Nov 27, 2013

So Thankful I'm A Mom (And Other Stuff)

I am so thankful that I am a mom. It's a job that doesn't ever always receive appreciation in proportion to the effort it takes but my kids are awesome and they mean everything to me. I'm lucky that I don't work outside the home. It allows me to do more than I otherwise could. Some of the things we do just wouldn't be possible. I am thankful that my husband works hard and has a good job. And I am SO thankful that his new job doesn't require the kind of work hours that kept him away so much in the past. Having him at home has been life changing. We are lucky to have a nice home and food on our table every day. Life is good when I really think about it.

Of course there are always bumps. Like the windstorm the first weekend of November I've been meaning to tell you about. The neighbors tree fell and hit our fence and totalled our swing set. I was so excited when we bought our house 2 1/2 years ago, that it had a Rainbow swing set that Ainsley could use. I've been dealing with insurance all month and I'm worried they'll try to screw us over but I'm trying not to stress. These sets range from $2500-15,000 and come to find out that the one we had was exactly what we need compared to the new models. With any luck we'll get it all fixed before the weather gets better.

 After the tree was removed this is how it looked. It completely destroyed one of the two large platforms as well as the access steps which were perfect for Ainsley to climb up.

Here it is with the tree.

And here you can (kind of) see the size of the trunk at the top. It was a good sized tree. 

I'm scared of wind storms now, and with good reason after seeing the tree fall (we were in the living room interviewing a nurse) and smash the timbers like twigs. This is the second neighbors tree to fall and cause damage in our yard in 2 1/2 years. And just look at the size of these trees! (Mostly all belong to the neighbors.)  I am very thankful that it didn't hit our house! And I have to wonder if the trees we had cut down in August might have fallen had we not had them taken down. One was dying and another was rotted. It could have been a different outcome. So maybe we are lucky.

We had an awesome opportunity come our way. At the last minute a friend called with free tickets to see Selena Gomez. Steve was gone all week on a business trip but my sister came and took care of Ainsley and Adrian so that we could go. I had to cancel therapy because she couldn't be in 3 places at once. (Adrian had play practice and his first basketball practice.) So I have to give Sheryl a shout out of thanks for making it work and on a school night at that! They were special seats in a suite and that's not something you can pass on, especially when your daughter is a huge fan. We even got a free parking pass. I felt like such a VIP.

We got to use the Suite entrance, ie. no line.

Our seats were really close to the stage. 

There are table tops to set your food and drinks (a waitress) and extra space.

And best of all....a private bathroom in the suite. Wow did we feel spoiled.

It was an awesome and special mother daughter night out that we'll remember forever!!! 

Since this is Adrian's last year in elementary school I agreed to let him be in the school play even though I knew it was a huge time commitment. AND I signed up to be in charge of the PR committee. There have been so many times I just couldn't help out, I decided to just do it even though I knew it would be a lot of work. Which it was. I took headshots of all the kids during recess/lunch, spent hours "photoshopping" them (to get rid of pimples, stray hair, food in their teeth, etc.). I built the above display for the gigantic school cafeteria wall. The kids LOVED having their pictures displayed. In addition I made and placed the posters, and the programs which included the headshots. I have a whole new appreciation for the volunteer work that so many of the moms (and dads) put in to make school programs like this possible for our kids.

Adrian has been part of the "safety patrol" program for the second year. So me being there worked out nicely and I got a picture of him in the crossing guard position. I love the energy at school, and do miss not being there as often now that the kids ride the bus.

Adrian had 2 hour rehearsals 2-3 days a week for 6 weeks and 3 hours a day for the final week. The kids all worked so hard and the show, Princess Who?, was a huge success. They performed it for the entire school and the kids giggled the whole time. They performed it again last Friday night. A bunch of our family came to support him (19 total) so we had a little party afterward and it was SO FUN! 

Adrian played "Big Bear"....

....and Herald, Servant to the Queen of the North. It was the funniest part and the one he wanted. He did awesome and we were so proud!

Taking their bows. 

Adrian is such an awesome kid. At the end of the night we realized that he was gone. He was exhausted so he'd just gone and got into bed by himself. 

Still cheek pinching cute while he sleeps. Love that boy so much!

The 5th graders had Heritage Week, celebrating a country of their heritage. That meant a big project as well as bringing in food for a feast today. Adrian chose England (Steve's parents immigrated from England in the late 60's) so we headed to The British Pantry in between basketball drop off and ballet drop off. Got there just in the nick of time to buy sausage rolls, Phew!

While we were out Ainsley made this in Toca Bocca Hair Salon and saved it (and a few other copies) to my phone. Too funny! Then she shaved it's hair. Talk about a bad hair day. Wowza!

Later....the day finally came. Evie has reached her goal and made it to pointe! I am so proud of both of us for sticking with it for 9 years! 

(Penny comes with us everywhere these days.)

 So it looks like I'll be making a trip in to Seattle soon to buy Evie's first pointe shoes. Will post pics.

We celebrated with pumpkin pie and eggnog. I am SO proud of Evie!

Ainsley's been doing awesome too. She put this puzzle together by herself with a little verbal coaching. 

And last week she was able to trace her name all by herself!

Today this came home from school and our nurse said she cut out the shapes all by herself. I think she did the gluing too. Every day Ainsley does something that makes me realize how lucky we are to have her in our life. Just now she was asking for snuggle time with me on the couch so I have to go. Our cuddle time is the best. 

Today I took Evie and Adrian to see Frozen since school got out early and our nurse was working. They loved it. They were going to pay for the tickets but they were so appreciative, which made me feel good, so afterward I paid. It was such a fun way to start out the 4 day Thanksgiving weekend. I'm looking forward to spending time with family and am grateful not to be cooking this year.

I want to wish you all a great turkey day!

Nov 18, 2013

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.

Nov 3, 2013

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 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!