Apr 28, 2009

Call From Dr. Cotton's Office Today

I've been waiting to hear from Dr. Cotton. He is a very well respected airway surgeon that many on the tracheostomy.com forum travel to see from all over the world. We had a full work up in Cincinnati in April 2008 and I followed up after our last laryngoscopy last month by sending him a summary of how Ainsley has done over the last year as well as photos from the last laryngoscopy. As her patient I think it's good for them to have that information and I was curious if he would agree with our local ENT about a course of treatment.

They said that Ainsley is a highly complex case and it's invaluable to have a good otolaryngologist locally that can see Ainsley in clinic and not just for surgeries. They said they have the highest respect for Dr. Inglis as a surgeon and surprised me by saying there are some airway surgeries Dr. Inglis does that Dr. Cotton does not. The difficulty with Ainsley is that the problem and solutions are not clear. I am relieved to know there is no reason to travel if Ainsley does need surgery for her airway. We are looking forward to the results of her next scope in June to find out where we are headed on this journey.

Capping Videos

I've been meaning to post a video of Ainsley wearing the cap that we got back in late January. The thing is that how she fares on it is rather inconsistent so I haven't been sure whether to post video of her doing well or struggling, so I decided to post a sampling so people can get an idea of the trials of capping. Occasionally she seems to hardly notice when I put it on and will last for up to an hour, other times she only lasts a few seconds and then there are the times that you get mixed signals, which I happened to catch on video last month. It happened on this day you see it all. I'm hoping my friends from the trach forum will give their impression of how she is doing (clearly she's struggling when she is crying), especially those whose kids did a capping trial before decannulation. Her local ENT would like to see Ainsley work up to wearing this cap most of the day (as tolerated) before attempting decannulation*. Most of the time I don't feel great about her wearing it and I get nervous to leave her alone (within proximity/earshot) with it on for fear she'll decannulate herself trying to pull it off. Please comment and tell me your thoughts about how she is doing on the cap.

(*I also want to point out for family that may get very excited to see this video, that even though she can tolerate a cap for varying lengths of time that is not the same as taking the trach out because her airway can collapse. When we take Ainsley's trach out to replace it with a new one (a routine part of tracheostomy care) she starts to turn dusky blue within about 30 seconds max. The road to decannulation can be bumpy with lots of twists and turns.)

Apr 16, 2009

Gait Trainer On Order

We are very fortunate to work with a really excellent PT. The intuitive way that she works with positioning the kids is just amazing to watch. Plus she has many years experience, so with that combination, I trust her opinion very much. She has been impressed with the progress that Miss Ainsley has made since she started therapy at the center in the fall. A few months back I was lamenting that I wished there was some sort of device I could use to put Ainsley in so she could sit but also stand when she wanted to, so she could increase her leg strength. Like an exersaucer. Which would be perfect, except that Ainsley is far too tall (at 37") and would likely be bored with the toys. I'd heard other parents talk about standers but Gay felt Ainsley was already beyond that point but she did say that we could look into gait trainers, which are a sort of extra sturdy walker that can have a seat attached for security.

We did a little reading on the Internet and considered a Snugseat Gator and arranged with another parent to try their child's. We thought it was the Gator but it turned out to be the Otto Bock Nurmi Neo http://www.ottobock.com/cps/rde/xchg/ob_com_en/hs.xsl/1391.html and it was a great fit for Ainsley. They are both reverse walkers so the frame is in the back behind the child. I think that is very important for Ainsley so she can play at the sensory table with the other kids in her classroom, and just so she can explore her world up close in general. In the time since we started the selection process she's started taking better (assisted) steps and has pulled herself to a stand so I feel like she is ready. We hope that with this additional support she will start to feel secure and will take some steps.

I also hope that doing more standing and walking may help carve out those hip sockets and perhaps she may be able to avoid that hip reconstruction surgery. Big hopes for a humble piece of metal.

We had our appointment with the rep from the medical supply company on Tuesday. He brought both the Gator and the Nurmi Neo. After comparing them side-by-side Gay and I agreed that the Nurmi Neo seemed like the better choice. It just felt slightly more stable and easier to navigate. He took her measurements and we chose all the different pieces. They are like cars in that you can get various options. We had to go with the medium size because of her height. We'll be trying to get the smaller arm rests and the sling seat so it will look a little different. Here is a picture of her trying it out. Hopefully she'll like it better next time.

The next step is to get the bid, write the letter of justification, get the doctor's signature, get insurance approval, place the order, and then wait for them to build and ship it. Cross your fingers that all goes well and she gets her gait trainer soon.

While we were finishing up she decided to crawl right out the door and take off down the hall. This was the first time she's ever tried to escape. Pretty funny like "Mom's not looking I'm getting out of here!" Actually I think she was looking for her friends. Playing with them is a lot more fun than ordering medical equipment. I was thrilled for her to do yet another rascally normal kid thing. (My other two frequently ran off.) And she was pretty fast too for crawling! Maybe I don't want to teach her to walk......just kidding. Of course I do.

Apr 15, 2009

Easter Pictures

Even though we are not religious people we do celebrate Easter. I think of it more as a celebration of Spring. Every year we do the same thing. I love traditions.

Each year the kids find an Easter basket in their bedroom. This is Ainsley's. She still gets a little chocolate even though she won't eat it.

We sit in bed and they play with their stuff and eat a bit of candy while we have coffee.

We have an egg hunt at home. This year Ainsley was able to understand it and participate, in her own way. We hid really big eggs in easy to see places for her to crawl around and gather. It was so neat to see her do it!

She got a few into the bag by herself.

Of course she didn't eat the candy. But still enjoyed herself.

Every year we go to Auntie Caron's to spend the day with the cousins. We try to do the egg hunt outside whenever possible. In the Seattle area that can be hard. It had rained and her yard can get a bit muddy but with rain boots and rain coats they were ready to go. It's one of my favorite times to take pictures.

There are lots of crannies to hide the eggs in.

Ainsley watched the action from Daddy's shoulder. I had to draw the line. No crawling in the mud.

You can see all the great hiding spots. In the rocks.

In the stumps.

Required Easter equipment in the Seattle area.

It's really a nice yard for an egg hunt.
But it was good to get back inside and relax. Ainsley got a nice Peter Rabbit book she was able to turn the pages by herself and did not rip any of the pop-ups. What a big girl!
I got some great portrait style pictures of the kids. She's getting so grown up.

Adrian had fun playing chess with his Uncle Chris.

We had a lovely dinner.
I made my annual Easter cake, a lamb this year. I found the mold at Goodwill. I should have walked by. I knew it then but foolishly did it anyway. The chocolate part didn't even taste that good. But it WAS cute and I took the lamb off the top to Ainsley's school so those kids (and adults) got to enjoy it too. Still that is the last time I pipe an entire cake and the pan is in going back to the Goodwill. Next year I'll do something much simpler.
The kids finished the night off with their "fashion show" they love to parade out in different themed outfits. I'm not going to embarass anyone by posting those pictures. Maybe next year Ainsley will be able to join in with the big kids. Wouldn't that be great! It was a great time.

Apr 11, 2009

Happy Spring!

I've been looking for an excuse to post this picture I took. Those are not real boots but the cutest vase I found at, my favorite place of course, the Goodwill. Daffodils are not usually my favorite but when I saw these at Trader Joe's I had to buy some because I knew they'd be perfect in these "boots". They came dry packed. I'd never seen such a thing. Then ends seemed to be burnt and they were bundled with rubber bands, no water. The little buds looked so full of promise and sure enough, with a fresh cut and some water they were better than fine. A true testament to the force of life.

Apr 10, 2009

She Pulled To A Stand!

Yes she DID! All by herself! This is old news to my friends on the trach forum since it happened on 4/4 and I had to tell them. But I do have something additional up my sleeve...video. Sorry it took so long. I had to figure out how to do it. Turns out YouTube now allows posting HD videos but it took a little work to get the file compatible and I still had to reduce the resolution to get it to take. It sure doesn't look HD. And I sound like a goof but oh well.

Steve was working yet another Saturday because of his crazy work deadlines so we didn't get the truck after all so the big yard pruning and clean up that was supposed to happen in November got pushed back again. But I was determined to get some yard work done even if I had to do it all by myself with all three kids. So I brought out the baby jail, aka a Pack-N-Play. We hadn't used it in many months so I wasn't sure if she'd be too big. She is 37" tall and weighs about 30 pounds. But it seemed okay so I put toys in with her and started cleaning up my bed of raspberry plants. Of course it only took seconds for her to throw them over the side. Oh the memories were flooding back.

Evie and Adrian were on the patio playing with the house and animals that she'd thrown out and so she was motivated to watch them and didn't complain too much about being left in there so I set about to do my work.

Imagine my surprise when I walk by and see her standing up like this.

Of course anytime anything happens I blame Evie first because 98% of the time she is the guilty one. I say "Evie, did you stand her up?" "No," she replies. Of course I can't be sure she doesn't think she's going to get in trouble for messing with her sister. She's fairly convincing so then I grill Adrian, "Did YOU stand her up?" "NO!" he replies. HOLY CRAP! She stood up by herself! I run for the camera as fast as I possibly can, knowing she probably won't last long in this position and got the photo! Hooray!

Throughout the day she lowered herself to a sit and pulled up to a stand another 15-20 times. Occasionally her feet would get stuck in an awkward position or she would be afraid to lower herself to a sit, she would cry and I had to help her but she over all she did GREAT!

I love that the sides are mesh and it's all padded so it makes a safe place for her to practice this new skill which is a real challenge for her due to her cerebellum malformation. We also went out into the yard most of Sunday too and she continued doing it. All that pulling up has to be great for her muscles. We lowered the crib the next day so she can safely pull to a stand in there as well. But she was a little slower to do it in there but eventually figured it out. Perhaps she remembers the times she's fallen over and bumped her head on the rails.

I hope next she'll take a step while holding on and eventually learn to cruise in there. Exciting stuff! We are SO PROUD....and so is she. Don't you love that smile?! It says "See what I did mom?!"

Apr 1, 2009

Spring Break - Fun With Cups

It's Spring Break this week and the kids are all home. I am enjoying a break from running here and there and simply spending time at the house. We had a bit of snow today. Weird. And we have masons here tuck-pointing our chimney this week. As usual the house takes priority, Steve is very busy at work and we don't have any true vacation plans like regular people. Our big plan for the weekend is to rent a truck and do massive yard clean up. And it's my birthday weekend. Fun stuff. Although getting the yard cleaned up will be a gift in itself. We had planned to do it in November. At least the kids will have a chance to PLAY. And I'm always amazed that what they will amuse themselves with when left to their own devices. These cup towers were amazing in real life but don't look quite as impressive in the photo. Ainsley loves having her brother and sister around. Unfortunately I had to break up the fun and remove the animals from the "boat" to go outside to check on the masons. Sometimes my life is nutty!