Botox October 2013

On October 14th Ainsley had her second round of Botox injections to the muscles that close the vocal cords. We are trying the injections to see if it would open up her airway some (or keep it from shutting too much). Initially our hope was that it would stop her from obstructing while she slept IF she was to get her trach removed, since that is Ainsley's biggest obstacle to decannulation.

The first round of injections were done on April 30th. It didn't have miraculous results (and we weren't surprised), but we did notice that she was a bit less likely to remove her trach cap throughout the day. And she ate better. That is why we decided to do another round of injections after the last ones wore off. (It took awhile to get approval and onto the OR schedule.)

This time the surgeon asked for a follow-up appointment, which happened on November 12th, during which he scoped her airway while she had the cap on. Ainsley did cry, but she held still and I think we got the best look we've had yet. The doctor had scoped her prior to the procedure on 4/30 and brought that video up to compare. It looks a bit less crowded. The doctor asked if I think there is any chance it's growth. I said absolutely not, but we will see.

We formulated a plan, when the Botox wears off we will bring her in for another look. I wish he'd scoped her like I asked the last time, it would have saved a lot of time but at least we have a good plan going forward. Then we will repeat the sleep study, without me in her bed. We'll just have to take our chances about her pulling the cap off. But this way we will be sure that there is no interference from my disturbed sleep.

Honestly, I would prefer just to try a hospital decannulation without the sleep study. I think the real test will be how well she does on CPAP without a trach and I don't think we'll really know until we try it. But we have a compromise and I will do the sleep study since they want it. We know she has OSA and will need CPAP support. My feeling is that we can always re-trach.

I have come so far in this journey. For so long I looked forward to every ENT visit hoping they would scope Ainsley and she'd have "outgrown" whatever her airway problem is. I was devastated every time that we were told to come back in 6 months. Didn't they know how hard this trach life is and how long 6 months feels? Now I feel barely a twinge of disappointment because I know what to expect. Not much.

In addition on November 7th we saw Pulmonary and I told him of my ideal plan and he seemed on board to at least consider it. He wrote orders for the sleep study which I will schedule this week. We are advancing Ainsley's oral eating. She's now eating about half her food. It's hard work, but I'm committed because my eye on the prize....eliminating tube feedings. I am so proud of how far Ainsley's come with eating! The doctors are amazed because they expected her to aspirate and for it to affect her lungs. We keep a close eye on that, and she's had no change in secretions.

In addition I do think she vocalizes a bit more on the Botox. She's had a few words for a long time, but her "all done" is sometimes perfectly clear now. I can't help but believe that if she were trach free her eating and vocalizing would be better and life would be a bit easier. Not easy. Just easier.  At the same time we've now been living this life for 7 years and I know we can do it if it's what we need to do to keep Ainsley safe and breathing comfortably.

Here is a little video from the appointment for those who would like to see it.

Halloween 2013

I will start by saying that we are a little crazy over here...but you know that already. The things we do sometimes they don't make sense. I can't really explain other than that sometimes I get caught up in an idea and do something I know I don't have time for and really shouldn't do...simply because "it would be so cool"!

This year I was actually not feeling too inspired to do a costume myself. Then one little thing happened and all my plans of a low stress Halloween were turned on end. Adrian is in the school play and I decided to be in charge of the PR committee that does the photos, posters and programs.  Wednesday I was going to take head shots of all the cast during their lunches since not all the kids rehearse on the same days. Unfortunately I was supposed to drive the Wednesday afternoon carpool that rotates, each family getting it about once a month. I was able to swap with the mom who was supposed to do pick up on Halloween. I'd have to bring treats (these kids are ravenous by pick-up time every day).

I'd found organ donor treat bags and thought how fun it would be if I could somehow turn my van into an "ambulance" and then dress as a nurse or doctor. But how? Then the morning of Halloween it came to me...red duct tape to make crosses. Could I pull it off? Would Evie be upset? The idea was just too good, I had to try to pull it off.

I ran to the store to get the bare essential groceries that I needed, Jello for the brain mold, buy white shoes, a bloody knife and bloody rubber gloves. While I was waiting in line I saw they had bags of gummy body parts. Perfect!

As soon as I got home I got busy finding a quick set Jello recipe, but further used my BD skills to crush the ice to make it go super fast (2 hours instead of overnight). Awesome! It set while I showered and ironed my "doctor coat". I have to say I got a crazy pleasure from getting to play a psycho doctor.  When Ainsley came home from school you could tell she thought it was hilarious. I was glad she wasn't scared. I painted dark circles and red around my eyes.  I happened to see an ENT photo laying around and that gave me the idea to grab a small portion of Ainsley's medical reports for a fake "doctor chart". Sad and funny all at the same time.

My evil ambulance. See the blood dripping down the window?

The snack for the kids. 

See the rubber liver and heart?

I wish I could have made Penny's carrier look more like a body but safety had to come first.

The kids. They were grossed out, giggly and LOVED it. 

Most of them were brave enough to slice into the brain (peaches and cream flavor) and eat some.I even made a little jello blood that I dripped over the ice, you just couldn't see it because the bowl was too small. But the kids then thought I, somehow, made it bleed when I cut it. It was melting by the time I took this picture but you can get the idea. 

After carpool I had to get busy making our alphabet, chicken, pumpkin soup. With bread and pumpkin beer it hit the spot!

Now the good part. 

The perfect wheelchair costume: the Granny from Little Red Riding Hood. 

The wheelchair enhances the costume. She was comfortable being semi-reclined and covered up with a warm blanket. 

Try as I did, there was no convincing Adrian to be a part of it. So Penny had to be the Big Bad Wolf. He wouldn't even be the woodcutter. Evie wore the cape I had as a child and the basket I made her when she was little. 

Adrian was Percy Jackson, which was easy since we used the t-shirt and necklace from the PJ party I threw for Evie. 

I stayed back to hand out candy. When I opened the door with my chart in hand, I said to the kids "You must be here for your appointment." I got stares. The tray of body parts was inside the door on the bench.  Then I said "Oh....I guess you want some candy". "Yes yes!!!" they said. It was so fun! 

We play spooky music and have the place all decorated. It's such a shame we only get about 20 Trick-or-Treaters. The houses are too far apart.

You can almost see our pumpkins: Steve scary fish, Susan ladybug, Evie Taylor Swift (of course), Adrian a cowboy and Ainsley a happy face. 

The ghost.

The graveyard.

The witch (we added a burning cauldron I picked up last year the day after Halloween).

The creepy dining room.

Organ donor bags for the neighbors who didn't come. Boo!

I love that I can reuse the Medusa pinata from Evie's Percy party. 

My new idea for the creepy baby mummy. 

It's tradition to get a photo of the kids Trick-or-Treating our house. They are the last out. I know when they come home it's time to relax with a beer. 

I bought this purse at a neighbors estate sale. I love thinking of all the places it's been, Sunday church, grocery shopping, now Trick-or-Treating.

Even Penny had a treat. I thought it was so cute that she licked it like a real lollipop.  

I saved the best  for last. Ainsley's nurse when she heard Ainsley was going to be the Granny, decided to get herself a Red Riding Hood costume. Isn't that awesome?! They were quite the talk of school all day.  Ainsley had a fantastic day. Oh yeah....she even ate some chocolate this year!!! I think we all had a pretty fantastic Halloween. I hope you did too! Next year will be the year that we keep things simple. Ha!

Ainsley Turns 7!

Sorry for the infrequent posts. Life's been busy. October is my favorite month of the year but it's a busy one. I took a respite trip to the beach the first weekend of the month, then had to do a boatload of laundry cleaning and unpacking...which lead right up to Ainsley's birthday...then our anniversary, a big landscaping project...(with cable outage for 4 days), a big photo project for the school and then Halloween. Phew. So, I've decided to divide all this into two posts.

It's not uncommon for parents of special needs kids to struggle to buy gifts for their child. Often the child doesn't ask for toys the way that typical children do. Sometimes they have limited interests or abilities. Over the years I've often bought more toys than Ainsley needs out of guilt, trying to spend equally on her what I spend on her siblings. This year I was having a tough time deciding what to do for her and finally figured it out the week before. I bought her a bunch of educational games and supplies from Lakeshore Learning that we can use for teaching her and a couple of items for her play kitchen that I knew she'd love.

Evie and Adrian like to buy sibling gifts with their own money (they get an allowance of $2 a week). Over the years I've offered to pay but they say then it wouldn't really be "from them". I'm so proud of them. We made it to the store after ballet one night so they could get Ainsley a gift. I had to laugh seeing Evie fawning over the princess Little People nearly like when she was little. I got video of her dancing to it's music, but I won't embarrass her  by posting that. Thankfully there was no tantrum when we didn't buy it.

Evie and Adrian had been dying to go to Target to buy House of Hades, which just came out. They both wanted it so badly they paid for it themselves rather than to wait for the other to finish. Not the frugal choice and believe me I tried to get them to share a copy. But I am awfully proud that I have two kids who love to read this much. Besides it is their money. They didn't put the book down for days.

As always I was feeling the pressure. Evie and Adrian helped out by wrapping Ainsley's gifts for me. Can you tell who wasn't getting to help as much as they liked? As sad as I am sometimes that Evie is growing up so much there are some real advantages.

There was no school the Friday of Ainsley's birthday. I'd planned to take the kids to the zoo but decided to just make it a day at home to play (because we seldom do) and I thought Ainsley would actually enjoy it more. Evie was ON IT! And did so much to make the day special for Ainsley. It was pretty awesome!

We brought two dining tables into the family room and created a giant fort with blankets and lights, connecting it with tunnels and tubes, decorating it with things from Adrian's "nature kit".

They even made a "lake".

Evie played dolls with Ainsley in the hidden area next to the lake.

Ainsley had so much fun!

One of the items I bought was a rainbow parachute. This was top on the list of best gifts.

LOVED LOVED LOVED it!

I'd bought a Petit' Four baking tin 3 years ago and NEVER used it. So Evie made lemon petit' fours for the tea party she planned and that took care of lunch.

 I loved that Ainsley can actually drink some tea now.

Since it was movie night we bought "The Croods".  There was nearly no time for those presents. 

Once upon a time we made a "phone" from PVC for speech therapy. I couldn't believe that they now make these. For $5 I had to buy it because it's so much lighter and nicer. If you have a verbally challenged kid, get one of these things: it amplifies their voice to make them more aware of the sounds they are producing.

Evie got out the party hats and even had Penny wear one. So cute. Poor dog.

Oh yeah, Evie even did the streamers by standing on a chair. I totally would have skipped that.

See the cute little cans? Those were Ainsley's "big gift". She LOVES to put stuff inside of stuff. So I know she will love them and I will find them all over the house. 

*****

Ainsley was born the night before our 10th anniversary, so I always know how many years I've been married by adding Ainsley's age plus 10. Seventeen years...Wow! The statistics for the divorce rate of special needs parents aren't good so I feel good about the fact that we've made it this far. My sister came over so we could go for a nice dinner at The Barking Frog. 

If you go, get the prawn appetizer!

I had the beet salad. So yummy!

We had a good laugh over Steve eating the full sized anchovy that came on his Cesar.

I had the duck.

Steve had the seared Ahi.

 We split this dessert, a Guinness gingerbread, Black Raven ice cream, Stella Artois foam topped with beer caramel popcorn. It was a real taste experience!

The food was delicious! They were so nice to us.We had a great time. We don't go out very often so it was a real treat! Christy you asked for it so here you have it.....My red wedding dress from 17 years ago.

***

The landscapers who did our entire yard for the previous home owner, 15 years ago came to "fill in the hole" caused by removing a couple dying trees (and a few others that were not ideally placed). We realized that we had a lot of plants that were overcrowded. The good news is that they were able to move them and save us money on the plant budget, but unfortunately it takes a lot of time to dig up big trees and bushes. 

It's kind of funny because you don't get a sense of the scale. That little boxy thing is the kids' play house, and the Japanese maple in front of it is a good 20 feet tall. After this was done they laid some sod, to enlarge the grass a little. I think it opens up the yard a lot, concealing the fence and making the neighbors house disappear. I had to be there as much as possible to help decide positioning.I'll have to post a picture after it's 100% finished.

Unfortunately there was a casualty. The cable to the house was cut....which meant no e-mail/Internet/phone for 4 days while we tracked down the source of the problem ( a large rhodie that was dug up). In our modern world, that is extremely inconvenient to say the least. I was so happy when it was fixed. Though in a weird way it was kind of nice to "unplug" for awhile.  But just awhile.