Dec 23, 2010

Merry Christmas All!

We went to Macy's last night for Santa photos. I would have skipped it this year but we've done it every year since Evie was born, including with Ainsley the year she came home from the hospital on the 22nd of December. If I could do it that year, and the year it snowed, I could do it this year.
While we were there Steve found this Christmas ornament for my collection.  I've been collecting them since I was a girl (okay, teenager but I'm old enough now that I consider teenagers girls) and try to add one to the collection every year. See....Once upon a time I really loved Christmas. As the years go by I have less energy for all the hoopla. Especially this year with Ainsley's eyelid surgery and it's underwhelming results. So here it is, the "perfect ornament for 2010". I know some of you are going to want your own.....

Thanks honey, I love you! After 18 years together you know me too well. Coming home with this ornament actually cheered me up a bit because I am funny like that. I will look back on it with fondness some day like the ornament from when Evie was obsessed with Madeline, or the vintage tin Mickey for the year we went to Disneyland.

Macy's now has the "Santa Land" in a location at street level but there isn't an obvious ramp and there are stairs, not making it wheelchair friendly (though we are still using a stroller and waiting for her new wheelchair to arrive). Never mind the disabled,  because we all know they are seldom truly considered but HELLLO?! what about the customers.... lots of parents with small children in strollers?! Anyway, Steve had to carried the stroller down the stairs. So naturally when I spied the manager I went to quietly complain about the lack of accessibility. He informed me there is apparently a back entrance if you can find it.  He did however rush us to the front of the line because of Ainsley. I wasn't expecting that but really won't complain about not having to wait an hour in line since it did give me an hour to get some gifts. Happy as I was to be rushed to the front of the line it was almost over so fast that it took some of the fun out of visiting Santa. Still I was happy not to endure an hour of kids and adults staring at Ainsley as we worked our way through the line and all the emotions that come with that and trying to show a bunch of strangers that we are a normal family. 

Unfortunately she was was TERRIFIED of Santa even though we showed her the Santa pictures from prior years before we left. I thought it would help prepare her....NOPE. I thought she was big enough to sit in Santa's lap by herself this year and that way I didn't have to be in the photo for the first time in years! Well that didn't go so well. She especially didn't want to sit on his lap, but like the good girl that she is, she did.  We were able to calm her down so they could get this lovely photo in which there is not even a hint of a smile to be found.

After the photo each of the kids took turns telling him what they wanted. The Pokemon Wii game for Adrian. The Amercian Girl doll Felicity for Evie. When it was Ainsley's turn I had to choke back tears as I spoke on her behalf and said simply, "She's been through a lot this year.  Please bring her a special surprise."  If I'd said more I think I would have dissolved into a blubbering mess. Even though I didn't explain that "a lot" was actually: a brow surgery in January, adenoidectomy and granuloma removal in February, hip reconstruction in April, spica cast and brace until July, eyelid reconstruction and hip plate removal in December, and lots of testing in between; he seemed to understand without me actually having to say it. Santa was so kind and said he would bring a very special toy for a very special girl. Since she can't tell us what she wants my hope is that Santa guesses right.

They now shoot digital and print the pictures while you wait. This is great for procrastinators like us who usually didn't see the photos until after Christmas. The instant gratification is nice but Ainsley didn't seem impressed nor did it seem make up for having to sit in that scary Santa's lap.

On the way out the door we caught a glimpse of the reindeer.

And these sugary temptations. An entire YARD of giant gumdrops. Lordy!

 The train set in the window that turns on when you press your icy cold mits to the window to power the trains.

The kids really love it. They like to look for all the cute figures.

Like the abominable snowman there. See him?!

 Ahhh. I do it for them, even when I really don't want to leave the house. 

 Aren't they adorable?!

After 10 years of trips to downtown Seattle this may be the last. The Believe Meter is losing power.  Evie and Adrian are old enough that they know this Santa isn't the real Santa. (Sniff.) And Ainsley, well she just doesn't really care about such things. In light of the fact that we may be moving soon it's time to start some new traditions.

Getting them all dressed up was a good excuse to torture them with the camera. I was pleased with this shot.

Yay, we're done!

And since 2010 is the year of "Bah Humbug" this post will have to serve as our Christmas card since we didn't send them this year. I hope you understand.

Thank you all my loyal readers, may you have a Very Merry Christmas!

Dec 16, 2010

2 Weeks Post Surgery Pics

I've been having a hard time. I'm tired. Just lacking energy. And motivation. I barely managed to get these photos to mark the changes at this 2 week post surgery point. Sorry the lighting's no good but I just didn't have the energy to go get my flash and load it with new batteries.

She's trying to squirt me with a syringe while we sat on the couch after doing her warm eye compress and a water bolus. Ha, ha funny girl!

This is about how her eyes are looking relaxed. She can lift the lids more using her forehead muscles.

Like here. Okay that's not a huge difference.

But ideally what we (I) were hoping to get to was something more like this...

Or I guess I should say I had hoped that maybe her eyes would some day look the way they did when she was born. In this photo she is not using her brow to lift the lids. This shows the degree of ptosis and slant she was born with. I had prepared myself that the results might not restore her original appearance, but I hoped. At one time I had been told by the ophthalmologist that with a frontalis sling her eyes would look totally normal. I wanted the droopiness fixed and looked forward to her having normal looking eyes. I laugh.  Now I would love for her to look exactly like she did. Ironic isn't it?

Everything changed the day she had her second cranial reconstruction the day after than picture was taken. I wish I could understand what went wrong. Even the surgeons can only speculate. I've given it much more thought than they and I now believe it is probably just a matter of bones being replaced in slightly different positions around the eye. Probably because they moved her brow and put bone behind the eye to imitate the absent part of her sphenoid wing. Ultimately it doesn't matter because what's done is done and here we are. There is no going back.  
To recap what I've posted in the past, the surgeon removed part of the sup tarsus and transplanted it to the lower tarsus. He shortened the levator (that lifts the eyelid) and brought up the lower lids with a canthopexy. The surprise was that he also removed 4-5mm of length from her eyes by cutting away some of her lids. Looking at her baby pictures I just don't see that her eyelids were too long and needed shortening. It was never discussed at our visits and I'm having a hard time with it. I am very concerned that with a smaller opening her eyes are going to look smaller, which is kind of the opposite of what we were trying to achieve.

Steve still thinks there is a fair degree of swelling and that things will improve. I think they may improve some but feel the changes will be minimal, and personally, am pretty sure that the surgery didn't do as much as we'd have liked. This is one situation when I would love to be proved wrong. Prove me wrong God (if you're up there), prove me wrong.  While I love her beautiful smile I would also like to be able to see her eyes when she smiles. I didn't think that was too much for a mother to hope for.

Dec 15, 2010

Tree Trimming 2010

For some reason I still have the My Girl song stuck in my head, and I'm still concerned about the result of Ainsley's eyelid surgery but I am trying to be patient even though I suspect the results are going to be disappointing. It's hard to focus on Christmas when I've got much bigger issues on my mind but we did manage to get a tree last weekend, and get it decorated. I have to say it was more exhausting than fun but you wouldn't know it by the pictures. I'm going pull out the fragile and heirloom ornaments and let the kids go at it next year. Maybe I'll sit on the couch sipping a cocktail. Kidding. Or not.

We put Ainsley in her walker so she could walk around the lot with us this year but we picked a tree really fast. She was so happy to be up and about she didn't want to get back in the car. It was neat that she could be out there, though it was raining a bit. 

Ainsley just LOVES Adrian. He's such a good brother! They had so much fun with this Folkmanis puppet, 3 mice wrapped in a present. All the kids love that thing. I think it's their favorite decoration, and just so you know you can still buy them in stores.  

This is a rocker that was mine when I was a girl. I have fond memories of rocking in it and singing along to a Glen Campbell record. Yep, I'm that old.

Miss Ainsley has started taking a few side steps while holding on, or aka cruising. It appears that she is feeling much better after getting those plates out of her legs. She's decided to start transferring herself in and out of chairs. Pretty cool stuff. I know her nurse, Carmela, has worked on that with her a bit, so I guess that gave her the idea. But she moved the rocker over to the couch so she could use the couch to get in. Pretty resourceful and clever I'd say.

She worked hard to get her feet into place and then slowwwly lowered herself down.

Relieved when her bottom hit the chair and not the floor.

She's so proud of herself and so are we. Then she did it over and over again. Mind you this is completely by herself. No help.

Evie did trim the tree but was more interested in performing the Nutcracker wearing the same slip she has danced in since she was 3. Ainsley had a blast pulling ornaments out of the boxes and hanging them on the tree. (Mostly the ones that required no hooks.) 

Then she got herself into the rocker again, this time next to the tree, so she could sit and admire it. She's now even rocking herself in it.

And from there she would squeeze the hand of the Santa from Polar Express, making it say "The magic of Christmas lies in your heart." I can't help but remember how long and hard we worked for her to gain the skill of being able to simply push a button. She did it over and over. I think Christmas is going to be quite magical for her this year.

Evie and Adrian had to go to bed but Ainsley stayed up with us since she needed her final tube feeding. But.... she was tired and boy were we shocked to see this.....

SHE did this. She's been climbing up and down from the couch too! By herself! And so...she got up on the couch, stacked all 3 pillows in place plus the fleece hoodie (I guess for extra softness?) and layed down with the stuffed gingerbread cookie to relax.  We couldn't get over it.

And the finished result. 

Now for the past couple days Ainsley keeps randomly pointing at the tree as if to say "_______?"

a) Look mommy isn't it beautiful?!
b) That was fun can we do it again?
c) Why is there a tree covered in junk in the living room? Why, mommy, why?

Dec 9, 2010

My Girl, My Girl, My Girl Talkin' Bout My Girl

I've got sunshine on a cloudy day....
Baa Da Ba-Da Ba-Daaa.
I love that she can be like this after everything she's been through. Just one week after having her eyelids cut apart, and massive plates removed from 3" incisions on each leg. No pain meds. Acting just like nothing happened.

Speaking of the plate removal....her legs are both swollen. She looks hippy for the first time in her life. The left side is oozing so we had ortho take a look today. They put steri-strips on an area that is coming apart. I still vote for nylon sutures. This is why. And look at all the blood and goop that is stuck underneath that dermabond. Ick. I can't believe that's not an infection risk.

We went in today for a VSS (Video-fluoroscopic Swallow Study) because I want to work toward getting Ainsley eating orally. She's been getting tastes since she was about 6 months old. I pushed, I've backed off. And we have made little progress. Though she has been showing more and more interest in food. In October I started feeding her orally before every feeding and she's averaging 12-16 spoonfuls. One day even taking 25 bites. But she fatigues. You can tell and she starts to refuse the spoon and ask for the tube.

Today's VSS results were what I expected, essentially no change. Other than that she is able to handle more bites than in the past. But she is still at risk for aspiration due to delayed timing of the swallow in the laryngeal phase. So we'll continue to follow her cues feeding her purees and thicken her liquids, watching for signs of aspiration. My hope is that things improve when the trach comes out.

Ainsley has been through a LOT in 4 years and has a fear of medical equipment. But today I was able to reason with her that the big thing on the arm that they squeezed in next to her was just a "camera". "They're going to take pictures Ainsley. Smile for the camera."  Then she was fine. It's so awesome to be able to reason with her and know she understands.

She had a fantastic time putting princess stickers on her shirt while we waited for the next x-ray, a shot of the soft tissue of her airway and soft palate. I do want to ask why the techs can never get the x-ray right the first time. Double the radiation exposure. Grrr. Anyway, we are hoping it may reveal what may be going on with the sleep apnea. Our follow-up with Dr. I is on 12/28 and we'll review the results with him them when he sees Ainsley to see if the Prevacid has helped reduce any swelling of her vocal cords. 6-8 weeks flies when you're having fun. Kidding. 

The swelling of Ainsley's eyes is MUCH better but still has a way to go. The jury is still out on what the final result will be to her appearance. I am still fighting daily against the urge to judge it, particularly when I'm cleaning her eyes. I know that even if the results aren't what I hope for that she will be okay. Like the title of Ainsley's blog, Happy To Be Me, that she is and I know she will always be. And I will hold onto that.

Dec 6, 2010

Trying To Keep The Faith

Ainsley's day started off with me cleaning crusted blood streaks off her cheeks.The swelling actually appeared worse but I think it just changed and maybe the upper lids are sagging down because there is less fluid, I'm assuming that's what the streaks were. The bruises are turning yellow so that that's a good sign that she's healing. After her eye ointment treatment, Tylenol and a cold compress she wasn't thrilled. She was back to being grumpy and clingy because her eyes were shut. I don't know, perhaps the eyelashes flipped back in again but I can't spread the eye enough to be sure because I'm afraid of tearing the corner of her eye.

I'm back to thinking maybe the lashes just aren't there. My fear is that he shortened her eyelids too much and she's going to have small funny looking eyes. I'm really trying to keep the faith and just wait until the swelling is down but I did have a freak out moment. The doctor said it'll probably be 3 months before we really know what it's going to look like. 3 MONTHS?! I'm not a patient enough person for that. It's really hard not to look and try to imagine what her eyes are going to look like. They are her EYES. It's kind of important. I think 3 months is a gross overestimation. I suspect we'll have a pretty good idea by next week and within a month at the most. Any changes that happen in months 2 & 3 are probably going to be barely noticeable.

As the day went on she opened her eye(s) a bit and was happier. The kids hitched a ride home with a neighbor who stayed for a homework party. Ainsley was happy to sit at the table and color. She must be able to see a little because she's not fearful and she's crawling around the house a bit.

We have an appointment at 3:30 tomorrow for the surgeon to look at the area that came apart. It looks a little better than it did because it's not a fresh incision, and the swelling has decreased since we first called him about it.  I'm not sure if there is anything he'll be able to do, but I hope he can get it back a little tighter in place so it heals in a nice thin scar.

She's still sleeping in our bed because her head needs to be elevated to reduce swelling and she normally sleeps on her tummy or side which is very scary in her current condition. Holding her hand while she sleeps was sweet at first but I'm getting tired and would just like a good night's sleep. Hopefully when we wake up her eyes will look better.

Dec 5, 2010

Twisted Eyelashes A Turn For the Better

Last night after calling the surgeon I had to call them again. As I spread her eyes apart to put ointment in them I noticed her lashes were tucked up INSIDE HER EYE! It was the freakiest thing to touch the area with the swab and have them all flip back out. About 1/2" worth. In case you've never noticed Ainsley has long thick lashes. This is something that can happen when the eyelids swell this much. Ouch! I was afraid that perhaps they'd scratched her eye which appear quite blood red and swollen. At the very outer corner I couldn't see lashes. I kept trying to get a better look but she was resistant and I was afraid of hurting her or further damaging the suture at that corner because it was coming apart. I called the surgeon to let them know about both the lashes that had come out as well as the missing lashes (which honestly I think they dismissed). They thought they wouldn't do anything until Tuesday, but said we could see the fellow (not the surgeon) on Monday.  It really looked like she was missing the lashes at the last 1/4" of her eye. Knowing they "shortened" her upper lid I was a little freaked out that maybe he cut off too much of her eyelid. But I tried tell myself to wait until I could really see the final result.

Dr. Sires checked in with us today and surprised us by saying he wanted us to come in today to see the fellow. So we got cleaned up and headed to their office to meet her at 3:00.

Ainsley was still pretty miserable but kind of happy to get out of the house. The swelling had come down quite a lot since yesterday as you can see she's looking pretty good.

I am so glad they brought us in to be seen. It turned out that those missing last 1/4" of lashes were still turned up inside her eye! Even the doctor missed it the first time she looked. Then she put some dye in her eye to make sure there were no scratches on her cornea and there weren't. Hooray! We'll be using lots of antibiotic ointment in her eyes to be sure she doesn't get an infection. And they want to see her back Tuesday to look at where that lower lid is coming apart.

Then we stopped for milkshakes and fries. Ainsley asked for some tastes and actually liked the shake. That's a first! I swear she opened her left eye a crack.

Then by the time we got home she was remarkably better.
She sat on the floor with Evie and Adrian and played catch. I think her left eye is open just a hair. I think she'd been squishing her eyes tightly shut because of the lashes. Poor kid. Sheesh!

Now she is acting almost normal.  We've been home an hour or so and she's allowed me to step away. Thankfully it appears she's released me as her hostage. I wasn't sure how we were going to manage when Steve wasn't home.  She still can't see very well. So I guess now we know what was causing the spikes of pain and the extreme clingy behavior.  My eyes sting and burn just thinking of it. I'm pretty sure we are going to see her bounce back really quickly now.

Dec 4, 2010

Ptosis Correction Surgery Recovery Day 2

It seems that the swelling peaked early today and then started to go down some. I'd hoped perhaps her eyes would open, but it doesn't look like they will. And unfortunately she is still very distressed at not being able to see. She panicks if I get up so we've been laying in bed all day.

We were told to do cold wet compresses for 10 minutes every 10 minutes. We did a lot at the hospital the first day and I started to notice the dissolvable stitches were coming out yesterday. By today they are gone. I keep telling surgeons that I don't like them because they don't last long enough.

I got up to get her food and told her to stay there, in the center of the bed. She must have panicked and crawled away from the center of the bed looking for me and fell out. I ran upstairs and she was sitting on the floor.  I looked her over and she was fine but she was bawling and the tears from her right eye were especially bloody. (This photo was taken an hour or so ago.) Since the swelling had gone down a little I very gently spread the lids so I could see and it appears that the corner of her eye is no longer stitched together and is separated where they did the canthopexy.  I called the surgeon and he assured me that if there is a problem he can fix it but for now there is nothing they can do because of the swelling. I'm afraid it will heal this way and leave a wider than desirable scar that they will say is "good enough". I can't help but think perhaps nylon stitches might have made a difference, but I suppose with this degree of swelling it might have torn. At this point we have to wait for the swelling to go down. I hope things go better tomorrow. The surgeon will see her Tuesday, Monday if it looks like it's more urgent but the swelling has gone down enough they could do something. Her legs don't seem to be bothering her at all.  We're supposed to keep with the ice packs but she doesn't like it anymore, I think perhaps it doesn't hurt enough that it feels good to her anymore.  She is just SO miserable and clingy. And I can't leave her alone even for a second. And she wants me, not daddy, Evie or Adrian.  I'm really hoping that the swelling goes down enough so she can see even just a little because I think that will make all the difference. I hope I'm not encouraging her dependence on me and making it worse by holding her all day and night. I just feel so bad for her and don't know what else to do. 

Dec 3, 2010

We're Home Now

We had a bit of a rough night. I was surviving on less than 5 hours sleep and Ainsley kept waking crying every 10-20 minutes or so just when I'd fall asleep. She finally started to settle about 2:30 am but then we got a roommate at about 3:30 am. Then the doctors started showing up about 6:30.  I think she was mostly unhappy to be there so I pushed to get discharged as soon as possible. We had the paperwork complete and everything packed up by 10:30am.

The boots were filled and we were on our way. It felt great to get her back in the stroller and push her on out the doors! 

I wish I could say that made all the difference. I would be lying. She is miserable. Mostly I think because her eyes are swollen shut so she can't see. She HATES that! I think the oxycodone is enough for the pain. All the memories are coming back, and I'm remembering how hard it was and will be again until she can see. My recollection is it takes about a week. The problem is she cries if I leave her, even to get up for a minute. I'm not going to be able to sit in bed with her 24/7 for a week. And the crying isn't good for the swelling.

Her eyes are SO puffy, even more so than this morning as you can see in this picture I just took.
It doesn't look too bad in the picture but there isn't much more it could swell. I'm hoping we are at the peak now and it will start to get better rather than worse.

Little cutie. She could hear I was taking her picture and I think she was trying to smile. A+ for effort Ainsley after what you've been through.

Dec 2, 2010

The Pic You've Been Waiting For

It is a very strange feeling to push an empty stroller around the hospital. I always hate that part. Sometimes I forget that Ainsley's not in it. During it all I try to remain stoic, but seeing her empty boots on the bonnet of the stroller while we were waiting for her made me feel a surge of emotion.

Luckily we didn't have to wait long, about then we got a page with our room assignment and after about an hour they brought her from recovery. It took about that much time for the respiratory therapist to get her trach supplies and equipment ready so the time flew. Ainsley seems pretty comfortable at the moment while she is still on morphine. Clearly there is a lot of swelling and she cannot open her eyes. We are doing cool compresses every 10 minutes. There is very little lid but I think that is because it is underneath the swollen part of her eye. I hope. 

The incisions look good. The keloid is gone.

This is what they removed from her legs. I don't know what I was thinking because I expected them to be thinner and smaller, but I guess it makes sense, these plates held the two pieces of her legs together while the bone healed. They are about 2 1/2" long, larger they are in this picture. It's no wonder they were bothering her. Geez how could you have those screwed into your legs and it NOT bother you?! I'm so glad they are out!

Hopefully we will have an uneventful night and be leaving after rounds in the morning.

Thanks everyone for your prayers and positive thoughts. It means so much to know how much everyone cares. We are so relieved that this eyelid surgery is behind us! If it's weren't against hospital policy I'd be having a good stiff drink right now. Oh will have to do.

They Are Just Wrapping Up

About 20 minutes after the page Dr. Sires emerged from the OR to meet us. He said things went great. He was able to use the tarsal grafts to prop up that lower lid. This, in addition to the canthopexy procedure, should eliminate the slanted appearance to her eyes (which was really more tissue related). He said he shortened the upper eyelid. ??! That wasn't in the pre-op consent form. You can bet I'll be eager to see what that means. He shortened the levator muscle, the one that lifts the upper lids. As is often the case for patients with ptosis, her muscle contains a lot of fatty tissue which is why it doesn't work very well. 

We will wait and see the results from this surgery. This may be good enough, or she may require a frontalis sling as the final step in correcting the ptosis. Yes, we knew that. It will be about 2 weeks before we can really get a good idea of the result, though I'm sure she is going to look really different right away, and 6 months before all is really settled and with the scarring and all and we can see the final result.  The scary part is over.

We are so seasoned now that 4 inch incisions on the legs and removing metal plates seems like no big deal. Crazy. Shortly meeting with Dr. Sires, Dr. Song paged us to meet him. Again all went well for the ortho team. There was a little fluid in the right leg, oddly the opposite of the one that had been bothering her the most, likely in response to the plate. They removed some of the keloid scarring and used the adhesive type closure. He said that part of the itching may have more to do with the hardware than the keloid and unfortunately the keloid may return (which I knew as patients that tend to form keloids, well...tend to form keloids). We'll be hoping it doesn't come back but it very well might. The last ones formed many months later so it will be a long time before we'll know for sure. Ultimately I just want her to be comfortable since something about those incisions has been really irritating to her for awhile now.

As I type this they are probably doing the brain MRI. We'd like to see how her cerebellum looks now that she's older and bigger, and since the two prior scans that were taken when she was a baby were different from each other. In addition it will be nice to see if everything else is in her brain developing normally.  There probably won't be anyone to read it for us, so we may not know for weeks but I'll post about that when I know.

We are waiting for her to come out of recovery and it always takes a long time to get your room assignment. 


Eyelid Surgery Started

We arrived for check in at 6:15, eventually we went back to the pre-op area and then met with 10 different people about all the things they are doing. Finally I walked her back and held her hand when she was put under in the OR at 8:55. The surgery is supposed to take 1 1/2 hours and we are still waiting for our page. Hopefully all went well. Then she'll be having the plates removed from her legs, and finally she will have the brain MRI. So it's going to be a long time before she gets checking into a room for the night. And we won't get to see her until it's all done. 

Evie and Adrian giving hugs. She LOVES her big brother and sister!

They made her a couple pictures to take with her and hang in her hospital room. It was sweet.

Waiting with trepidation.


They just paged us at 10:25. They were finishing up and the orthopedic team is getting ready to do their part, removing the plates from the hip and leg reconstruction that was done in April. They are also going to be removing this, which has been really bothering her. They marked her legs for the surgery today. With non-permanent ink. Sure enough she was scratching. The docs thought she was playing with markers at home. Nope that would be the ink from their pen.

It's going to be a long day.