We had a lot going on this week: Ainsley's 6th birthday, our 16th wedding anniversary, a soccer game, fall road clean up, Halloween decorating and a day at Remlinger Farms. I hope I'll have a chance to do a blog post and share more photos but come to think of it I still owe you a post from Salmon Days. It can be hard to make the time for extra blogging throughout the week but I'm sure that's no surprise.
I hope you had a good week whatever you were up to and that the coming week brings you many moments of happiness.
Daily Happiness Photos - Week 42
10/15 Something Different for Dinner
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I get tired of eating the same old things and for some odd reason while grocery shopping I had the desire to make Spaghetti Squash for dinner. I roasted it and made a meat sauce with crushed tomatoes (a bit lighter than your regular spaghetti sauce) and served it with salad. It was pretty tasty and the kids actually ate it.
10/16 Chicken Noodle Soup
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Sure enough I was right, Evie was getting sick. She was tired in the morning but went to school anyway (it's hard to tell at 6am when you're tired on the best of mornings) and I had to pick her up from school a few hours later. In a weird way it makes me happy when I can bring my child home and give her/him a little TLC. It's a benefit of being a stay at home mom. After a nap Evie asked me to make her chicken noodle soup for dinner. After we ate she told me she meant Campbell's. We had a good laugh because that would have been a whole lot easier. But since we've been "under the weather" it was great to have a big pot of home made chicken noodle soup, enough to even have leftovers. Nothing is better when you're sick.
10/17 Clean Carpet
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We had seriously soiled carpets in the TV room, as in covered with black spots (I was worried they might not come out and we might have to replace the carpet) so I hired a D.A. Burns to come clean them. They have a 250ft hose connected to a truck with some serious sucking power. I've used a Rug Doctor and a Bissell and there is no comparison. The dark areas in the picture are shadows not stains. I'm so happy that
10/18 A Birthday Party
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This year we decided not to throw a birthday party for Ainsley. She doesn't seem to care so it seemed like our time and money could be better spent. Still I wanted her to have a special day so I had the brilliant (if I do say so myself) idea to surprise her with a doll party. I had the table all made up when she got home from school. We then played together for an hour or so, it felt so great and she had so much fun! Of course we had our own celebration too. I promise to post more pictures later.
10/19 Anniversary Dinner
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I think if you ask anyone who's married (excluding newlyweds) they will admit that marriage can be tough. Having a child with medical issues and special needs child just adds more strain so we take pride in sticking together year after year, for us it is 16 years married (21 together). We are lucky to have Matador in Redmond, the food is fantastic and the atmosphere reminds us of our honeymoon in Spain and Portugal (even if the restaurant is technically more Mexican than Spanish). We had a great time and I think it might become our anniversary tradition.
10/20 Halloween Creepiness
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After fall road clean up and soccer we pulled out the Halloween decorations. The kids always have so much fun decorating (I always need a drink or two to make it through). Evie and I made our pages for the entry way using some fantastic scrapbook papers I found. One of the papers had an invitation to Marie Laveau's House of Voodoo ball, so we cut it out and made an envelope for it (from my grandmother's 50 year old stash) addressed to Kerry Mehoff (get it? get it?!) and then completed the mortuary toe tag with her name dated with the same date as the ball. I got a sick pleasure when I had the idea to add some red food coloring "blood" to the string. My imagination really does get the better of me sometimes.
10/21 Pumpkins at Remlinger Farms
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We made it to Remlinger Farms for their fall pumpkin harvest festival and picked out a wheelbarrow full of pumpkins. We rode the train, the model T cars, roller coaster, ate caramel apples, fresh made donuts and kettle corn, pet the farm animals and got soaked in the rain. It was great!
This week I had 2 kids home sick from school at various times. Then it got me over the weekend. I think it's ironic considering that I got the flu shot on Tuesday when I took Ainsley to her appointment with the ENT but I swear that isn't the first time. The years I've opted not to get the shot I've fared just as well if not better. I know it'll sound crazy but I do kind of think it's a racket promoted by the drug companies. I'd like to see some hard evidence that they work but I think that's unlikely. Mostly I get the vaccine because Ainsley's doctors strongly encourage us to.
We had a great weekend full of busy togetherness at Salmon Days but I was happy when the kids went to school and I could get some peace and put the house back together. I bought this CD a few years ago but misplaced the disc. I found it a few weeks ago and today I laid down and listened to it. I felt a little silly at times, but I did feel more relaxed even if it didn't make my headache go away.
10/09 First Request for Candy
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Ainsley requested candy, Australian raspberry licorice, at the checkout of a store, for the first time! Normally all those things near the register go completely unnoticed by her. Even though I would normally tell Evie and Adrian no, I was thrilled to say yes. Really, I'd have bought her anything. I didn't even really mind that she just licked it.
10/10 The Perfect Shade of Blue
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I've been taking advantage of the kids being in school and taking care of things around the house. I bought a shelf at the Goodwill for $3 for Evie's room many months ago, and today picked up the perfect shade of blue to paint it with.
10/11 My Paint Kit
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My birth father is an artist and years ago he bought me this super nice box full of oil paints and supplies. It means a lot to me. I had a lot of fun as I color mixed the perfect shade of red to touchup the paint on my beloved rooster cookie jar that I've had for 20 years. He'll be looking as good as new soon.
10/12 A Clean Desk Surface
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I think everyone must have one place in their house that is always a mess. For me it's this desk in the kitchen. It's always covered with the kids' school paperwork, my binder with to-do stuff, items that need to be returned or put back in the car etc. At one point I bought a nice tote to corral it all. The idea is I can just pick it up and take it to the car when I go out, and have everything I need. It had overflowed. Now if I can only keep it this clean.
10/13 A Blueberry Plant
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Fall is a good time to plant things so they can root over the fall and be ready to grow in Spring. I found my favorite blueberry variety, the Patriot. It was the last one in town and I finally got him into the ground today. I'm excitedly anticipating fresh blueberries next year. We'd missed them.
10/14 Being Done with Mulch
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Really I swear I was planning on helping spread the last 12 cubic yard delivery of mulch we got delivered this weekend. Since I was sick poor Steve did it all himself but he didn't complain. I am SO glad it's done. Well....almost done. Even that makes 32 cubic yards total we haven't even touched the backyard.
A couple weeks ago a reader contacted me asking for an update on Ainsley. I'd just posted about her feeding progress and hit the highlights in that post. That got me thinking though that perhaps it is time for a category by category update. However I want to say, rest assured, if there is anything major going on I do post about it. Since we had an appointment with Ainsley's ENT (airway doc/surgeon) on Tuesday it's a great time to finish this update.
Trach - Ainsley has been wearing a Shiley 4.0 Ped trach since our trip to Cinci in May. I do think the larger size has been better for sleeping. Since the tonsillectomy it seemed her airway was a bit larger. She was still able to wear a cap (which means she is breathing through her nose and mouth) even though the Cinci doctors couldn't understand how she was able to, given her swollen upper airway. At times I offer her a choice between a speaking valve and cap and she will actually chooses the cap. Still I was only having her wear it when she was in water or eating because I was concerned. Even though things seemed better, I've been fooled before and have learned that the only way to know for sure if the swelling is improved is to look. My hope was that removing the tonsils might have alleviating some crowding and would help the swelling.
I didn't get a great look during the scope. They put the endoscopic camera down a nostril pointed downward at the airway and as you can imagine, the reaction you typically get from a child is crying. I tried to hold her still and calm her down. Normally we review the video with the doc afterward but unfortunately this time it didn't get recorded. Luckily they upgraded their equipment and we got a little better view and even without the instant re-play the doctor's impression is that the swelling alone isn't the reason she requires the trach, and that it's actually that the vocal cords don't open as fully as they should. Of course it's hard to say because she is crying during the scope and we know she struggles to breathe when she cries. It would be great if she would stop crying so we could get a look at her airway when she is calm. Despite talking to her about it the day before and explaining why she needed to "not cry and hold still" she didn't. Eventually we will probably be able to bribe her, but she isn't there yet and so we have to take what we can get which is a few seconds glimpse of her airway at it's worst.
After watching her breathe with the cap on he felt we could go back to capping while awake as tolerated. She has been wearing her speaking valve pretty much all day, every day pretty much since last spring. So hopefully her airway is good enough that she can cap comfortably.
The benefits of capping are: 1) a stronger voice 2) increase sense of smell and therefore taste 3) normal humidity to her lungs 4) keep junk from going into her lungs (fibers from clothing, dust and other small particles). So it makes sense to do it as tolerated.
However, there are times that she will struggle and the cap will have to be removed 1) if she's crying 2) if she is coughing 3) if she is exerted 4) if she is sick 5) if she falls asleep.
In the past capping was a bit stressful because I was trying to keep her capped to work toward decannulation (permanent removal of the trach) but if that isn't the goal then the pressure is off and this change won't effect us too much, and if she starts to remove the cap we will simply go back to the speaking valve.
The surgeon did have an interesting idea, which is to Botox her vocal cords, in effect creating an opening between her vocal cords much like a partial cordectomy (which we could do if we felt it was safe and the best option). The risk is that it could increase her risk of aspiration which can cause lung damage. It also might have a negative affect on her voice because the cords would be somewhat apart. Unlike surgery Botox would be temporary, and have to be repeated every 3 months. The good thing is that it is temporary, so if it didn't work well, we could stop doing it. If it worked well, solved the OSA and there was no negative consequence to her lungs then we might decide to move forward with surgery so that she could live a trach-free life which would certainly be nice. I decided that I'd like to push for more progress with eating and consider whether to do the Botox next spring after cold and flu season is over.
Obstructive Sleep Apnea(OSA)- While it is great that Ainsley can wear the cap during the day she still will obstruct while she sleeps. What happens is that she will be okay as she drifts off to sleep but as she get deeper into sleep she relaxes and the obstruction gets worse. At some point she can't breathe well and she wakes up, then she'll doze off and the cycle will repeat. What this means is she really can't sleep unless she's breathing through her trach. In the past we considered decannulation with CPAP, but after trying it (while capped) I decided it just wasn't going to work 1) because she needed a full face mask and that would be near impossible to wear when she has a cold 2) her OSA is severe enough that she can't sleep at all without the CPAP (if decanned) which means no falling asleep unless we have the CPAP machine 4) she isn't emotionally mature enough to understand and cooperate every single night hence it would likely be a huge battle initially.
Illness - Ainsley is remarkably healthy for a child with lots of issues and a trach. Many kids with trachs are frequently seriously ill enough that they end up being hospitalized. So doctors can't believe it when I tell them she hasn't had any pneumonia's or hospitalizations (non-surgical) since she was a baby. Of course she gets ill like any kid , and it is more difficult for us because of the more frequent suctioning needs, including in the middle of the night when she is ill.
Feeding - We've been working hard on oral feeding and you can read all about that in this post here. I have her wear her cap when she eats to increase airflow to the nose and therefore increase taste. With our busy school schedule, for reasons of convenience, Ainsley is being fed Pediasure. It is faster to feed during the morning rush (3 kids in 3 schools leaving at 3 different times) and is easier for the nurses at school during lunch. She also gets an oral snack during snack time, usually something with texture, either applesauce or thick yogurt as well as some form of cracker. The nurses also try to have her eat some lunch orally. Then she has an oral snack after school and she sits at the dinner table with us with a plate of food. All this eating is at her pace and is really still in the category of "recreational".
I do have some exciting news in this area: Since eating the goldfish Ainsley has also eaten (actually swallowed) french fries, beans, chicken, turkey (4 bites of it, thinking like Thanksgiving), cheddar cheese cubes, elephant ear (at the fair), pumpkin cookie, and green grapes (seriously, cut in half, don't worry) skins and all. I always knew if we could break the texture barrier she would eat. She doesn't have the endurance to eat all her meals orally. We will keep working on it.
Chilli & Fritos
Elephant Ears (the sugar is gritty, a previously wayyy rejected texture)
Cheddar Cheese Cubes
Surgery - At this time we have no surgery planned. Ainsley eyelid surgery in June was somewhat of a success. When she chooses to use her sling to lift her eyelids she can get quite a lot of lift. I do feel like the reduction in the length of her eyes was overdone and her eyes seem a little small and pinched. When I see old pictures of her beautiful eyelashes I have a moment when I feel a little stab and want to cry but there is no undoing it so I try to look at the positive, which is that they look better in certain ways. When she is not using the sling/brow for lift her eyelids are still lower than I'd like. The following pictures were taken at the same time and illustrate my point.
Normal relaxed position.
This is fully open and it takes some effort so her eyes don't often look like this.
The hammock play is such good "PT". And FUN!
As you can see she loves it.
We met with the surgeon in August and he felt the lids were lifted as much as he'd intended and that we could still see some improvement. We go back to see him in November and will decide if the lids need to come up a little. It is a minor procedure if they do, so long as it's done in the first year post-surgery. He would simply open the incision at the brow and re-tie the tendon a little higher. I would like him to, but I suspect he won't. She is still having a little discharge from the left eye, the one that was a bit pinched that we asked him to "open up a bit". Unfortunately the lids healed together, so essentially it did nothing.
Walking - We were seeing a PT during the summer and she showed me some more effective stretches which helped her legs to be able to be more straight (they were quite tight from spending a lot of time in casts/braces) which in turn makes it easier to stand (less like a squat). She did a lot of standing in and around the pool (weather permitting) this summer. Here is a little video so you can see.
Ainsley is really pretty strong, the biggest issue is balance. She walks quite well in a walker, though posterior walkers do tend to teach kids to lean on their arms and do little for learning balance. Still, we had it written into her IEP(Individualized Education Plan) that she would use it for all transitions with the exception of when they walk long distances when using the walker would cause her to miss an activity. Her school walker is a bit more compact and she's pretty good at navigating it through the crowded classroom. At home she still finds it more efficient to crawl because it's a lot of very short distances. Although Ainsley stood independently for about 5 seconds during the summer she hasn't been able to do it regularly. Standing balance is the missing piece we are working on. There are a variety of activities we do at home to "work on this".
In addition she RODE A TRIKE! If you missed that post, here is the link with the video.
Speech/AAC - Ainsley's communication hasn't changed much. She does say a few words: mama, all done, down, on, no, yes but it's isn't always clear what she's saying. I suspect there are more words she "says" that we just can't understand. She knows about 30 signs. We are still working with her to use her Nova 7 communication device. She uses it for requests, but hasn't quite made the leap to understand it could be a powerful communication tool for her. We decide to pay to "unlock" the Android features as a birthday gift. I hope that if she can also use it for some fun games (speech related) and apps she will get more interested in using it. Right now it's always around in the TV room. She uses the same type of vocabulary (made by the same company) on an IPad at school. Primarily though she communicates through sign and gestures. I happened to find this old video, taken 2 years ago showing Ainsley doing sign language that I thought was interesting to see.
Fine Motor - Ainsley is able to use scissors quite well, can hold a pencil or crayon and make marks but is still really in the phase of scribbling. She has a good pincer grasp and decent control, but needs to refine her skills. We've realized that she doesn't have a dominant hand and we probably need to choose a "handedness" soon so that she can get more practice using that hand rather than alternating between the two for tasks. I suspect she might be a lefty but there are times she prefers her right. I will be discussing this further with the school OT. She does have enough fine motor dexterity to do this:
Cognitive - It is really difficult to judge cognition when a child can't speak. You can test her receptive vocabulary by asking her to point to pictures. She knows her nouns really well. She's a bit iffy with colors, shapes, letters and numbers sometimes getting them right and sometimes wrong. She is good about following instruction. Clearly she understands a lot. More and more she surprises us with the things she does. Steve and I find ourselves frequently saying to each other "Can you believe she did that?!"
She knows how to turn on the TV and play a DVD.
She recently got out of the car by herself for the first time.
She remembered sitting in the driver's seat a few months before and asked (by pointing) to do it again.
She climbed up by herself.
Asked about the controls.
And put up the handicap parking pass!!! Wow! I don't know how she knew where to find that. It's like she's really been watching closely, and wants to drive. Scary.
School - Ainsley started full day Kindergarten in a special eduction classroom this September. Some days she is pretty tired, but over all it's been really good for her. I really like her teacher. She seems quite enthusiastic and motivated to make a difference in children's lives. She hasn't yet started spending time in the general education classroom, but she should be soon.
All in all Ainsley is inching right along through the inchstones. At the same time she is hitting some bit milestones, like swallowing solid food and riding a trike. She lives a very happy life. She is very loved. She will be turning six next Thursday. It seems that for all we went through early on in her life, she is at a fairly stable point right now. I don't imagine any major changes anytime soon, but know that she will continue to make progress and we will delight in her every accomplishment.
Seriously 2012 is going by fast. I can't believe I am 40 weeks into this project with just 12 weeks to go. I don't know about you but I wish life would slow down a little bit! This week we had early release for parent teacher conferences as well as no school Friday. I'm happy that it's October. The first weekend in October is always the Issaquah Salmon Days Festival, to celebrate the return of the salmon to the creek. I've gone to this festival every year since I met Steve, rain or shine, for 20 years. Usually it rains but this year the weather was actually nicer than many of the days this summer. I love how Issaquah is nestled in the valley surrounded by mountains and trees. On a fall day it is breathtaking. I was struck by how old the kids are getting. Particularly because Evie is on the verge of becoming a young woman. It feels like yesterday she was my baby. We had a fabulous time and I hope I'll have a chance to blog about it this week (with pictures): hamster balls, yummy food, kittens, monkey seeds, salmon, alpacas, music and dancing.
Tomorrow Ainsley has an appointment with the ENT doc. He will do a nasoendoscopy (camera scope down the nose) and with any luck (Ainsley needs to hold still) we will get to see her airway. I am excited to know if there are any changes to her airway since her tonsillectomy and adenoidectomy in July. You really just can't tell by external observation. We've been fooled many times in the past. I started a general update post for the blog, so perhaps I'll have that finished later this week, and will include what info there is from the appointment. Ainsley's been eating some new foods this past week, and I'm excited to share that.
I hope you have a good week and are enjoying your October!
Daily Happiness Photos - Week 40
10/01 Fall at the Farms
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We live near a valley at the edge of Woodinville and Redmond that has a lot of farms like the Root Connection or Dr. Maze's Farm . Every time I drive through this area I think how beautiful it is and how nice it is to see land instead of more housing developments and shops but it is especially beautiful in the fall and I had to stop to get a close up shot of the pumpkins and sunflowers.
10/02 A Learning Opportunity
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I love an opportunity to teach my kids a lesson through natural consequences. Today was the day that The Mark of Athena came out and Evie REALLY wanted the book. She'd been talking about it for months and I encouraged her to save her money for it, which she did. Since it was Tuesday Adrian had soccer practice and Evie had ballet. If she wanted the book she would have to get all her homework done by 6:30 (normally she works on it until nearly bed time, middle school, with 6 classes, is tough) because otherwise there wouldn't be time to go to the book store since ballet lets out at 8:00. She DID it (and now I know she really CAN if she doesn't dawdle) and Steve took her to buy it. She read 100 pages in the first day.
10/03 Fruit Bowl
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I don't know what made me happier: finally getting a piece of Portuguese Majolica after loving but not owning any for yearrrs, finding the perfect fruit bowl for only $10, being able to check "find fruit bowl" off the to-do list, having a place to keep fruit in the kitchen (hopefully this will lead to more eating of fruit), having a little color to break up the black counter top, or the cute face the fruit in the bowl made.
10/04 Real Mail
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In our increasingly digital age it is becoming quite a rare day indeed that you open your mail box to find...real mail..not bills and junk mail but a beautiful card sent out of the blue by a friend just to say hello. The written word on real paper is a treasure. E-mail and texts, they just aren't the same are they?! I love the sentiment of this card so much I think I might frame it.
10/05 Ainsley Putting on a DVD By Herself
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Wow! Seriously Ainsley played this DVD all by herself. I was really impressed that she was able to do that. I had told her no because I needed quiet in the TV room (where the computer also is) but it's pretty hard to be mad when she was able to do something like this all by herself. It is a challenge when you can't talk to your child about such things. She's at the age or stage to question me, but she can't. It makes me happy that she's showing a little moxie.
10/06 Fair Food
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My favorite fair foods: corn on the cob, elephant ears with cinnamon and sugar and fresh cut curly fries. This weekend we got all three. Yum!
10/07 Dancing
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I love to dance. I love music. In high school it was typical that I was out at the dance clubs 3 nights a week (as you can imagine my grades suffered). I love to dance with my kids at every opportunity. Even Ainsley likes to dance even though she can't stand. We don't let that stop us. Grandpa got in on the action with Ainsley. He likes to dance too. I think she made a lot of people smile this weekend. If you look real close you can see Steve in front of the mixing board.
I was hoping to show you a lovely photo of my frames all filled up with beautiful pictures of my smiling family. Sadly, that's not gonna happen. The frames are up on the walls but I'll be lucky if they are filled by Christmas at this rate. The rainy weather is coming, I swear, and maybe that will feel like a better time to be stuck on the computer for hours and hours. Right now we are trying to get stuff done to the yard to prepare for winter. I already told you about that so I won't go into it again.
We are definitely in the school grind with homework, soccer and paperwork galore. The kids are doing well. In case you missed it, check out this video of Ainsley riding a trike at school! I think this year we feel a little less "out of place" in Redmond. It's a nice place to live. There are trees and green everywhere and the leaves are changing color and are about to fall. There are a number of farms nearby. I hope to make it to one of the pumpkin patches with the kids but couldn't resist buying a $2.99 pumpkin from Trader Joe's to set next to the front door to welcome October.
October is my absolute favorite month of the year. That's why we picked it to get married. It'll be 16 years on the 19th. Ainsley turns 6. Steve will be mixing sound at the annual Salmon Days Festival for the last time, after31 years 29th year(he was just a teen). And of course there's Halloween. It'll be busy but fun.
I hope you have a fantastic week whatever you have going on in your life.
Daily Happiness Photos - Week 39
9/24 Mulch Day
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We had 20 cubic yards of mulch delivered to the house for the gardeners to spread. They finished all but 2 yards that Steve spread this weekend. I'm hoping this cuts down on the massive amount of weeds and yardwork. Please, pllllllease let it work!
09/25 Found Rocks
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There are parts of my yard that are lined with rock. It's an interesting detail of the landscaping that I rather like. I was considering getting more but wanted it to match. Plus I didn't really want to pay for it. So I was very happy to find that there were already rocks there, probably buried the last time the yard was mulched. All I had to do is dig them out and put them back on top, though it took quite a lot of time that I'd have rather been doing something else I was very please that it's done.
09/26 Adrian Making Up Pokemon
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Adrian's a smart kid. He's memorized so much information about Pokemon; their traits, evolsions, powers, attacks, health points....and there are hundreds of the things. Now he's making up his own and they are pretty cute. I love that he's excited about this and working hard at it. It's so fun when he comes and shows me a new creation.
09/27 Tucking the Kids Into Bed
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I love tucking the kids in at bedtime and our special way of saying goodnight. Evie's always hated to go to bed. I used to have to climb into bed with her. Thankfully she eventually she outgrew it but on a tough day I will still do that sometimes until she falls asleep. We learned of the tragic death of a child in the community today. It's SO sad. Our hearts go out to the family. We gave our kids lots of extra doses of love today.
09/28 Terracotta Pot
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When Steve and I were on our honeymoon (in Spain and Portugal) we had the best chicken paprika baked in a clay pot by a sweet lady who was friends with the Englishman who ran the Pensione in Salema Portugal. It was a meal I won't ever forget. After a little research (I'll spare you the backstory) I found this beautiful Italian roaster at TJ Maxx, for a fraction of the cost that it's sold through this website, Bram, in case you want to know more about clay pot cooking. I'm saving it for a Christmas present to myself but it's going to be really hard to wait to use it.
09/29 Sling Shot
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I made Adrian this slingshot with the suede from my old gardening glove. It seems only proper that a boy ought to have one. Hopefully he doesn't break a window.
09/30 Getting Rid of Kid Junk
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Adrian has a captain's bed. That means he has tons of drawers filled with more bits and bobs than you can imagine. Because he can always quickly shove things in the drawers to "clean his room". Who was the idiot that gave him hundreds of rubber bands, marbles, magnets and let him use his allowance and birthday money to buy gobs of trading cards? Oh yeah, that was ME! It took the entire day but we got him organized. And we brought out 2 bags of trash and recycling too. Now he has space in his drawers again and we found lots of things that were "missing". All that makes me happy and I hope I won't have to do it again for YEARS. I just have to ask where the heck do all the Pixie Sticks come from?!
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!!!
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
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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
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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
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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
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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
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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
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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
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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.
Ainsley is now seventeen years old! She is one of a kind and has navigated this world in her own special way. She's been through more than most people ever will in their entire life but that doesn't get her down. If she likes you she just might flash you a smile that will melt your heart.
I am Ainsley's mom and the author of this blog. I am also mom to Ainsley's big sister Evie and brother Adrian. Normal life seemed busy and challenging enough before Ainsley came around in 2006. Managing the care of a medically complex special needs child is something I never imaged yet together as a family somehow we do and life is good.
Ainsley's blog was created in March 2008 in preparation for a medical trip to Cincinnati, OH. At that time it was a great way to help friends and families stay up to date on happenings. In addition it has served as a sort of diary of our experiences. There are many times that I refer back to it for information or dates of a surgery or procedure, and am reminded of forgotten details about something that happened. I've posted less in recent years and wish I had posts for some important experiences.
Over the years I've had parents contact me to say that the blog has been helpful to them in one way or another and that meant a lot to me. Like me, many parents of medically complex kids are looking for information on how best to help their child, especially in the early years. Sharing our stories helps. Although blogs are less popular these days I still find it useful. If you still enjoy blog posts I'd love it if you'd leave a comment and let me know.
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