If you are anything like me the thing you dread most about birthdays is getting the kids to write thank you cards afterward. I admit some years despite the best intentions I haven't done it and I feel terrible. I usually like to send along a picture so this year I printed the card to keep the writing to a minimum (though Evie did address all the envelopes).
03/13 Safe Spinning
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I can't say enough about the hammock chair that I bought for Ainsley's birthday! The only bad thing is that it's so fun the kids fight over who gets to sit in it. Including Ainsley which is great because she uses it a LOT. She likes to spin in it and one day when her nurse was caring for her she spun so much that the eye bolt unscrewed from the ceiling and it fell on her. But even that didn't stop her from getting back in it the same day. I knew I had to order a piece of hardware that would allow it to spin freely. It came today and it works SO well it's worth every penny and the fact that it makes it safe is a bonus. This rotational device is made for therapy centers and you can buy one here. Let the spinning fun begin!
03/14 Nachos & Movie Mid-Week
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We were tired and decided to have nachos for dinner with a movie. It was nice. Except that the movie, The Grave of the Fireflies, was a bit of a downer so there was a lot of whining that it was too sad to watch. It's a story about two Japanese children during World War II. But what can I say, I think it's good for my kids to see just how lucky they are. In the US most of us are fortunate our only food dilemma is figuring out what to make for dinner not worry that we won't actually have food, and few of us have gone for an extended period of time without food. I read recently that if you live in the US, that you are automatically in the richest 6% of the world's population. Millions of children have suffered without enough food to eat or have lived through war.
03/15 Free Special Socks
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With AFO's you need comfortable knee-high socks. Because of the pressure you really don't want cable knit or anything like that with pattern or seams. They gave us a single pair when Ainsley got her AFO's last week, which were fantastic. I called the ortho department for another reason and they offered to send me more socks, free of charge, which arrived today. I am so grateful! In case you want to know, they are Smart Knit AFO socks by Knit-Rite.
03/16 Coffee
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OMG I can't say enough about how I love coffee. I have to drink a half a cup in bed before I can move in the morning. I think I need more than average amounts of sleep but often get less than 8. Last night I was up until 2am posting a blog update. I'd been feeling a little guilty that all my posts for 2012 have been for my Happiness Photo Project. I'm actually posting more than I normally would but I know it's not the same even if Ainsley is featured many of the days. It's hard for me to have enough time for everything so sacrificing sleep isn't uncommon. By the time the afternoon came around I was dragging so Steve made a pot. The thing about the Happiness Photo Project was that I hoped it would force inspire me to do some creative photography. Not every day, but some of the days. I had no idea how hard it is to capture steam. Tip #1 you need a dark background (white on white disappears), #2 the more visible the steam the easier it is so perhaps a cold room would help because of the temperature difference. You can see the steam in the reflection of the coffee but that wasn't what I was going for but I didn't care enough to relocate my shot. After all I was running on fumes. But at least I learned something even if I didn't get that perfect mug of coffee shot.
03/17 Winning
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I'm not too competitive of a person and so sports aren't really my thing. I have enrolled my kids in team sports for all the other good things it teaches like how to be a good team player, to be good at something you need to work at it, all you can really do in life is try your best, and how to loose gracefully. Even so losing eventually gets old. I was super happy for Adrian's team that they finally won a game, that's the way to finish off a season!
03/18 Graduating a Level with Ainsley's Walker
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Ainsley was 2 when we ordered her first walker. Seriously. We were at the birth-to-three center. Even then she was tall. I did my research and we ordered the next size up and I'm so glad we did so I don't have to fight insurance to get approval for a new one. She had arm troughs and a sling that kept her safe. But she has graduated to the next level and can use a walker without that additional support (though it will take practice before I'll call it safe). We had all the parts to convert her Nurmi Neo and I've just been waiting for Steve to have the time. Today he made time. Yay! I wish she loved it. I think she's a little scared. Normally she'd have shoes on which helps. But really I think it's more about change. Ainsley has a touch of OCD and I don't think she likes us messing with her walker just because....it's different. I love that she's licking the snot off her upper lip (from crying). Love the shirt? I'm 1/4 (+ a bit) Irish.
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I don't know what you have planned for your week but I hope it's a good one. Me? I'm reorganizing the kids closets and toys, having my teeth Zoom whitened (for free), Evie starts ballet at a new studio, and I'm hoping to do a bunch of photo editing, ie. deleting bad photos so I can find the good ones. Since orthopedics didn't call me back I'll be following up with them and calling PT since our referral should be in. I also need to get new glasses and a haircut (we'll see about those). To view a slideshow of the entire Happiness Photo Project click here. For more about what this is all about click here.
And then some. Life has been busy and in my Happiness Photo Project posts I've alluded to there being a lot coming up with Ainsley.
There is a LOT that goes into having a "medically complex" kid. A lot of it happens behind the scenes and even our family and closest friends are unaware of what is involved. Honestly I think even my husband is, since I handle a lot during the days while he's at work. In addition to regular care of a child there are the additional demands. Everything takes extra time. Dressing, diapering, toileting, and positioning. Things that a child normal does herself. Then there is the medical stuff: tube feeding, suctioning, cleaning the stomas, ordering and stocking and cleaning medical supplies and equipment. Beyond that there is the "therapy" ie. working on eating, speaking, Ainsley's communication device, stretching her legs(from her hip surgery), standing, walking, fine motor (drawing, cutting, picking up little things) and then there are her educational needs because really she needs additional help to learn the alphabet, colors, shapes, numbers, animals.....well everything really. Her schooling requires an IEP and a fair amount of coordination and she receives PT, OT and Speech therapies through them. And lastly there is medical planning and scheduling. This is huge and can take a LOT of time. Researching conditions, treatment options, finding products and services that help and then eventually scheduling and coordinating those appointments and surgeries. When I say it it is a full time job I'm not kidding. It's that and then some.
So here is a little (okay big) update with what's been going on. Ready?! Set. Go.
School
Ainsley will be in Kindergarten next year. Since she's been in preschool at the local school since she was 3 I don't expect this to be a difficult transition. We met with her teacher on 3/5 to discuss it. The school district hasn't made assignments yet because they may be opening a new school and that would affect assignments throughout the district. However we expect that Ainsley will continue at the same school she is currently at. She will be in a "learning center" classroom, which is smaller in size to accommodate kids with special educational requirements and she will try to do some hours in the typical classroom.
Feeding
I'm not sure how often I've talked about it on Ainsley's blog but she has difficulty safely swallowing large volumes, ie. she gets tired after so much swallowing(the amount varies from day to day). Just as the rest of her muscles get tired from low tone and her cerebellum issues, so do her swallowing muscles. And when she gets tired she could accidentally get food into her airway which would be very bad for her lungs. Regardless, we've worked really hard on self-feeding and it shows. She requests (with sign language) to drink her formula orally even if it is only a little. She also mouths table foods every night at dinner. Although she started OT when she was a baby and I continued the techniques I learned 4 years ago she is stuck at the same place. She is less interested in puree and won't eat any puree with any texture in it so bridging the gap between smooth purees and actually swallowing table food is where we are stuck. Every time I add small amounts of texture she will do okay until I reach a certain point that is "too much" and she rejects it. We need help.
A frustrating aspect of having a medically complex kid is that everything is related and is a process that takes time. I'd planned to request a referral to a feeding therapist at her cranio-facial clinic appointment. The soonest appointment was over 2 months away in December. Then December came and she got sick with RSV and the appointments all had to be rescheduled. Then it was February before we could get in and after the appointment we had to wait for a referral. Then we had to wait for an opening. So although I started the process in the fall it will be spring before she actually sees the therapist. 3/28 to be specific. Let's hope nothing happens and that the therapist has good ideas to help Ainsley. It is not uncommon for children with trachs to have difficulty eating. Normally our physiology doesn't allow breathing and eating at the same time, but having a tracheostomy does and increases the risk of aspiration. Plus she may have diminished taste and oral sensation due to the lack of airflow through the palate. Having a cerebellum malformation in addition to a tracheostomy makes it just that much harder. Many kids develop an oral aversion but luckily Ainsley wants to eat, so that should help. I'd love to get her into an intensive feeding program but I'm not sure they will allow that. And with her high caloric needs it's unlikely that she'll be 100% tube free anytime soon. But we shall see.
Communication Device
We started using PECS cards and sign language with Ainsley when she was under 2. She then graduated to more and more complex communication devices over the years. I have compared the options and even went through an evaluation at the hospital last year just weeks after Ainsley's eyelid surgery. The timing was bad so I decided to put off the decision. Usually insurance will only pay for one device every 5 years so it's a big decision and you really want to get the right thing. The device they need at age 4 could be very different from what they need at age 7.
When we moved into the Lake Washington school district we lost the Vantage and it was agreed that we would try an IPad with communication software on it, provided by the school. It requires a lighter touch and different skills we wanted to see how she would do. After "playing" with it for nearly 6 months she has progressed a lot. She can even swipe to scroll through pages. She manages to change the wallpaper, move icons around the desktop and even get onto YouTube (scary!).
It's amazing to look back. There was actually a day when part of my "therapy homework" was to working on teaching her to point and it was really slow progress. It was too hard for her to keep her arm steady, she couldn't keep the other fingers out of the way and it was hard for her to guide her hand to the precise location.
Last year I started the process to get a re-evaluation. This too requires a referral in the system, copies of her IEP and speech evaluations, signed forms, completion of a lengthy questionnaire etc. I'd heard about a new communication device that would be coming out at the end of the year called the Nova 7. My fingers were crossed that this was the "one" and it was. Things I like about it: better pronunciation of basic words, handle and neck strap for portability, a sturdy stand(IPad doesn't have this), a built in amplifier for use in loud rooms, touch screen technology(with Gorilla glass for durability), a rubberized case in case she drops it, a child's voice(nice to have for a child so Ainsley doesn't sound like an adult with a British and Bostonian accent who doesn't know English very well), software to allow programming on the PC (instead of just the device), and continuity of use (the Nova 7 can use the same screen layout as her current AAC).
Paperwork was submitted this week and we are waiting for funding authorization to come through. Here are some pictures and video of her with the new device. We're also waiting on a referral for a speech therapist to work on vocalizing. I haven't given up on that yet.
A close up.
You can see she loved it. It comes with a stylus too, a nice feature until you lose it.
It uses the Android platform. Here it is next to the IPad so you can compare size. I asked her and she said she likes the Nova 7 better.
AFOs
I decided to get AFO's for Ainsley. She'd had a pair of soft AFO's. Not custom but the same idea. They really didn't make much difference for her and I was afraid that her ankles would become weak in the braces. She wore them at school every day until she outgrew them. We used DAFO Pollywog inserts for the past year or so. They helped keep her foot in a decent position but even after the leg plate removal more than a year ago and the progress she made initially she is no closer to standing or walking. The way I see it, it's worth trying them. Though it was a very traumatizing (it shouldn't be but it was). She started to get upset when he wet the plaster and then became really upset when he went to cut them off. Here's the process for those who would like to see:
1. Take off shoes and socks (Note still happy.)
2. Add stocking and making marks with Sharpie for ankle bones. Note tube inserted into stocking.
3. Pick out brace material. Fun. Ainsley chose butterflies.
4. Wrap legs with plaster coated gauze.
5. Add water and make gooey plaster. Things start to go bad.
6. Put foot into ideal position and hold until firm.
7. Cut cast off. Tube protects skin from being cut.
8. The orthotist inspects the cast
9. Ainsley signs "all done". Sadly we were not done and when he started the wrap a second time she lost it and then when he had to re-do it she came unhinged.
10. After a week or so the braces arrive and are fitted to the patient. She remembered him and started to cry again even though we explained there would be no casting, though it wasn't quite as bad as the casting day.
Here she is at home wearing them. Luckily I had some hand-me-down Keen's that worked. Then we worked up to wearing them an hour at a time. She wears them to school but signs "off" the second she gets home. Her pleading little face is hard to resist. They make it hard for her to get up and down from crawling and her gait is a little odd still. I hope it gets better. We need more time before I commit to an opinion.
Walking/Walker
Check out this video of Ainsley cruising (with support) the biggest obstacle for her is standing balance. In February we met the new orthopedic doctor for routine follow-up. Ainsley's x-rays look good and although she will still need an x-ray every 6 months, it is unlikely that any further surgery will be needed. Her hips have pretty good coverage over the femur and the donor bone appears absorbed. The legs look good where the plates were removed. The reason she isn't walking isn't really her hips, but having hip dysplasia really didn't help any. Plus she's spent so much of her life unable to move. Now days she's been rockin' the hammock and it is helping her a lot. She can now get in by herself sometimes. It's been really fun for her and that is good because it motivates her to be in a semi-standing position and her legs are now quite strong. She also uses a walker at school every day and weather permitting, in our driveway. She does some walking in the house every day, holding our hands. It's on Steve's to-do list to remove her arm troughs and add the hand grips to her walker. I'm going to make bumpers for it so we don't have to worry about the walls and furniture. Stay tuned for pictures. I doubt she'll use it much on her own (likely she'll prefer to crawl) but at least we can use it for PT during the rainy season.
Climbing
Ainsley has gotten pretty good at climbing. At the doctor recently she climbed in and out of the wheelchair completely by herself. She can also get in and out of a chair at the dining table. And on and off a bed or couch. It's great to see her be able to be a bit more independent.
Kisses
Oh my gosh is she going through a phase. I like to give my kids lots of hugs and kisses and she's learned that I like kisses (there was a time when she couldn't do it so we made a big deal when she did) so lately she uses kisses to try to get what she wants. She comes over to the computer and kisses me over and over asks, with sign language, for a DVD. It works. And now she's kissing me all the time and you can even hear her kiss. That's good for her lips. I hate that I have to think that way but after years of working with Ainsley just to try to make an "O" sound I'm rather desperate for some progress. I want her to at least learn to say a verbal yes and no. One day I'll be sorry when she learns the word no, but I know that. For now we're using a combination of things. Vocalization, sign language, body language word approximations, and the IPad. Here is an example of how she communicates with her AAC device.
Cincinnati
I've been planning on taking Ainsley to Cincinnati to get a second opinion in the Spring after cold and flu season. They have a top rated airway team and some advanced testing. The fact is Dr. Cotton probably sees more complex pediatric airways than anyone else in the world. Our surgeon has been on the fence about a cricoid split since Ainsley was a baby. We've been encouraged to wait and see if growth helps her, and every year we're asked to wait longer. I've suspected all along that she'd end up needing an airway surgery. But if Dr. Cotton tells us he isn't confident that surgery would help then we can lay it to rest. We hope Ainsley won't need the trach for the rest of her life but if she does so be it. If he thinks surgery is a good idea then we'd probably be hoping to get it scheduled over the summer.
We got a date today and we will be there from 5/21-23. I am hoping to meet up with some of the moms from my pediatric trach group while we are there. My sister Sheryl has agreed to come with me. Hooray!
Eyes
As you probably remember, I was very disappointed with the result of Ainsley's eyelid surgery in December 2010. I had hoped that the appearance of her eyes at birth could be restored to her. The surgeon did what he felt had to be done. I won't go into it in detail again, the whole thing is rather complex. But before Ainsley's second cranio-facial surgery when she was 9 months old her eyes were far more open and straight. In fact they didn't close at night and we had to put ointment in them to keep them from drying out. Now we have the reverse problem, they are too closed.
I have struggled to understand what went wrong, and the doctors weren't sure. But after giving it countless hours of thought I think it comes down to that her eyelid function was poor at birth but the excess bone from the sagittal craniosynostosis helped lift the lid and so her eyes appeared much more normal. When the bone was removed/reshaped it created droopiness.
We've been considering a frontalis sling operation since she was a baby. She needed to be 4-5 years old and now she is. We also needed her lids to be in their final position. Both the brow implants and the tarsal switch surgery each elevated her lids a few mm's. The brow implants also give the occuloplastic surgeon a solid surface to work with because the bone was thin.
What they do is attach some material (could be synthetic or tendon from her leg) to the muscle in the lid and the forehead muscle. It helps elevate the lid(s) and compensates for the abnormal muscle tissue (which combined with the cranio-facial surgery is the reason Ainsley's lids are so droopy. The surgeon will have to be careful not to lift them too high or she might not be able to close them. Luckily this is a surgery that can be undone or adjusted if needed.
We've recently thought perhaps we should go back to the surgeon who did the tarsal switch because he's been "in there" before and knows her anatomy. Plus we would like him to open up the left eye by a mm in the corner. Also he does cosmetic work so he will have a slightly different approach than the other occuloplastic surgeon who deals more with kids who have complex vision issues. We will at least meet with him and see. Our appointment is 4/3. Our goal would be to have the surgery some time this summer.
I know that her eyes will never be the same but I do hope this helps for so many reasons. I miss being able to see in her eyes like here. My friend Christy said to me that that alone is enough of a reason to do the surgery. I'd like to think she is right. For those who don't remember here is what they looked like before. This was her normal eye position but she could use her forehead muscle (the way the sling will work) to lift them fully open which she did a lot of the day (before the surgery). They are so dark and beautiful. I can't explain how hard it is to feel you can't see into your childs' eyes.
Physical Therapy
I also asked the craniofacial Ped for a referral for physical therapy. I would like to work with someone who can teach Ainsley how to fall. I think that if she wasn't afraid to fall she would take more risks to try standing which really is a precursor to walking. Nearly every day I stand her up and hold her gently at the hips and try to see if she can stay in position if I let go. She only needs the tiniest bit of a touch. I remember her physical therapist, Gay, doing that with her when she was 2. She was able to do the same thing then. I don't know what it's going to take for her to learn to balance on her feet. Ainsley receives PT through the school but it's just not enough.
We've had great success with the hammock. Ainsley hangs in it for hours every day and that is great for leg strengthening because she is somewhat standing in it, (with the support of the hammock under her arms). She also loves to sit in it and swing. That is great for the vestibular system (helps with balance). I've got the supplies to make a bouncer which I hope will get her in a better more upright standing position.
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So we're gearing up big time. Hopefully there will be good news to share in some of these areas in 2012. Thanks for reading.
What a relief it is. No party. No musical. No special project. But. The thing about life is it's always changing. Now we are heading into baseball season. Again. And Evie wants to play volleyball. We'll see. And Ainsley has a bunch of medical stuff coming up. And I have to catch up on laundry, yard work, cleaning (you don't want to know how many months it's been since I mopped my floors) and March is my month to focus on photography, and the month is nearly half over. Last week I bought a new photo management software AcdSeePro 5 (I was super happy that instead of $239 it was on sale for $99!). My old software had some sort of problem and stopped working. The new software makes fast(er) work of viewing/editing/organizing. I like fast! I've got the party photos edited and will be working on a new blog, maybe later this week.
It's a good thing my new philosophy is to try to take what happiness I can among the craziness because if I was waiting for things to calm down that day would never come.
What Made Me Happy - Week 10
03/05 Family Dinner
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It was so great to have nothing going on tonight but family dinner. I love that my kids love spaghetti and meatballs because it's so easy that dad can make it. And I love the nights when they are happy about "what's for dinner".
03/06 A Stash of Kids Shoes
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Ainsley got her new AFOs today. She has a hate, hate relationship with them. Let's hope they start helping so she'll be willing to wear them. If you are lucky enough not to have a child that needs AFOs then you should know that they are very bulky and it's hard to find a good pair of shoes that they'll fit into and the insoles need to be removable. Boy was I happy when I pulled out my stash of outgrown kids shoes from BB&BS and found the perfect pair of Keens no shopping required!
03/07 Paperless EOBs
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I get a LOT of EOBs (Explanation of Benefits) from our insurance company. I was so excited that I finally signed up for paperless EOBs! But alas a couple days later my first e-mail came and instead of the actual EOB it included a link to where I could go to log in and download the electronic EOB. Dummies! That's a bunch of extra steps that I don't have time for. So back to paper EOBs it is. Though if you don't want to see your EOBs then it might work for you.
03/08 Bottle Project Finished/Glasses Found
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It's a tie so I kind of cheated with today's picture. I was SO happy to be done with the party that I was very UNhappy when I learned that Evie had a special project, a bottle doll inspired by a biography, that was due Friday. These type of school projects require a lot of parental help. Thankfully a friend called and we commiserated about the project. She sent us some supplies so I didn't have to make a special trip to buy "hair" and her wooden arms were handy(no pun intended). In the end it turned out very cute. Guess who her famous figure is. I'll tell you at the end. The same day Evie had her at school performance of Seussical and while I was there I checked in with the office. They HAD Evie's glasses that she'd lost weeks prior. She insisted that they were at home not school (she'd even checked the lost and found) and I was just about to order a new pair. Woohoo!
03/09 Seussical Finished
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Now I'm feeling kind of bad for feeling this way (I guess the fact that I'm happiest when stuff is over means I need to cut back) but the truth is I was really happy that the musical is over. It was a big production and took a lot of time. At the end Evie had rehearsal almost every night and it made the homework crunch that much harder. Plus you can only listen to so much Dr. Seuss music. But I really amreally grateful that Evie had this opportunity. So many parents worked really hard to make it possible. A huge thanks to my neighbors for giving Evie a ride home many nights!
03/10 Popcorn
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For some odd reason we haven't had popcorn with our Friday night movie in ages (well I had two weeks when the dentist didn't allow me to eat popcorn so that's partly it.). I LOVE popcorn. It's probably my favorite food. Today I made a big double batch of popcorn in our movie theater style popper and it made me SO happy to sit down as a family and watch a movie together. Puss N Boots. It was pretty good. But really it's all about the popcorn for me.
03/11 Pancakes
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We were working on communication at "breakfast." I pushed the buttons for "I want" "to eat" "breakfast" and before I even asked her she saw she had pancakes and pushed the button for pancakes. I was so impressed! She is really improving with her AAC device. Some days it feels like the inchstones are so small we'll never make it to milestones but an inch is an inch.
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The bottle doll is Anne Frank. Did you guess right? Have a great week! To view a slideshow of the entire Happiness Photo Project click here. For more about what this is all about click here.
This week was entirely consumed with wrapping up details for Evie's Percy Jackson party. So sorry about that but it is what it is.
What Made Me Happy - Week 9
02/27 Bologna
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Poor Adrian has been asking for Bologna for months but they don't sell it at the grocery store I normally shop at (Trader Joe's). I finally remembered to get him his Bologna and he was so happy. And that made me happy. I was starting to feel like a bad mom.
02/28 Working Together
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We cranked up the music and worked as a family on the party. Working together makes it feel less like work and more like fun.
02/29 Finished With Snakes
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I am SO happy that I'm finished making snakes for my Medusa! And I was happy that I figured out a way to keep them from sagging while they dried.
03/01 Wine with Snakes
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This was a toss-up. Finishing painting my Medusa head made me very happy but so did the wine I drank while doing it because this project is a lot of work!
03/02 Finishing Medusa
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It made me SO happy to be done with this pinata. But alas, shortly afterward the head fell to the ground. So this fantastic happiness was short-lived. Thankfully a cardboard neck brace and some re-engineering fixed things up.
03/03 Happy Party Guests
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After all the work that went into this party it made me so happy that the kids had such a great time!
03/04 Kids Running Wild in the Woods
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The kids decided to play capture the flag "Percy Jackson style". They had so much fun running around with their swords trying to capture the other team's flag. These days kids don't get a lot of opportunities for this kind of play. Our yard worked great for this activity and all the hidden areas and trees made it feel "real". Of course I also loved that my daughter was having such a fantastic ending to a fantastic party. I was also a little bit happy that the whole thing was over. It is sad for her though so it is bittersweet.
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We had a Kindergarten meeting today, an AAC evaluation and ortho fitting tomorrow and are also scheduling our trip to Cincinnati. Evie's school musical is this week. It's going to be a busy week but I hope to have time to go through the party photos. Have a great week! To view a slideshow of the entire Happiness Photo Project click here. For more about what this is all about click here.
Happy Monday! I can't believe it's Monday again! I've been very busy with party planning but we're on the home stretch. Hopefully I survive. The fact that I'm doing this again proves that I'm crazy....just in case you ever doubted it.
What Made Me Happy - Week 8
02/20 Ainsley Put on Her Own Coat
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When you have a differently abled child it really is the small things that make you happy. Today I was in the kitchen and looked over to see Ainsley in her coat. Well actually it was Evie's coat that I pulled out of the garage and was going to wash. Ainsley decided she wanted to wear it and put it on all by herself. HUGE this is! I think this is the first time she has ever put on an article of clothing by herself, other than a hat (which is nearly too easy to count) or a pair of my underwear on her head. You know what I mean....appropriate and correctly placed clothing.
02/21 Soup
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I LOVE soup. I'm pretty good at cobbling together soups out of ingredients on hand (though this time I planned ahead). But for some reason I haven't been making a lot of soups lately. It was a blustery day and having a bean and vegetable soup and a crusty loaf of bread was perfect.
02/22 Curiosity
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Curiosity keeps us young and I love it for that reason. But I also love it that Ainsley is curious. That she notices when things are different, like in this case with paper shaped like a person oddly placed in our laundry room, and "asks" me "What's up with that?!" Of course she had to use her eyes and body language but I got the message loud and clear.
02/23 Being Able to Chaperone
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I am very lucky to be a stay at home mom. I worked for the first year and a half that I was a mom but felt I was missing out so I left. Of course it's not all roses, being a SAHM is hard work, but it does give me the opportunity to do things like chaperone a field trip. In this case to the State Capitol Building with Evie. Of course there is one little issue......Thanks Sheryl for coming to watch Ainsley!
02/24 Learning Something New
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I'd heard of Sculpey, yes I had. I just had never worked with it. Nor have I ever tried to make beads. It is much harder that you would think to retain the shape and make the hole. But I am always up for a challenge and like to learn new things. After a lot of practice I figured out a technique. More about these beads later.
02/25 Artistic Ability
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I am proud that my father is a painter. I have some ability to paint. And Evie loves to paint. I am very proud of her and it makes me very happy that something so cool "runs in the family".
02/26 The Sound of a Recorder
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Hold on, hold on. Let me explain this one. I don't know if every grade school makes playing the recorder part of their curriculum but here in Washington they seem to. Evie learned to play the recorder at the old school and now it's Adrian's turn to learn. He has been so cute practicing "Hot Cross Buns" all the time. Ainsley is a little monkey. Monkey see, monkey do...you know? She found another recorder in the musical instruments and pulled it out. She actually was able to make a sound. We've tried all types of whistles as "therapy" with no success, with the trach she just hasn't been able to blow but today she DID! So this is one time when I LOVED the sound of a recorder and it made me very happy.
It's funny. Some days I get so excited when it's time for Adrian to come home on the school bus, the doorbell rings and I open the door to this adorable kid. He always says "Hi Mommy." and gives me a hug. How lucky am I?!
02/14 Chinese Food on Valentine's Day
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Steve brought home Chinese food (my favorite) for Valentine's Day and we had a nice meal together as a family. It was so cute to see the kids trying to eat with chopsticks. Even Ainsley. She loves soy sauce and had a great time tasting Chinese. Then she put some of her chocolates in her mouth. It was great. Adrian's box of chocolates said "Love Stinks" and had a picture of a skunk which he got a real kick out of. Earlier in the day I had an appointment with an ENT. This time for me, not Ainsley. My ears check out fine, my hearing is good, there is no pressure in the eustachian tubes. All this is good....except then we don't have a reason for the constant dizziness that I've had for nearly 2 months. The doctor did determine that apparently I have a deviated septum and since I have a lot of sinus headaches he is sending me in for a CT of my sinuses on Tuesday.
02/15 Hallway Bowling
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My Happiness Project "area of focus" for the month of February is organization. Just like "you can never be too thin" I think "you can never be too organized". My house looks pretty organized at first glance but there is always room for improvement, especially in the hidden areas like the cupboards. Since we moved in I found places for the kids' toys but I've been feeling it wasn't "working". The days have a way of going by rather quickly without me making as much progress as I'd like on my monthly goals, so I was glad to get some organizing to the garage and laundry room toy shelves done. As a result I found the foam bowling set and the missing 10th pin. It made me happy to see the kids having fun bowling in the hallway both because it was fun but also it is something for them to like about the new house(they still wish we lived in the other house).
02/16 Good Hips and AFOs
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When I called to schedule Ainsley's orthopedic follow-up appointment I found out that the surgeon just up and left to take a high level position at another hospital in California. Since he'd done a very complex hip and leg surgery on Ainsley I was very concerned, especially since Dr. S's notes and reports were always VERY brief. I think he kept a lot of information in his head. Today we had our appointment with the new doc and he was very nice and attentive. The great news is that Ainsley's hip x-rays look good. The reconstruction seems to have been a success and it is very unlikely that she will need any further hip surgery. There is a pretty firm shelf and the hip is at a much better angle and the coverage over the femur is pretty good (though it could be a tiny bit wider). After 5 years Ainsley still isn't walking and though I'm rather anti-AFO for several reasons too complex to go into here without boring you I've decided it's worth a shot trying them again (these will be taller and firmer than the last ones). Although the new ortho doc agreed with the previous doc about them being unlikely to help he did agree to write a prescription. We agreed that it is worth trying (it's possible that having a more stable foot base will free her attention up to focus on balance which is the real problem) and of course if they don't help we don't have to use them. They were able to squeeze us in the same day for casting which I was happy about even though it made for a long exhausting day. Sadly after this picture of Ainsley picking out the style (butterflies) it went downhill in a hurry. She was etremely traumatized by the experience and I think the poor guy doing the casts was too. He probably needed a good stiff drink afterward. It was one of the harder things I've had to do with her, and that says a LOT. When we get the AFO's I'll have to write a post and elaborate.
02/17 De-cluttering the Garage
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After the yard sale last summer we had a lot of stuff left over cluttering up the garage. Steve and I planned to spend part of the long weekend gathering it all up and donating it to charity. There were a lot of the kids old clothes and I found the process of parting with them rather emotional. I did have to pull out a couple pairs of pajamas. I've got to make a trip to the consignment store and then I think I'll actually be able to get to my gardening cabinet so I can fertilize the garden.
02/18 Spam Head
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It was Evie's 11th birthday today. Her birthday day wasn't too exciting because we have a lot of party planning to do for this upcoming "Percy Jackson Camp Half-Blood" sleep over party. In the evening we picked up a neighbor friend and all went to the Rainforest Cafe for dinner. Since there is always a very long wait we killed some time at the mall. It was weird to see Evie at the mall with a friend and I'm pretty sure it won't be long before she'll want to do that for fun. She was able to spend some birthday money. She decided on a purple dalmatian fedora which is cuter than it sounds. I love this photo! But I'm sure glad she didn't come home with the Spam hat.
02/19 Medusa Skeleton
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Somehow I've managed to get myself into a position of throwing elaborate parties for the kids. Some more than others, because Evie is relentlessly persistent. After the Harry Potter Party I said NEVER again. But Evie insisted that this time she would do all the decorations and planning for the Percy Jackson Camp Half-Blood party and so I agreed when we found some cheap foam swords that we just couldn't pass up (and then later decided weren't good enough) but then we started adding ideas and now here I am again. I've been stressing over one particular aspect of the party, the full size Medusa pinata that I have to construct myself (nobody sells Medusa pinatas). Why-oh-why do I do this to myself?! So I was very happy today when Steve was able to execute my idea for the skeleton. After I finish this post I need to get busy making the body.
Ainsley is now nineteen 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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