Mar 30, 2012

Happy Walking and Playing

Most of the people who read this blog know us personally, but there are some who find this blog through the internet. I have information about making blenderized food for gastrostomy tube feeding, and a LOT of medical information which parents of special needs kids are always looking as a point of comparison. People researching hip dysplasia, sagittal craniosynostosis, pediatric ptosis, or cerebellar hypoplasia may find this blog. Then there are the YouTubers. I don't know why but the videos I've posted on YouTube for educational purposes (like tube feeding) and ones I've posted as a way to put videos on this blog have a lot of YouTube viewers and subscribers. So this explanation is mostly for them, but even if you aren't a "stranger" you might be struggling to understand why I am doing this Happiness Photo Project or Happiness Project.

Sometimes I find it a challenge to see the good because the bad seems so much easier to focus on. I know I'm not alone in the tendency to do this. If I can find the happiness or gratitude every day then anyone can. Doing it every day for a whole year, that will be a challenge because aside from life being life, having a child with complex medical issues is very difficult. Yesterday I spent about 6 hours on the phone with clinics, hospital billing, DMEs, insurance, Medicaid. Just trying to get answers and the best treatment for my child and tie up loose ends. I made some progress, but a lot of that time feels like a waste. And this was about the 4th day in the past week. The fourth day I'd planned to do other things that I wanted to do (my photos and get out of the house). We have all dealt with voice mail systems that don't let you get to a real person, or when you do the person is unable or unauthorized to help you.  After hours of that it creates a lot of frustration that can take your mind to very scary places where you wonder if it's all worth it. Early in this journey I had a lot of those days but now they are few and far between.

The answer is YES it's worth it. Even when it doesn't feel like it. Dark days like these really require that I look hard for the happiness that is there. When the older kids came home and required my attention with homework and a snack my mood lifted some. Even though it will somewhat spoil my Happiness Week 13 post I had to share what Ainsley did after that.

Evie and Adrian were in Adrian's bedroom and Ainsley decided she wanted to be with them. But rather than crawl down the very long hallways like she normally would she pushed her walker over to the step so she could use it. She got in it by herself (which is tricky because hers pushes really easily especially on the hardwoods) and then steered it down the hall, only needing a little help through the doorway (the walker has to be facing at a 90 degree angle.) You might notice that I wrapped the front wheel hardware in bubblewrap and black duct tape to try to protect the walls and doors from becoming gouged. We're hoping she will start using her walker regularly in the house. Hoping this is the just the beginning. And hoping one day the walker won't be necessary.


Hooray! I love that she feels SAFE and CONFIDENT enough to do this! The more she is motivated, the more likely it is that one day she will walk independently.

I know she should have her AFO's on instead of being barefoot, but that would have spoiled it for her.

Steve was out for the night with friends and Evie and Adrian decided to "dress up" Ainsley as a princess. Adrian was the magical tiger who rescues the princess and Evie was her lady in waiting. They used to play like that all the time, but as they've gotten older it's less frequent especially now that they are "plugged in" with a Nintendo DS and an IPodTouch since receiving them at Christmastime.

Ainsley was still a bit of a reluctant player, since she gets treated like a real live doll. It was funny, when one of the dresses was scratchy she signed over and over that she wanted it off, so Evie thought if she showed her "how pretty" she looked in a mirror she would be happy. It was hilarious. She looked in the mirror and then threw it. Message received. Looking like a pretty princess isn't worth being uncomfortable. I agree Ainsley. Comfort first before beauty.

Still she was a pretty good sport and had some fun. I think she liked this outfit better. Except the flower.

Evie tried showing her how pretty it was in the mirror again. We asked her if she was going to kiss herself in the mirror which she thought was funny. So then when we laughed she kept doing it over and over. It turned out to be a fun night. Especially compared to my awful day.  I'm a lucky mommy. I love seeing my kids spending time together and playing like this.

Today is Friday, the last day before spring break and Easter so hopefully there will be more of this kind of play over the next week and enough togetherness that they are happy to go back to school on the 9th.  I'm wishing you all a good weekend...and until Monday.

Mar 26, 2012

Happiness Week 12

Even during the most mundane and ordinary days of life there are things to be happy about.

What Made Me Happy - Week 12

03/19 Organized Closets
I spent a huge chunk of time cleaning out the kids rooms and closets because it had reached the point of being a problem and although this might appear cluttered it is still so much better. The older I get the more I yearn to have all our spaces neat and organized. I'm sure my mother is rolling her eyes. I was a very messy child. I think having an organized environment provides some control in an often uncontrollable world. Also I find it difficult to be mentally organized when my environment isn't. I recently read a book a friend recommended,  Organized Simplicity by Tsh Oxenreider. What I got out of this book is that when we keep things we don't need or want we are choosing to live in a space we don't enjoy as fully as we could or that doesn't function as well as it could. Why would we do that? Good question especially once you realize that you can't have both a bunch of junk and a house you love to live in. It's as simple as that. The two are incongruous. So I decided to get rid of some stuff this week. Clothes the kids are too big for. Clothes with holes (Ainsley hates holes.) Toys we don't love. Junk from the junk drawers. Papers. Bits and bobs in the kids's rooms.  It's taken days. It wasn't fun. I had other things I'd rather do. But the result. Heavenly. For a moment....until it gets messed about a 1/2 hour.
03/20 Labels
I like labels. At first glance my house looks pretty organized. I like that. But the truth is, within, things are still not. My binders have needed new labels for about 3 years. And inside were so many old papers that they were as good as useless. But not anymore. We are starting fresh.

03/21 Independent Children
My kids have to be independent because I am busy. Even Ainsley has to. Sometimes I feel bad about this but I think it will serve them in life to be able to be self-sufficient.  During my reorganization week I looked over and found Ainsley playing Calico Critters at the table. "Who got those out?",  I asked, suspicious of her brother and sister. She raised her hand to say "I did." Way to go Ainsley!
03/22 When Children Follow Instructions
Ainsley was playing with a game while I did paperwork and reorganizing. Then she brought me the medical kit to open. "No," I told her, imagining all those pieces mixed together scattered all over the floor. "Only one toy at a time. Put away the game first and then I'll open the medical kit." It took her awhile but sure enough she put all the cards and pieces back into the box and placed it on the shelf and then brought the medical kit back to me. I was so impressed that she listened and followed my instructions to the best of her ability (she couldn't put the lid on the box). It's easy to underestimate this girl.

 03/23 Sun and Blue Skies
Finally we saw the sun today and it was glorious! I had a nurse for Ainsley and the other kids were at school and even though I was running errands I had time to open the sunroof and enjoy the weather while I ate my lunch in the car.

03/24 Improving
I kind of grew up with this idea that people are born gifted or they aren't. True there are some exceptional people who are born naturally able to do certain things with little effort, but what I've learned is that those people are few and far between. The overnight music sensation has likely been a musician all their life. The little known actress who becomes a huge star actually grew up in a family of actors. The athlete, the writer, the strait A student, the artist, the entreprenuer etc.  Most people who are good at something are because they've worked hard at it. Adrian has been frustrated that he wasn't playing as well as some of the kids on his sports teams. We've been trying to tell him that many of these kids have played for years and he needs to practice if he wants to be good. He is not a gifted natural athlete (he's our child after all). I think it's finally sunk into his thick head and he has started to practice regularly and now understands that just a few minutes here and there won't cut it. I think he's starting to enjoy it, which is the best, when it doesn't feel like work. It seems to be paying off. He had his first baseball game of the season today and he did great! Even if he never becomes a star player we are so truly proud!

03/25 Increasing Confidence
We've started keeping the walker in the family room. Tonight Ainsley saw Evie and Adrian chasing each other and she decided to get into her walker by herself and walked it over to the step and "asked" us to bring it up for her to use. It's so encouraging that she is feeling more confident in it. After many phone calls I got her scheduled to start outside (meaning outside the school system) PT in April. I'm hoping they can teach her to fall and reduce Ainsley's fear so she is comfortable taking more risks.

I am hoping to spend more time this week paring down my photo collection. I've come to realize that I need an entire year dedicated to that. A single month just isn't going to cut it. I'm finding treasures but they are buried deep.

To view a slideshow of the entire Happiness Photo Project click here. For more about what this is all about click here.

Mar 19, 2012

Happiness Week 11

Just in case you missed it, click here to read my update about all that's going on with Ainsley.

What Made Me Happy - Week 11

03/12 Done with Thank You's
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
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
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
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
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
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
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'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.


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.

Mar 16, 2012

We Have A Date

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.

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.

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.

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.
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.

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.

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. 

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!

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.

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.

Mar 12, 2012

Happiness Week 10

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
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
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
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
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
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 am really 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
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
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.


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.

Mar 5, 2012

Happiness Week 9

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
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
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
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
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
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
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
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.

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.