On the fantastic Little Four Eyes facebook page, a mom was discussing how her child was attracted to light - natural light and indoor lighting. Someone posted this great article that I'd like to share regarding Aphakic (remember - means no lens in the eye, having been removed post cataract surgery) children (and adults) and their ability to SEE UV light! Fascinating!
http://www.theguardian.com/science/2002/may/30/medicalscience.research
Tuesday, January 21, 2014
Monday, January 6, 2014
Miracles Happen!!!!
As you can tell from the title, we got the best news possible today. But first, here's how the day went. :)
Joel and I were without our usual grandparent team today, so admittedly I was a bit nervous heading into the appointment. (Not that I begrudge them staying home and not traveling in this bitter cold - it was .....today!) On what was supposed to be the first day back from school for Emma, she had another day off due to the cold temps, so off she went to Auntie Tiffy's house in MPLS to hang with her and cousin Addie.
We arrived earlier than planned and checked in at surgery registration to find our usual friendly face was not there! Off we went to get badges and up to the third floor surgery center. We weren't sitting for more than 5 minutes before we were called back, which was great considering Sadie YET AGAIN did not care for her Pedialite before the EUA. She finished her last bottle of formula at 6:30am and was allowed Pedialite until 10:30, but the stinker just flat out refused. That really is one of the harder parts of these appointments; when she cries, all I want to do is feed her, because that's all she wants. Poor gal.....
Look at her stylin' shirt! WE LOVE IT! Got it from Eye Power Kids Wear; they have the most amazing shirts for kids with glasses and these fantastic awareness shirts. It was bound to give us good luck! :)
Her hunger got pretty bad as we were nearing the time to go into the OR, so we distracted her with the usual light up toys. The nurses were all very helpful, and the staff is amazing at Amplatz. Dr. B and Dr. G both checked in with us, and her care team consisted of 4 specialists to check her pressures, examine the eye size and structure, check on the healing with both shunts, and measure the prescription for both contacts and glasses. This is the first time that she did not fall asleep before the appointment, so that was difficult.
She did, however, get to spend quality time with daddy! :)
When we got the go-ahead, it was actually 10 minutes early, much to our surprise and excitement. We said our goodbyes (never gets any easier and this Momma cries every time!), and went to the waiting room. Joel ran down to get us lunch; I never feel comfortable with leaving the 3rd floor.....just doesn't feel right for me.
Sadie's appointment was scheduled for 104 minutes, and after 45 minutes of not hearing anything, we got a little panicky. Usually a nurse (or Dr. B) comes out and lets us know the progress. We kept trying to console each other, saying it must be a good sign that no one said anything, because that meant there was no surgery. Right? Right??????????
RIGHT!!!!
After an hour and 50 minutes, we were called to recovery, and came in to the room to see our baby eating and tired......BUT WITH NO PATCH/SHIELD ON EITHER EYE!!!!!!!!!!!
Joel and I were without our usual grandparent team today, so admittedly I was a bit nervous heading into the appointment. (Not that I begrudge them staying home and not traveling in this bitter cold - it was .....today!) On what was supposed to be the first day back from school for Emma, she had another day off due to the cold temps, so off she went to Auntie Tiffy's house in MPLS to hang with her and cousin Addie.
We arrived earlier than planned and checked in at surgery registration to find our usual friendly face was not there! Off we went to get badges and up to the third floor surgery center. We weren't sitting for more than 5 minutes before we were called back, which was great considering Sadie YET AGAIN did not care for her Pedialite before the EUA. She finished her last bottle of formula at 6:30am and was allowed Pedialite until 10:30, but the stinker just flat out refused. That really is one of the harder parts of these appointments; when she cries, all I want to do is feed her, because that's all she wants. Poor gal.....
Look at her stylin' shirt! WE LOVE IT! Got it from Eye Power Kids Wear; they have the most amazing shirts for kids with glasses and these fantastic awareness shirts. It was bound to give us good luck! :)
We got the koala rocket ship pjs on, new blue socks (she's grown out of the infant white ones!), and the pre-op nurse took care of the stats.
Her hunger got pretty bad as we were nearing the time to go into the OR, so we distracted her with the usual light up toys. The nurses were all very helpful, and the staff is amazing at Amplatz. Dr. B and Dr. G both checked in with us, and her care team consisted of 4 specialists to check her pressures, examine the eye size and structure, check on the healing with both shunts, and measure the prescription for both contacts and glasses. This is the first time that she did not fall asleep before the appointment, so that was difficult.
She did, however, get to spend quality time with daddy! :)
When we got the go-ahead, it was actually 10 minutes early, much to our surprise and excitement. We said our goodbyes (never gets any easier and this Momma cries every time!), and went to the waiting room. Joel ran down to get us lunch; I never feel comfortable with leaving the 3rd floor.....just doesn't feel right for me.
Sadie's appointment was scheduled for 104 minutes, and after 45 minutes of not hearing anything, we got a little panicky. Usually a nurse (or Dr. B) comes out and lets us know the progress. We kept trying to console each other, saying it must be a good sign that no one said anything, because that meant there was no surgery. Right? Right??????????
RIGHT!!!!
After an hour and 50 minutes, we were called to recovery, and came in to the room to see our baby eating and tired......BUT WITH NO PATCH/SHIELD ON EITHER EYE!!!!!!!!!!!
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Needless to say, we were over the moon with happiness and excitement!!!!
We got word from Dr. G that her pressures were phenomenal! Left was at a 10 (a 10!) and right was 19, which is presumed to only get better over time. Both corneas looked crystal clear, and the cracks were no longer visible (although she knew they were there). Both shunts were/are healing quite nicely, and Dr. G removed 2 sutures in the right eye that may have been causing some discomfort recently. Her glasses prescription is not changing, but her contacts will change slightly. The new ones should arrive in 2 weeks, so she can wear her glasses in the meantime. Optic nerves look super healthy, to the point that they don't even look like Sadie ever had glaucoma!
It is a miracle - a full blown miracle. We were so overjoyed, and the tears were flowing. We called our family immediately and praised God above for his love, comfort, and care of our precious little one. Thank you, Lord, for seeing us through the last 7 months!!!
Although Sadie was tired, she ate like a champ, and the amazing thing was that she was not experiencing any pain.
After discussing the next EUA with Dr. G (not until March 10th - can you believe it?!), and thanking her profusely, we were cleared to leave a little bit early after the anesthesiologist checked her out. Before we left, we were also gifted with an adorable stuffed horse from Wells Fargo and $50 to spend at Chili's from Meals That Heal. We feel very blessed.
We got word from Dr. G that her pressures were phenomenal! Left was at a 10 (a 10!) and right was 19, which is presumed to only get better over time. Both corneas looked crystal clear, and the cracks were no longer visible (although she knew they were there). Both shunts were/are healing quite nicely, and Dr. G removed 2 sutures in the right eye that may have been causing some discomfort recently. Her glasses prescription is not changing, but her contacts will change slightly. The new ones should arrive in 2 weeks, so she can wear her glasses in the meantime. Optic nerves look super healthy, to the point that they don't even look like Sadie ever had glaucoma!
It is a miracle - a full blown miracle. We were so overjoyed, and the tears were flowing. We called our family immediately and praised God above for his love, comfort, and care of our precious little one. Thank you, Lord, for seeing us through the last 7 months!!!
Although Sadie was tired, she ate like a champ, and the amazing thing was that she was not experiencing any pain.
After discussing the next EUA with Dr. G (not until March 10th - can you believe it?!), and thanking her profusely, we were cleared to leave a little bit early after the anesthesiologist checked her out. Before we left, we were also gifted with an adorable stuffed horse from Wells Fargo and $50 to spend at Chili's from Meals That Heal. We feel very blessed.
Thank the GOOD LORD! Praise His name for His love endures forever!
Sunday, January 5, 2014
Tomorrow is upon us.......
Tomorrow is Sadie's 9th time under anesthesia......and we pray that surgery is not needed. She will have the pressures checked, and the docs will get a good look at her optical nerves, corneas, size of the eye, etc and measure her eyes to determine the prescription.
Prayers are appreciated for LOW NUMBERS and an easy day for our strong, brave, and amazing fighter!
Prayers are appreciated for LOW NUMBERS and an easy day for our strong, brave, and amazing fighter!
Wednesday, January 1, 2014
Monday, December 30, 2013
FIRST REAL PAIR OF APHAKIC GLASSES!!!!
Thanks to the generosity of fantastic friends and family, we were able to pick up Sadie's first pair of Aphakic glasses!!! We drove to the clinic in Edina to pick them up over Joel's lunch break. Drum roll please.......
She loves them!!! At the clinic she was staring at Joel, Emma, and myself with a big smile on her face. Tears of joy came down my face - they've been coming all day!
Admittedly, they are a bit shocking at first, since they are SUPER thick and magnify her eyes. I have been familiar with this in pictures of other little ones online, but in my own daughter.....it was jarring at first. But we're getting used to them QUICKLY since she has adapted so well and loves them!!! She seems to be seeing things for the first time in months.
Contact lenses are still the way to go, and we get that. But temporarily, while she can't use the CL's after surgery, it's so nice to have a back-up. Plus, if there's a day that we need to jet out of the house and can't battle the strong baby, then we can just try again later and still have the glasses so she can see God's good world. :)
Enjoy the pics!!!
Admittedly, they are a bit shocking at first, since they are SUPER thick and magnify her eyes. I have been familiar with this in pictures of other little ones online, but in my own daughter.....it was jarring at first. But we're getting used to them QUICKLY since she has adapted so well and loves them!!! She seems to be seeing things for the first time in months.
Contact lenses are still the way to go, and we get that. But temporarily, while she can't use the CL's after surgery, it's so nice to have a back-up. Plus, if there's a day that we need to jet out of the house and can't battle the strong baby, then we can just try again later and still have the glasses so she can see God's good world. :)
Enjoy the pics!!!
Friday, December 27, 2013
Sadie's Christmas presents
Our presents to Sadie for Christmas! Merry Christmas, darling!
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| Contact lens cases from the dollar section at Target. :) |
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| Because I'm too lazy to take a picture with my camera and then download it to my computer, I decided to take a picture with my webcam. Hopefully you can all read the backwards print. :) Yes, we did get her other items, such as toys, but these were glasses/eyes related. And super fun! |
Sunday, December 22, 2013
Friday, December 20, 2013
Saturday, December 14, 2013
Saturday Post-Op
As we've normally had surgeries scheduled for the beginning of the week, having surgery on a Friday left us wondering how we'd handle the post-op. Dr. G. to the rescue - she met us at the PWB building on campus where absolutely no one else was in the office. The nice thing was that we got to chat with her for an extended period of time without being concerned that we were taking her away from other patients.
Sadie's eye looks wonderful! We are thrilled with how clear the cornea looks. This morning we got a really good look at where the shunt(s) is located - it's a very tiny plastic tube that we can see at the very top of her cornea (the blue part), but you can only see it if you are shining a very bright light in that area. It's fascinating, and gruesome at the same time. :) We discussed glasses vs. contacts further, and we have more information to understand where Dr. G. is coming from when she requests that Sadie should not wear the contact in her surgical eye for up to 4 weeks. When the shunt is placed, there is a very tiny plastic piece underneath a fold in the very upper part of her eye, and the tube reaches down into her cornea. The fear is that while this area is healing, the contact could not only irritate and possibly infect the surgical area, but there is the possibility that the contact lens could go underneath the fold and behind the eye.
All together now......"GROSS".
So, we're working on a temporary pair of glasses, yet again. They were not able to check her prescription, so we're getting a lens for her that is akin to a drug store lens - very simple prescription but SOMETHING while she can't wear both contacts. Our amazing new friends loaned us two pairs of their daughter's glasses that she used when she was Sadie's age. They are so generous!!!
Hang in there, Sades! We're getting closer to a more stable life for you, my love!
Sadie's eye looks wonderful! We are thrilled with how clear the cornea looks. This morning we got a really good look at where the shunt(s) is located - it's a very tiny plastic tube that we can see at the very top of her cornea (the blue part), but you can only see it if you are shining a very bright light in that area. It's fascinating, and gruesome at the same time. :) We discussed glasses vs. contacts further, and we have more information to understand where Dr. G. is coming from when she requests that Sadie should not wear the contact in her surgical eye for up to 4 weeks. When the shunt is placed, there is a very tiny plastic piece underneath a fold in the very upper part of her eye, and the tube reaches down into her cornea. The fear is that while this area is healing, the contact could not only irritate and possibly infect the surgical area, but there is the possibility that the contact lens could go underneath the fold and behind the eye.
All together now......"GROSS".
So, we're working on a temporary pair of glasses, yet again. They were not able to check her prescription, so we're getting a lens for her that is akin to a drug store lens - very simple prescription but SOMETHING while she can't wear both contacts. Our amazing new friends loaned us two pairs of their daughter's glasses that she used when she was Sadie's age. They are so generous!!!
Hang in there, Sades! We're getting closer to a more stable life for you, my love!
Friday, December 13, 2013
EIGHTH procedure......sigh.
After the EUA was rescheduled from Monday the 16th to today, Friday the 13th, we frantically changed our schedule, canceling two appointments for the morning and asking for help when it came to my theatre performance that night. My parents graciously rescheduled their return to the midwest from Florida and were able to come and be with us.
After being delayed for about 45 minutes (MUCH better than we assumed after being scheduled for an early afternoon procedure), Joel and I went into this day being more mentally prepared that Sadie would most likely need a Baerveldt shunt placed in her right eye today, and we were correct. The good news is that her left eye (having been worked on November 11th) is handling the pressure quite well and was at a 16! (As a reminder, anything under 20 is good.) Thank the good Lord! Finding out her right eye was at a 40 was a blow, considering we've been so diligent about the glaucoma drops, but if the shunt is the way to go, that's obviously the right decision.
Sadie was a trooper as usual; we're always amazed by her eagerness to eat after being under anesthesia. Maybe when she's older it will be harder on her tummy, but she gulped down almost 4 ounces of Pedialite right away and another 4 ounces of formula. Good girl. :) Her post-op nurses were wonderful as usual, and the best news of the day was that because she's past the 6 month mark, she didn't need to stay for the previously required 2 hours in recovery!
Dr. G. told us that yes, there was another crack in her right cornea, but that SHOULD heal after the pressures go down. There was a suture coming out in the left eye, so she took care of that. She also told us that Sadie was a fighter in the OR, showing the nurses and doctors her strength when they were trying to administer meds and tubes. That's my girl. :)
Although this is her EIGHTH surgery in 6 months, we pray and hold on to hope that the Lord above knows what He is doing and that this is the right path for our daughter's health and vision. She amazes us everyday.....we are so lucky to be her parents and learn what real strength is!
Wednesday, November 27, 2013
New Book
What we got in the mail today from Auntie Katie and Unkey Davey.
Jack Wears Contact Lenses and Glasses....Just Like You!
So excited to read to Sadie!!!
Jack Wears Contact Lenses and Glasses....Just Like You!
So excited to read to Sadie!!!
Friday, November 22, 2013
A good view into Sadie's visual impairment.
I found this today on one of the fantastic FB forums and groups.
Although incredibly helpful for others (and myself) to understand what struggles Sadie might currently face (and battle in the future as well), it's also quite hard for me to grasp. I would do anything, anything, to grant my baby perfect vision. Although I am near sighted and need glasses/contacts to live everyday life, I no longer take my vision for granted.
I vow to give Sadie every possible experience life has to offer, regardless of her visual struggles.
Although incredibly helpful for others (and myself) to understand what struggles Sadie might currently face (and battle in the future as well), it's also quite hard for me to grasp. I would do anything, anything, to grant my baby perfect vision. Although I am near sighted and need glasses/contacts to live everyday life, I no longer take my vision for granted.
I vow to give Sadie every possible experience life has to offer, regardless of her visual struggles.
Wednesday, October 30, 2013
Saturday, October 19, 2013
Daddy vs. the Contacts
After reading this on eyepowerkidswear.com, Infant Contacts 101, Joel and I decided to have him learn how to put in and take out the contacts. It would be great to have another set of hands that's knowledgeable in case I am unavailable.
Tonight was a great success! Though he admitted being nervous, he triumphed in the right eye after only 2 tries!!! (I had already taken out the right CL.) Way to go, honey!!!!
And not a hint of jealousy from me (who is a contact lens wearer) who struggled for MONTHS to really get it right! :)
And not a hint of jealousy from me (who is a contact lens wearer) who struggled for MONTHS to really get it right! :)
Wednesday, October 16, 2013
Eye "contact"
Looking back on Em's baby photos, I see so many pictures of her looking directly at the camera, from very early on. She got used to mommy being in her face, and I became her paparazzo. :) I have done the same for Sades, taking many pictures of her daily life, trying to capture every moment. What I have noticed from my Aphakic baby is that she has a very hard time focusing on something for more than 1 second (the vision teacher calls it "broken tracking"), so I am unable to get many pictures of her looking at the camera, smiling at me with her amazing beautiful face. It breaks my heart, and it's a new learning experience for me: trying desperately not to compare my little gal to other babies her age, or even her older sister.
But today I got the greatest gift - a picture of Sadie smiling at me. I'm not sure if God knew that I needed a "win" or if the contact lenses are helping her vision. But I know that I will treasure this....forever.
But today I got the greatest gift - a picture of Sadie smiling at me. I'm not sure if God knew that I needed a "win" or if the contact lenses are helping her vision. But I know that I will treasure this....forever.
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| "Hi, Mommy!" |
Tuesday, October 1, 2013
SUCCESS!!!!
I.....GOT.....THE....CONTACT........LENSES.....IN......BY......MYSELF!!!!!
(Ok, perhaps Em assisted by distracting Sadie, but still.)
Do you know how hard this is? Seriously?! It's like trying to put pants on a fish. Just shows what you can do if you HAVE to. Success!
(Ok, perhaps Em assisted by distracting Sadie, but still.)
Do you know how hard this is? Seriously?! It's like trying to put pants on a fish. Just shows what you can do if you HAVE to. Success!
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Monday, September 30, 2013
Renaissance Festival
We were lucky enough to get free tickets to the Renn Fest today, and I'm super glad we went, as it was great weather, and Em had a wonderful time. Sadie slept most of the time, but when she woke up, instead of keeping her in the stroller, I put her in the Baby Bjorn so she could "see" what was going on. I had her big brimmed pink hat on her, covering up her eyes from the powerful rays of the sun. It's so tough to be outside with her glaucoma; it makes me sad that life is so bright for her.
As we were walking up to a vendor to get some ice cream for Em, the gentleman working behind the counter mentioned that Sadie couldn't see from underneath her hat. Maybe it was his tone (don't-you-know-your-baby-can't-see-anything) or look of questioning, but something inside me snapped. "She has glaucoma!", I almost shouted. I'm sure he meant nothing by it, but some days I am able to be patient with the comments and some days the comments trigger my "Momma Lioness" (as Sadie's wonderful ECFE teacher calls it).
Sorry, vendor at the Fest. I'm still learning how to deal with this life that God has given me.
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| Picture of Sades in her hat (from a previous outing). BIG brim to cover her eyes! |
Wednesday, September 25, 2013
Organization for this cluttered mind!
I had a conversation with my dad yesterday; I explained to him that my life has changed in ways I never knew it could. Obviously, having my second blessing in my life was bound to change our family and our lives in wonderful, amazing ways. But, with Sadie's diagnosis, things have REALLY changed. I now live in a world of surgery and doctor's appointments, plus looking at Pintrest ideas for visually impaired children as well as blogs and websites for children with glaucoma. In order to make sense of the chaos, Joel found and bought a fantastic product, "My Doctor Book". I finally got the finishing touches done last night, and I love it!!! I will bring it to every future appointment for Sadie, including our visits to Gillette Children's for physical therapy.
Inside it has space for business cards, insurance information, medicine info (doses, date taken, etc.), and procedural information. I have added tabs for each surgery that Sadie has been through, so I can look back and refer to doctor's notes at any time. I love this!
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