Feb 7, 2014

The Thing That Never Gets Done

 I don't think I had a chance to show you my fortune cookie from dinner with my friends while in Arizona. I thought it was perfect for how I was feeling after my trip there to be with my friend Ann for her son Jack's funeral. We all got a fortune that was eerily apropos.

I'd been putting off making some medical decisions for Ainsley but I worked through that and scheduled multiple appointments with various specialties. It feels good to get that done. Our sleep study will be in June and I will let that guide our decision about decannulation with CPAP. We will see the ENT on 2/25 for the nasendoscopy and that will help us decide about whether to continue Botox injections. She'll see Craniofacial, Pulmonary, Endocrinology, Dermatology and the dentist within the following months. In addition I notified all her doctors via e-mail that she started eating orally. Some days and weeks her care really is nearly a job. I don't know how I would do it if I was working outside the home.

I felt the desire to do a detox/cleanse and picked this one.  For 3 days I drank nothing but juice and tea (and coffee which is cheating but I wasn't about to give up my coffee). I followed it up with 2 days of mostly vegetable soup. My friend Mel convinced me to try dry brushing. I did that followed by the epsom salt bath recommended by Dr. Oz (though not all 3 days). I got a pretty bad runny nose. I'd heard a detox can make you feel sick as your body is rid of toxins. No such luck. I was sick, and it lasted a week. Probably because I spent a day at school.

We had a new nurse start. She is working Wednesdays and 6 hours on Saturdays. This will allow me to have one day that I can take Evie and Adrian out without Ainsley (Wednesday they get out of school early) to run errands or spend time with them. Saturdays will allow both Steve and I to attend Adrian's sports games and spend a small amount of time with Evie and Adrian. Ainsley takes a lot of attention to care for. Rather than get by with the bare minimum of nursing I'm trying to add a bit more even though it is an intrusion into the family. Plus training a new nurse and getting used to their personality is stressful. I'm sticking it out, hoping the extra help will help us re-balance and better meet everyone in the family's needs. This includes ME. Often moms put their own needs last (and it's even worse for special needs and medically intensive moms)  which then causes resentment.  I'm done with that!  

Aside from not being able to start my juice cleanse I was happy to go to school with Ainsley. I love to see what she is up to during her time at school. I LOVE this new program, Starfall, the special ed teacher is using. The kids love it too. 

It was awesome to see Ainsley eating lunch in the lunchroom. She's still eating orally. 

She loves to "run around" during recess. Though I think she really wanted to play tether-ball. 

Here she is working during OT, picking up pompoms and identifying colors.

Though she comes home tired we have more to do. She has to finish her lunch (there isn't enough time because she is slow). Then we try to have her do "homework" before she gets some downtime with a video before dinner. It also takes her a long time to eat dinner. Often Evie or Adrian have ballet or sports to be at. And they have homework. So the evenings are busy even through we are a bit less pressured after dropping speech and hippotherapy.

We had conferences last week. I was a bit annoyed that Ainsley's Gen Ed teacher wanted me to set a goal of reading to her every night and also make up some other personal goal for her to work on. It nagged at me for days even though I tried not to let it bother me. I do read to Ainsley. I just can't always do it every day. I guess she doesn't realize that we already have way more stuff to work on than I have any hope of accomplishing. I read to her as much as I can but I felt like she thought I was making excuses. People that don't live this life have no idea what it's like and really can't get it. I really try not to let it get to me but it isn't always easy.

For Christmas I bought a bookshelf to organize her stuff to make a "home program" easier for all of us. I've been trying to create a chart for the past 6 months that makes it easy to keep track of what we need to do with her in the following areas:
  • Stretching/exercises
  • Walking/balance
  • Handwriting/Coloring
  • Academic: Colors, Letters, Numbers, Shapes, Reading/Stories
  • Cutting
  • Oral Motor/Speech
  • Communication Device
Unfortunately the hours between when the kids leave for school and the first one comes home go by very quickly. Every week I think this will be the week I get it done. Then it isn't.  One day at a time the time runs out. This week I did get my desk cleaned off and started re-organizing my binder and found all of Ainsley's papers with her goals, my ideas etc. So I'm setup in a good position and I'm going to reserve Monday 2/10 for this purpose. So there. 

Even though I beat myself up because the chart isn't done, we do still work on stuff, I'm just trying to optimize our time and energy (and get Steve and the kids to help). I've starting taping up her work on the bookshelf, which is so fun to see. I'm hoping it will encourage her to be proud of her work and make it fun. I bought her new crayons and markers with her Christmas money and put them out in front of the TV with paper and scissors so she has constant access. Here is some of her work.
Her drawing of spaghetti and meatballs. The Kumon workbooks are great.  

Here she is tracing. You can see how much time it takes. Ainsley's cerebellum malformation causes her to require more time for motor planning pretty much no matter what it is. I'm so proud of her, she's improved a lot!!! She can nearly do it independently.

She is also doing well eating independently when she likes the food (like daddy's blueberry pancakes). She's so proud of herself and it's AWESOME! We have also been reminding her to use her Frontalis Sling and she is using it more often to lift her lids higher. I was worried that the surgeon took too much eyelid during the tarsal switch and that her eye openings were left too small to open comfortably. I'd love to be wrong about that.

She can finish some more complex foods, like mugwort yakisoba, with a bit of prodding and extra time. She's come such a long way and fought so hard to eat orally!

Other goings on these past weeks.

Evie had 3 dance recitals: one for school, two for the dance studio on 2/25, 26 & 27. 

She looked great up on stage.

Adrian volunteered to be a 5th grade helper at Movie Night at the school. It's a fund raiser but a lot of fun too. This year's screening was of Despicable Me 2. 

He also had basketball, a major book report, and a science project. 

It turned out great in the end, but due to our busy schedules we had to do a ton of the work the night before. That meant I was busy helping him, way past bedtime. At least he did it. And he was happy and proud of the result. Neither Steve or I ever entered the science fair at school. This should give Adrian a 4 in science. This is just one example of a night when Ainsley just isn't going to get a bedtime story.

His project was showed how the distance of the light source affects the rainbow that a prism makes. 

A huge time suck has been this stupid table that I ordered after not finding anything at any of the local furniture stores. I ordered off the internet and after a bunch of hassles the table arrived damaged. A replacement was ordered and I experienced all the same problems as the first time, plus many conversations and e-mails with the company. Today the second table finally arrived and guess what?! It was damaged. AGAIN. 

It looked like it was gouged by a forklift. And yet they still tried to deliver it. It's so beyond frustrating. I don't have time for this crap. 

 Then there was the Superbowl. Did you hear Seattle won?! It's been kind of a big deal. Even though I don't generally watch sports on TV we had a little party which was fun. 

We have limited seating so I popped in and out and built this terrarium in between watching. 

I'm trying to finish some decorating. We're homebodies. I think it's important to feel comfortable in your home. For it to be a reflection of the person you are. Besides, it feels good to be surrounded by rooms you love. I'm not quite there, but nearly. I think it needs a piece of art on the wall next to the cubbies, but at least it doesn't look half finished anymore. (I'm tired of half finished.) I plan to find more interesting and meaningful objects for the cubes over the years. I'm so glad after years of wanting it but denying myself, I finally bought the cubby shelf. I love it!

This weekend is Evie's 13th birthday party and we are keeping it simple this year (her real birthday is, of course, on the 18th like Steve and all the kids).  Looking back I guess really this is the first time we haven't had a theme. As Evie got older she and I came up with ideas together and we fed off each other and overdid it a bit some years. This year it is a sleep over with pizza, a movie, candy, ice cream and store bought cupcakes. Easy peasy. What a relief. How amazing is it that I'm blogging instead of doing something crazy like making a paper mache' pinata. A look back at birthdays past. *

One: Zoo
Two: Teddy Bear Picnic
Three: Bugs and Butterflies
Four: Valentines
Five: Strawberry Shortcake
Six: Princess
Seven: Fairy Paperdoll
Eight: Harry Potter
Nine: American Girl
Ten: Rainforest
Eleven: Percy Jackson
Twelve: Red Carpet 

Have an awesome weekend! I intend to. Adrian made his first basket last weekend and I wasn't there because it was an early game and the nurse couldn't work. Hopefully he'll score tomorrow and I'll get to see. I plan to cherish my baby for another week before I officially have a TEENAGER! Gasp! I'm scared. Wish me luck.

*Clearly extravagant birthday parties are a luxury not a necessity but I feel compelled to say that a lot of the work happens after the kids go to bed or during school. Some people might consider a waste of time but the memories will last a lifetime.


  1. Oh Susan, you made me feel so much better I actually smiled reading about the thing you want to get done, and how it's so hard even to have time to read to our kiddos - a page from my life, to the detail. I read special needs moms being sooo organized, having 17 binders, color coded, typing up perfect notes after every single appointment and I think... shit. So, sorry you're having a hard time, but thanks for lightening the my load by helping me feel less guilty.


  2. Thanks for your comment. It's good to know we aren't alone not being able to do it perfectly, isn't it? It makes me feel better about not getting to making the activity charts for so long, so thank you. Some things I do better than others. I'm also really glad to know that I'm not the only one who can't manage to read bedtime stories every single day.