Ainsley Maneuvers Wheelchair

Since Ainsley's hip surgery on April 5th I've had a lot of back-and-forth e-mails from the school PT. She seemed very confused about what Ainsley can or can't do during therapy. No matter how many times I e-mailed her she just seemed to be at a loss to understand the situation. Helllllo?! Body cast. Can't do anything with the legs, only the arms. I had envisioned her working on upper body arm strength in various different ways.  For whatever reason she didn't want to do that. She claimed that's what the OT is doing. Whatever. So when she couldn't come up with a plan I suggested that she make the IEP goal to teach her to use the wheelchair that she is in, figuring it would give Ainsley a sense of empowerment to be able to move while she is restricted in the cast and would work on upper body skills and give the therapist something to do.  Boy am I glad I thought of it because otherwise I think her PT was planning on suspending services. As is, she cut her PT from an hour a week to 2 -15 minute sessions.  I didn't fight it because I figured it would be frustrating and hard for Ainsley anyway. I actually thought they would be working on that goal until the end of the school year.

Wow was I surprised when our nurse came home the first day and told me she was able to wheel the chair! I didn't really believe her (thought she was exaggerating) but then on Tuesday her school appointed nurse said the same thing so I asked her to get her backpack off the stool in the kitchen and she did it! The nurse has also been letting her steer the wheelchair in the halls on the other days and she is now pretty well able to wheel herself from point A to B. She needs a little practice steering but I think she's getting there and I swear she is even backing herself up when she gets stuck. This takes a fair degree of motor planning, so to say I'm impressed is an understatement. Ainsley has outgrown her stroller so we have been talking about getting her a power chair assuming she would never be able to use a standard wheelchair. I think she might fatigue so perhaps a power chair will be necessary anyway but it's nice to know we might have options when it comes time to get her own chair.

It's All in Your Attitude

Yesterday I was feeling a little down. Ainsley frequently wakes in the middle of the night, needing suctioning and is now waking because she is uncomfortable in the cast and needs repositioning. It's not uncommon for Steve and I to be awoken 6+ times a night. I almost can't remember what a solid night's sleep is like. And when you are tired it affects your days. Caring for Ainsley's needs plus two other children can be exhausting and sometimes that gets me down. A mom on the trach forum posted a poll and as I read each question I felt my mood shifting. I was able to answer yes to every single question! It boosted my spirits and was just what I needed to show me that we're doing okay, it's all in your attitude. Here are the current poll results:

My child did or said something in the past week that made me smile.- 27 69.23%
I did or said something in the past week that made my child smile. - 27 69.23%
My child did or said something in the past week that made me laugh. -  27 69.23%
I did or said something in the past week that made my child laugh. - 26 66.67%
My child can do something now that they couldn't do a month ago.- 21 53.85%
Overall, my child is doing better now than they were six months ago. - 25 64.10%
I took at least an hour in the past week to do something just for myself. - 17 43.59%
I did or said something recently to advocate for my child that I wouldn't have done a year ago. - 13 33.33%
I have at least one friend that I can really talk to. - 22 56.41%
I was able to say "That's Me" to three or more of the above statements. - 37 94.87%

Benefit For Seattle Children's

Sorry to overload you with posts but a lot has happened this past week.

Last Sunday Evie and I attended an American Girl Afternoon Tea Party to benfit Seattle Children's Hospital. As you know Ainsley has had a lot of surgeries and her medical bills to date are well over a million dollars. Actually that's not too bad. We have trach friends who maxed out their insurance before the child left the hospital. Most of us are fortunate enough not to worry about whether some day we might run out of medical benfits through our insurance carrier and I would venture to guess most people don't enough know what their lifetime maximum benefit is. Unfortunately in situations like ours or in the case of a catastrophic illness the bills can be unbelievably high and have devastating consequences for a family's finances. Running out of insurance benefits is a huge concern for many people in this situation.

In a way our family is fortunate (depending on how you look at it) that Ainsley's medical situation is so extreme. While she has her trach and g-tube she is classified as medically intense and because of this and the fact that she has no income of her own she qualifies for a Medicaid waiver which picks up the portion of Ainsley's expenses that her insurance doesn't cover. When Ainsley gets her trach out we could easily be in a position of needing financial help or going broke. Until then I'd like to do what we can to help others who aren't as lucky.

On top of being fun, the benefit we attended raised funds to cover uncompensated care, or to cover the medical costs that insurance doesn't pay for families in these unfortunate circumstances.  This is a great cause. If you have the funds to support Seattle Children's Hospital click this link to learn more. If you want to know more about the American Girl Fashion Show or to donate to through the Star Guild click here.

The event was sponsored by Vera Bradley and the tables were decorated in her fabrics, very pretty.

The models were dressed as American Girl characters in period costumes. We learned a bit about the history of girl's fashion. This is Felicity.

All the American Girls taking a bow at the end.

They had a runway for our American Girls too. I had to plead for Evie to go up. Luckily my first shot was good because she immediately ran off the other side. I'm so glad we went because I think soon she'll be too old for these type of things.

It was really great to spend a little one-on-one girl time together. We don't get to do it enough.

Thank You! & Communication

As Ainsley's receptive language increased I started asking more of her communication. I frequently ask her to sign things. For several months I've been working on Please and Thank You. Asking her to sign "Please" when she wants something and "Thank You" when she is given something. She's a sweet girl and never mind being asked and usually obliges my request but I've always had to ask. On 4/20 she signed "Thank You" for the first time after being given a taste of food on her Nuk brush. Hooray Ainsley! What a leap to understand the concept of Thanks.

One bright side of being confined to a body cast and being imobile is that you have to work to communicate your needs. We've been in the process of getting a communication device for Ainsley through the school system. We met again on Tuesday after class and Ainsley sat by patiently while we worked on choosing the words that the device will say. 

How it works is that sheets are created with the words and pictures over each button and we record the word being spoken for each button. There are 12 channels for 12 different sheets (overlays) of recorded words. When Ainsley pushes the button it will say the word for her. I am waiting to hear back from them but am hoping they will have the overlays complete and the device in our hot little hands soon! I think it's the perfect time to work on increasing Ainsley's communication skills while she is physically imbobile from the hip surgery. I am very eager to see what she does with it.

Clapping

Ainsley has cerebellar hypoplasia, which means that the portion of our brain, the cerebellum, which processed motor function (movement) is impaired. Her particular form of cerebellar hypoplasia is rare, not quite meeting the standard malformations that are generally seen. This is a big part of why we are so unsure of a long term prognosis for Ainsley. Although, one thing we do know for sure is that everything she learns to do with her body takes an incredible amount of extra effort and practice before she can master the skill and when she does it usually looks a little different. A friend once said everything she does looks graceful. I think that's a nice way to put it.

Over the past month she's started clapping anytime she likes something or does something good. This has given her a lot of practice. Even though she's been clapping for a very long time yesterday was the first day I could actually HEAR the clap. A round of applause for Ainsley please, "Yea Ainsley!!!"

Back to School & Keeping Busy

We noticed that Ainsley's pain from the hip surgery started to get much better at the end of the second week post surgery and by Monday she was ready to return to school.

We had a few details to work out. We had to switch buses because she needs a wheelchair lift. The bus unfortunately drove right past our house but luckily we caught up before they drove off. The alarm system malfunctioned which scared the bajeezus out of her as she was lifted into the bus which she didn't like in the first place. There was no space for the nurse to sit near Ainsley on the bus so our nurse sat on the floor. Depending on a tiny plastic tube to breathe means that you have to have someone with you at all times for safety. The nurse is with her to make sure the trach doesn't get pulled out and to suction her if the tube fills with secretions, making it difficult for her to breathe. Sitting two seats back doesn't work, nor does sitting on the floor. That's a liability for everyone. I think I got it worked out. Coordinating her return to school with the transportation department, her teacher, therapists and nurses took a lot of effort. I'm really glad that we're done. 

It helps her mood a lot (and therefore mine) to have her back at school. It really helps break up the day.  She gets back around noon. That leaves a little time to play before lunch and nap. Then after nap Evie and Adrian get home and we start homework and then dinner and a bit more play before bedtime. She's not sleeping all that comfortably which means Steve and I aren't sleeping well yet so it really helps when she's not bored during the days.

We did have some time to pull out one of the sticker activity books I'd bought for her recovery period. I don't know why we haven't done these sooner. It's great on many levels. She doesn't really like stickers because they are...well, sticky. So it's good to overcome her adversion to sticky things. She can work on pointing, making choices, learning the names of things on stickers and page, and it takes a fair amount of dexterity to apply the sticker to the page. She needs practice. And it's a good one-on-one activity.

This book was a doll house. We worked on the bathroom page.

She had a lot of fun. This is why I'm in love with this child. Her smile is pure radiance.

I'm not 100% sure she totally gets the idea. Or maybe she's being silly. Who knows. She's come a long way from the girl who didn't even like a sticker on her shirt.

           

Somehow this week I was able to squeeze in a little scrapbooking project for a friend whose child won a gold medal for the 50 meter breaststroke at the Special Olympics last weekend. I printed the page as a 8x10 so they could frame it.  I did this free of charge because I like Asher (his last name has been blurred for privacy) and am proud of his accomplishment. Having a soft spot in my heart for special needs kids. I think it turned out quite nice. I may have discovered a new niche. Hop on over to my business blog See Susan Scrap if you are interested in knowing more about my new scrapbooking endeavor. Tomorrow I'm attending a Crop 'Til You Drop event at my upline, Eileen's scrap studio. Hopefully I'll finally have some uninterrupted time to make some progress on our Disneyland Trip album. I hope everyone has a good weekend!

New Blog Design

At long long last I am proud to unveil my new blog design. It's been a lonnnng time in the making  as we had a few technical problems. I've learned more about HTML than I ever wanted to know. But, I think the results are worth it. I hope people enjoy the clouds. I am very excited to be able to put separate information into pages instead of using the side bar. Most everything is still here, just in different places. In addition I have added a page just for information about the blenderized diet   I hope you like the new design and I'd love to hear what you think. It's likely that I may be tweaking things a little over the next week or so and intend to add a FAQ (Frequently Asked Questions) page. If you want to tell me what you think but don't want to comment publicly please e-mail me at ainsleyblog@comcast.net .  Thanks!!!

My Girl Is Back

After 5 days of no smiles following her hip surgery I had started to worry. I'm happy to say that after a good poop last weekend my (relatively) happy girl was back. How I had missed her beautiful smiles. It is one things I am so grateful for....her attitude. Through it all I know how lucky we are for that.

Oh how glorious to see her smile, playing silly games with her Daddy.

Enjoying her favorite activity, reading a book, instead of saying "NO!"

Playing with Mommy's much coveted ring instead of refusing it.

Even getting outside for some fresh air.....

and shooting hoops, even in a lower body cast and wheelchair.

Hugging her dolls instead of throwing them on the floor.

I would be lying if I said she was truly happy. She's still pointing to the cast and signing "Off". Pleading with her eyes, actually, in addition to using sign language. But over all she is back to her normal self. Taking it all in good stride...... All things considered.

These pictures are unedited (Straight Out of Camera) for SOOC Saturday over at Melodie's blog Slurping Life.

SOOC Saturday - What Would You Try?

What would you try if you had no fear of failure?

This is my 3 1/2 year old daughter, Ainsley, trying to hula-hoop even though she cannot stand without support. (She was born with differences that make life a challenge for her.) That wasn't going to stop her from trying something new or having fun while she did it.

This photo was taken last week. A lot has changed in that week. She had hip reconstruction surgery and will be confined in a lower body cast for 6 weeks and a brace for another 6 weeks. We are adjusting. She is resilient. One thing I know for sure is she will be okay and amaze me. She always does. For one little girl to go through so much and be so happy.  Well....it's humbling. She's a better person than I am. 

This image is unedited (Straight Out Of Camera) for SOOC Saturday for Melody's blog Slurping Life.

I hope you enjoy it.

Crap!

This is a reminder to myself that stool softeners and laxatives are a surgery patient's good friends. I decided to spare you a picture to go with this post. Lucky you! I spent the better part of today "helping" Ainsley poop, in other words with my pinky up her bum (gloved and lubed of course). The things I won't do for the love of my children, especially Miss A.

After 5 days I was getting more and more worried with every feeding. I knew she needed some help. I had opted not to give her too many laxatives for fear that the change in diet (they used formula in the hospital) and then back would give her icky poop and foul up the cast. So we did about half the doses of Miralax and Docusate. It wasn't enough. Now that she got things moving I hope she feels much better. She's been cranky and I hope this was part of the reason why. Afterward I gave her oxycodone, lunch and a nap. Let's hope she wakes up a much happier girl.

Positioning is difficult. She's heavy and awkward and I'm very worried about causing her pain. It'll get easier to care for her when I no longer have to worry that turning her is making her bones rub. She doesn't like the wheelchair. Doesn't really like to watch TV. Of course she loves it when I read to her but I can't do that all day. My poor older kids have barely seen me. Of course Steve has another game deadline and had to work today. Luckily they were invited to a sleep-over birthday party so that will be fun for them, they just left.  Monday and Wednesday our nurse comes and I'll be glad of the help.

This is the adjustment period. My hope is that in a few more days Ainsley will heal enough to come off pain meds and she'll feel much better (I think they make her feel woozy). Then she can go to school and the distraction will help break up the days and make them go by faster.  I think she'll adjust but we're not there yet, still looking for our groove.

Thanks for checking in on us. We'll be okay.

Home

It's so good to be home!

Although it's a little weird to have a wheelchair in the house. We'll adjust though. We always do. It might take some fine tuning, but it'll be okay. *Notice Adrian under the wheelchair?! And my sister Sheryl in the background? Thanks for your help Sheryl! What would we do without you?!

Despite the pain Ainsley really wanted to be on the floor with her brother and sister while they finished homework.  She's grown a little since we used the turtle chair the last time she had a spica cast. But we made it work. She actually smiled for a fleeting second when Steve put the basket of toys next to her. And she gathered the energy to throw a ball for awhile.

It was a little heartbreaking. She looked at me very purposefully at the end of the night and pointed quite clearly to her legs (with a true pointed finger no less) and signed open/off. She was really watching for my response in a way I don't usually see. I don't know that she can understand me but I explained all the reasons why she has to have it and said I am so sorry. I hope and pray, in her own way, she understands.

Working Out Details

Ainsley seems to be feeling much better today. There is still pain when she's positioned (as you'd expect) but she's able to rest so that shows me that things are better. That, and she was interested in reading books today. Lots of them.

The wheelchair and Hippo carseat arrived about noon. It took some work to get her positioned but I think we've got it worked out. Ainsley had been pulling at her ears yesterday so they checked to make sure she doesn't have an ear infection. She's had SO many secretions. But things look good. Her g-tube has a little sore so I had them take a look but I think if we can get home and get some Desetin on it it'll be better in a day or two. The prescriptions are filled. We're just waiting on PT to get here with the foam piece they are building for her to sleep on. Since she sleeps on her stomach we need something that helps support her torso. So we should be signing the discharge paperwork soon and be on our way.

Half A Smile

This surgery has been hard on Miss Ainsley. She's a girl who always has a ready smile but it's been missing since Monday morning. She normally loves books. Over the past two days I offered many times to read her a book and she would say no. When I pulled the new lift the flap book out to screen of the IV pokes yesterday she looked but barely lifted a hand to open a flap. And she was "all done" rather quickly. I asked her several time if she wanted a present and she said no. Finally this evening I got a yes.

I sat the present on the tray (the store even gift wrapped it for me) and she actually signed open and help (as you can see in the picture) throughout the opening process. It was great to see her get well enough to be interested and motivated to communicate with me.

She was really checking it out. And it was great to see she had the strength to lift the box. She's a little shaky though.

Evie has been collecting Calico Critters since she was 3 so after 6 years we have a bit of a collection. This one must be new. Ainsley really likes to play Calico Critters with Evie. I knew this set was perfect the second I saw it.

Of course the first thing she wanted to do was take off that poor little mousie's cast! If only it were that easy for her. Evie is a creative genius. I'm giving her the task of creating a spica cast for the mouse when we get home. I'll have to post a picture of it.

She played with it for a little bit. We played that mousie got a shot, gave the nurse a shot and the nurse then promised to be more gentle. We gave the mousie her medicine and used the stethoscope (so cute)  and pushed the mouse around in the wheelchair.

I got half a smile. That's going to have to do for now. She seemed very tired and after her last feeding I put her on her tummy to sleep. Seems fairly comfortable as we speak. I think she's well on her way to getting better and I think when the wheelchair and car seat get here we'll be on our way home.

A Much Better Day

Sorry for the late update. I just had a surprise visit from my friend Wyndi. Her daughter has some medical issues too. We met in the hospital during a surgery and have kept in touch over the past 2 1/2 years. It's SO great to actually have a friend locally that knows what it's like to go through this. She is so sweet, brought me instant Starbucks packets so I'll never be without coffee again. I can't wait to try them with the scones and chocolate that she brought. Thank you Wyndi.

Last night we positioned Ainsley on her stomach and she was able to sleep most of the night. I won't say comfortably, but at least well enough that she wasn't crying. Because she was on her stomach she didn't have the constant secretions so luckily I didn't have to get up to suction her all night long. That means I got sleep, glorious sleep! What a difference that makes. After rounds I was able to squeeze in a shower and get to the cafeteria for breakfast before they closed. I got my coffee. So life is much much better today.

Luckily we were assigned a private room. I think I forgot to mention that. For those who're fortunate enough to have never stayed the night with their child at the hospital that is great because it means less people in and out of the room. More privacy which is great, especially when your child's naked bum is up in the air while you fix up the cast with moleskin. Less noise so your child can rest (or fuss without disturbing anyone). And best of all you don't have to go out in the hallway to pee at 4am. (If there is a child using the bathroom then parents aren't allowed to use it.)

They were talking discharge this afternoon. It seemed a little soon to me. She's fussy. She doesn't like being here. Understandably she doesn't like the cast. It makes it hard to know if her pain is being adequately managed. Although I think if it isn't enough they'll just increase her dose of Oxycodone. She'll also come home with muscle relaxants to help prevent muscle spasms which are quite painful.

She got her cast cut down around the g-tube and at the rib area so it isn't too tight. She was so brave while the doctor cut it with his special saw (it can't cut skin, just the cast). So that's one thing done.

We are working on returning her to a normal feeding schedule and she just received her first 8oz feeding.  They are transitioning her to oral pain meds and will pull the epidural today. (I know after all those IV pokes! Insert eyeroll!) The  last things is they are working on getting her equipment. A tilting wheelchair and a special carseat. Of course those things weren't ordered like they should have been so it looks like we'll be waiting on them. I don't really mind. Looks like we'll be going home tomorrow.

Birthday Saved!

Thanks everyone for your birthday wishes and kind words of support.

The surgical doc was able, after 3 more attempts, to get the IV placed in her foot. I guess in this case 9 is the magic charm. That means she gets to keep her epidural which many of you moms know from childbirth, is great. Even though it had clearly worn off some because she cried during the IV attempts in her feet and later when I changed her diaper.  Still I fear what kind of pain she might experience if we'd been forced to switch to oxycodone if we couldn't get an IV in. So 7 hours later.... Sheesh!

Steve and the kids arrived just in time to save my birthday! Yea! My absolute favorite, Chinese food! It sure beat today's menu choice, "hot dog bar", at the cafeteria.  Seriously that's on the menu. In addition to the regular hotdogs they offer.... in case that isn't enough. Anyway.We all ate together in the room and it was really nice to have them here for a little break.

...and had the most delicious chocolate raspberry cake.

Adrian blew up glove balloons.

Evie gave me these gloves. Those are no ordinary medical gloves. They are covered in her kisses so I can put them on later if I'm missing her. This is her adaptation of "The Kissing Hand".

I got some handmade cards from the kids and a scrapbooking book which will be fun to read if Ainsley ever falls asleep and have a spare minute to myself.

Saying goodbye when visiting hours were over and seeing the full cast. Doesn't she look huge?! I swear she looks taller.

Ainsley didn't even give a hint of a smile to Evie and Adrian so then you know she's not happy. She's been wimpering/crying the entire day and needed a TON of suctioning. It reminds me of when she was strapped into the reflux wedge as a baby and the secretions would just percolate in the trach no matter how many times you suctioned. I knew she needed sleep. So we just tried repositioning her on her stomach since that's the way she has slept for the past 3 years. It's tricky to get her positioned because of the cast and the trach. And her heart rate and respirtory rate are higher than normal. So we're going to see about another epidural bolus on top of the epidural drip. At least it looks like if she will sleep this way if we can get her reasonably comfortable. I really need some sleep myself.  Hopefully tomorrow will bring good changes. But we knew this would be a difficult recovery. They said 3-5 days inpatient. I suspect it will be 2 more nights. BTW we are in room 3004.

Happy Birthday To Me!

What's better than spending your birthday in the hospital with your child whose had a major surgery? When you get zero sleep, start the day with lots of medical visitors (nurses, doctors, surgeon's, nurse practioners, respiratory therapists, social workers, & nutrionist) and miss breakfast, get no coffee (yes this is the most disturbing part if you know ME)!  THEN.....The catheter that empties the bladder kinks and there is urine leakage into the diaper, you then realize you'd better to line the cast with moleskin NOW or risk paying the price with your nose for the next 6 weeks. During repositioning for the job her IV stops working. And the afternoon is then spent trying 6 unsuccessful attempts to restart an IV with 3 different people so said child can keep her epidural to relieve pain from this major surgery. All the while this stream of activity means missing lunch and catching up on sleep.  Agggghhh! Shower? Forget-about-it. I'm feeling every one of my 42 years, plus some!

Yes, this is how the day has gone so-far. (Although I finally did get my morning coffee at about 4:00 and that has helped a lot.) We think Ainsley is a little underhydrated. We're giving her a fluid bolus as we speak and are planning to try one last time to get an IV going in the foot (where we discovered she can't quite feel it thanks to the epidural) so that they can continue to use the epidural. She got a dose of oxycodone and they ordered an oral version to the Torodol since her IV meds can't be given right now. She wouldn't even lift her arms to lift the flaps of the new zoo lift-a-flap book, but it did provide a good shield during IV pokes. At 5:00 she started to dose off intermittently. But she is still pretty fussy. Imagine asleep but still crying. She is not too happy. Clearly I was way wrong about how things were going to go. She was so comfortable yesterday, but we haven't gotten back to that state. Now she's stirring. Her bolus stopped and it's time to try again to get that IV so I've gotta run.

Not So Great A Night

Unfortunately after the anesthesia from surgery wore off Ainsley became fussy despite the epidural. Because she is non-verbal it is really difficult to pinpoint the exact problem. And even though she normally will answer yes no questions I don't think she knew exactly what the problem was or was refusing to answer my questions. For a bit it seemed there could be some stomach pain from gas (venting the g-tube helped) which is common after surgery, or perhaps her stomach wasn't really ready for Pedialyte so we stopped and started that. Then we got Tylenol on board. That didn't do much (big surprise) and tried Atavan at 2am for muscle spasms (her right foot was twitching a lot). She slept a good part of yesterday afternoon so I suspect she wasn't tired. And she normally sleeps on her stomach, something you can't do in the hospital, especially with a cast on. Whatever the cause she wasn't sleeping. Then all the fussing caused her to have constant secretions and I swear I was up every 20-40 minutes suctioning her all night long. Twice I tried to climbing in bed with her to hold her hand but that didn't work either. I suspect she is also frustrated at not being able to move her legs. Or maybe it's just the fact that they cut her hips and legs into bits and reassembled them. Funny I think she was just as unhappy about the medical bracelets and IV as she is about the cast. Whichever each of these things played a part she was pretty much like this off and on all night.

This morning we had ortho rounds, family rounds, then a visit from the surgeon and then a consult with the pain team. They agreed she should be more comfortable and authorized a bolus of the epidural med. That should numb things up a bit more. They also started an anti-inflamitory. And we may start giving the Atavan around the clock and then back off if she's too sedated. Finally around 10:00am after all the night nurse and; respiratory visits, and morning activity she has crashed out and is resting. What a relief.

Hip X-Rays and Recovery

We met with the surgeon post-surgery. Over all he was happy with the result. Her hip sockets were so shallow and had to be rotated so much that they couldn't use her own bone because they needed too big of wedges to fill in the "gap". So they used donor bone. That's good with me since it leaves that part of her hips intact. If you look really hard you can see the chunks of donor bone. It's so wedged in there that they didn't need the 4" pins. That's good with me too. They also used some of the leg bone that they removed from the femoral osteotomies. The following picture shows her "before" hips on the left and the "after" hips on the right.  The hip sockets should surround the top of the leg bone. You can see in the post-surgery x-ray that they cut and rotated her hips and they are now in better alignment over the femur. The left hip (shown on the right) is not quite completely covering the head of the femur. But he thinks it will do. (There is a 15-20% of failure or that she could need further hip work.)  You can see the plates that reconnect the femur. Those will stay unless she developes a problem with them in which case they can be surgically removed. 

 

The nurse was concerned that Ainsley was oversedated but the anesthesiologist on call just checked her out. Basically the epidural has made her so comfortable that she's taking a power nap, and some of the anesthesia is still in effect. She looks great! The cast is not as wide as we expected. It seems narrower than it was last time, when she was only a year old.  Things could change but I think she's actually going to be fairly comfortable when she wakes up, which is a huge relief.

Surgery Is Finished

They paged/called with hourly updates letting us know she was fine. It always feels weird to be at the mall (which happens to be just down the road a few blocks) shopping while your child is under the knife. But it really does make the time pass more quickly. And the distraction helps calm the anxiety. I was able to find a dress at Hanna Andersson that I think might fit over the cast, so the poor girl doesn't have to wear adult size t-shirts. I'm not sure if the Baby Legs are going fit over the cast this time around since it's 2 1/2 years later my guess is it'd be a tight squeeze to get them on. I also picked up a few new books for her. I suspect she's going to need a distraction when the anesthesia wears off, and certainly it'll be good when we get home and she can't move around. Oh, and I found the cutest set of Calico Critters. A little mouse in a wheelchair with a cast and a bunny nurse. Ainsley loves Evie's Calico Critters so this is perfect! Maybe it'll help her to act out what she's going through with the critters. I'm dreading her waking up miserable. I'm saying I'm sorry with gifts. I hope it works. 

They gave her an epidural. That way they can block the area for the next couple days without having to give her too many narcotics. That's a relief, the pain from all those cuts in her bones....Yikes. They had blood on order (typically it's that kind of surgery) but luckily she didn't need it. Her vitals remained good. They are finished and putting the cast on her as we speak.  Then I imagine it will take quite awhile before she gets out of recovery and we get a room and I have a chance to update again.

Finally Started - Bilateral Hip & Femoral Osteotomies

Our check in time was 8:45 but it was 10:30 by the time they got started. I was able to go back into the OR with her like we've done the past 2 times. It is easier on her that way, no tears or pre-sedation required. She has become more attached to her lamby, so we brought it for her to take back with her. She gave it lots of hugs and kisses during the long wait to see the surgeons. Steve and I are having breakfast at Johny Rocket's  and will kill a little time before heading back to the hospital. It's a 4-5 hour surgery so it's going to be a long day.

Happy Easter Everyone

With Ainsley's upcoming surgey I've been less focused on Easter. Almost missed the boat, actually. I had to go pick up eggs and dye last night. I sent Steve to get the candy, that I normally would have purchased weeks ago. I didn't even want to decorate. But luckily Steve pulled the totes out of the attic. Better late than never. Within that tote was this object of terror.

Would you guess that this friendly little guy doing the chicken dance would produce this kind of result?

She is naked because I'm trying on outfits for Easter. Yes the Easter that is tomorrow. I'd like for her to be able to participate in the egg hunt tomorrow at the cousins' house so I'm going to bring her walker. That probably means no dress.

 And this is what she thought of this dress, anyway. 

I think she actually said the word "off" (without the ff, the same way she says "uuu" for up) while she did the sign for off/open. Hopefully I can find something for her to wear. 

I'm waiting for Steve to get home with oil so I can bake the "nest cake" for tomorrow. 

I'm feeling very unprepared. Hopefull all will turn out in the end.