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Ainsley Mega Update - Fall 2012

Posted Oct 12 2012 11:33pm
A couple weeks ago a reader contacted me asking for an update on Ainsley. I'd just posted about her feeding progress and hit the highlights in that post.  That got me thinking though that perhaps it is time for a category by category update. However I want to say, rest assured, if there is anything major going on I do post about it.  Since we had an appointment with Ainsley's ENT (airway doc/surgeon) on Tuesday it's a great time to finish this update.

Trach - Ainsley has been wearing a Shiley 4.0 Ped trach since our trip to Cinci in May. I do think the larger size has been better for sleeping. Since the tonsillectomy it seemed her airway was a bit larger. She was still able to wear a cap (which means she is breathing through her nose and mouth) even though the Cinci doctors couldn't understand how she was able to, given her swollen upper airway. At times I offer her a choice between a speaking valve and cap and she will actually chooses the cap. Still I was only having her wear it when she was in water or eating because I was concerned. Even though things seemed better, I've been fooled before and have learned that the only way to know for sure if the swelling is improved is to look. My hope was that removing the tonsils might have alleviating some crowding and would help the swelling.

I didn't get a great look during the scope. They put the endoscopic camera down a nostril pointed downward at the airway and as you can imagine, the reaction you typically get from a child is crying. I tried to hold her still and calm her down. Normally we review the video with the doc afterward but unfortunately this time it didn't get recorded. Luckily they upgraded their equipment and we got a little better view and even without the instant re-play the doctor's impression is that the swelling alone isn't the reason she requires the trach, and that it's actually that the vocal cords don't open as fully as they should. Of course it's hard to say because she is crying during the scope and we know she struggles to breathe when she cries. It would be great if she would stop crying so we could get a look at her airway when she is calm. Despite talking to her about it the day before and explaining why she needed to "not cry and hold still" she didn't. Eventually we will probably be able to bribe her, but she isn't there yet and so we have to take what we can get which is a few seconds glimpse of her airway at it's worst.

After watching her breathe with the cap on he felt we could go back to capping while awake as tolerated. She has been wearing her speaking valve pretty much all day, every day pretty much since last spring. So hopefully her airway is good enough that she can cap comfortably.

The benefits of capping are: 1) a stronger voice 2) increase sense of smell and therefore taste 3) normal humidity to her lungs  4) keep junk from going into her lungs (fibers from clothing, dust and other small particles). So it makes sense to do it as tolerated.

However, there are times that she will struggle and the cap will have to be removed 1) if she's crying 2) if she is coughing 3) if she is exerted 4) if she is sick 5) if she falls asleep. 

In the past capping was a bit stressful because I was trying to keep her capped to work toward decannulation (permanent removal of the trach) but if that isn't the goal then the pressure is off and this change won't effect us too much, and if she starts to remove the cap we will simply go back to the speaking valve.

The surgeon did have an interesting idea, which is to Botox her vocal cords, in effect creating an opening between her vocal cords much like a partial cordectomy (which we could do if we felt it was safe and the best option). The risk is that it could increase her risk of aspiration which can cause lung damage. It also might have a negative affect on her voice because the cords would be somewhat apart. Unlike surgery Botox would be temporary, and have to be repeated every 3 months. The good thing is that it is temporary, so if it didn't work well, we could stop doing it.  If it worked well, solved the OSA and there was no negative consequence to her lungs then we might decide to move forward with surgery so that she could live a trach-free life which would certainly be nice.  I decided that I'd like to push for more progress with eating and consider whether to do the Botox next spring after cold and flu season is over.

Obstructive Sleep Apnea(OSA)- While it is great that Ainsley can wear the cap during the day she still will obstruct while she sleeps. What happens is that she will be okay as she drifts off to sleep but as she get deeper into sleep she relaxes and the obstruction gets worse. At some point she can't breathe well and she wakes up, then she'll doze off and the cycle will repeat. What this means is she really can't sleep unless she's breathing through her trach. In the past we considered decannulation with CPAP, but after trying it (while capped) I decided it just wasn't going to work 1) because she needed a full face mask and that would be near impossible to wear when she has a cold 2) her OSA is severe enough that she can't sleep at all without the CPAP (if decanned) which means no falling asleep unless we have the CPAP machine 4) she isn't emotionally mature enough to understand and cooperate every single night hence it would likely be a huge battle initially. 

Illness - Ainsley is remarkably healthy for a child with lots of issues and a trach. Many kids with trachs are frequently seriously ill enough that they end up being hospitalized. So doctors can't believe it when I tell them she hasn't had any pneumonia's or hospitalizations (non-surgical) since she was a baby. Of course she gets ill like any kid , and it is more difficult for us because of the more frequent suctioning needs, including in the middle of the night when she is ill.

Feeding - We've been working hard on oral feeding and you can read all about that in this post here . I have her wear her cap when she eats to increase airflow to the nose and therefore increase taste. With our busy school schedule, for reasons of convenience, Ainsley is being fed Pediasure. It is faster to feed during the morning rush (3 kids in 3 schools leaving at 3 different times) and is easier for the nurses at school during lunch.  She also gets an oral snack during snack time, usually something with texture, either applesauce or thick yogurt as well as some form of cracker. The nurses also try to have her eat some lunch orally. Then she has an oral snack after school and she sits at the dinner table with us with a plate of food. All this eating is at her pace and is really still in the category of "recreational".

I do have some exciting news in this area: Since eating  the goldfish Ainsley has also eaten (actually swallowed) french fries, beans, chicken, turkey (4 bites of it, thinking like Thanksgiving), cheddar cheese cubes, elephant ear (at the fair), pumpkin cookie, and green grapes (seriously, cut in half, don't worry) skins and all. I always knew if we could break the texture barrier she would eat. She doesn't have the endurance to eat all her meals orally. We will keep working on it.




Surgery - At this time we have no surgery planned. Ainsley eyelid surgery in June was somewhat of a success. When she chooses to use her sling to lift her eyelids she can get quite a lot of lift. I do feel like the reduction in the length of her eyes was overdone and her eyes seem a little small and pinched. When I see old pictures of her beautiful eyelashes I have a moment when I feel a little stab and want to cry but there is no undoing it so I try to look at the positive, which is that they look better in certain ways. When she is not using the sling/brow for lift her eyelids are still lower than I'd like. The following pictures were taken at the same time and illustrate my point.





We met with the surgeon in August and he felt the lids were lifted as much as he'd intended and that we could still see some improvement. We go back to see him in November and will decide if the lids need to come up a little. It is a minor procedure if they do, so long as it's done in the first year post-surgery. He would simply open the incision at the brow and re-tie the tendon a little higher. I would like him to, but I suspect he won't. She is still having a little discharge from the left eye, the one that was a bit pinched that we asked him to "open up a bit". Unfortunately the lids healed together, so essentially it did nothing.

Walking - We were seeing a PT during the summer and she showed me some more effective stretches which helped her legs to be able to be more straight (they were quite tight from spending a lot of time in casts/braces) which in turn makes it easier to stand (less like a squat).  She did a lot of standing in and around the pool (weather permitting) this summer. Here is a little video so you can see.


Ainsley is really pretty strong, the biggest issue is balance. She walks quite well in a walker, though posterior walkers do tend to teach kids to lean on their arms and do little for learning balance. Still, we had it written into her IEP(Individualized Education Plan) that she would use it for all transitions with the exception of when they walk long distances when using the walker would cause her to miss an activity.  Her school walker is a bit more compact and she's pretty good at navigating it through the crowded classroom. At home she still finds it more efficient to crawl because it's a lot of very short distances. Although Ainsley stood independently for about 5 seconds during the summer she hasn't been able to do it regularly. Standing balance is the missing piece we are working on. There are a variety of activities we do at home to "work on this".

In addition she RODE A TRIKE! If you missed that post, here is the link  with the video.

Speech/AAC - Ainsley's communication hasn't changed much. She does say a few words: mama, all done, down, on, no, yes but it's isn't always clear what she's saying. I suspect there are more words she "says" that we just can't understand.  She knows about 30 signs. We are still working with her to use her Nova 7 communication device. She uses it for requests, but hasn't quite made the leap to understand it could be a powerful communication tool for her. We decide to pay to "unlock" the Android features as a birthday gift. I hope that if she can also use it for some fun games (speech related) and apps she will get more interested in using it. Right now it's always around in the TV room. She uses the same type of vocabulary (made by the same company) on an IPad at school.  Primarily though she communicates through sign and gestures. I happened to find this old video, taken 2 years ago showing Ainsley doing sign language that I thought was interesting to see.


Fine Motor - Ainsley is able to use scissors quite well, can hold a pencil or crayon and make marks but is still really in the phase of scribbling. She has a good pincer grasp and decent control, but needs to refine her skills.  We've realized that she doesn't have a dominant hand and we probably need to choose a "handedness" soon so that she can get more practice using that hand rather than alternating between the two for tasks. I suspect she might be a lefty but there are times she prefers her right. I will be discussing this further with the school OT. She does have enough fine motor dexterity to do this
 

Cognitive - It is really difficult to judge cognition when a child can't speak. You can test her receptive vocabulary by asking her to point to pictures. She knows her nouns really well. She's a bit iffy with colors, shapes, letters and numbers sometimes getting them right and sometimes wrong. She is good about following instruction. Clearly she understands a lot. More and more she surprises us with the things she does. Steve and I find ourselves frequently saying to each other "Can you believe she did that?!"





School - Ainsley started full day Kindergarten in a special eduction classroom this September. Some days she is pretty tired, but over all it's been really good for her. I really like her teacher. She seems quite enthusiastic and motivated to make a difference in children's lives. She hasn't yet started spending time in the general education classroom, but she should be soon.

All in all Ainsley is inching right along through the inchstones. At the same time she is hitting some bit milestones, like swallowing solid food and riding a trike. She lives a very happy life. She is very loved. She will be turning six next Thursday. It seems that for all we went through early on in her life, she is at a fairly stable point right now.  I don't imagine any major changes anytime soon, but know that she will continue to make progress and we will delight in her every accomplishment.
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