and shirt were Adrian's.)  With a bit of duct tape on a pair of overalls we already had, we didn't have to buy a thing. That's my kind of costume. 
Plus Ainsley loves minions so it was fun for her.

After a potential costume fiasco was averted Evie and her friend settled on being ketchup and mustard. 
So Penny HAD to be a hotdog. Get it?! 
Adrian was a banana rapper. His idea. I got it all with Amazon Prime. LOVE!

Our house looked amazing under the moonlight.

This year we hadn't cut back the grapes and they looked amazing with the addition of orange lights.

We put out the graveyard again.


Spiderwebs and ghosts.

The witch silhouette and haunted dining room. Bats, ravens and owl.


 The giant spider at the door.


For all that effort we had 4 Trick-or-Treaters. Plus our 4. 
It was SO disappointing. With the kids growing older I think this may be our last year with our current traditions. I'm ready for a lot less fuss.



  Steve brought Ainsley and Penny back to the house so they could move more freely.

With all the eating progress this year it was so awesome that Ainsley could eat the candy!!!

Though I did draw the line, refusing to open the full size Milky Way after she'd already eaten two caramel eyeballs, a few kisses and a bag of M&M's. 

As always Penny helped Ainsley clean up her face. Ick! 
But seriously what a good dog to be around so much candy and not eat any.
She deserved her own treats.

  
That's a dog cookie.

The big kids came back and checked out their spoils. Our neighborhood doesn't get a ton of trick-or-treaters so when our kids showed up they got handfuls of candy. 

Ainsley was so happy playing with her bad of candy over the following week. It makes me really happy.

Evie and her friend decided they wanted to have rootbeer, ice cream and candy 
while watching Elmo Says Boo. Seriously. It was awesome.


Evie at 13 sure is growing up but I guess not entirely, quite yet, anyway.  I am so proud of he for so many reasons. Steve says every year when the kids trick-or-treat she always asks the person at the door for "candy for her sister" who cannot say the words and is there but in the shadows because the wheelchair won't get all the way to the door most of the time because of steps. When I think of what that must be like to do that your entire childhood, it makes me a little teary eyed.  I gave her a heartfelt hug and thanks for always looking out for her sister. Sometimes I think my kids are a little spoiled at times, then I remember all the ways that their lives are impacted by having a special sister. 

We do the best we can to have a normal life and we do the best we can to give Ainsley the best life it is possible for her to have. It's difficult to find balance trying to do both. In addition to all this other stuff going on in October we had much an appointment with a brain researcher who is working on genome sequencing. He has seen more cerebellum malformations than any other doctor in the world. It takes many months to get a pre-screening to see him and then many more months to get an appointment. We waited for an hour and a half past our appointment time and he spent a lot of time with us. It was a full day. He called Ainsley very complex, several times. There is much to share but I am going to save that for another post. Thanks for caring enough about our family to check in. I hope you had a wonderful October.