Sep 29, 2009

Good Things Come To Those Who Procrastinate

A friend and I recently had a conversation about taking/making time for our self's. I can hear all you moms out there snicker. Yes...this is a common challenge for moms. This friend has been feeling that she needs some time out with the girls WITHOUT talking about the kids. Those of you who are moms will know how unlikely that is. When moms get together the conversation inevitably always falls back to the kids. When she asked me what I like to do or want most I said to be alone and get organized. Not exactly as fun as a night out with the girls and surely a response that might leave one quizzically asking "Really?", but in all honesty it was the truth. When you live in a 1919 Craftsman Bungalow fixer-upper and lead as busy and complicated a life as I do it can become a necessity (to reorganize), especially if one is prone to procrastination and biting off more than one can chew, which I am. Even being a somewhat fly-by-the-seat-of-my-pants person I still require a certain amount of order in my life. And I just wouldn't enjoy sitting around having a drink with girlfriends when my mental state is scattered. I constantly feel the pull of what else I "should" be doing because I have so much to do. But I realized after talking with her that I really could make the time if I made it a priority.

So Monday after carpool (when the kids were at school and I had a nurse to watch Ainsley) I spent an hour and a half sitting alone in my car with a cup of coffee and my notebook getting organized instead of doing my usual Monday grocery shopping and errand running. It was wonderfully quiet at the park except for the occasional rustle of the leaves on the trees hinting at a change in the weather to come, the sun was warm and I was totally able to enjoy having this time completely to myself with no interruptions other than the occasional jogger who caught my attention. Oh, the blissful quiet that a mom seldom hears. It isn't the weekend at the beach alone that I crave but it'll have to do. I reviewed and updated my 6+ college ruled pages of to-do and projects lists, thought at length about how I could best organize my week to reduce stress and be more effective and mapped out Ainsley's therapy needs in the 4 areas of gross motor, fine motor, speech/language and feeding (specifics are, of course, yet to be outlined and....on my to-do list, ha ha). It was good! I feel better! I think I might even feel organized enough that (if I could get my husband to stop working so many hours) I could go out with a friend and maybe even enjoy it. Although I couldn't promise not to talk about my kids.

I'm sure all this makes me sound crazy. Perhaps I am but not everyone wants the same thing. I crave a certain amount of order. I'm a to-do list person. I love the satisfaction of crossing items off that list because I feel like things are getting done. If I sound perfectly organized, I'm NOT. I slip up a lot and that is why I sometimes need to regroup. The other big problem is that I can only usually get to half of what I intend to. Sometimes I will come across an old list after months and months and find that some of the items are STILL not done and not only that, I'd forgotten that they needed to be done. Since I was a kid I was always better at starting things than finishing them. But I try to change and that's what the do-do list does....It helps me keep on track.

Still, one person can only do so much. This week's to-do list is 1 1/2 pages long so I know there will be a lot of things that don't get done. One item on the list was to find out what happened to my order of "Childhood Apraxia" by Pam Marshalla. A friend recommended it (Ainsley doesn't have Apraxia but there aren't any books out there on how to get your trached child with a rare cerebellum issue to speak.) and I ordered it right away but became concerned when several back to school clothing orders (also on my to-do list) arrived even though they'd been ordered much later. But sometimes good things come to those who procrastinate. It arrived today so I can cross it off my list even though I didn't have to do anything. Yea! If only everything on my list was that easy.

Now if I can just find time to read it.

Sep 25, 2009

Surgery Cancelled

Perhaps I'll elaborate later but wanted to get the word out that Ainsley's tonsillectomy/adenoidectomy/vocal cord lasering surgery was cancelled today. Her surgeon is out sick and doesn't expect to be well by Monday. We are very disappointed and the earliest date we could reschedule for is November 12th. It seems so far away. He may add a day into his schedule and if so I hope we'll get an earlier date.

Sep 22, 2009

Ballet Class

Today was a beautiful day in Seattle. This year we decided to switch Evie's ballet studio and thankfully I was able to get her a spot. It was really a matter of convenience since we liked the other studio fine. I don't always love change but I've been looking forward to this change because the new studio is in our neighborhood (no more nasty commute through Montlake during peak traffic with only 20 minutes between the end of school and the start of ballet class) and it's on Lake Washington with a beautiful view of Mt. Rainier. It will force me to make time in my busy life to connect to nature twice a week (the new program requires attendance 2xs per week) and allow me to rush less. Once I feel more confident about Evie's placement (new studio, higher level class) I'm hoping to spend those hours enjoying the view and the sound of the water hitting the shore.

Today our nurse needed the day off so I brought Ainsley with us. Adrian is used to keeping himself busy since he's been tagging along to Evie's ballet classes since she was 3 and he was a baby. Ainsley and I worked really hard on walking (I've got to squeeze the therapy in sometime)in between peeking in at Evie, who is handling the more intense instruction really nicely. I'm proud of her and happy that she loves to dance like me. It struck me today in the midst of all those young dancers running about in the halls how Ainsley was working at least as hard as they were just to take a few uncoordinated steps, even with my complete support, holding her hands and guiding her. I am equally proud, if not more so, of her. Those young dancers are so lucky be born with their beautiful perfectly functioning bodies with the freedom that gives them. Most of us are, really and take it quite for granted. I appreciate my body and health in wholly new way since Ainsley's birth.

Ainsley seemed to love watching the dancers through the glass and kept pointing toward the door to go in. No silly girl, you have to learn to walk first. Then ballet.

This picture is for you Ann. That's a willow tree with Mt. Rainier in the background. Wish I'd had the good camera with me. Click to view close up. (BTW, got, love and am wearing the Willow Tree Foundation necklace.)

Sep 17, 2009

The Problem With Driving

The problem with driving a child with a tracheostomy is that I cannot suction the trach if I am driving. If I cannot suction the trach when Ainsley needs it she struggles to breath. One would hope that you can drive from point A to point B without the need for suctioning. Sometimes you may get that lucky but more often you will not. Even if it's only a 5 minute drive and you suction before you leave. Today was one of those days. There is something about the hum of a car in idle that seems to stir them up and always at an inopportune moment such as when you are at a light turning left and can't pull over to the side of the road because you are not moving. I assess the situation hoping the light will turn green, nope. I watch in the rear view mirror and hope the secretions that are bubbling out of Ainsley's trach will stop, nope. I hope she'll be able to cough them out of the trach, after 5 tries, nope. Perhaps there is enough time for Evie to get out of her seat and wipe the secretions away? OK let's try it. Nope. So when the light turns green she is out of her seat. Doubly unsafe. Now I've got a child unrestrained AND one that is struggling to breath. I pull over immediately into a parking space after passing through the light and am standing next to the street in the bike lane suctioning Ainsley when a Metro bus turns the corner stops a few feet away and honks at me to which I reply by holding up my finger (the pointer finger not the one you think) as in "Wait a second." HELLLOO I'M TRYING TO CLEAR MY CHILD'S AIRWAY SO SHE CAN BREATH! I have the right to stand next to my car for a second. And it is even a two lane road so she should have easily been able to pull over to pick up her riders without a fuss. Driving in the city is dangerous. One of these days I'll probably get hit on the side of the road.

Sep 16, 2009

10 Eager Bites

Woohoo! I think we're making progress. The number of bites is still pretty low at 10 bitty bites but she seemed more eager to eat today. That is an improvement. I really think it's this gator vibrator. We've tried vibrators before but without much success. The difference seems to be that now she wants to put it in her mouth and I think this one has a good shape. And, I think her food has a good consistency today. Feeding therapists want to desensitize kids by exposing them to textures. But I have to wonder for for a child with very limited eating experience if, like an infant, they have to work their way up to textures after mastering smooth purees. Today's food was a little thicker and very smooth due to those over-cooked veggies. I think it's time to try again to make my own pureed "baby" food to see if I can get a good taste and consistency for oral feeding. I know I wouldn't want to eat half the stuff I try to feed her. I'll let you know how it goes.

Sep 13, 2009

14 Bites!

Unless your child has dysphagia it is unlikely that you can understand how exciting it is when they willingly eat a few bites. Especially when your child really doesn't eat despite hours and hours of feeding "therapy"(oral torture might be a better term). For whatever reason Ainsley has rediscovered her vibrating alligator and is putting the entire end in her mouth and biting on it. And LIKES it. Who can be sure but it seems to be helping because today she ate 14 bites of her homemade puree.

A few months ago she took 9 bites for several days in a row and then refused to take more than one. I pushed since she'd shown she could do it. I thought she was being defiant and sat there for over an hour trying to get her to take just one bite. Then I paid the price for not following her cues and she's refused to eat since then (well maybe a bite here and there). We've been gradually working back where we were before and today she topped her 9 bites by eating 14 and I've learned my lesson! We'll see where this leads us. There was one time in Cincinnati when she'd been NPO for a procedure that she ate several ounces of food (really and that's about 40 bites). We've never had that kind of success since even when she's hungry.

I'm hoping we'll see more improvement once they've removed her enlarged tonsils.

I did make a change to her homemade formula and started cooking the vegetables so it could just be that the food tastes better to her. I was feeling like the raw vegetables were giving her a bit too much fiber, if you know what I mean. So for my convenience I've been cooking a huge batch of veggies and keeping it in a container in the frig so I can just scoop out several veggie servings really quickly. This batch contained: green beans, baby carrots, spinach, potato, corn, broccoli and peas. I do think she seems to prefer to eat the homemade formula over single flavor baby foods (banana, apples, peas). Who knows why. I don't think it tastes as good but you hear that kids will eat what they are tube fed. Perhaps it's familiar to her but her formula contains: bread, milk, half&half, yogurt, OJ, apple sauce, bananas, chicken, veggies, olive oil and vitamins all mixed together. It's kind of sweet and reminds me a tad of an Orange Julius, remember those? Still, I wouldn't want to drink it.

Whatever the reason I hope she keeps it up. Of course with a tonsillectomy only 2 weeks away she will obviously not eat for awhile afterward.

Sep 12, 2009

Voice Clinic

Excuse the lateness of this post it has been hard to write and the kids started school this week so it's been a busy week.

Wednesday our nurse and I headed to Children's for voice clinic after taking the older kids for their first day of school. I'd heard about voice clinic by chance and was able to get an appointment after much red tape since Ainsley isn't quite the required 3 years old yet. I've been looking forward to it for a few months, hoping this might provide some answers about whether Ainsley will be able to speak one day. Though at the end of the appointment I found out that this "voice expert" was not particularly experienced with trachs, still we got some useful suggestions and after much talk with her and the ENT, and thinking things over since, I think I have a clearer picture of Ainsley's situation and what we can do to help her.

Of course just like at the last appointment she was virtually silent. She seems to clam up when she gets in front of the professionals. I tried to get her to "talk" for the therapist who was there to evaluate her voice and felt like a complete fool. On the way home in the car she couldn't keep quiet. Why oh why didn't I bring video to show?! That was just the beginning of the frustration.

Ainsley's vocal cords and arytenoids are scarred which makes them somewhat rigid and unable to move easily. It also causes her voice to sound different (kind of hoarse and strained). It is harder for her to move them adequately for breathing which, in effect, reduces the size of her airway at the point of the vocal folds. Although she could probably manage without the trach most of the time she runs into trouble when she cries because the cords slam shut and don't allow air to pass. She could also have trouble while sleeping (this often happens) because during sleep the brain isn't as likely to help compensate for breathing difficulties, such as moderating breathing patterns, like it would while she's awake. This is why Ainsley still has the trach even though the airway edema has mostly resolved since the Nissen fundoplication last October.

Ainsley's ENT had told us in June that she may never speak, probably because he heard no vocalization at that appointment and knew she had a lot of scarring when he looked during the laryngoscopy he'd done in March. At this appointment he didn't remember saying that, which was frustrating since we obviously took the implications of that quite seriously, even though to our ears it seemed she was physically able to vocalize despite the obvious fact that it doesn't come easily to her. Again he said her voice may sound different (which it clearly already does) and she may not have enough air to speak an entire sentence without pausing. He also has said on both occasions that kids will find ways of compensating and make sounds using other parts of the airway. Although I have to wonder if this takes a certain amount of cognition that may be beyond Ainsley. Regardless, even with this severe scarring we can now rule out the anatomy as the sole cause of her lack of speech. Which is good.

Ainsley has been working with a great speech pathologist since she was about 18months old. Despite her efforts Ainsley's progress has been slow in most areas related to communication. She has no words and only signs: Hi/bye, more, all done, book, and has started to use help in the past week or so. Sign language is difficult for her due to her cerebellum malformation and it's effects. The swelling of her airway was so bad that she was unable to wear a speaking valve until last November so she was essentially silent for the first 2 years of her life. Even since then it hasn't been easy for her to make sound. And it is difficult to keep a speaking valve on her trach since she likes to pull it off and put it in her mouth, even chew on it. So the amount of hours she has actually had a "voice" is minimal due to the trach. Since we were never sure if she would have a voice to use we've worked pretty hard in therapy on learning PECS, assuming she would need some form of communication with the world at large. It is likely that she will still need an AAC but after this appointment we now know we should also be working harder on voice and speech.

The main missing component is Ainsley's desire to communicate. She has limited needs and desires and a pretty easy going temperament so she has been able to get her basic needs fulfilled with grunts and gestures (pointing and a little signing). As her cognition increases that may change. We already use mimicking to try to encourage her to vocalize but now we are going to specifically work on trying to get her to mimic vowel sounds. My hope is that if we can spark an interest in vocalizing by making it fun and showing her a taste of success it will motivate her. I'm thinking perhaps I might be able to enlist the kids' help by making up some fun games they can play with her every day. There are so many things to do in our busy life, I need some help.

The doctor was surprised again by how well Ainsley did wearing the cap in his office although there was a point she was retracting at the stoma, which I pointed out to him. I have no idea what is going on in his head. I realize Ainsley is a unique case and it's complex but he's gone back and forth about some important points. I think there must be some part of this that is not adding up in his head because of the way he observes her in clinic as if he can't quite believe she is capped. Perhaps he will figure out something during the laryngoscopy she will have in two weeks at the same time as her tonsillectomy/adenoidectomy. I still hope that there is more obstruction from the tonsils and adenoids than anyone has been aware.

The therapist indicated her professional opinion was that there is no need to rush to do anything (surgically) since she is physically capable of vocalizing. I had to disagree and point out that clearly having to rely on a speaking valve to make sound and only being able to vocalize part of the day must clearly have an impact of some kind. In addition to the strain of not having normal airflow through the cords. But this is where a speech expert with trach experience would be of benefit. The deck is stacked against Ainsley and I think having non-ideally functioning vocal cords and a trach just makes it harder for her to learn to use her voice. Although I think that in many cases kids with trachs can manage quite well with a speaking valve it's not ideal for Ainsley.

She indicated that traditionally they think of speech following eating in development of the muscles of the mouth and tongue. It doesn't help that Ainsley does not eat orally but there is not much that can be done on that front. I've tried as much as I can. Clearly there are kids that speak that don't eat so I don't think that's the answer. She questioned whether Ainsley has an oral aversion that is causing her to not eat. Despite professional opinions to the contrary, I still believe she does not because she puts everything in her mouth including some foods. She seems to be able to tell when she might gag or aspirate on something she's trying to swallow. I think it's self-protection. I'm still hoping that the tonsil removal is the answer to getting her eating. But I think it's not a bad idea to incorporate some more oral exercises (vibrating toys, chewy tubes, textured objects, whistles etc.) into our routines.

The therapist brought up the fact that kids with low tone can have nasal sounding speech after an adenoidectomy. A fact the doctor had already informed us of last month during the consultation about removing them in the first place at which time we agreed he would only partially remove them. Best to be safe. He proceeded to explain it again as if it were the first time and even went so far as to amend the surgery consent form. Scary. I assumed since he knew it was to be a partial the degree of removal didn't need to be specified. So let that be a word of caution to all of you that you can't be too specific in those surgery consent forms. I hope that he would have referred back to his notes and remembered he was only performing a partial since the consequences of such a mistake could affect Ainsley's voice for the rest of her life. It shook me up a bit and in combination with some of the other serious things he's forgotten in the past I would be lying if I didn't admit to being a bit nervous. However he is a highly respected surgeon. Dr. Cotton's office, who had seen Ainsley in the past and is considered by many to be the top in the field of otolaryngology, has told us we are in very good hands. I am hoping he can work some magic when he's in the operating room even if paperwork isn't his strong suit. Please pray that he gives her entire situation serious consideration beforehand and that on Sept. 28th he makes guided decisions about what is best to allow Ainsley to have a safe airway and a voice.

Here's a little video of Ainsley's "voice" right now:

Sep 10, 2009

First Day of School

Ainsley had her first day of school today. She seemed to grow shy over the few weeks we were gone and has taken to covering her eyes with her arms to "hide". She's doing this all the time right now, at home too. In the weeks that we were gone she has improved a great deal with her standing. Every day I've been holding her at the hips, requiring her to balance while she stands. It's paid off and seems to have helped her walking as well. I'll be curious to see how she does in her therapies now that we're back. Today she was able to stand at the sensory table with the other kids for quite awhile and she was pretty straight and needed minimal assistance. She actually seemed to have a great first day back. All the kids did, in fact.