Holland's Eyes

Holland had her 5th surgery today...the fourth on her eyes. When she still in the NICU (October 2004) she had laser surgery on both eyes for ROP, then a follow-up laser surgery on only her left eye a couple of days later. Just before her first birthday (July 2005) she had surgery to correct strabismus (crossed-eyes) and the doctor moved the inside muscle on both of her eyes. We knew going into that last surgery that there was at least a 50% chance that she would need another eye muscle surgery in the future. So, today we did it again.

This time she had two muscles moved in her left eye and one in her right. We initially decided to do the surgery because her left eye was still intermittently turning in, and being the weaker eye (significantly more nearsighted) is at risk for developing amblyopia (lazy eye). The hope is that if the eyes are better aligned there is an improved chance that she will use them equally well and will develop appropriate binocular vision with her glasses. Since we decided to go ahead with the surgery, we also decided to move a second muscle in each eye...the one that causes one of her eyes to roll too far when she is moving her eyes from one side to the other (which eye depends on which way she is looking). Her ophthalmologist told us that she would NOT do surgery to move those muscles only...but since we were doing the other muscle in her left eye we would do those at the same time.

I tried really hard to get some good before and after pictures to show everyone what I am talking about. It's difficult because she doesn't look at me when I take her picture! Often she will turn her face in my direction, but her eyes will be looking somewhere totally different. I had to tell her, "Holland I want to take a picture of your eyes. You need to look RIGHT AT ME!" The other problem is that close-up, with her glasses on, you can't always see the eye turn. It happens more when she is not wearing her glasses, is looking at something far away, or is tired.

Anyway...here are some "before" pictures.

You can see the left eye turning in slightly here.


Here is the eye roll thing...see how the right eye is rolling further then the left? If she is looking the other way, the opposite eye will do this.


And sometimes, like here, you can't really see the eye turn at all.


I promised Holland a trip to the toy store to pick out a new Scooby-Doo toy if she did a good job today. That was all it took, and she separated from us without any tears. It helped that she knows her eye doctor really well because she has been seeing Holland and Eden since they were tiny babies. Dr. Tisch said that Holland was very brave right up until she fell asleep. There were no complications with her breathing or vitals, and the surgery itself went very smoothly.

Recovery was a little rougher. There were a lot of tears, shaking, and shivering as she was waking up. She was pale and wanted to be held. Then she was upset because she wanted the IV and Pulse-Ox OFF. She wouldn't stop crying and kept asking for the "Doctor." "Doctor please take this thing off!" It took me a few minutes to realize that any time I mentioned "go home" she got more upset. I finally figured out that she didn't want to "go home!" She was expecting to go STRAIGHT to the toy store for that surprise I had promised. John and I immediately started saying, "okay, stop crying and drink something so we can GET OUT OF HERE." But every time the nurse would come by she would say "go home" and the tears would start again. Finally Holland told her she didn't want to go home, she wanted to go to the toy store. And the nurse responds, "oh you can't do that...you need to go home and rest and take it easy today." Thanks lady. I get what you are trying to say but you are not helping me!!!

We finally got it together enough that we could leave and we headed STRAIGHT TO THE TOY STORE. Well...she ended up throwing up in the car on the way there, again on the floor of Toys R Us, and twice on the drive home. But by golly she got that Scooby-Doo toy, and while she wasn't feeling great physically, and least she felt good emotionally.

We had a 6:30am arrival time at the hospital, and were home by 11:30am. She was exhausted by the time we got home and ended up taking a 4 hour nap. When she got up she had a bath and some lunch. Then she watched Scooby-Doo while playing with her toys and seemed pretty much back to herself.


Her eyes are bloodshot and puffy, especially her left, but overall I think they look pretty good and straight. We'll have a better idea in a couple of weeks what the end product will look like. But you know, I thought she was beautiful before.

And I think she's beautiful now.

In Her Words

I printed out a copy of the "I Hope You Dance" post with your comments for Miss Darcy. She left a comment there, and I am going to repost it here so everyone who has been waiting for an update can read it.

Her amazing spirit comes through in her words.

"hi,this is miss darcy. i would first like to thank everyone for all of the well wishes! i especially would like to thank billie for writing about this. i can't tell you how lucky i consider myself to have been able to teach your girls this year! every time i would talk to my mom about how well the class was going and how proud i was of eden and holland, my mom would begin to tear up. it is of no surprise that on the night of the performance there was not a dry eye in the house when the curtain opened on the those 5 little girls. i have taught for 16 years and every now and then i am blessed enough to have moments like that! as far as my health goes... i am doing just fine! :-) i have a lot of work ahead of me, but by this time next year i should be back to normal! i fully intend on starting the dance season again this year as soon as i am on crutches. i will be in a wheelchair for a while and great minds must think alike because i felt the same as eden did when i was told! now i'm just going to have to find some stickers for my wheelchair to try and make it even half as cool as hers is!:-) thank you again to everyone and don't worry, i've already started thinking of ideas for eden's and holland's dance performance for the 2010 recital! we will all dance again!:-)"

Thank you for your comment Darcy. I am so happy to hear that you are doing so well. You are truly an inspiration to me and to my girls and we will continue to keep you in our thoughts.

Looking forward to the 2010 dance season!

And just in case you need a little boost today...here's a picture guaranteed to make you smile.


LOL

2 Cute 4 Words Wednesday

I Hope You Dance

When I was pregnant with the girls, I printed out the lyrics to the song "I Hope You Dance" by Lee Ann Womack and posted them near my desk at work. Since my girls' birth, I want to cry every time I read the lyrics, or hear that song on the radio. I had hope for the child that I did not yet know when I was pregnant. Now my hope for them is even deeper and more intense..both literally and figuratively. I hope they dance.

Holland and Eden's first dance class meant a lot to me on many levels. More than I even knew. I had kind of put it off...thought it wasn't a real possibility and did not feel up for another fight. I was sure I did not have the reserve for rejection in any form, and for that reason I decided not to pick this particular battle. I was afraid. Afraid of what I might face in asking if the girls could join a "normal" dance class. Afraid of the negative or fearful attitudes of parents and teachers that I might come up against. Afraid that having them in a dance class might make people uncomfortable at some level, and hence make me and them uncomfortable. It didn't seem worth it, even though I wouldn't have admitted that out loud.

What happened instead, is that my sister approached her girls' dance teacher and asked if she would be open to having my girls in the Petites class (ages 3-5) with two of their cousins (Claire and Kate). The teacher, Ms. Darcy, was very open and encouraging. She changed the time of the class so we could attend, and enlisted the help of another cousin (Jenna) to help Eden.

I was nervous going into it. It was something new, and I wasn't sure what to expect. Well, ultimately it turned out to be a very positive experience for all of us.

The program was just right for us in that it was not too over the top. I had imagined a group of picture perfect little girls in tutus, in a perfect little studio dancing in front of a mirror with a bunch of stage moms there to put their child's hair back in place if their pony tail slipped or to fix their makeup if their lipstick was smudged. Not for us. Instead it was a community education based class, affordable, with kids from a variety of backgrounds. It was held in the cafeteria of a school that runs a Headstart program. It was low key and low pressure, but at the same time organized and very fun!

A huge part of the reason the whole experience was so positive for us was Ms. Darcy. Darcy is young (in her mid-twenties), and clearly passionate about what she does. She teaches at the middle school level, in addition to teaching dance for several years. From the time we first met her she put my mind at ease. She was interested and completely willing to accommodate whatever needs Eden had..though it turned out she didn't need a whole lot. Eden just wanted to dance.

Some people don't know how to interact with kids who have disabilities. Ms. Darcy was not that way. From the first day she "clicked" with the girls, and appeared very confident and capable when working physically with Eden. More than many people, she really seemed to treat her just like all of the other girls. She challenged her, praised her, and even reprimanded her on a couple of occasions:) I never once felt like she felt "put out" in any way by having us there and I appreciated that more than I can say. She loved and accepted the girls, and they loved her right back. There were many, many evenings that they requested that I *be* Ms. Darcy so we could pretend to be at dance class!

Unfortunately the girls were sick, sick, sick in the days leading up to their recital. They were diagnosed with pneumonia on Tuesday and started antibiotics - the recital was on Saturday. We were just barely better *enough* to make it, and I fully admit to doctoring them up a bit so we could do it. I timed the breathing treatments, Motrin, meals, and naps so they would be feeling as well as possible and it worked out pretty well.

There were a few technical difficulties with the lights and sound, and one of the little girls in Holland and Eden's class flat out refused to go out on stage. She was the only girl who wasn't their cousin, so it ended up being five little girls from my family:) Despite these little glitches, the girls managed to do a good job and entertained us all.

They were ABSOLUTELY ADORABLE!!! They were the cutest kids in the show!!!

Okay, okay. That might just be my opinion. But, I was very proud because they both went out there and did their best. Eden was a ham. She remembered a lot of her moves, and looked to the bigger girls when she wasn't sure what to do. She had a smile on her face the whole time and was very excited to be on stage. Holland was not as sure of herself. She stood in one spot and chewed on her fingernails until her cousins took her hands and dragged her along. At the end of the show, they were all supposed to march off the stage. Holland stood there like a statue until her cousin Jenna came back to get her. When Jenna picked her up, Holland wrapped her little body around her and gave a big smile to the audience. It was really adorable. And uncanny in the fact that John predicted to the tee how they would act on the stage! I am pretty sure we would have had the same reaction if they had been completely well. Eden is a ham, and Holland gets a little overwhelmed when she is the center of attention.

No matter how you look at it...they danced.

THEY DANCED.





**On a more somber note, I cannot write a post about Holland and Eden's dance recital and not mention some recent tragic news. Just this past Sunday I got a call from my sister to inform me that Ms. Darcy was in a horrible car accident the night before. She has lost the ankle and foot on one of her legs. It looks like they will be able to save her other foot, although I am not sure it is out of the woods completely yet.

I have been feeling very sad the past few days trying to absorb this news. There is so much in life that is so scary, unpredictable, and completely unfair. I don't even know what else to say. I told Holland and Eden about the accident today. Holland asked the question, "so she can't walk anymore?" And Eden chimed in, in the way that only she could do, and said excitedly, "Ms. Darcy can just use a wheelchair like MEEEE!"

I told Eden that maybe she would...but just for a little while. Because I KNOW Ms. Darcy will walk again. I know she will dance again.

Ms. Darcy -

I HOPE YOU DANCE

Too Cute 4 Words Wednesday

Bring it On

Okay, okay. So thank you for allowing me to get that little rant out of my system. My general outlook has been much sunnier the past few days (even though my house is still trashed).

I ended up taking the girls back in to the pediatrician on Tuesday last week and they were both diagnosed with pneumonia. On top of that, Eden had an infection in her left ear. So there was a reason why everyone was so crabby and whiny at our house for so long. Poor babies. We started a course of antibiotics Tuesday evening. By Thursday things started looking up, and by Friday the girls were back to their normal silly selves. It was a pretty dramatic change once they were feeling better. One day they were both laying around moany and needy for my attention, and the next day they were entertaining themselves and playing together again. While this sickness did make my last two weeks of work rather stressful, I am very happy that they were feeling better by the time my vacation really started. And it's the *first* time that they have actually been diagnosed with pneumonia that they have NOT been hospitalized ... Progress~! We're still waiting for Eden's appetite to kick back in, but that's another post.

For Mother's Day John got a new bike (I already had one) and we bought a bike trailer so that we could start going on bike rides. I really loved riding as a kid and for several years I have been wanting to try it again but never seemed to get around to it. Well, on my "girls' trip" to California this year we went for a bike ride. We rode to brunch (saw Carson Daly!), then to the Santa Monica farmer's market, then along the beach back to my girlfriend's place in Venice. It was awwwesome and I realized again that I really do like bike riding. This weekend we had a chance to really try it out as a family. We packed a picnic, loaded our bikes into our super-convenient minivan with a ramp, and went to a nearby park with some nice paved trails and a bit of "nature."

I'd be lying if I said it was "perfect." The girls have a little trouble sitting that close to each other for long stretches of time. As many kids do, they start antagonizing each other, whining, and fighting. But, all-in-all it was a beautiful day and I really enjoyed spending some nice, relaxing quality time with my incredible family. It helped me decompress, clear my head, and put my life back into perspective. The workout was great too!

So after a much happier and healthier weekend, I think I can say that I'm ready for summer.

Bring it on!

Moan Fest

Two more days of work for me, and I'm done for the summer. Well...as done as I can ever be. In fact, looking at the calendar this evening has me completely overwhelmed with just how busy I am going to be! At least it is SUMMER and the weather will be beautiful and we can get out of the house more. Warm weather and sunshine do a lot to boost my spirits, even when the rest of my life might not be operating so smoothly.

I promise a full review of the girls dance recital as soon as I can compile the best pictures from my mom, my sister, and my own cameras. Unfortunately we weren't allowed to use a flash so my pictures didn't really turn out well at all:( We still haven't recovered fully from this recent sickness, but they were well enough that it wasn't a total bust so that is good.

Let me just say that we have had quite a week trying to kick this bug and it hasn't been pretty. Fevers were up to 104 and lasted a good 5 days. Once the fevers finally went down the nasty coughing and breathing treatments began. Appetites have been pretty much nonexistent for approximately 8 days, which really, really wears on my mental well being. Without weighing her (because that would just put me over the edge) I would say that Eden has lost at least a pound and a half. Besides feeling miserable, the girls have also been very tired and took 3-4 hour naps most of last week (see, there is a bright side!).

They ended up missing the entire last week of school, the end of the year preschool picnic on Friday, and a preschool friend's bday party on Saturday afternoon. They were invited to two parties this year, and we missed both of them due to sickness.

At least I was able to put some of that nap time to good use to tie up some loose ends:
*I hired a new lawn service.
*I scheduled Holland's eye surgery for July 10th.
*I scheduled an OT eval for Holland next week to get her set up for hippotherapy over the summer.
*I made an appointment for repairs on Eden's power chair, and to pick up her new Rifton Pacer.
*I canceled our diaper service and duocal shipments through medicaid because we aren't continuing it after June 30 (the premium doubled and we don't think the extra cost will balance out).
*I ordered batteries for Eden's cochlear implant (while we still have the Medicaid).
*I vacuumed the family room and the amount of dog hair left in the vacuum was completely embarrassing, as it will also be next time I am sure.
*I put away the winter coats, scarfs, hats, and gloves.
*I folded some clothes and started working on the big shift from winter to summer clothes. That's a big job.

Unfortunately the list of things I still need to do is even longer than that. Paying bills, sorting and filing paperwork and mail, laundry, dusting, dishes, mopping, find a way to get rid of the broken hot tub, collect and relocate the mama cat and 4 kittens that are currently living under the broken hot tub. All with two sick little girls needing attention.

Well, this quickly turned into a big moan fest, which wasn't what I was intending when I sat down. But...it's been a stressful week. So there you go. Summer is coming, and it can only get better. Right?

Sickos

The girlies are both sick with high fevers, mild congestion and coughs. This wouldn't be such a big deal, except that they have had to miss their entire last week of preschool. It's so sad! I was totally looking forward to tomorrow, dressing them up and taking a picture in front of the house so I could see how much they have grown and changed since their first day of school. Instead we'll be dosed up on Motrin, laying on the couch in our PJs watching movies all day.

I'm still holding out hope that they will be well enough to go to the end of the year picnic at the park on Friday, and also that they will be feeling up to performing at their dance recital on Saturday. Oh what bad timing:(

Get better soon girlies!!!