Contact Drama

The last several months of Chloe wearing a contact lens have been nothing if not drama-filled. Dave, my mom, and my sister have been lucky enough to hear me b!&ch and moan about her contacts and the vision center pretty regularly. I thought it might be *fun* to record all this excitement in one spot. Posterity, right? Maybe Chloe will look back on this post one day and shake her head at the absurdity of it all.

- A couple of months ago the vision center folks informed me that Chloe's lenses were supposed to last three months. I found this news slightly disturbing since they told me "one month" during my training. Fortunately for them, I have yet to discard a lens. They've all been lost so the fact that I'm almost through a year's supply of lenses in three months...well, that's on me.

- Then I decided to switch Chloe to the hard lens (a.k.a. gas permeable lens). The vision center guy (we'll call him Skip) schedules Chloe for a fitting on the same day as her next appointment. Guess what happens the morning before that appointment. You got it. We lose a lens. Fortunately, Skip gets us a replacement at no charge.

- After Chloe is fitted for a hard lens Skip orders her lens and says it should arrive in 4-5 business days. This is fine but I'm in no particular hurry considering Chloe has a brand new soft lens in her eye now. Three weeks later we happen to be at the hospital for a pulmonology visit and I decide to stop by to check on the lens (since I haven't heard from them). Skip searches around and finally finds the lens but he doesn't have the special solution or plunger necessary to remove the lens. (Seems like maybe he should have ordered them all together...?) Again, I'm in no particular rush, so I don't make a big deal out of it. He schedules an appointment for us to come back 3 days later to place Chloe's new lens and to train me on it.

- Three days later we arrive for our 830am appointment. This is really inconvenient considering the fact that we're all usually in our pajamas and sleepy-eyed at that time but it was the only time that worked in order to get back home to get Solana to school on time. We arrive and Skip isn't there. We wait. The girls call him. We wait some more. I suspect he forgot our appointment. 35 minutes later I see him rush in. 10 minutes after that he comes to me with a story about how the plunger hasn't arrived and FedEx this - shipping room that - excuses. I give him THE LOOK. (This is a look that all the women in my family are born with the ability to make. It can chill the blood and has been known to turn people to stone.) "Skip. You realize we've been here for 45 minutes and we live a half hour away? This is decidedly inconvenient, Skip." He offers to come to our house. Agreed. Skip lives to see another day.

- The following evening Chloe's in her high chair and I'm feeding her. I can't see her contact. You've got to be kidding me! It's gone! Chloe has been in 3 places since I last checked her lens. She played on her blanket, took a bottle on the couch, and ate dinner in the high chair. Dave and I spend 45 minutes on hands and knees but there's no lens to be found. How could I move her twice without checking for a lens! Aaaahhh!

- The next morning we're back at the hospital and, fortunately, the plunger has arrived! Chloe gets her new hard lens. As Skip is demonstrating how to handle and clean the lens I look at the bottle from which he just took the lens. On the lid is written, "C Jordan L." I think the C must stand for "Chloe" and the L for "Left Eye" but what's Jordan? I ask and discover that Skips about to put some other kid's contact into Chloe's eye! I flatter myself and decide that my incomparable beauty must make him nervous. This is the Wednesday before Thanksgiving.

- The new contact seems to be working well. I'll be darned if Chloe isn't already seeing better. Then, on Saturday morning, I'm cleaning her lens and am having trouble getting all the proteins off it. Skip did mention that these lenses are more durable than the soft lenses. I rub harder and my very short fingernail clips the edge of the lens and chips it like an eggshell. The chip feels sharp. This can not go into her eye. It's Thanksgiving weekend. I call the doctor on call and there's nothing he can do. These lenses are special ordered and they wouldn't have any in stock. (Once we're settled into her new lens and past this trial stage we'll always have two at home.) They'll need to order one. Chloe will have to go all weekend and longer without anything on her eye. I'm freaking out but it is what it is. There's nothing to be done. The doctor asks where the chip is and comments that sometimes patients have chips on the inside of their lens and don't even know it. After Chloe's nap I start thinking and finally decide to take my finest softest nail file to her lens and file it until it's smooth. Wash. Rinse. Wash. Rinse. I put it in and she's fine. No complaints. We're going in tomorrow for a scheduled checkup plus they got the replacement in today.

Seriously, Chloe is surounded by a bunch of nincompoops! I don't know how she can put up with us!

Note: Regardless of Skip's screw-ups he does really seem to know his contact lenses and works closely with the leading researcher and developer in the nation. He always gives thorough and knowledgeable answers to all my questions. He may be awful administratively but I do trust his knowledge about contacts. I'll just make sure to always check Chloe's lenses before putting them in her eyes...

Happy Thanksgiving

Wow this has been a busy month. I think I'm going to try and do a bullet-style summary just to keep it easy:

• 
  Dave was gone for 11 days toward the beginning of the month. We were super happy to have him back home and decided we definitely prefer when he's here :) We managed to keep everyone fed, clean, and happy, and even the house was in fair condition. But oh were we thankful to get him back!
• 
  Chloe saw the pulmonologist. I was nervous for two reasons. 1. He would have an opinion on her weight gain and that always makes me nervous. 2. If he was happy with her progress he might take her off oxygen. What if that changed her Synagis status? But we got good news! He said these words, "I am happy with her growth. She is doing great." Yay! He showed me her growth chart and, at 17lbs, Chloe is ON the growth chart for her adjusted age of 11 months! This is so awesome! I never anticipated she's actually be ON the chart. Of course, she's dangling at the very bottom but still! And he knew very well that her oxygen status might have an effect on her Synagis approval. He recommended leaving her as-is until after the winter. At that time I'm to call to schedule a "sleep study" so we can possibly lose the oxygen for good. Now, I'm not going to comment on whether or not he specifically kept her on oxygen because of Synagis. I mean, I can't read the guy's mind... I'm just glad he made that choice! Can I just say that I am thankful for Chloe's wonderful pulmonologist? Seriously, I'm going to write him a love letter one day because I love him!
• 
  We took a trip to the Pediatrician's office to get Chloe's first dose of Synagis. Yay! And the pediatrician also mentioned Chloe's growth. As she leaned over to show me the growth chart, and the fact that Chloe is on it, I knew what I'd see. But did I decline the opportunity to look? Heck no! I happily gazed at that little curve. It starts to flatten for most babies at this age but Chloe's curve is still going upward! I know some babies who have a heck of a time growing so this is certainly something to be thankful about.
• 
  Chloe is now sporting her very first gas permeable lens. So far so good. She's had it in for two days now and hasn't fussed about it at all. Supposedly, she builds her callous during the first two days so I'm thankful we got through those days without any apparent discomfort!
  We have two little bitty teeth poking through her bottom gums. Solana's first tooth didn't break through until she was a year old and it took another 3 weeks or so for it to come all the way out. So I'm not surprised to see Chloe's first teeth breaking through right before she's one year adjusted. I am a little bit nervous, though. Two words: Enamel Hypoplasia. Also known as Preemie Teeth. Chloe has all the risk factors for teeth erupting sans enamel. I'm excited about her first teeth coming in - It's such a milestone - but nervous, too. Chloe has just about every risk factor: extreme prematurity, intubated for long periods of time (I would call 90 days a long time), feeding problems in calcium deficiency (2 months on only IV nutrition). Yep. Chloe's an ideal candidate. I see a pediatric dentist in our near future. Um. Thankful that pediatric dentists exist...?

Well, enough for now. A happy babbling baby just work up for her nap. Gotta go tend to the princess :)

Synagis

I just learned that Chloe was almost denied a second year of Synagis!

Synagis is the shot to help prevent RSV (Respiratory Syncytial Virus). Very young babies are at risk for complications if they contract RSV. But, as you can imagine, so are babies diagnosed with Chronic Lung Disease of Prematurity. For otherwise healthy kids and adults RSV usually presents itself as a simple cold, cough, runny nose, etc. And for this reason, it's very scary to me. Someone with a simple cough could infect Chloe with RSV. I called her pulmonalogists office the other day to ask exactly what are her risks if she got RSV. Bacterial infection, dehydration, difficulty breathing, increased oxygen requirement - and hospitalization. Sometimes I get the feeling people think I'm overprotective of Chloe (not that I care). But if you've ever watched your child bradycardia, go limp, and desat until they turned gray right in your arms...or if you spent 150 LONG days juggling home life while traveling to and from the NICU to visit your baby - then you would probably be pretty scared of RSV, too. Prematurity doesn't end when they come home...


I also learned that the only reason the insurance company approved her was because she's still on oxygen. I've never been so grateful for Chloe's pulmonalogist! Thank goodness for his last order! I just received the letter from the insurance company in the mail. It states that she's approved for 5 doses (they're given monthly) and that will get her through RSV/flu season. We go visit the pulmonalogist on Thursday. I don't think they'd pull back approval if her oxygen status changed but I'm scared to ask. I'm sure they were less than anxious to approve synagis (at $1200 a month).

For now I can take a little sigh of relief. In the safe confines of my house, that is, because the actual Synagis still hasn't arrived for Chloe to get her first dose.

Physical Therapy

Chloe gets physical therapy twice a month through a state program called Help Me Grow. It's a free social program for which I am VERY thankful. They come to our house, which is wonderful! She has a case worker and early intervention specialist who follow her. We make 6 month goals and work toward them with a PT, Occupational Therapist, and Speech Therapist. Chloe's team is exceptional and I love having them!


Thanks in part to this team, Chloe is finally a sitter. She can sit for unlimited periods of time playing with books, blocks, you name it (Bluebell even shares her toys if I'm not looking - blech!) And that celebration lasted a whole day...


So now we're working on crawling. Our first real crawling visit with the PT came on a day when Chloe's case worker happened to be visiting. The case worker was asking me lots of questions and trying to come up with new goals, so my attention was drawn away from the PT. She showed me briefly what she was doing with Chloe but I didn't get the hands-on instruction that I normally get for new exercises. The following three days kind of sucked. I just couldn't quite get Chloe to do what I wanted her to do. (She's a smart little turkey and quickly learns how to wiggle out of unappealing positions.) After ending several sessions with me soaked in sweat and Chloe laughing at my incompetence I broke down and called the PT. Within 30 minutes she was back at our house going over the exercises in greater detail.


Now, this is my only experience with a PT but I'm going to go out on a limb and say she's a good one! And she's never once told Chloe to "stop crying!" (That comment's for my friend, Mel.) ;-)


Our goals for now are to improve Chloe's strength between her shoulders and on her hips. Muscles used for crawling. After three days of sucessful exercises Chloe can do this....

Angela's At It Again

My friend, Angela, just finished some amazing work on family photos for us. I'm so excited about the slideshow she put together for us! I think I've watched it about 40 times! Here's the link. I was asked to download a flash player thingie in order to watch the slideshow. It's a super quick download and then you'll see the slideshow. Make sure to have your volume on because she coordinated the pictures with the music. It's a very thoughtful and loving job. I told her that my house would be an Angela Maggard Photography gallery very soon :-)

http://www.photodex.com/share/pixiedust2009/k4a29mg4

Also, look under the main viewer to see some of her older slideshows. The slideshow of Chloe's homecoming is on there. Take a peek to remember just how tiny she was. She really is amazing!

Piano Virtuoso

Chloe's new glasses have turned her into a piano virtuoso!

Chloe in Glasses

How cute is this face? Go ahead and tell me. I love hearing it :-D

We're still working on keeping the glasses on. She doesn't rip them off but she likes to use her little fingers to slide them down and into her mouth. She lasted two hours last night so she's getting much better!

Chloe had her third post-surgery (that is, post-second cataract-surgery) follow-up today. The doctor said her eye looks good. I asked him what that meant and he said that her eye reflected the proper red color at him when he shined a light in it. I think that means they got out all of this secondary cataract. He's reassured by the fact that I'm able to successfully keep the patch over her good eye for four hours a day. This tells him that she's able to see out of the left eye enough to tolerate the patch without much argument. I agree that she can see well enough to look at her big black and white book and play with toys. I hope this is truly a good sign and not sugar-coating talk... We'll continue to patch for four hours a day in the hopes that we're forcing that eye to grow stronger.

In addition, we decided to switch from her SilSoft lens (this is a soft contact with a firmer center) to a gas permeable (hard) lens. She was fitted for that today. The guy at the vision center tells me that aphakic babies (babies who don't have a lens in their eye) are getting better vision results with gas permeables. Plus, they tend to stay in better. "And the downsides," I asked? He said there were none to speak of except that they take a little getting used to and might be uncomfortable at first. He suggested that Chloe should maybe switch to gas perm. some day and I asked, "Why not now?" No reason so we're going for it. Chloe actually lost her last soft lens on Tuesday - two days before the fitting - and I had a complete meltdown. Crying, pleading with the lens to appear, crawling around the room, snot, swearing at fact that I can't just dress my child and go, life is so unfair. You name it. I was quite the pathetic sight. If this new lens can prevent another one of those it'll be worth it! :) As the technician tried different sizes on her eye this morning he mentioned that she'd develop a callous on the inside of her eyelid. Yikes! So that's why it's uncomfortable at first... Well, we're still going for it. I hope the transition isn't too bad. It seems like it'll be worth it in the long run.