Sep 27, 2012

Ainsley Rides A Trike!

I have something very special to share with you.

I think you will love it.

Words cannot describe how excited we were to see this video when Ainsley came home from school Monday. A big thanks to our nurse for taking it so we could see how far she has come. Last year she was able to pedal some, but she's gotten so much stronger. And now she is able to steer (in an open space).

We would love to buy her a special needs tricycle but they are very expensive. Even though they are "therapeutic" insurance does not pay for them. As you may have heard me mention, the company Steve worked for closed down in April. He has had a temporary contract working on Halo 4 but that ends in October and we are concerned about finances until he is permanently employed. With Ainsley's birthday coming up on October 18th, we would like to ask our family and friends who would normally buy her a gift, to consider a gift of cash toward a tricycle instead. If we can't raise enough funds we might extend our "Trike Drive" through Christmas.  I'd love someday to see her out in the driveway "riding bikes" with her brother and sister.

Until then I hope she will have a lot of opportunities to ride the school's olllld Rifton tricycle. I'd say it's time to amend her IEP, because she's got this DOWN!!!

Sep 24, 2012

Happiness Week 38

My week was pretty unexciting. Maybe because I wasn't feeling 100%. Ainsley had a touch of a runny nose and I caught it from her. It's a hazard of having too much one on one contact with her trach snot. I woke up with a sore throat, was tired and had a lot of headaches. Luckily since the kids are in school I was able to get some rest during the mornings. I was hoping I could keep it from turning into anything too bad and it worked. It seems we always get terribly sick when the kids go back to the germ cesspools we call school, but luckily we fared pretty well this year. Maybe in part due to the better than normal weather. We actually still have sun when we should have rain. I hope your week was more fun than mine.

I am not making as much progress as I'd like on my photo frame project. Things always come up. I have reviewed 3 years of photos and flagged the special ones. I have 120 pictures so far. And 50 spots. And 9 more years of photos to review. And a week left in September. Lord help me.

Daily Happiness Photos - Week 38
09/17 Grocery Shopping At Trader Joe's
I LOVE Trader Joe's. I buy better whole foods, their prices are fair and since things don't "go on sale" I don't waste time comparing prices or looking for deals or waiting until it's on-sale to buy. The stores are smaller so I can get in and out in 20 minutes if I have a well prepared list. I remember how difficult it was to go to the store when Ainsley was born. I had Ainsley in the cart, her feeding pump, oximeter and suction bag, a puke bucket, diapers plus 2 other children 5-and-under that liked to show me everything and dance around with each other. It was a nightmare. Where we live now I have a choice of two TJ locations, and both have normal parking (a total luxury in the city where the spaces are 2/3 the normal size). Today after grocery shopping I was thinking to myself how easy it was to get what I need to feed my family and how much things have changed in 5 years. Hallelujah!

09/18 Waldorf Salad Wrap
Do you get tired of eating the same old thing for lunch? I do. I had some left over chicken so I added a bit of chopped celery, onion, apple and walnuts a bit of mayo and wrapped it in a tortilla. It was yummy.

09/19 Teeth Brushing Time
It was so cute, when Ainsley saw that Evie and Adrian were brushing their teeth before bed she asked to too. She stood up at the counter top and looked in the mirror and did everything they did. The sight of the 3 of them doing something so normal was so great!

09/20 Clean Hands
Ainsley got ahold of the markers. Luckily the washable variety. She colored all over both hands. She came up and showed me and I let out a little shriek. She laughed. Then I told her to go wash her hands. You know what? She DID! She crawled to the bathroom, pulled herself up, turned on the light, turned on the water, got soap, washed off the marker, turned off the water, then dried her hands on the towel, turned off the light and came back and showed me. She didn't even make a mess. Steve and I just looked at each other in disbelief. WOW!

09/21 Sleeping with the Kids
I love when the kids climb into my bed and we snuggle together and drift off peacefully to sleep. I co-slept with them as babies (except Ainsley because she has to wear a pulse-oximeter and humidifier when she sleeps) so it reminds me of those time and makes me feel like they aren't as grown up when they sleep in our bed. I cherish these times because I'm sure there will come a day that they are too big and it's probably not far off.

09/22 Pretty Things
My sister Rene got married in Hawaii and had a local reception today at a friends parent's home. The hostess had a very feminine house with so many pretty things. I loved it. It's been a long time since I've been in that type of home. It makes you feel good. The dessert table was beautiful with the most amazing cupcakes and treats. It was a lovely time.

09/23 The Coronation of Queen Ainsley
Evie staged an elaborate coronation ceremony outside for Ainsley. She was being elevated from "Princess of Cute" to "Queen of Cute". Since Steve was applying sealer to the driveway and I spent the entire day cleaning out the pantry (because I found some bugs) it was a much appreciated diversion.


To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Sep 17, 2012

Happiness Week 37

Fall is in the air, even if it is still beautifully sunny. The mornings are crisp and the afternoons are warm.  It's the perfect weather. I am enjoying it while it lasts because I'm sure the rain and cold will be here soon. The kids are liking school. I have a lot of time to take care of things before they get home. I'm a person who "likes to get things done", so that makes me happy. Steve is home now in the evenings because Halo 4 is done. We have family time. It is so nice for the kids, and takes a lot of pressure off me. I'm sure Steve is happy to be working less hours too. It's like everything changed overnight and it feels "weird". In a good weird kind of way.

In case you missed it, Ainsley started swallowing some solid foods. This is HUGE. Here's a link that my post about it, Major Feeding Progress. If you noticed some discontent in my posts these past few weeks it was largely due to the trials and tribulations of feeding. It's easy to lose faith during the tough moments when things aren't easy. Despite periods of doubt and the fact that this life isn't easy. I really wouldn't change a thing. This is how I feel about it.

Happy Monday, and I hope you have a good week whatever you have planned.

Daily Happiness Photos - Week 37

09/10 A Fire
I love a fire. Real is best but gas is so convenient. The weather is changing so it's fire season again. During the fall and winter we run our gas fireplace every day. Ainsley also loves a fire and has missed it. First thing she pulled off her shoes and SMOs to warm her feet by the fire.

09/11 Driving Evie to Ballet
It was just me and Evie driving to ballet class just like we've done since she was 3. The light is getting lower in the sky and it was beautiful the way it shone through the trees and window.

09/12 Wonder
 This novel, Wonder, is about a 10 year old boy with a craniofacial anomaly. I couldn't put it down and finished it in just over a day. I read while waiting at Evie's bus stop, during ballet class, a bit before bed and even sat out on the patio reading with Evie, gasp, instead of doing something "useful". Having a child with a craniofacial condition (craniosynostosis) I was super excited to read it. I recommend it to EVERYONE! Read it!

09/13 Tea
I love a cup of tea. Mostly herbal. Variety is the spice of life. This house has a perfect cabinet for storing my stash, only one box deep so you can see everything easily. It makes me very happy to open this cabinet and pick the perfect tea for my mood. I'm happy that it's tea season again. Come over and have a cup with me and we'll chat in front of the fire.

09/14 Toothless Smiles
I was worried about losing Ainsley's smile, but I think her toothless smile is just as cute, maybe even cuter. We were watching the movie Tooth Fairy (ugh) and I asked Ainsley if she wanted me to pull it (I've been trying every few days. It's a stubborn tooth.) She's brave and really wanted it out. Then I forgot to put it under her pillow for the tooth fairy, darn it.

09/15 Loving Siblings
I am so proud of my kids. All three. I love how close they are. It was a beautiful day for a soccer game and at the end Evie walked Ainsley up to "high-five" Adrian and tell him "Good game!" I am so grateful that Evie and Adrian are proud of their sister.

09/16 Using the China
It is such a shame that most people don't use their china. Yes, I admit I was a little nervous to let Ainsley hold the teacup by herself but she did fine. It's meant to be used. China takes an ordinary meal and makes it special.  

To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Sep 15, 2012

Major Feeding Progress

I've been telling you I would write a post about feeding and here it is. I warn you it's long. Feeding issues are complex for a tube fed child but there is a video at the end of this post so read on and don't miss it at the end.

In June we started seeing a new speech therapist to work on oral motor skills as they relate to feeding and speech. We were referred to this therapist by Seattle Children's. I had been requesting to get Ainsley into an intensive feeding program meant to wean children off feeding tubes. Why?

Despite being virtually 100% tube fed Ainsley has been increasingly interested in table foods. A contradiction it would seem. She has always sat at the table with us at dinner time and explored table foods as far back as I can remember. She loves to taste, she just wouldn't swallow any of it. Recently though she has been putting the food further back in her mouth and even biting pieces off and chewing it some before spitting it out.

I've tried everything at home and I knew I needed help but after talking with them I decided it would be better to work with her at home with some guidance from a therapist rather than spend intensive periods of time at the hospital with all 3 kids.

Ainsley's been able to safely swallow purees (in limited quantities) for years. The hurdle was getting her to eat anything with any texture. She wouldn't even eat buttery mashed potatoes or applesauce without gagging. I knew that she could do it though because small chunks of fruit could be hidden in yogurt and she would swallow it fine until they were big enough that she noticed them. In addition small quantities of baby cereal could be added to smooth purees. There was an invisible line, though, and any time the texture surpassed "the line" she would gag rather severely and spit it out.

In the past I tried pureeing every possible combination of foods and flavors to make a puree that she really liked well enough to eat a meal sized quantities but nothing ever stuck, and she usually preferred her blenderized food.  In fact in summer of 2011 she was drinking her blenderized formula, about 32oz a day of it or 3/4 of her feedings. But it was short lived and when she got a virus (not from aspiration) she stopped eating orally overnight. I was suspicious that this "backsliding" was due to tonsillitis. Since then she has not been interested in drinking more than a few ounces of blenderized formula, whether I made it thick or thin. I tried again this summer with little success.  I have tried having her drink Pediasure and the result was no better.

Since her tonsillectomy in July I've seen an even greater increase in interest in foods and I've been hoping it was due to less inflammation down there by her epiglottis and perhaps an increased sense of taste (she is capping easily even with the 4.0 trach so I think she is getting better airflow now).  It is not uncommon for kids with trachs to have difficulty eating. In addion though Ainsley has a cerebellum malformation and eating is challenging for her in the same way that all other motor skills are. In addition her swallowing muscles are weaker because she doesn't have to eat orally.

After giving it a lot of consideration I decided the problem was that she really wanted the variety of taste and texture of table food but just didn't have the skills to eat them.

And so back to therapy.

We've been working on jaw strengthening. 

And working our way through the straw hierarchy and doing Beckman Oral Motor exercises.

In addition Dawn introduced this new therapy that I'd never heard of called ILS (Integrated Listening Systems-for a video with further explanation click here.).

For part of our therapy sessions she wears the ILS headphones while she works on oral skills or plays. The headphone has some sort of bone conduction piece in the connecting piece of the headphone that sits on the skull. The music is nice classical music that is designed for the program but basically just sounds like ordinary music to me.

Here she is really working over a pizza crust, one of her favorite "foods". These pictures were taken later after I'd been conducting my own intensive home feeding program this summer.

We worked on oral feeding for every meal plus snacks. I spent hours and hours spoon feeding.

I'd try to have her spoon it herself. Watching in the mirror helps with oral awareness. But ultimately she would tire. My goal was for her improve endurance and eat entire meals. I learned that hunger helped immensely but she just requires too many calories to eat all her food orally especially if it is pureed (not varied or interesting). I even made an AAC page so we could "talk" about the food. I thought perhaps she could tell me what she didn't like about the food. We worked on describing tastes: salty, sweet, spicy, & tangy. She did learn quickly to tell me to "warm it up". Until I learned that was a stalling tactic.

You name it, I've pureed it.

Conventional food likes veggies, chicken and potatoes with butter.

To pureed pepperoni pizza.

After trying it all, I knew the missing motivating factor was hunger and the bigger problem was her knowledge that when she would get tired I would just tube feed her.

Sure enough during these intensive feeding sessions she would cry and ask me to tube feed her. 

It was miserable. For all of us. And a shitty way to spend the last weeks of summer.

It wasn't easy for her.  I'd hoped she would get faster in time (and perhaps she would if we had that luxury) but instead I had to do the spooning in order to get the feedings done in a reasonable amount of time.

Still we made progress.  

As she got stronger and was motivated somewhat by hunger I got her to tolerate increasing textures. Like baby cereal with pureed berries, mashed bananas(a previously rejected texture) and cream.
For the first time in her life she ate a few ounces of buttery mashed potatoes. 

Even though we took apple squeezers to school when she was 2, she actually started to like them. (The new flavors also helped.) 

One day she even asked for a banana that she saw on the counter top. She bit it into a thousand pieces and even though she didn't swallow it, it was progress and I could tell she enjoyed it.  

She ate a tiny bit of refried beans. Another "texture" she previously would NOT tolerate. I think she may have swallowed some bits of tortilla chips.

She became excited for snacks, even if she couldn't fully eat them.

She started to tell me that she was hungry for the first time in her life. We had established the connection.

And although she always liked to work over a sausage or hot dog there was a difference in the amount of chewing I saw.

When I took the big kids to McDonald's for shakes I believe she swallowed a bit of french fry. And I think she started to swallow small bits of pizza crust and chips.

Unfortunately after 2 1/2 weeks of eating all her meals, 3 plus a snack or two, orally, she woke up with stomach pain. I think she had become constipated (Yes she was getting water through the tube.) probably from too many bananas, potatoes and maybe the pizza. I knew she wasn't feeling well and I wouldn't be able to get her to eat lunch and dinner that day. Even though she ate full feedings she was looking thinner and I knew she couldn't afford to skip any meals, even for a day. So I tube fed her.

I knew that once I "gave in" we were done. Tube feeding is easier for her. Eating is hard work for her. So if she knows tube feeding is an option she'll choose that.

And you wonder why I don't like tube feeding?

I was hoping we could make a full switch to oral before she started full days at school (and then progress with textures) and we were SO close. But ultimately I don't think she's quite ready. It was very disappointing. I could almost imagine a day that I could fix a single meal for my entire family or leave the house without having to bring feeding equipment. Or to someday eat at a restaurant without having to explain that one of my children can't eat or worry what other people might think about feeding her through a hole in her stomach.

I felt sick, for all the time spent that could have been spent doing something else.  This time and the countless hundreds of hours spent working on feeding over the past 5 years. It is hard to decide where to put your energy. Especially when you have other children.

Still think it was worth it. She strengthened her swallowing muscles some. And I think she worked through some of the texture aversion. And that paved the way for this glorious day.....

On Friday 9/7/12 she ate some goldfish crackers at school. Then later that night she ate more, probably another 15.*

See, all gone. Mostly.

We taught her the sign for fish crackers and she is eating some every day.

And at therapy she has allowed us to crush crackers into her applesauce. Another previously un-tolerated texture. It would appear we have crossed the bridge.  We will be keeping a close eye on her secretions to make sure she isn't aspirating. Despite previous questionable swallow studies, chest CT's over the past couple years appear to show her lungs have not deteriorated.  It may be a long road yet, but I have hope that Ainsley will one day be an oral eater.

*I would  like to thank my dear friend Lisa for recognizing what a big deal this is making the sweetest video to congratulate Ainsley. She LOVED it! To see it click here.

Sep 11, 2012

Medically Intensive Kids

I want to write about this while it's still somewhat fresh in my mind. Someone in our family recently told me that a family friend said that the reason she had home births was because if anything went wrong she didn't want the child(ren) to survive. In the context it was pretty obvious that they'd been talking about Ainsley and the inferred meaning is obvious.  It's quite astounding, really, what "well meaning" people will say. It's okay, I've developed a thick skin and it's not a surprise to me to know that some people think this.

I'm sure this "friend" was able to have beautiful natural births in her own home and perfect healthy little pink babies. Probably she was up making dinner the next day. And of course she must have effortlessly nursed all her babies. Maybe she even sewed their clothes. It is easy to be smug when you are lucky. And luck is really what it is. The chance of having a child with birth defects (hate that term) is quite high and occurs randomly across all ages, races, classes and people with all levels of education. It's a fact.

The truth is that modern medicine has caused many women to believe that birthing children is safe, but it wasn't always that way. My own mother's mother died as a complication of a home birth because the town doctor was "away on holiday".  My dear friend Karin died after child birth last year and she was in a hospital. Not only was giving birth dangerous for mothers, in the days before modern medicine, many children were still born or died shortly after birth. Some still do. Another fact.

I myself was an unplanned teenage pregnancy between two people who were not ready to be parents and in a different decade I probably would have resulted in an abortion instead of being adopted. In addition I was born 2 months premature weighing only 3lb 3oz. If I had been born a decade earlier, I might not have lived. I never had health complications but many premature babies do. With changes in technology these days more and more micro preemies can be and are saved  at a time when ironically they could legally be late term aborted. I have a lot of personal feelings about the value of all human life.

There are a lot of people who believe in survival of the fittest. This theory might make sense when you think of it purely in an advancement of the species way but the problem is in the execution of the theory in real life with real people. I know from comments like the one made by the family "friend" that some people think somehow we should have "let Ainsley die".   When people are sheltered in anonymity like they are when they post comments on the Internet or YouTube you learn that there are actually far more people who believe kids with birth defects should die than you would ever believe. I've had the most heartless comments left on videos that were posted there as a means to share Ainsley's achievements(which I immediately delete). I do believe some of these people might go so far as to commit murder and justify it in a Hitleresque kind of way.

I think sometimes people think that the doctors come in after the birth and ask "Would you like us to kill euthanize allow your child to pass by withholding medical services?" In all but the rarest situations they do not say anything of the kind and do what they can to protect life until it's obvious it is causing suffering to the patient. It's called the Hippocratic Oath. So when a child has trouble breathing they offer a tracheostomy, when there is a defect in an organ or limb of the body they attempt to repair it. Each "issue" is treated on its own. And so the child's life is saved and made better.

An interesting fact is that the tracheotomy is the oldest known surgery performed. Even though many people know little about them they have been performed successfully on children (and adults) for hundreds of years. Although a parent might be able to legally consent to withholding the surgery to do so could in many people's eyes, constitute murder. In Ainsley's case that was all that was needed to save her life. Further surgeries enhanced her life.

People in general are not against life saving surgeries or tracheostomies. If they were in a car accident and the choice was a trach and reconstructive surgery or death most people would not only want medical intervention they would expect it. Nobody would question whether the medical costs and care were "worth it". At the root of the difference between this scenario and saving the life of a child born with birth defects is the truth that some people don't believe these children are "worth saving" because they believe these children are "less" because they are "born this way". And this is when we get into very complicated issues of Bioethics and often, I believe, discrimination against people with intellectual disabilities. Many people think it is different if the child is intellectually "normal". Equal rights for the intellectually disabled is the last frontier of civil rights.

Advancements in medicine in recent years cause many children who would have previously died to live or live longer. Having one of these children in my own family I must admit the truth which is that it can place an enormous burden on the family when these children are brought home. But in addition these children bring amazing gifts to the family and world. Like all adversity we would not choose it, but it can make our lives richer and more meaningful. More importantly these "defective" children are people. Their own lives matter as much to them as yours does to you. Many of them have endured more suffering than you can imagine and yet their spirits are strong and shine regardless. If you are lucky enough to know one of these special children then you know what I mean.

And on that note I'd like you to watch this video (especially if you are secretly one of those people who believe these children should not be saved.). Pay attention to the lyrics of the song. Remember you can click on the arrows to make it full screen.

And on that happy note perhaps you might like to read my Happiness Week 36 post. It's a little bit lighter.

Sep 10, 2012

Happiness Week 36

It was back to school week this week. Now that it's Monday and we are starting the 2nd week of school I think things are going to be okay. I still have a bit of a dilemma because Adrian and Ainsley are getting ready for school at the same time and Ainsley's bus comes after Adrian's. Last year Steve would have left for work, Ainsley would be gone and I'd take Adrian to the bus. So far Steve has been staying to walk Adrian out but I don't think that's the ideal solution.  Having 3 kids in 3 schools does pose some logistical challenges. But I felt better when Ainsley's friend J's mom told me she has 6 KIDS IN 6 DIFFERENT SCHOOLS. That's the thing about life and happiness it's all about perspective. Pretty much everyone there is falls into the category of "Things could be better but things could also be worse" including the people we think have it better.

Now that summer is officially over I feel I should report that my Staycation Basket was not as successful as it could have been. It did give us some fun things to do  and was a bit of a diversion but I felt I was often having to say no when the kids proposed an activity that wasn't easy to execute on a given day, for example like having a lemonade stand or bringing out the Sculpy (though we finally did that one). The summer ended with a lot less done than I'd hoped even though I dedicated 2 months to it. The truth is it made me more unhappy than happy because it was so obvious I was failing. I guess it's the difference between the fantasy of how life could be and reality, especially the reality of having a special needs child with medical issues and a workaholic husband. Still I think it contributed to a funner summer and that was the goal.

Since I've learned that everything takes longer than you'd think, and I have limited free time I've decided that my "area of focus" for the month of September is to get my photos frames done for the living room wall. How silly is it to take all these great pictures and have none of them displayed?!What I really want is all my photos into albums, but since that isn't realistic I'm going to stick to something I might have a chance of completing. I figure if I announce it to the world then I have to do it. It might not sound like much but believe me trying to find 50 of my favorite pictures among thousands and thousands is going to be time consuming so I think that's about all I can handle this month. So expect to see that on the blog in October or the next time you come to visit our house.

It's getting near the end of the year. I'm excited to see my Happiness photo project when it is complete with an entire year captured in 365 pictures representing the things that made me happiest. In these posts I like to give details but at the end of the year the photos will have to stand on their own as a collection of images. Will it be interesting, boring, sad or what? When I see them as a group will I feel it was a good year or bad? What will other people see when they look at them? We shall see. I think it would also be interesting to do the same thing and but the opposite, all "unhappy" pictures of the things that cause stress and unhappiness. Then if you looked at the collections side by side, the best and worst of one person's life, what would that tell us?  A lot, I suspect, and I think it would make an interesting photography exhibit.

As the art in my TV room proclaims The Future is Just a Collection of Successive Nows. I hope you find ways to enjoy your "nows" this week whatever you are up to.

Daily Happiness Photos - Week 36

09/03 Bubble Gum
One of the items in our Staycation Basket was Bubble Yum bubble gum for a bubble gum blowing contest. The kids wanted Steve to be there so we almost didn't get to it this summer. Of course he thought he would win and I thought I would. Who do you think won? The great thing about this family activity is that you can do other things while you blow bubbles, though you do risk your bubble not being seen. If it popped before it could be judged then it didn't count. When I was young I used to walk down the hill with my friend Michelle to the local drug store to get bubble gum and we would blow bubbles the whole way. At one time it was my specialty. I have some great pics but I didn't take them so I can't use them here. I love the expression on Adrian's face as he tries so hard to blow a bubble. He was successful but that picture doesn't capture the happiness for me as much as this one. It was a lot of fun! ......And of course I won. You should see what I can do with 2 pieces of gum.

09/04 Hot Air Balloons
We were in Woodinville buying jeans for Adrian and when we left we spied hot air balloons. They sometimes fly over our house making a whooshing sound as the fire periodically blasts hot air up into the balloon . Today as we drove home we "chased" them in the car. (I actually took this picture out the sun roof with my point and shoot.) You really can't help but be happy when you see these, even if you have just spent an exhausting 2 hours shopping for clothes with 3 kids.

09/05 Celebrating the Small Things
Whoever said money can't by happiness wasn't very creative. It surely can. I grew up in a family that didn't spend money unnecessarily. Frugal would be an apt description. We were lucky to get a cake on our birthday. Getting a cake for something as ordinary as the first day of school just didn't happen. Ever. To say that my kids were happy about the cake is an understatement. And considering how the day went I was really glad I took the time to get one. It was a nice way to end a stressful day.

09/06 100% SPO2
Having I child with a trach means having monitor bodily functions that other parents just don't ever concern themselves with, like SPO2 levels. That means the level of oxygen in the blood. Ainsley SPO2 level and heart rate are monitored every night while she sleeps with a machine similar to this.  It's not uncommon for kids with trachs to have low oxygen levels. We are lucky that Ainsley despite everything is quite healthy and her levels are always good. Still I always worry a little when we go to the Pulmonologists office and they check it but it was 100% with her speaking valve on. She does so well in fact that I asked about not using the monitor (it frequently wakes us with false alarms). The Pulm says he loses 1-2 patients a year and they are usually those kids who were doing really well and weren't being monitored.

09/07 Putting My Feet Up
Many days I'm pretty much on my feet the entire day. Especially with the kids home for summer. It should be the opposite but it's true. Now that they are back in school and we survived the week I was able to sit outside and put up my feet for a few hours, call a friend and write a blog post. It felt great. There was something else that made me really happy today but it's a secret and I'm saving it for another post.

09/08 Gardeners
Finally we have gardeners here to help us. We bought this house for the layout and accessibility for Ainsley but we knew the yard would be more than we could handle even though we appreciated its beauty. We bought the house anyway and the maintenance has been a huge source of stress for me. Unfortunately the size of the yard makes finding an affordable gardener a challenge. They seem to be doing a good job and I am hopeful that they can get it into a condition that we can maintain.

09/09 Pudding with Feet
Sometimes you have to just create your own happiness with chocolate.


To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Sep 7, 2012

Back to School

It's been a crazy week. It's Friday and things have settled down some. Though I already spent an hour and a half writing an e-mail to Ainsley's doctors and scanning the Cincinnati report for them this morning. I have bills that should be paid and school paperwork that I need to review but I decided not to. Instead I sat on the patio and called a friend who perhaps needed an ear, and then write a blog post.

This summer it's been really difficult to blog. As you know Steve has been working 60+ hours every single week this summer. We couldn't even get away for a weekend of camping. More than anything I wanted to play with my kids and do the things that I can never seem to make the time for but it just never quite happened the way I imagined it. By the time I finished my Monday Happiness posts I felt like I'd spent enough time away from the kids and had to hope that those posts gave enough of a glimpse into what was going on in our lives. And I also posted the important stuff. But I love the more frequent posts of regular bloggers. Probably I will never have time for that.

But I am hoping for more posts now that the kids are back in school. In addition Halo 4 is nearly done so Steve should be coming home in the evenings soon. Maybe even starting today. Some of the things I want to write about: AFO/SMO's, the Nova 7 communication device (Though I still have to do some upgrades and then programming that I haven't had time for, so maybe that should come before blogging. Still, I know some of you want to hear about this new communication device. ), eating/feeding & therapy as well as posting some summer photos from our picnic at the farm and our trip to the zoo. I didn't even take pictures of our day at the beach and Steve took the kids to Wild Waves, I stayed home, so there are few pictures of that.

Hopefully all that is to come but for now I'll just start with a back to school post and hope I can finish before Evie's bus comes.

She started middle school. Yes I know, my first baby is growing up. They thought they would ease the 6th graders into school by sending them for a couple hours without the 7th and 8th graders. So here is a picture that Steve took when he walked her out to the bus at 6:45 in the morning but I'm not sure if that counts as the first day of school. I'm going to say it doesn't. Since they played games and didn't bring backpacks and were back home by 11:30.

When she got home we rushed out the door to go to Ainsley's school's Open House that had started at 11:00. We were a bit late because of the overlap. Ainsley seemed right at home. She clearly loves school. She is now in Kindergarten and so that is in a different part of the school she was at last year. It may as well be an entirely different school. The classroom is close to the gym, lunchroom, bus area and playground so we had it written into Ainsley's IEP that she will be using a walker for the majority of the day. When we showed up the walker was there which was great because I was concerned they might need it at the preschool for another student. She got right into it by herself and started walking around the class.

She has her own cubby and an assigned seat at the table. This is a "learning center" classroom which really means it's special education. They have 10 students and many of the kids have an aide. Ainsley will attend with a 1-on-1 nurse like she has since she was 3 because of the trach and her high needs.

There was a little girl in her class last year who she loves. I will call her J for privacy reasons. At the Open House J walked in with her mother and Ainsley immediately recognized her and was all smiles and love. It was the cutest thing. J responded the same way and it was clear that in their minds they are "besties" even though they can't speak.

I'm not sure but I think J is the same age, just smaller because she has Down Syndrome. Ainsley is tall so she towers over her. They are SO cute together! I love that Ainsley has a real friend.

The room is very cheery and nice. It looks educational (in a good way). I'm sure the kids will be fighting over who gets to sit in this egg chair in the reading center, I know mine were. The teacher, I believe, came from special education at the high school level but she seems very enthusiastic about working with younger kids. I have a feeling that Ainsley will have a great year. In addition I met the general education teacher that is assigned to Ainsley. I believe she's British (my FIL being a Brit will appreaciate this). Next week they will look for opportunities for Ainsley to go her classroom for periods of time. I would love to be a fly on the wall the day that Ainsley first sees a classroom with 30 kids to see the expression on her face. She loves to people watch.

Evie asked if we could go to McDonald's for shakes to celebrate her first day of middle school. The tough thing about Ainsley is that she wants the same food as us but can't eat it. So I knew she'd want a milkshake but couldn't drink the whole thing so I bought one for her and none for me and we "shared". She enjoys putting table food into her mouth to taste it. I think she may have actually swallowed a small bit of french fries which was very exciting! But it was only the tiniest bit as you can see the rest were well tasted but spit out.  We had the usual "starers", even though we sat around the corner at the nicest and cooincidentally most secluded table, but we were pretty good at ignoring them.

We ended up doing a little school shopping because I discovered Adrian has outgrown all his size 10 jeans. As a result I accidentally missed the first day of ballet & soccer. Sheep! And I had to pack up all the school supplies into their backpacks for the actual first day of school.

I was already exhausted and we aren't even started.


I wasn't going to buy Evie new school clothes. My plan was to enjoy the final days of summer and buy her what she needs after the start of school.  Though I did buy her a back-to-school hat because it was so perfect for her.  The funny thing is that her school doesn't allow hats. Bummer, she'd look so cute cruising the halls in this adorable hat.  When buying jeans for Adrian she found the pefect top to go with it so she decided to wear it for the first day even though she had to take it off. My brain doesn't work too well at 6:30 am so unfortunately I didn't get a great outdoor shot like I normally would. Steve walked her out to the bus and I stayed with the other two kids.

The night before Ainsley's pulse-ox went off and I must not have heard it right away while I was working on the computer. Steve was in the hot tub. She was hysterically crying and it looked like she was trying to climb out of her crib by herself in the dark.  Very scary. So I wasn't about to leave her alone even for 5 minutes....even less than a block away....even though it meant missing the send off for the first day of middle school. I was a little sad not to be there but I did get to give her a hug before she left.

Luckily it was a Carmela day for Ainsley's first day of school. It just made things easier. Together we got Ainsley ready for the bus, which comes later this year. That's better for all of us. Ainsley was SO excited to get her own backpack and lunchbox. She really didn't notice it was a hand-me-down from Evie. From Hanna Andersson, so cute still even well worn.

At the same time Adrian was getting ready. Luckily Adrian needs little help. He does what he needs to and I am so grateful to have one child like that who doesn't need too much help.

He looked so handsome on his first day of school.

Our new medical insurance company had been e-mailing us to log onto their website to answer some questions about secondary insurance. I assumed it had to do with Ainsley having Medicaid (she's on a waiver program for medically intensive and disabled kids) and knowing it could be complicated I called and was on the phone with them for over an hour. Due to a mix up with Steve's new employment we actually had double coverage for June which was further complicated by the fact that Ainsley has Medicaid coverage. I don't know which insurance company should be responsible to pay. That's their call as far as I'm concerned, but they wanted me to decide?!  The poor guy had no idea what to do. Some situation call for a higher level employee.

In addition I had workers at the house to pressure wash our swing set so it can be treated before the weather changes (it's quite old and treating it will keep it from rotting). At the same time I asked if I could pay them to pressure wash the driveway so it can be sealed (to keep it from cracking because we won't ever be able to afford to replace it), again before the weather change. So I spent an hour cleaning out the drain gutters so he could pressure wash. Then I headed to the store to get him cash and pick up a cake to celebrate the 1st day of school.

By the time all this was done it was about time to go meet Evie at the bus. I put on my gardening gloves to pull some weeds while I waited. I started to get nervous when the bus was 20 minutes late. I went in to check the messages and grabbed the phone to call Steve and ask him if I should start to panick when transportation called to say Evie was on the wrong bus. By this time it was 20 til 4 and my other two kids were due home. They say they would drive Evie to Adrian's stop by about 4:10. Meanwhile they don't show up and Ainsley still isn't home so I call the nurse.

Ainsley is using a van transport service because the school didn't have a bus for her. I'm trying to imagine what could go wrong. It turned out another kid's bus didn't show so our driver took her home first. Why I don't know. And they didn't have her apartment number so he didn't know what building to go to. Eventually they get home but Evie STILL isn't home. And our nurse is supposed to be off duty but I have a missing child and want to hear about Ainsley's first day at Kindergarten because Ainsley can't talk so she can't tell me herself.

Adrian waits for Evie while I run into to grab the phone to call and find out where the F is my kid?! And of course THAT is when she shows up. Hysterical. An hour and a half after she is supposed to be home on the first day of middle school. Even though I'd been waiting outside the entire hour and a half I didn't get to talk to the driver and to top it off Evie thought I wasn't waiting for her. I gave her big hugs and she felt a little better.  

But then I had to call transportation to find out what happened so that it didn't happen again the next day.  After lots of talking with them and Evie we figured out she DIDN'T get on the wrong bus she just missed the stop because the day before the bus picked her up at a DIFFERENT LOCATION.  So she thought the bus would turn down the street like it did the day before, which is why she didn't get off at the intersection. The day before there was a different driver and he turned down our road.  Also, the day before she was the last kid off the bus (there were no 7th and 8th graders) so she thought maybe she would be last off the bus again this day. Until the driver arrived at the end of his route and she was still on the bus. So then she had to ride to the elementary school for his entire next route.

Thankfully Carmela stayed late so she could tell me about Ainsley's day. Which was really good.

Then it was time to cook dinner.

The weather was beautiful so I grilled and made corn on the cob, the kids' favorite.

I bought a cake beause it is so much easier than baking. I was so happy I planned something special so we ended our day on a happy note and Evie seemed to be over the trauma. I think she'd otherwise had a good day. She is very excited she has drama and art. Adrian had a great day. He likes his teacher. He was so sweet to Evie when she got home.

Then it was time for homework. Seriously.

All in all it was a good first day aside from the transporation drama.


The next day Steve got Evie and Adrian out the door. Our other nurse (for school) came and I was able to tell her all the details for Ainsley's feeding and mobility in the few minutes while Ainsley's wheelchair was being strapped down(she doesn't get paid to work in our home so communication has to happen in the few minutes before and after school).

Unfortunately Ainsley had a Pulmonary appointment in Seattle, so I picked them up at 10:30. She came along with us. These appointments always drag on. I would not have picked this date, but it was 9/6 or late November because this doctor is in high demand. We had a lot to discuss and he was running behind so it was 2:00 by the time I dropped Ainsley back at school for the last half of her second day of school.

I dropped off an overdue library book and picked up lunch (which I ate in the car and finished on the side of the road) and a few groceries and headed home to meet Evie's bus on the corner which is a 45 mile an hour road.  It was sunny and very hot, like 110 degrees with the heat of the pavement. I felt really stupid standing there on the street corner for 20 minutes (naturally the bus was late) but after the previous day's debacle I wanted Evie to see me. And I wanted to talk to the driver. I was nice but let him know I'd written an e-mail to the transporation supervisor that morning requesting that the stop location be changed. I met a neighbor with an 8th grade student and she is going to do the same. Please cross your fingers for us that they'll change it. I don't want Evie crossing a 45mph road.  

Everybody got home okay. My sister came over for dinner. Adrian had soccer practice. We did homework and it was time to get to bed so we can get up and do it again.


This morning Steve had a hard time getting Evie ready. He thinks she should just wake up on her own at 6:00am. Not. Going. To. Happen. Hopefully Evie's sleep cycle will be better adjusted by next week. But this is going to be tough.

The other two got out the door okay.

I just picked Evie up at the stop (15 minutes late.) Wrote a second request to change the stop location because the driver said they aren't intending to change it.

Now Adrian and Ainsley are due home and we are headed to therapy. I'm SO ready for the weekend.

I hope you had a good week and have a good weekend.