Muscle Surgery

Over the winter break I started noticing Chloe close her left eye whenever she read books or looked at pictures. My parents happened to be visiting at the time and they noticed, as well. Chloe's vision changes with the wether (literally) so I watched for a few days but after a week became nervous. I moved up her appointment with Dr. Bloom and he decided it's time for another muscle surgery. The problem was that her left eye was turning in again and this made it difficult for her to use both eyes together. The thought is that adjusting the muscle so that both eyes can point straight and she can more easily use them together. This is her second muscle surgery. She had good results after the first one so we're hopeful.

This was right after she fought tooth and nail against Dr. Bloom marking her left eye with his marker. She can be such a little turd.

 Chloe was so funny after they gave her the first sedative. She was acting so silly, drooling, giggling, and unable to sit up. I couldn't help but giggling at her.

There's something so sweet and innocent about sleeping children. Add an IV and hospital gown to the mix and your heart just melts.

Eye Update and Second Opinion

We've had two appointments since my last eye update.

1. Visit to Chloe's Ophthomologist. Her pressures were fine. She did much better with the pressure test, too. I was incredibly impressed because I don't think there are many kids who would easily let a tech pry their eye open and touch their eyeball with a metal instrument. I informed her doctor that I'd made an appointment with a glaucoma specialist in Cincinnati. This was contrary to our previous agreement where he had suggested his friend/colleague in Columbus. He expressed great pleasure in my choice of doctors and said he likes this doctor a lot. Then he prescribed Chloe's patching be increased to 4 hours a day. I was less than thrilled with his new order but we definitely don't want Chloe's right eye to take over nor do we want her left eye to 'give up.' Chloe now wears her patch at school twice a week. I was apprehensive about that at first but, being the trooper she is, she's handling it well. Chloe never takes her patch off. That wasn't a concern. I was mainly worried about her ability to navigate and participate. I know it's more difficult for her but she never complains. Every once in a while she suggests that I cover the eye instead. She knows she can see better with her right eye. Little stinker. I feel badly when she tells me that she doesn't like her patch but I just tell her that's it's important to wear her patch so her eyes can get stronger. She accepts that and dutifully wears it four hours a day.

2. Visit to the Cincinnati Eye Institute. The facility is beautiful. The doctor was wonderful. Chloe had an eye exam like a big kid and looked through the instruments. She had to stand on the chair in order to rest her chin and forehead and look through the big instrument that we all look through at our eye exams but I sat behind her and held her by the waist. She took her dilating drops like a pro - impressing everyone as usual. The doctor was satisfied with Chloe's pressures but did note a slight elevation in her left eye. That was to be expected. She was also happy with Chloe's current coarse of treatment. Her only suggestion was to make sure the pediatrician and pulmonologist are aware that she's on Cosopt because it's a beta blocker and could have a negative affect on her is she still has pulmonary issues like asthma. She also suggested we try different drops. Cosopt has two meds in it and we might consider a drop that has only one medicine. Maybe we could try it for a week before her next examination under anesthesia? Then we can check to see if it's good enough to keep her pressures down. If we can get away with medicating her less that would be good.

That was it. I'm glad to have gotten a second opinion and this new doctor said to feel free and contact her if we have any questions in the future. We won't be following up with her. I only wanted a second opinion. Her current Optho treats for everything that the Cincinnati doctor could treat but it's awfully nice to have the peace of mind that we did it. And also to have made a connection if we ever want to seek out advice again.

Reality Check

I say this over and over again but it's a constant in our lives and something we must always be mindful of. People have no idea how poor Chloe's vision really is. I would say that she "adapts" very well but she doesn't know any different. If I were to switch to her (corrected) vision from my current state I'd be walking around with my arms outstretched trying to make sure I didn't bump or trip over anything. Chloe, on the other hand, is a three year-old who isn't nearly as fearful as am I. And she's used to it.

Yesterday I took her contacts out at night and she ran off as I was cleaning her glasses. Something distracted me and 10 minutes later I realized she still wasn't wearing her glasses. Seriously! This kid can't see without her glasses! Her vision is BAD. B.A.D. BAD. You'd never guess based on the way she was running around playing. When I realized my mistake, "Chloe! You have to tell Mommy when you can't see! You don't have your glasses on!" I half scolded, half pleaded. "What?!" (Sounds like "What I do wrong?") She just doesn't get it. I just don't get that.

The other day I was decorating the Christmas tree with the girls. I sat with the giant bin of ball-shaped ornaments and handed them to Solana after I attached the hook. Chloe, who was previously occupied by dancing to holiday music, decided she really really wanted to help. I was trying to think of something ability-appropriate for her to do when she started grabbing for the ornament in my hand. She made it very clear that she wanted to do what Solana was doing. I wasn't thrilled about handing her a pokey paperclippy thing but also wanted to let her try. I held the ornament by the hook to hand it to her but she immediately grabbed for the ball. I tried to guide her hand to hold it by the hook and she wouldn't do it. We tried over and over but she insisted on grabbing for the ball. It was like a funny little hand wrestling match we were having. 

She definitely wanted to hang the ornament on the tree - not play with it - so I needed to teach her how to hold it by the hook. The problem was that she wasn't even aware that the hook existed. Finally I was able to slow her down enough to guide her fingers and "show" it to her. At that point she "got" it and knew what to do. Every time after that she reached for the ball with one hand and used her other hand to feel for, find, then guide her fingers up to the end of the hook. 

Watching her do this was a big reality check for me. Her motion was so...blind. It's how I would have done it with my eyes closed. I felt really emotional over it. She has no idea that she's different or that she can't see what other kids see. But I do. It's my job to make sure she gets the most possible out of every situation, even if she can't see as well as other kids. Chloe makes it easy to forget my job sometimes but other times she can't help but display her special needs. Reality checks are good and necessary. We always need to keep her moving forward but we need to remember our job of helping her do so because this world isn't exactly designed for a little girl like her. 

But to be fair to the world, it hasn't ever seen a little girl quite like her. 

Eye Pressure Down After a Month

It seems Satan's Tears are working. After one month of Cosopt drops the pressure in Chloe's left eye is down. During her in-office check-up today her doctor didn't think she'd be cooperative enough to get an accurate reading with the little pen thingy and felt comfortable by pressing on her eyes with his thumbs. He said her eyes "felt" good. Not that I have any reason to doubt the man. He IS a pediatric opthamologist at Children's and has experience with these cases but I went ahead and insisted on getting a pressure check with the little pen thingy that they would use to touch the front of her eye.

I knew it wouldn't be pleasant and he warned that the reading might not be very accurate if she's fighting and trying to squeeze her eyes shut but I really wanted to give it a shot. I'd been waiting a month for this reading and really wanted the reassurance. First they gave her drops to numb her eyes and then touched the front of her eyeballs. It didn't go great. She cried and fought. I assured her it wouldn't hurt and tried bribing her with the promise of granola bars at home if she didn't cry. Bribery didn't work. She cried and fought and then requested her granola bar after. Fortunately, they were able to get a decent reading. The pressure in her left eye was down from 30 to 19! Whew! This is an acceptable pressure and I'm very relieved! (Pressure at 30 leads to blindness. Pressure below 23 is acceptable.) The pressure in her right eye read 26 but that may have been because we did the right eye second and she was fighting even harder. Her right eye has not had a cataract and has no risk factor for glaucoma so we agreed that it was a false reading caused by her struggling. I was satisfied.

I also chatted with the doctor about getting a second opinion or "second set of eyes on her case," as I put it. He was very agreeable but warned that the doctors I suggested, one being his mentor who he thinks the world of (as he should because this guy is a world-renowned retinologist) and another being a younger doctor who's "growing on" him, are retinologists and not glaucoma specialists. He said there aren't any pediatric glaucoma specialists in the area but he does know a glaucoma specialist in Columbus who doesn't usually see kids but will in Chloe's case because they're friend/colleagues. I agreed to do one more in-office exam and then another EUA in 3-4 months. After that, and with more information gathered, we'll talk to the doctor in Columbus. I'm ok with that. But I'll probably call Chloe's retinologists in Cincinnatti and Detroit just to see if they have any other suggestions.

It's difficult to know what to do in a case like this. I wish he'd said, "Sure! There's a great pediatric glaucoma specialist an hour away in Cincinnatti. I'll refer you there so you can get in soon." But that wasn't meant to be. I don't have any reason to think he wasn't offering the best possible option. He seemed completely cooperative but hesitant to send us to someone who doesn't know as much as he. That's reasonable, right? Then why do I still feel like I need to do more?

Funny Lost Contact Story

Background. We were just at the hospital on Tuesday picking up Chloe's new contacts (new RX). Today was her second day in her her new lenses.

I just happened to be at the school for a Homeroom Parent meeting today when I got a voicemail from the school nurse. "Hi Mrs. Hendrickson. I just wanted to let you know that, when we were giving Chloe her daily eye drops, we noticed Chloe's right contact was missing." I keep Chloe's glasses, contact case, and plunger in her backpack every day just in case this happens so they took out the left lens and put her glasses on.

Normally I would just say "darn" and pull out a new lens but since I happened to be at the school I headed down to the class and proceeded to crawl all over the floor. What else was I going to do for 10 minutes while I waited for school to get out? The class just happened to be at music so I had the room all to myself. The classroom aide helped but we didn't find it. Then she suggested that maybe Chloe lost her contact at the gym. I still had a few minutes and thought, "what the heck." The gym teacher volunteered to sweep the entire gym looking for it! I felt so bad but he didn't seem to mind. When he finished we picked through the dust of his big custodian-style broom. Hair clip, stickers, chunks of mud. Lots of dust but no contact. Oh well. It was worth a shot.

As we were driving home I got an excited call from Chloe's teacher, "We found it!" "NO WAY!" I immediately flipped a U and headed back. Chloe and I raced to the classroom and, sure enough, there it was. "Hooray!!!"

It was obviously stepped on. Cracked.

Hernia

I took Chloe to see the surgeon that placed a penrose drain in her abdomen at 19 days old. The penrose drain was basically a soft tube that they placed in her abdomen and left part of it hanging out of her stomach. Its purpose was to drain fluid/poison that had released from her ruptured intestines and into her belly. I'm convinced that the ruptured intestines were caused by endomethicin, the drug they used to try and close her PDA (open heart valve). The Endomethicin didn't work to close her PDA; she still had to have surgery for that. But it did pop a hole in her intestines. I hate that stupid drug. If only I knew then what I know now. What a nightmare that day was. I'm pretty sure I've never cried so hard before or since.

This is our second post-discharge visit to the surgeon. The first visit was a routine post-discharge visit and at it he warned us that she might get a hernia at the spot where the penrose drain was placed. Last weekend we noticed she was red all around the scar and there were a couple of little bumps that seemed to be sticking out. The surgeon inspected the spot and can't feel a "clinical" hernia but suspects that she's working on one. It could have just been a little bit of fat tissue poking through and the red could have been unhealthy tissue making itself known. Any unhealthy fat tissue will probably just dissolve away so that's not too much of a concern.

He recommends, though, that we keep an eye on it and come back if we see anything bigger sticking out or if the redness continues. She'll almost certainly need to have another surgery where they basically re-do the scar. Right now it's kind of a nasty indented and jagged C-shape with lines coming out of it. He'll cut a football shape around it and then sew it all together to make a sturdier and cleaner scar that won't herniate. We should do this during childhood and before Chloe goes through puberty and, as he described it, could "potentially thicken in the middle" making it a more difficult surgery. It's funny the reaction a mom has when someone suggests their kid could become chunky. I was slightly offended to tell the truth. Does that say something bad about me?

Anyway, it's another surgery to think about. We should do it during childhood but there's no urgency right now. The good news is that we could get the Opthomologist to run in for a quick eye check during that surgery when we have it. Like an EUA freebie. (Not monetarily but anesthesia-wise.)

And speaking of her eyes, Dave and I are considering taking Chloe to a glaucoma specialist. We're happy with her Optho but are just considering whether or not we want an extra opinion.

Glaucoma

Chloe had her annual EUA (Exam Under Anesthesia) this morning. I was nervous as usual. There seem to be changes every time. Last time she had a dramatic RX change. Her right eye got a lot more near-sighted. 

Today she did really well prepping for surgery. The nurses were amazed at how easily she took her eye drops. She's well-practiced at getting drops, though. She gets them from me and the nurse at school every day. They're just re-wetting drops to keep her contacts from drying out and irritating her but they're good practice for all the drops she gets on surgery day. She gets 12 total. Two drops in each eye of each: numbing, dilating, and antibacterial, I believe. They all loved her. She's very charming. Even when she says, "no way" to a simple request.

Here she is heading off to her procedure. Kitty kept her company. Kitty is a boy, by the way, who is still referred to with all female pronouns. I find it very confusing and keep thinking 'he' is a she.

Anyway, enough with the fun little memories. Chloe was diagnosed with glaucoma today. Her right eye pressure was 13 and her left eye was 30. Under 23 is ok. 30 is scary and can lead to blindness. We have to get that pressure under control. She has to work hard enough to make it through the day with partial vision in her left eye. I don't want her to have no vision in that eye. The doctor prescribed medicated drops (cosopt) to try and lower the pressure. After doing a little research I read that the drops burn likeamother (one website called them "satan's tears"). Great. But when I called the doctor he said that's probably more common in older adults who may have dry eyes. She gets one drop twice a day. I put the night time drop in after she was fast asleep and that went well. I'm not sure how I'll handle the morning drop, though. 

Fingers crossed that they work for her without any of the scary side effects listed. We're going back in a month and he'll touch her eyeball with a little pen to test the pressure. I'm REALLY looking forward to that. Let me tell you. The doctor said he thinks she'll be ok with it since she's used to me touching her eyes so much. I sure hope he's right. Me reaching into her eye at home usually has a different reaction than someone else reaching toward her eye in a doctor's office, though... There might be a little wrestling and perspiration involved but we can't be putting her under gas every month so we don't have much of a choice. 

Hoping for the best. Also terrified. Worry is my middle name.

Oh, I almost forgot about the other fun memories. We got out of there at about 11am. Chloe couldn't eat before anesthesia so at that point she had only consumed 1/2 cup of apple juice and a couple of graham cracker packets. She charmed the second packet from the nurse but it was time to go when she finished the second packet. She was hungry and less than pleased when I deprived her of a third packet. She was very charming on the way home. I don't think I've ever seen her so hungry. I'm glad today is over. I'm going to bed.

Glasses

First Day of School in Glasses

Chloe's Eyes Update

Amidst all the excitement over Solana's new glasses I forgot to mention Chloe's eye exam report. But first I'd like to mention how awesome it is that Chloe's vision exam is so unremarkable that I failed to mention it at all!

Chloe is still favoring her left eye (the one from which they removed a couple of cataracts) and turning her head to the side to settle the nystagmis. The big concern is that one eye will take over and the other will give up. But she seems to be using both eyes. No patching order again and Dr. Bloom thinks she's stable enough to see her again in six months. That's the first time we've gone more than three months without a visit.

We still don't know what the future will hold for Chloe's vision. Our hope is that her eyes really are stable and that she just has to work on dealing with the vision she has now.

Getting Closer to School

As we get closer and closer to Chloe's 3rd birthday I'm getting more and more nervous. Scratch that. Terrified. My biggest concern, of course, is her vision. Chloe can either look out in front of her OR down at the ground. She can't do both. We're usually in a safe and familiar environment - our house - but when we're in a new environment she'll either trip on something or walk into something. She does it regularly. Chloe also has issues with balance so she tends to move quickly. I know that seems odd but moving slowly means she can lose her balance and fall over more easily. If she moves quickly and has some momentum behind her movement then she's less likely to wobble and fall over.

Pair her quick speed with her inability to see obstacles and you have a recipe for disaster. Now I know what you people with typical kids are thinking. You're thinking that toddlers are just clumsy and that your toddler has also fallen down, walked into things, tripped, etc. But please don't get my blood boiling by telling me about it. I know you mean well but it's.simply.not.the.same. Without close supervision Chloe will walk into things and smash her head on corners of tables, door frames, chairs, walls, people's knees, you name it all the time. She even falls over after standing up half the time. She's tough. She's really tough. Solana cried the other night because she scraped her foot climbing down from her bunk bed. I was glad Dave comforted her because, let me tell you, I was having a hard time mustering up sympathy for her. Chloe hurts herself like that a dozen times a day. Three times she's run into a door frame so hard that she was hurtled backwards and hit the back of her head on the other side of the door frame. Her vision therapist told me that if she hits the back of her head she could damage her vision even more. I can only imagine if Solana slammed her head into a door frame the way Chloe has. We'd never hear the end of it.

We had a party for Dave on Saturday and there was a little boy two months "younger" than Chloe (he should be two months older than her) running around weaving his way through the crowd. There were 45 people in our house. And I thought to myself, "There's NO WAY Chloe could do that." Oh, she'd try. But she'd fall on her butt several times, fall on her face several more, get kneed in the face, run into a chair, plus more just on her way through the crowd one time. How on earth is she going to get along in a classroom with kids who can do what he just did and where the teacher is also watching a dozen other kids? How many times will she smack her face on a shelf that she didn't see and I won't ever know about it? She's talking really well and, unless you know what to look for, you could easily forget that she has a vision impairment. But I know her better than anyone. I know to warn her when she's moving too quickly without looking where she's going. I watch her like a hawk outside of our house. I follow her up and down the playground equipment because I know the different circumstances that she loses her balance. Who's going to do that for her at school? I know I need to be able to let go. But at what cost? Ugh. I'm about to start bawling right now.

We haven't had a transition meeting yet and I haven't observed the preschool classroom. I expect and hope that many of my fears will be eased during those meetings. Chloe's EIS and PT were telling me today that Chloe will have IEP (Individualized Education Plan) and I'll put goals on it like, for example, "Learn to Safely Navigate Her Surroundings." They assured me that Chloe won't be just thrown into the mix and have her special needs forgotten.

Here's my plan so far:

-Visit the school before the year is over.

-Work up a list of questions for her transition meeting.

-Make sure Linda (Vision Therapist) is at the transition meeting.

-Request that her Vision Therapist accompany her on her first few days of school.

-Request the Mobility/Orientation person work with Chloe to orient her to the school.

And finally, drink wine. Lots of wine every night after the girls go to bed.

Vestibular System

Vestibular is a word I never heard of until Chloe's Vision Therapist, Linda, brought it up a few months ago. It involves the inner ear, which sends signals to our neural structures that control eye movements. It affects our balance and ability to stay upright. A much better and thorough explanation can be found here.

The whole concept is little fuzzy to me but Linda has always been adamant that Vestibular Activities are very important for Chloe. I know that she loves them but didn't really comprehend the importance until recently.

• A little background on Chloe's vision: It's inconsistent. We never know what it's going to be from day to day. Some days she's great and others she's...off. The thing is that Chloe adapts amazingly well so sometimes we don't notice. She could run around the house blind-folded and, unless we looked to see the blindfold we wouldn't even notice. For example, a few days ago I made a horrible mistake. I put her contacts in the wrong eyes. One eye is severely far-sighted and the other is extremely near-sighted. You can imagine that I basically made her blind for the two hours that she wore them that way. We played in the living room for a while. She ran around picking up and playing with toys like nothing was wrong. In fact, I think she even watched a little Dora while I got dressed. Then we went out to breakfast with my friend, Angela. I handed Chloe some paper and crayons and she put her face right into the paper to color and then lost interest pretty quickly. It wasn't until then that I noticed anything was wrong. If I hadn't handed her something that absolutely required vision - something she hadn't already memorized - I might have let her go all day like that without knowing.

We spent a week in Houston around Christmastime and returned to Dayton shortly after. Texas was sunny and wonderful. Chloe's vision is actually better on sunny clear days. When we returned to Dayton it was cloudy and gray. After a day or so, all the good vision energy she'd built up in Texas wore off and she started stumbling around like she'd just stepped off a boat. It was disconcerting to me. I thought about vestibular and put Chloe in the "Bubble." Chloe previously hated the Bubble but I had her lay in it this time to feel more secure and...it helped. It actually helped! And she loved it!

I talked to Linda about it and she wasn't surprised to hear that Chloe's vision went downhill after returning from sunny Texas. She's planning a move to Florida and, being visually impaired herself, is thrilled at the idea living somewhere that's always sunny. It's like a new world opens up for her when she's there and I can see her eyes twinkle when she describes the crispness of her vision in Florida. She said that she needs vestibular exercises every day and has 4 swings at her house. A while back she had to have neck surgery because she injured her neck after years of tilting her head. For six weeks she was miserable because she couldn't do any swinging. She couldn't sleep. A little light started flashing in my head when she said that. "Vestibular exercises help you sleep better," I asked. Absolutely. I thought about the fact that Chloe's been skipping some naps and taking longer to fall asleep - tossing and turning a lot. It didn't seem unusual to me until Linda's comment.

The next day I put Chloe in the bubble before her nap. She normally naps 1.5 hours. She napped for 4 hours that day! We've been focusing more on the bubble and other vestibular activities since them. Some others Linda recommended are:

1. Swinging in a blanket - Two adults hold the ends of the blanket and swing side to side and even up and down.
2. Log Rolling - rolling across the floor or a mat
3. Crawling - and rocking back and forth while on hands and knees (something Chloe used to do a lot when she was a crawler).
4. Swinging - Chloe could swing for hours. We're considering installing a swing in our house but aren't sure about the bolting system required and expense. And with Spring on its way we'll probably be getting outside more. We'll see...
5. Therapy Ball - These are those huge balls that you see people sitting on instead of chairs. Kids can sit on it and bounce (with adult support) or gently roll back and forth.
6. Sit and Spin - Chloe loves any type of spinning. She'll stand in the living room (usually close to the entertainment system) and spin and spin and spin.
7. Mini Tramp - We're still trying to teach Chloe to jump but she's getting closer every day and loves practicing on her mini trampoline. Sometimes I carry her while jumping on it.
8. Stroller - Chloe's OT and PT mentioned that riding in a wagon or stroller also provide vestibular input. It got up into the 50's outside yesterday so I bundled Chloe up and we went for a jog. 40 minutes at jogging speed must have done the body good. She slept in an hour and a half this morning.

A little non-traditional bubble play

Solana is spinning Chloe by placing her finger in one of the holes and then spinning her. Solana doesn't normally do the spinning but she loves showing off and being in front of the camera so we let her this time.

Sometimes dollies, stuffed animals, and blankies get the honor of joining Chloe in the bubble.

When I spin Chloe I spin her FAST and for minutes at a time. Every time I stop she says, "More pinning bubble?" I swear that, were I to spin like that, I would literally be throwing up. Chloe barely gets dizzy. I'm sure that has to do with our vision/balance connection being so different.

I'm glad to finally be on the vestibular activities band wagon. I think it's good for her and can tell she really enjoys it. Linda says that, as Chloe gets older, she'll recognize when she needs vestibular activities and do them herself or ask for them.

Pulmonary

80 Days Intubated - with a tube down her throat and a machine breathing for her.

11 Months on oxygen during the day.

18 Months breathing with oxygen at night.

At 2 years 5 months she is officially released from pulmonary!! Such a big girl!

We love Chloe's pulmonologist, Dr. Sobande but, I must say, I wasn't sad to leave without making a future appointment. Dr. Sobande was thrilled with Chloe's growth (25.3lbs and 2'9"). According to the curve on his computer she's approaching 50th %ile in both weight and height. Seems hard to believe for me but it's pretty amazing!

Chloe's going through a phase where nobody can hold or touch her but me. She wouldn't let Dr. Sobande hold her but she gave him a high five and chatted with him a bit. Her smile is quite charming - he couldn't smile at her enough and just shook his head at how happy he was - saying he wished we were his last appointment so we could just visit for a while. She does have that effect on people.

We're so happy for Chloe - our big easily breathing girl. :-)

P.S. She had an appointment with Dr. Bloom, her opthamologist, today. He's happy and made no changes. We'll see him again in three months. :-)

Soft Lenses a Bust

We put the soft lenses in on Friday. I had to check Chloe's eyes at least every 15 minutes because they wouldn't stay in place. And, by "check her eyes," I mean pry her eyes open to get a really good look because the soft lenses are really hard to see on her eyeball. Then stick my finger in her eyes to move the lenses back up from underneath her bottom eyelid (where they seemed determined to be.) Chloe is usually pretty good about eye drops, insertion, and removal of lenses. I don't usually get resistance. By the end of day one she was kicking and screaming. And I can't blame her. After the first hour Dave was ready to give up. "You can't keep this up. It's ridiculous. We just need to go back to the hard lenses." But I was determined. I had already called the Vision Center to complain and they asked me to keep with these lenses for at least 2 days. Checking them now wouldn't do any good because her eyes need to adjust to them.

By the end of day 1 her left lens popped out 4 times.

1. Found after a hands/knees search of the bedroom, hallway, living room, dining room.

2. I saw it pop out on its own as Chloe ate breakfast.

3. I found it in the dishwasher. Don't ask.

4. We went out for Solana's end of the year pizza party. I checked her eyes and gave her drops about a million times during the party and 10 minutes before we left. One was missing when we got home.

That was it. Forget it. We're going back to hard lenses. We're waiting right now for the backup pair to come back from getting cleaned...

Soft Lenses Begin Tomorrow

Fingers crossed! I've been feeling waffley about switching Chloe to soft lenses. If you recall, we were having a horrible time with Chloe's hard lenses popping out and I'd spent about 5 hours on my hands and knees searching for contacts the week prior to October 6th. We found a few but completely lost three. We met with the doctor and vision center on Oct 6th and decided to switch her from gas permeable (hard) lenses back to soft.

The vision center went to work finding a company that would give us free lenses until we found the correct fit for Chloe. But I decided to keep Chloe in her hard lenses until they were lost. No reason to just throw them away. After all, the purpose in switching is to avoid wasting money. So an entire 5 weeks pass and Chloe pops out a lens a total of 4 times. That's it. Four times in 5 weeks! And we found the missing lens in about 2-4 minutes each time (Solana was so proud because she found it twice.) Isn't that the way it always goes, though? As soon as you decided to make a change from something completely awful that awful thing becomes not so bad. I began to second guess myself. Was I being overly dramatic? Was I crying in front of Chloe's therapists because I don't have enough patience? No. That's just the way it goes.

Well, Chloe finally lost a contact today. Whew! I thought that was NEVER gonna happen. Funny story. It happened at Old Navy: Solana and I are walking around looking at the floor because we're sure we can find it. (Delusuional?) The manager asks us if we're finding everything ok. I'm embarrassed and start nodding my head but Solana is anxious to tell everyone in the store that her baby sister lost a contact. The next thing I know, half the Old Navy team is walking around with their heads down. We finally give up and the Manager, very sympathetic to my plight because she has two middle school boys in contacts, takes my number just in case. We pay and leave. Half an hour later I get a call from the manager. The introduces herself on the phone and I think, "NO WAY!!! She found it!" But no. "Is this Cyndi? Hi. You left your wallet on the counter when you paid." Doh! So it was a blessing that Chloe lost her contact in the store because otherwise I wouldn't have left my phone number with the manager?

ANYWAY. We'll put the soft lenses in tomorrow. Wish us luck! The insertion and removal of soft lenses is a totally different process than we're used to. We were really good at the hard lenses. Let's hope this transition is an easy one. And that the lenses STAY PUT!

Back to Soft Lenses

We visited Chloe's Eye doctor today. And her Vision Therapist (VS), Linda, came with us. We spoke about the fact that Chloe is turning her head so that she appears to be using her left eye more but, after looking at her, Dr. Bloom still thinks she's finding her "null point." Sometimes people with Nystagmus (involuntary shaking of the eyes) can turn their head slightly until they find the sweet spot where their eyes calm down and they see better. That sweet spot is called the null point. So we're still not going to do any patching. And that's ok with me.

We also spoke about the fact that Chloe is losing lenses often. They fall out completely on their own without her rubbing them at all. In fact, Chloe's Early Intervention Specialist (EIS) witnessed one pop right out of her eye as we were sitting and playing. All she did was blink! The plan: we're going to try soft lenses again. My stomach is still a little queasy at the idea. The reason we switched from soft to hard lenses before was because we were losing too many soft lenses. Hard lenses supposedly stay put better. But both the doctor and vision center believe that we can get a better fit now that Chloe's older and bigger. It's a plan and we're willing to give it a shot. I've spent probably a good 5 hours on my hands and knees this past week looking for lenses (I'm NOT exaggerating). In fact, Chloe lost her third lens in a week 30 minutes before the VS and EIS arrived for a visit on Tuesday. I was so frustrated that I burst into tears when they arrived. That was slightly embarrassing, especially considering the fact that Chloe's new Occupational Therapist was with them. "Hi. Nice to meet you. I'm really not crazy. I promise." Fingers crossed on the soft lenses!

Otherwise, Chloe is doing great. We still don't know how well she can see. The good thing is that she compensates really really well. It's great that she has the ability to compensate without her vision. But you can see how it makes contact lens tracking difficult. Chloe's behavior doesn't change when she loses a contact. Heck, it doesn't even change when I take both of them out and before I can get her glasses on. She'll run off to play and I'm chasing her around saying, "Hey! Get back here little one! You can't even see!" You'd never know.

Her fine motor is improving. She loves looking at books and playing with her toys. We learned that balance is an issue with her and that's partly why she has no interest in stacking blocks and playing with small toys. So we put her in her little chair so that she's supported all around. And suddenly she was stacking and playing with blocks! She didn't have to worry about balancing herself so she could focus on what was in front of her. Amazing!

Chloe's VS is always complimenting me on how I interact with Chloe. She loves my frequent verbal cues and how I guide her with my words. I feel like I'm just talking to her the way any parent talks to a language-learning toddler. Maybe just a tad more since Linda once mentioned the importance of positioning words for vision-impaired children (in, out, up, down, on under). It's about body awareness and teaching them to know their place in their environment. But she is insistent. "I can really tell you work with her a lot, Cyndi." "Your verbal cues are so great." To the OT, "Cyndi is such a great parent. I show her a book one week and she's gone out and bought it by the next." I love hearing that, of course. But sometimes I don't even know what I've done to earn a sudden enthusiastic compliment. Today she said, "Cyndi, you should become a Vision Therapist. Your instinct is amazing. You have better instinct than most Vision Therapists I know." I'm writing this 1. to pat myself on the back in public; 2. so that Chloe will read this in the future and think I'm great. But also 3. because the seed is planted. And I know that's what Linda was doing. She keeps talking about retiring. The question is whether or not I feed and water it. Probably not...probably.

Eye update - Nystagmus - update

At Chloe's last vision exam I pointed out to the doctor the fact that Chloe's been turning her head again. It appears that she wants to look through her left eye. I thought we had solved this problem when we discovered the dramatic change in her right eye prescription. But now her head turn seems to have returned. This makes me nervous. Could her prescription have changed dramatically again? It's already a 9. That's pretty significant.

The doctor took a look at her and mentioned her nystagmus (this is where you eyes sort of shake from left to right involuntarily) and that she's finding her "null point." I had sort of noticed her eyes shaking. It's not really obvious but if you look close you can see it. I tried to convince myself it wasn't there. According to him, Chloe can turn her head until she finds her null point - the point at which her eyes stop shaking. He also said that Chloe has had so many problems with her eyes that there are any number of reasons for her nystagmus. He warned me against worrying over internet research (that he assumes I'll do). I left his office without a feeling of comfort.

Then Chloe's Vision Therapist, Linda, came over for a visit on Thursday. She feels like Chloe's not moving around quite as steadily as she was a few weeks ago and that she's not using her eyes together quite as well. I would have to agree. Again, pointing things out to me that I know but don't want to admit to myself. I expressed my worry over the doctor's diagnosis. What if he's wrong? I mean, he only looks at her for a few minutes... She asked if I'd considered getting a second opinion. I don't know why but I'm having such a hard time with that. Can anyone tell me why I find this so difficult?

We have an appointment in about two weeks. The vision therapist has kindly agreed to join us for the appointment. She's so much more well-versed in the language of vision than I. I'm really glad she's going. Also ,the doctor is usually pretty fast and I always feel like I'm sitting on his shoe and hanging onto his leg asking questions as he's leaving. Linda won't hang onto him like that. She'll look at him and smile. And her smile will say, "You might as well sit down doctor. You ain't goin' nowhere an'time soon."

Until then, let the worrying continue...

Update: I think I just figured out why getting a 2nd opinion makes my stomach feel queasy. 1. I want to give this doctor the benefit of the doubt because he knows her really really well and I can't imagine trusting another doctor who just met her and (maybe) read her file.
2. I already switched Chloe's eye doctor once. I'd like to think I made the right decision at that time.
3. I hate ruffling feathers or offending people. (Just being honest. This actually did occur to me.)

New Contact

We just got back from the hospital...to pick up a new pair of contacts. I won't say any more about how this makes me feel because I prefer to not use curse words on the blog.

Brian's trying to finagle 3 or 4 pair from our vision insurance (they usually pay for 1) and we're waiting to hear back on that. In the meantime, we're on our second pair (plus a single). I have a sneaking suspicion we'll get to through 3 or 4 pair before he even hears back. At $100 a pair keeping Chloe's eyes contact-ed is going to be an expensive endeavor.

The good things are that: 1. They were able to get the first pair as a "doctor's RX change" which means it's free for us. 2. Brian's trying to get us those extra free pairs covered by insurance. 3. Every 2nd pair is discounted 50%. So they'll cost $100 and then $50 then $100 then $50, etc. 4. I asked Brian if he could charge the insurance company for all the $100 pairs and just let me pay for all the $50 pairs (at least until we run out of coverage) and he said "heck yeah!"

Ok. I guess I feel a little better now. I just need to work on Chloe's communication now so that she can tell us when she loses a contact. :-)

Close Call

We picked up Solana from soccer camp and the weather was beautiful so we spent an entire hour on the playground. I was glad Chloe left her sunglasses alone the whole time. Then we got to the van and I took them off. Surprise! Look what was sitting UNDER her eye!

Then I was REALLY glad she left her sunglasses on the whole time - they're the only things that saved her contact. Whew! I had them check the fit on her contacts just the other day. We're hoping her eye just needs a little more time getting used to the contact. Fingers crossed!

Attacked!

The Victim

The Defendant

After reviewing testimony from both sides the Jury finds the defendant NOT GUILTY of Assault in the 3rd degree. (They noted that the victim physically assaulted and injured the defendant and that the defendant's self-defensive tactics resulted in the victim's injuries.)