Jul 29, 2011

What's This?

What is this a picture of?

This is the picture of a little girl who is learning to like eating and got herself into a chair at the table FOR THE FIRST TIME...BY HERSELF!!! (Yes I positioned the chair for her, but then I simply told her to sit down and left the room to get the food, and when I came back she was sitting in the chair!)

So she can EAT!!!


Jul 25, 2011

7/25/11 Laryngoscopy Results

Ugh. Here are the photos from today's laryngoscopy.

And here are the photos from her last laryngoscopy on 2/8/10 when they removed the granuloma and her "tonsillectomy"/adenoidectomy was done.

The main picture of interest is the one in the upper left of each "page". Does the one on the top look a lot different than the one on the bottom? I don't think so either. If anything I think the one on the bottom looks better. But then Ainsley cut her knee Sunday(go figure), it bled a lot and she cried for over 2 hours so there is a chance her vocal cords were inflamed a bit today.

Her surgeon came out of the OR saying things are better than he thought in her airway so he is back to not being sure the surgery is a good idea. We didn't nickname him Dr. Jekyl for no reason. We've been talking about doing a Posterior Cricoid Split for nearly 5 years. He says yes, then no, then yes and so on. Don't get me wrong I'd be happy not to put my daughter through an intense airway surgery the problem is she might need it. What changed in the 2 weeks since our appointment? His mind, basically.  It's rather complicated to explain but I'll try.

Here is the situation: Today he saw there is no collapse due to the trach. There is no granuloma (caused by the trach, like the one they removed last year). There is no significant subglottic stenosis (narrowness of the trachea below the vocal cords). Her vocal cords are a little short making her airway small (we've known that). They open but not super well. There is a bump, likely damage from endotracheal intubation at birth and scarring from then too (we knew that). The bump could be reducing mobility of the vocal cords plus the scarring.

Essentially her airway looks pretty good. This explains why she has been capping (covering the trach and breathing through her mouth and nose) for 2 1/2 years. Yes, things improved further in June after we started giving her Prevacid on an empty stomach in May, but really she's been doing well with the cap for a long time. The real problem is that she obstructs when she goes to sleep. Let me say this another way if she was able to do as well asleep as she does when awake we would have lost the trach last year or earlier.

The surgery could improve the situation with her sleeping by creating some space between the vocal cords. His concern is that he might do the surgery and it wouldn't help the OSA and she'd still need the trach. We knew that already. He also is concerned because there are risks: aspiration and decreased voice. We knew that too. He's also saying that the OSA may be in the nasal palate area yet 2 weeks ago he said he finally had to admit he didn't think so.

He said he would be more in favor of the surgery if we'd hit a plateau. I pointed out that in a way I think we have...like 2 years ago. He is encouraged that she is no longer removing her cap. While I agree this is a great change I think it is due to a very minor airway improvement since she'd been able to remain capped all day if her nurse was there to watch her every second. Her sleep issues still seem very much the same. And the photos are the real proof to me that things aren't much different.

He gave us as much time as he could to discuss it since he had a child in the OR waiting for him. And he understands all our points and concerns and "wished he had answers". This would leave us once again at the status of waiting and hoping she outgrows this. But I asked for a sleep study. He agreed to call it in and then said to make an appointment with him afterward. The problem there is that it takes about 3 months to get in to see him. So even if things went well (which they won't) we'd be looking at fall/winter before discussing things again which means no surgery anytime soon. So why do a sleep study when I know she can't sleep with the cap? At this point I think we need a base line to really show whether things are improving or not. And I want the doctors to see it themselves, so they aren't just relying on our reports about her sleep issues.

I respect that he is in a difficult position.  That there is a lot at stake. That there are no clear answers. I just wish he didn't keep suggesting surgery as an option just to change his mind.

Jul 13, 2011

ENT Follow Up, New Wheelchair & Mid-Summer Update

Yesterday's ENT appointment couldn't have gone better, really. The doc scoped Ainsley and we got the best view we've had to date. In part I was able to reason with Ainsley a bit more than in the past and she remained more calm so things weren't as wet. But it also looked like there was less redness in the upper airway, probably from the Prevacid changes. She remained capped for the entire appointment. He asked about sleeping and I told him that she still has difficulty sleeping with the cap on which is currently the biggest issue for her.

Since he got a better look he felt he could fairly safely rule out obstruction through the nasal palate area due to craniofacial issues, or in the area in the back of the tongue and he believes the area of difficulty is in the area though the vocal cords, which though they open, don't open real far. So he wants to do a laryngoscopy under anesthesia to evaluate her airway again and make sure the granuloma he removed (caused by the trach) hasn't grown back. He again talked about the options of a Cricoid Split surgery or cutting away part of the vocal cords.  We were able to get in on July 25th which is great since it's still summer so if he does decide that she should have surgery it might be possible to get it scheduled prior to the start of school in September, after which she is likely to get sick and cause the surgery to be rescheduled. Here is an image from the video of her airway with the cords open so you can see.

I took the trach out at the end of the visit so he could see how she did, while we signed consent forms. I was glad the ENT got to see how well she does for himself. For awhile we've been stuck at this point of her having a borderline airway just a bit on the small side. Well enough to do okay during the day (unless she cries or get exerted) but too small to breathe comfortably during sleep. I've always suspected she would need surgery in the end. But I also know airway surgeries fail. I would hate to put her through that and have it not work but we won't know unless we try it. Waiting for things to fix themselves also may not work. There will be more tough decisions ahead. Please think good thoughts for us for the 25th.


We finally got our Convaid Rodeo push style wheelchair last week. WooHoo, it fits her!  It was a real challenge to find the right chair for Ainsley's body type (tall, thin with a long torso but not a deep seat) and it is adjustable for growth. I didn't want to have insurance buy a chair this expensive unless it could last a few years. We wanted something that reclines so we can lay her back if she falls asleep, but in the end we got tilt instead so the chair is "transport approved" (is crash tested and has tie downs) and she can use to ride the bus to school. We'd been using the 7lb MacLaren Volo which is meant for age 3 and under. (It looks bigger because it's closer in the picture.) Now I will be hefting a 28lb + chair out of the car, but that's unavoidable. At least she seems to like it and be comfortable. I started shopping for a chair in September and we "ordered it" in December.  It was ordered without the tie downs, then had to go back, thus required reauthorization from insurance and Medicaid and was sitting at the DME since May. It is SUCH a relief to have this DONE. Although I just opened a letter from DDD/Medicaid saying certain parts were denied though the DME told me they got approval and obviously released the chair to us. So it's going to require some follow-up. Annoying. But at least we have possession of the chair!

Sunday Evie left for sleepaway horse camp. She was so cute in her cowboy boots and horse shirt. It's all she's been able to think about for weeks. She went with two of her best friends from Seattle and she was SO SO excited, had been looking forward to the day since we registered in January.  They sleep in covered wagons. I was a wee bit nervous about sending her to ride horses since her only experience on a horse is the pony rides at the fairs. Friday we go pick her up and see the "horse show". I can't wait to see her ride! I hope she has the time of her life! And doesn't come back grumpy, missing her friends! 

I'm trying to spoil Adrian a little since he's bored at home while she's gone. He turns 8 on Monday!  It feels like yesterday that HE was my baby. The years since Ainsley's birth have FLOWN by and she is not too far from turning 5! Anyway he's having a sleepover "campout" birthday party with a handful of kids in the backyard Saturday.

I LOVE this boy! (And my girls too of course.)

Since we just bought a house we have no exotic travel plans this summer. My hope was to do a lot of backyard play and entertaining. The weather here in Western Washington has been crummy, no sun and actually a bit cold at times. With all that we have going on I'm afraid summer is going to be over before it evens starts. So if you are lucky enough to be in a part of the world that is sunny and warm right now...ENJOY!

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!