After a year and a half of blogging about Chloe I finally decided to start a blog about our whole family. I realized that these notes will be a treasured documentation for Chloe in the future and I want to do the same for our other prized posession, Solana. I've started a new blog called "La Familia Hendrickson." It won't be the nail-biter that Our Young Shoot was - especially during Chloe's NICU stay and thank goodness for that! But if you ever thought about Chloe and/or prayed for her and would like to check on her status you're more than welcome to take a peek at our family's new blog.
http://www.lafamiliahendrickson.blogspot.com
With much love to our kind-hearted friends out there,
Cyndi
Wednesday, January 12, 2011
Wednesday, January 5, 2011
Visit to the Eye Doctor
We saw Chloe's Opthamologist on Monday. He took a look at her eyes. Covered each one to see her reaction. The look of amazement on that man's face was GOLDEN. He couldn't believe the improvement she's showing in the use of her left eye and commented on how well she's using both eyes! He told me that he gets to know parents of his patients and usually has a good idea about whether or not they'll follow through with patching and he has a pretty strong feeling that I actually do a pretty good job of patching Chloe's eye. "Well, she's patched a full four hours a day, just like you said...?" Apparently it's uncommon for people to do the patching as instructed and he can really see the results of my perserverence. (He thinks it's not easy...and I agree!)
As I'm vigorously patting myself on the back he interrupts me to make a new order. Stop patching for one month. Yay! Wait. What? I'm immediately filled with anxiety. "What if her vision worsens again? Should I be watching for signs and what do I do if that happens?" He seemed pretty calm about it and said I could "self-patch" if I see her left eye crossing a lot, indicating that she's not using it. But he'd rather I just left it alone so he could see what happens after a month.
Have you ever had an argument and then thought of the perfect witty retort - an hour later? That's like me at the doctor's office. I always think of the best questions after I leave. Well, ok. Maybe I'm giving myself too much credit. Often times Dave and Leticia come up with the best questions but who's counting, right? After two days I couldn't stand it anymore and called the office with "their" questions. "You just said patching has helped her tremendously. Why stop? What if her eye reverts? Are we giving up potential vision improvement by stopping the patching? Can you comfort me by telling me this won't cause any permanant vision loss?" The technician called me back and did indeed comfort me. She said that our goal is to strengthen her eye so that we can eventually stop patching. After all, we don't want to patch forever. The doc needs to see how well her eye manages for a month without patching to determine whether or not we're done with it. If he sees regression we'll simply patch again. And there's no need to worry about permanant vision loss by going patchless for one month. Still, I put the patch on for an hour yesterday and tested her eye with her black and white books. She could still see. WHEW!
As I'm vigorously patting myself on the back he interrupts me to make a new order. Stop patching for one month. Yay! Wait. What? I'm immediately filled with anxiety. "What if her vision worsens again? Should I be watching for signs and what do I do if that happens?" He seemed pretty calm about it and said I could "self-patch" if I see her left eye crossing a lot, indicating that she's not using it. But he'd rather I just left it alone so he could see what happens after a month.
Have you ever had an argument and then thought of the perfect witty retort - an hour later? That's like me at the doctor's office. I always think of the best questions after I leave. Well, ok. Maybe I'm giving myself too much credit. Often times Dave and Leticia come up with the best questions but who's counting, right? After two days I couldn't stand it anymore and called the office with "their" questions. "You just said patching has helped her tremendously. Why stop? What if her eye reverts? Are we giving up potential vision improvement by stopping the patching? Can you comfort me by telling me this won't cause any permanant vision loss?" The technician called me back and did indeed comfort me. She said that our goal is to strengthen her eye so that we can eventually stop patching. After all, we don't want to patch forever. The doc needs to see how well her eye manages for a month without patching to determine whether or not we're done with it. If he sees regression we'll simply patch again. And there's no need to worry about permanant vision loss by going patchless for one month. Still, I put the patch on for an hour yesterday and tested her eye with her black and white books. She could still see. WHEW!
Chloe's Crawling!
Actually, it happened a few weeks ago but I haven't been able to get a good video of it (Chloe is hypnotized by the light on the video camera) so my post was delayed. We put the Christmas tree up right after Thanksgiving and I think that was just the motivation she needed. (Second best motivation - dog toys.) She's soooo cute when she crawls. She does that low military-style crawl. You might think that her choice of crawl would slow her down but...no sir-ey! This baby can MOVE! Gone are the days of setting Chloe on a blanket to play and expecting her to sit and happily play with a toy. Our Dyson is acting funny so I think we'll be buying a new vacuum cleaner soon. I forsee a future of more frequent vacuum cleaning...
Thursday, December 2, 2010
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...
- 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...
Friday, November 26, 2010
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:
Well, enough for now. A happy babbling baby just work up for her nap. Gotta go tend to the princess :)
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 :)
Monday, November 15, 2010
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.
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.
Thursday, November 11, 2010
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....
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!
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!
Thursday, November 4, 2010
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.
Monday, October 25, 2010
Babies Grow Up Too Fast
I've been dwelling on a Facebook comment that I read a couple of weeks ago. A friend with a new baby posted something about the fact that her baby is growing up too fast. That's what everyone says. Someone else chimed in with, "I wish there was a way we could make them stay small for longer." My sarcastic self thought, "Ummm. I think I've got the recipe for that but I don't think it's recommended...?" Don't worry. I didn't actually put that on Facebook. I just thought it.
But then I thought some more. And some more. I figured that since I didn't want to type my comment that it probably was because it wasn't very nice. And since it wasn't very nice I should probably think about an attitude adjustment.
Another friend of mine has a daughter who got RSV shortly after she was born ten years ago and is now struggling with all kinds of medical problems. This friend is one of those people that quotes Ghandi all the time and seems to have this never-ending flow of positive energy and thoughtfulness. I love reading her quotes. They're always inspirational. Anyway, she once told me that, "I choose to see the beauty in it." I go back to that comment often. I love it.
So I got to thinking. Yes, it's tough to have a baby with medical problems and to constantly fret about when she'll ever sit, crawl, or walk. Worry about her getting sick or what medical problems are yet to come. BUT, on the other hand, I should also appreciate the fact that I still get to snuggle Chloe without her toddling away, hold her bottle for her and study her face while she eats, carry her around because she still needs me to, etc. They DO grow up fast. But I guess in a way I'm lucky because I get just a little extra time with my little one being, well, little.
But then I thought some more. And some more. I figured that since I didn't want to type my comment that it probably was because it wasn't very nice. And since it wasn't very nice I should probably think about an attitude adjustment.
Another friend of mine has a daughter who got RSV shortly after she was born ten years ago and is now struggling with all kinds of medical problems. This friend is one of those people that quotes Ghandi all the time and seems to have this never-ending flow of positive energy and thoughtfulness. I love reading her quotes. They're always inspirational. Anyway, she once told me that, "I choose to see the beauty in it." I go back to that comment often. I love it.
So I got to thinking. Yes, it's tough to have a baby with medical problems and to constantly fret about when she'll ever sit, crawl, or walk. Worry about her getting sick or what medical problems are yet to come. BUT, on the other hand, I should also appreciate the fact that I still get to snuggle Chloe without her toddling away, hold her bottle for her and study her face while she eats, carry her around because she still needs me to, etc. They DO grow up fast. But I guess in a way I'm lucky because I get just a little extra time with my little one being, well, little.
Wednesday, October 20, 2010
She's Getting Glasses!
Chloe had her second surgery follow-up today. She's doing well after surgery. In fact, we've really enjoyed this good week off from patching and the dreaded contact lens. (She's actually been wearing a hard eye guard over her left eye and only seeing through her [good] right eye since surgery.) Dave and I are amazed at how much better she obviously sees when only looking through her right eye. I'm convinced that some of her developmental delay can partially be attributed to her frequent lack of vision. If you think about it, she wears a patch over her good eye for four hours a day. That's four hours a day of significantly impaired vision! The thing to remember is that she will catch up in the other areas but we have a limited window in which to train her brain to use that left eye.
To answer a question from our friend, Jen, Chloe's prescription strength in her left eye was +23 but they're changing it to +18. This is good, I guess. It means (supposedly) her eye is getting better. I take this with a grain of salt and just hope that they doing they best job they possibly can when deciding on her prescription. It's hard for me to believe they can really get the right prescription for an infant by looking into her eyes. Plus, her vision isn't fully correctable. It's not like their assigned correction helps her to see perfectly.
We also talked about the fact that Chloe is near-sighted in her right eye. The doctor put her lens in front of my eye. It's not super bad. Her prescription strength is -2. I'm actually near-sighted with an astigmatism and my eyes both require a correction of -5.5. It's on the strong side and Dave laughs (and I certainly can't blame him :) when I'm feeling around for my glasses and they're right in front of me. The good thing is that it's completely correctable and it makes -2 seem not that bad at all. It does make +18 seem pretty far out there, though! Anyway, we're going to put glasses on her to correct her near-sightedness and give her the best vision possible. Of course, this will only be the case while her good eye is not being patched. Yes, the patching continues with no end in the near future. But it'll be fun to see how she fares with her new glasses. One of her favorite games is pulling mine off my face and waving them around in triumph as I mock-complain that she's so horrible for stealing them from me. (Her squeals are absolutely wonderful during this game!) We'll see how she keeps her own glasses on. The good news is that she's absolutely 100% ADORABLE with her new glasses! I never knew how much I'd love her in them! Really. You'll see. They're ordered and arrive in 3-4 business days.
Seriously, though, the really good news is that she does have such good vision in that right eye. She will read. And for that I'm relieved and thankful. As for playing sports. Well, I'm not so sure about that. The doctor suggested she'd need to wear safety sports goggles for sports since she doesn't have a "back-up eye" in case of injury. We might opt for a more eye-safe hobby like piano or flute... That's yet to be determined...
To answer a question from our friend, Jen, Chloe's prescription strength in her left eye was +23 but they're changing it to +18. This is good, I guess. It means (supposedly) her eye is getting better. I take this with a grain of salt and just hope that they doing they best job they possibly can when deciding on her prescription. It's hard for me to believe they can really get the right prescription for an infant by looking into her eyes. Plus, her vision isn't fully correctable. It's not like their assigned correction helps her to see perfectly.
We also talked about the fact that Chloe is near-sighted in her right eye. The doctor put her lens in front of my eye. It's not super bad. Her prescription strength is -2. I'm actually near-sighted with an astigmatism and my eyes both require a correction of -5.5. It's on the strong side and Dave laughs (and I certainly can't blame him :) when I'm feeling around for my glasses and they're right in front of me. The good thing is that it's completely correctable and it makes -2 seem not that bad at all. It does make +18 seem pretty far out there, though! Anyway, we're going to put glasses on her to correct her near-sightedness and give her the best vision possible. Of course, this will only be the case while her good eye is not being patched. Yes, the patching continues with no end in the near future. But it'll be fun to see how she fares with her new glasses. One of her favorite games is pulling mine off my face and waving them around in triumph as I mock-complain that she's so horrible for stealing them from me. (Her squeals are absolutely wonderful during this game!) We'll see how she keeps her own glasses on. The good news is that she's absolutely 100% ADORABLE with her new glasses! I never knew how much I'd love her in them! Really. You'll see. They're ordered and arrive in 3-4 business days.
Seriously, though, the really good news is that she does have such good vision in that right eye. She will read. And for that I'm relieved and thankful. As for playing sports. Well, I'm not so sure about that. The doctor suggested she'd need to wear safety sports goggles for sports since she doesn't have a "back-up eye" in case of injury. We might opt for a more eye-safe hobby like piano or flute... That's yet to be determined...
Tuesday, October 12, 2010
Vitrectomy today
Chloe just had her vitrectomy. The doctor said the surgery went well. He tried to remove enough so that the film doesn't grow back but he said it's frustrating with little ones because it often grows back on them (as opposed to adults where it does not) requiring future surgeries. I'm glad the surgery went well but a little disheartened about her future vision outlook. He said that kids with this problem can usually only see the big E on the eye chart - and that's only if we continue with the patching and contact lens use.
Deep breath. Don't worry about what's to come. Just do what you can for now.
Deep breath. Don't worry about what's to come. Just do what you can for now.
Monday, October 11, 2010
Chloe's Trying to Sit
I've been meaning to write a post about Chloe's sitting workouts for quite a while but I never seem to have a photographer around when I work with her. It's amazing to me how much time and energy we've put in to get her sitting. I don't even remember working with Solana at all. She just....did it! Chloe has weak upper body muscles so we do lots of exercises to develop her muscles and build coordination. Who knew so many muscles came into play when sitting?!? Here's just a sampling of what we do.
Chloe's PT lent us a big red exercise ball. I put a blanket on top so you can't really see its cherry red color in these pictures. We already gave it back and I don't really miss it in our living room. :-) I also do these same exercises by sitting on the floor with my legs out in front of me and placing Chloe on my knees.
1. I set her on top of the ball and roll the ball a few inches toward me. Chloe is forced to use her back muscles to hold herself up. Notice her "wings" are out. She uses her arms to help maintain her balance. She should stop doing this eventually - once she gains strength.
2. Now I roll the ball away from myself and Chloe is forced to use her abdominal muscles to sit up straight. She's in the process of pulling herself up here. It almost looks like she's doing a situp - you can really see those abs working!
3. Now I put her on her belly. I work for a while to make her straighten her arms. I push the ball away from me and she's forced to use the muscles across the top of her back. We find lots of creative ways to get her into this position around the house. Those muscles (between her shoulders) need lots of strengthening so she can use her arms to help her sit.
She's able to sit for a little while. We have a few great toys that are motivation enough to keep her up.
I think she enjoys sitting up.
She looks proud of herself but I don't think she realizes...
She's beginning to lose her balance.
She doesn't yet know how to use her hands to catch herself. Once her balance is lost it's all over.
She didn't even cry. She just laid there for a moment before rolling over. Then I sat her up and she tried again.
Her progress is very VERY slow. We're used to slow progress with Chloe and take what we can get. She'll get there soon enough. Sitting by herself behind the piano for even a minute is tremendously better than what she could do a month ago.
Chloe's PT lent us a big red exercise ball. I put a blanket on top so you can't really see its cherry red color in these pictures. We already gave it back and I don't really miss it in our living room. :-) I also do these same exercises by sitting on the floor with my legs out in front of me and placing Chloe on my knees.
1. I set her on top of the ball and roll the ball a few inches toward me. Chloe is forced to use her back muscles to hold herself up. Notice her "wings" are out. She uses her arms to help maintain her balance. She should stop doing this eventually - once she gains strength.
2. Now I roll the ball away from myself and Chloe is forced to use her abdominal muscles to sit up straight. She's in the process of pulling herself up here. It almost looks like she's doing a situp - you can really see those abs working!
3. Now I put her on her belly. I work for a while to make her straighten her arms. I push the ball away from me and she's forced to use the muscles across the top of her back. We find lots of creative ways to get her into this position around the house. Those muscles (between her shoulders) need lots of strengthening so she can use her arms to help her sit.
She's able to sit for a little while. We have a few great toys that are motivation enough to keep her up.
I think she enjoys sitting up.
She looks proud of herself but I don't think she realizes...
She's beginning to lose her balance.
She doesn't yet know how to use her hands to catch herself. Once her balance is lost it's all over.
She didn't even cry. She just laid there for a moment before rolling over. Then I sat her up and she tried again.
Her progress is very VERY slow. We're used to slow progress with Chloe and take what we can get. She'll get there soon enough. Sitting by herself behind the piano for even a minute is tremendously better than what she could do a month ago.
Saturday, October 9, 2010
Feeding Excitement - Baby Food Making
I'm so excited! Chloe's actually still sitting next to me in her high chair playing with cracker crumbs as I type. As I mentioned before, Chloe does not like any type of texture in her food. We've experienced vomit at the dinner table a few times. 1 - mashed avocado experiment gone horribly awry; 2 - first homemade chicken experience was a grainy nightmare; 3 - "melt-in-your-mouth" puffs that really don't m-i-y-m; 4 - I actually don't remember the 4th but I'm certain there was a 4th.
We had a visit from the Occupational Therapist on Thursday and she suggested that Chloe's vision issues might be partly to blame for her texture issues. She noted that we all look at our food to see what we're about to put in our mouth and that maybe Chloe just can't see the chunks in her food. She's not expecting them so they surprise attack her gag reflex when they hit her mouth. She also said that Chloe may need practice moving food from side to side with her tongue. I'm skeptical because I know of two other babies with similar issues and neither has vision issues but I'll never throw out an educated suggestion.
We're taking a two-pronged approach to the issue. First, I'm starting off meals with a wash cloth routine. I get a clean and rough-ish wash cloth and rub it up her arm and neck and toward her mouth. Then I rub it on her lips and on the inside of her cheek giving her a chance to reflexively attack it with her tongue. This sort of warms up her mouth for what's to come. Then I crumbled up some saltine crackers and put a bunch on the tray for her to play with. She seemed to enjoy moving them around with her fingers. This is another way to prepare her for what's about to hit her mouth. I then sprinkled a few cracker crumbs on top of a spoonfull of pureed baby food and into the mouth it went. No reaction! We continued this over and over and I even started sprinkling bigger crumbs. At one point she was even doing a chewing motion when a fairly large chunk of cracker went in. And not a single gag! This is terribly exciting! We mixed smooth and crunchy! I can't wait to try again :-D I'm using saltines for savory foods and will try graham crackers for sweeter foods.
And speaking of baby food. I just started making it about three weeks ago and am crazy about it! Thank you to my anonymous friend who suggested lentils. I LOVE giving Chloe lentils. They're helping to keep her regular, too! This is always a concern with Chloe. She seems to have small pipes, if you know what I mean. If you have ever considered making your own baby food I strongly recommend it. I don't know for sure if it's cheaper but I wouldn't be surprised. Plus, you don't even need to buy a fancy baby food maker. I just cook in the oven or stovetop, puree in the blender, and freeze in these handy dandy trays ( http://www.toysrus.com/product/index.jsp?productId=4312595 ). The next day I pop them out (very easy to do with these trays) and into a labeled Ziploc and then just use the cubes as I need them. The quality of the food is amazing. Plus, I'm able to buy many more organic foods than stores sell in baby food jars. Some of our favorites are:
- lentils mixed with blueberry juice (the juice is leftover and frozen from when I made blueberry puree)
- lentils mixed with canteloupe
- blueberries (I also mix into yogurt)
- nectarines
- plums
- spinach mixed with blueberries
- peas
- peaches
- green beans
I've also made chicken and that wasn't a huge hit but I've been able to successfully hide it in peaches and nectarines. I also heard babies love pears so I bought a bunch of pears yesterday.
I'm using wholesomebabyfood.com as a guide but have also received a couple of recommendations for Annabel Karmel.
We had a visit from the Occupational Therapist on Thursday and she suggested that Chloe's vision issues might be partly to blame for her texture issues. She noted that we all look at our food to see what we're about to put in our mouth and that maybe Chloe just can't see the chunks in her food. She's not expecting them so they surprise attack her gag reflex when they hit her mouth. She also said that Chloe may need practice moving food from side to side with her tongue. I'm skeptical because I know of two other babies with similar issues and neither has vision issues but I'll never throw out an educated suggestion.
We're taking a two-pronged approach to the issue. First, I'm starting off meals with a wash cloth routine. I get a clean and rough-ish wash cloth and rub it up her arm and neck and toward her mouth. Then I rub it on her lips and on the inside of her cheek giving her a chance to reflexively attack it with her tongue. This sort of warms up her mouth for what's to come. Then I crumbled up some saltine crackers and put a bunch on the tray for her to play with. She seemed to enjoy moving them around with her fingers. This is another way to prepare her for what's about to hit her mouth. I then sprinkled a few cracker crumbs on top of a spoonfull of pureed baby food and into the mouth it went. No reaction! We continued this over and over and I even started sprinkling bigger crumbs. At one point she was even doing a chewing motion when a fairly large chunk of cracker went in. And not a single gag! This is terribly exciting! We mixed smooth and crunchy! I can't wait to try again :-D I'm using saltines for savory foods and will try graham crackers for sweeter foods.
And speaking of baby food. I just started making it about three weeks ago and am crazy about it! Thank you to my anonymous friend who suggested lentils. I LOVE giving Chloe lentils. They're helping to keep her regular, too! This is always a concern with Chloe. She seems to have small pipes, if you know what I mean. If you have ever considered making your own baby food I strongly recommend it. I don't know for sure if it's cheaper but I wouldn't be surprised. Plus, you don't even need to buy a fancy baby food maker. I just cook in the oven or stovetop, puree in the blender, and freeze in these handy dandy trays ( http://www.toysrus.com/product/index.jsp?productId=4312595 ). The next day I pop them out (very easy to do with these trays) and into a labeled Ziploc and then just use the cubes as I need them. The quality of the food is amazing. Plus, I'm able to buy many more organic foods than stores sell in baby food jars. Some of our favorites are:
- lentils mixed with blueberry juice (the juice is leftover and frozen from when I made blueberry puree)
- lentils mixed with canteloupe
- blueberries (I also mix into yogurt)
- nectarines
- plums
- spinach mixed with blueberries
- peas
- peaches
- green beans
I've also made chicken and that wasn't a huge hit but I've been able to successfully hide it in peaches and nectarines. I also heard babies love pears so I bought a bunch of pears yesterday.
I'm using wholesomebabyfood.com as a guide but have also received a couple of recommendations for Annabel Karmel.
Wednesday, October 6, 2010
Visit from Peggy
We moved to Ohio in January of 09 - going on two years now. The only reason we decided to move to Ohio was because Dave got a great job that would afford us the luxury of me staying home. We were living in Denver and I loved my job but commuted almost an hour each way to work. I'd drop Solana off by 7am and pick her up at 5:30. 10+ hours in daycare and only a couple of hours a day at home. That wasn't enough for me. Anyway, we moved to Ohio with zero ties. Dave is from San Francisco and I'm from Houston.
So far, we've had two visitors from Texas who were visiting the Dayton area for completely different reasons but decided to swing by for a visit. I find that absolutely amazing and wonderful! First was my cousin in July and last week we had a visit from one of my mom's Houston friends, Peggy. I actually went to HS with Peggy's daughter, Jennifer, and we went to the same church, too. It was great to see a face from home. And Solana and Chloe made out with some great gifts :-) We're actually going to design Solana's Halloween costume around one of her gifts. Pictures to come... Thanks Peggy! It was great visiting with you, your mom and sister!!
(These fuzzy pictures were taken with my phone.)
We had so much fun chatting that their "quick stop to say 'hi' on the way to the mall" magically turned into an hour visit! We had 10 minutes to make Solana lunch, eat, and get out the door for the bus. Somehow, (using the miracle of PB&J) we made it - LOL!
Tuesday, September 21, 2010
Eye Exam Under Anesthesia
I'm sitting in the hospital waiting for Chloe to come out of recovery. She just had an EUA (Examination Under Anesthesia). The doctor just came to speak to me. Chloe will need another cataract surgery. He said this is common in children because their bodies heal so aggressively. He said he doesn't use the term "scar tissue" but my understanding is that it's sort of a combination of scar tissue/cataract regrowth that is currently clouding her vision and needs to be removed via vatrectomy (looks like we didn't dodge the vetrectomy bullet after all). In addition, her right eye (the good eye) is near-sighted. I'm feeling suddenly very bummed. This is not the news I expected to hear today. Once again my optimism backfires and has momentarily thrown me into despair. Or maybe it's my spoiled-ness. I hate it when I don't get what I want.
Later... 
Everything seems fine when she comes out of recovery. My spirits are immediately lifted when I see my little Princess hugging her pony pacie and wearing her hospital gown. She's a sight to behold. She'll be fine and this will just be another notch on her very notch-peppered (and very small) belt. I think we're just beginning to realize her vision impairment. We've been in a wait-and-see pattern for quite a long time now. We're slowly but surely getting to a place where we'll have an idea of her vision. I dared to ask the doctor if she'd need correction on her right eye and he said, "yes, but not for now. We'll just use her near-sightedness as another way to force her left eye to work harder." I didn't ask for any more detail. Who knows what the future has to hold for Chloe? One step at a time.
Tuesday, September 14, 2010
He Knows Me Too Well
As we sat down to dinner last night I commented to Dave, "Babe. I have gained X pounds in the last two weeks since I quit pumping! Can you believe it? X pounds!!"
Dave under his breath, "I'm going to suffer for this, aren't I?"
Pretending I didn't hear him, "WE are going on a strict diet/exercise regiment starting now."
Dave, "Great."
Dave under his breath, "I'm going to suffer for this, aren't I?"
Pretending I didn't hear him, "WE are going on a strict diet/exercise regiment starting now."
Dave, "Great."
Monday, September 13, 2010
Feeding Issues
Chloe had her 1-year vaccinations a couple of weeks ago. Last weekend she had a little reaction to the MMR vaccine. It's completely normal and wasn't a big deal - few red bumps and low fever. I'd much rather her have that than measles, mumps, or rubella, right? But she wasn't eating really well for a few days so I went ahead and took her to the doctor just in case. Chloe's not much of an eater to begin with so I always get nervous when she eats even less than normal. The ped. said she's fine and confirmed the MMR reaction.
I was anxious to get Chloe's weight at the doctor's office. She'd just been weighed a week prior but after three days of somewhat pathetic feeding I was curious if she'd lost weight. Surprisingly, she went from 15lb 1oz to 15lb 8oz! Wow! That was pretty impressive! Then we came home and Chloe took a huge dump in her diaper. I opened up the diaper, "Um, yeah. There's at least 7oz in there...." Stinker... (Note: I actually considered weighing her diaper a la NICU style but we only have one small scale and it's my kitchen scale. Cookoo! Cookoo! I chose not, though.)
I was anxious to get Chloe's weight at the doctor's office. She'd just been weighed a week prior but after three days of somewhat pathetic feeding I was curious if she'd lost weight. Surprisingly, she went from 15lb 1oz to 15lb 8oz! Wow! That was pretty impressive! Then we came home and Chloe took a huge dump in her diaper. I opened up the diaper, "Um, yeah. There's at least 7oz in there...." Stinker... (Note: I actually considered weighing her diaper a la NICU style but we only have one small scale and it's my kitchen scale. Cookoo! Cookoo! I chose not, though.)
Her formula intake seems to have settled around 18-20oz per day. Seems pretty pathetic to me but she just refuses to take any more. She always finishes her purees, though. I called the NICU nutritionist (I'm so thankful to still have a relationship with her!) and she said most babies naturally decrease their formula intake at around a year old and as long as Chloe's above the minimum of 13oz per day and she's gaining weight we're ok. I'm going to try adding a little bit of cow's milk to Chloe's bottles to see if that makes them more appealing and add a third baby food meal per day.
I suspect Chloe has some texture issues we need to work through. She kind of gags if the puree isn't runny enough. I recently made her some chicken puree (my first attempt at making baby food) and it was pretty good but still had a slight grainy texture to it. I mixed it with apples one day, peas the next, and sweet potato on the third day. She ate it all but tried to touch her tongue to her chin with every bite. I'm surprised she opened for each new bite. We'll keep working on it. The pediatrician said to work on different textures for about 3 months or so and call her if I can't get Chloe to easily eat more than soupy baby food. I really really don't want a referral to the Feeding Therapist so we'll work on it.
Any suggestions on how to work on texture issues would be greatly appreciated! I'm trying to enter the world of baby food making and recently bookmarked wholesomebabyfood.com. Wish me luck!
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